Nate's back has puffed out again. Just like last time before he needed surgery again. It happened last Wednesday, and I sent a photo to neurosurgery. Dr. Tulipan said it was fine unless he was having symptoms (headaches), but I should feel free to bring him in if I thought I needed to.
Sunday evening I was working with Nate and laid him down on his back. He screamed in pain at his back, and immediately grabbed his forehead. That scared me. Then yesterday I realized that Nate is supposed to go back to school next week, and he still has this hump on his back. I've named it Clive. Clive freaks me out.
I called neurosurgery again and asked if we could move up his appointment. They said Dr. T had an opening today, so I took it. This morning, twice when Nate laid on his back he got headaches.
Dr. T said it didn't look terrible to him, but it's pretty obvious it's a spinal fluid leak again. If it was the first time this happened, he'd do exactly what he did last time--take him to the operating room to try to close it again. But he did the best he could trying to close it last time, and there's no reason to think that would work this time.
He said it seems this problem is caused by Nate's mild hydrocephalus, which didn't need to be shunted when he was a baby. There is pressure pushing that spinal fluid out of whatever hole it could find.
So the game plan is to have Nate on pretty strict bedrest for two more weeks (no returning to school anytime soon) and return to clinic as we were originally scheduled on Oct. 24. If it still looks the same or worse, we need to consider the shunt option.
Why a shunt? That would regulate the pressure of the spinal fluid, so it wouldn't be forcing its way out of the back. Dr. T is confident that would work, but he wants to give it a couple more weeks to heal on its own.
I asked about a spinal shunt, and he said a shunt in the brain would be much more effective, especially considering Nate's anatomy, which he is very familiar with now after seeing his insides 3 times now.
I also asked about another procedure called the Endoscopic Third Ventriculostomy, or ETV. He told me, as he did when Nate was a baby and we were having this conversation, that he does not do the ETV. He said he has done it once in a lab, and he would not be the one to ask to do this. I told him I had met Dr. Warf from Boston Childrens at the Spina Bifida National Conference, and he said, "Yes, I know Ben." Dr. Warf is pretty widely known as the best in the world at this procedure, which involves drilling a hole in the 3rd ventrical of the brain for the fluid to drain that way instead of inserting a shunt. Dr. Warf is a big believer in this treatment, and if it is successful, you don't have to worry about a shunt malfunction, ever. He offered to help us get in contact with Dr. Warf, whether that would mean traveling to Boston or talking to him remotely, about whether that would even be a viable option for Nate's particular scenario. I don't know if we would go this route, but you know me, I have to weigh all the options.
Dr. T did say that for a child Nate's age (in comparison with a baby), a shunt has a very low probability of malfunctioning. Plus, he would only need it for 3 or 4 months to give his back time to heal. He said at that time he could even remove the shunt. But really that would be an unneccessary surgery and we would most likely just leave it.
I know what many of you are thinking--Colleen, a shunt is no big deal, why are you making this into something bigger than it is? Yes, after five years of no shunt, I would be very disappointed to have to do this very permanent solution to a temporary problem. But obviously I'm not going to let my stubborness get in the way of what Nate needs. At this point, I want whatever it takes for Clive to go away.
So, I'm asking for people to pray for Nate over the next 20 days, that the swelling will go down and he will not need another surgery. But if the swelling doesn't go down, that God will give us the wisdom we need to make the right decision for Nate.
Tuesday, October 4, 2011
Friday, September 30, 2011
So close!!!
Oh my gosh, Team Nate the Great is only $389 away from reaching our impossible $2,500 goal! For awhile I didn't think I'd get half that! SBAK's Walk-N-Roll for Spina Bifida is tomorrow! If you have a few bucks to throw in to help us get closer to our goal, we would appreciate it! Team Nate the Great will be missing Nate the Great, who is still on bedrest, but we will be walking for him anyway. Thanks for everyone who has already donated or bought T-shirts. Mwah!
Here's the link:
http://www.sbak.org/ProgramsandEvents/WalkNRollHome/Donation/tabid/1570/Default.aspx?kwoAdvocateId=3ICS4V6
Here's the link:
http://www.sbak.org/ProgramsandEvents/WalkNRollHome/Donation/tabid/1570/Default.aspx?kwoAdvocateId=3ICS4V6
Friday, September 23, 2011
deja vu 3--Home!
After almost a week in the hospital, Nate was discharged today and we are home. This week was bizarre and scary and stressful, but I choose to see the blessings in it.
I want to document our last couple days in the hospital. Warning--I will try to be discreet, but there will be some talk of bodily functions. If you don't have children, you might want to avert your eyes. :) But it's not just gratuitous pee and poop talk, it's actually a neat story.
I mentioned in my last post that Nate was having bladder pain--this pain was far worse than back pain, and that's just not right. There were several times when Nate was crying because of the bladder pain, and we had to cath him. For those not in the SB world, that means to use a catheter to empty his bladder--not like a foley catheter that stays in, just in and out and done. Many kids with SB need cathed regularly, but Nate has only needed it for certain medical procedures in the past. Poor guy was in so much pain that he was begging us to cath him. He was sometimes not able to empty on his own. But why? After talking with Urology, we came up with a couple of theories.
1. Nate has been very, very constipated since the first detethering surgery. Even when we were home, one night he was having a lot of stomach pain, and we were taking lots of measures to make him more comfortable, but they didn't work well. The second surgery didn't help any. Anesthesia, narcotics, laying down almost all the time, plus the normal SB stuff that causes constipation all conspired against Nate. Constipation can actually cause lots of problems with the bladder, including pain.
2. I think after any surgery, some people have a hard time emptying their bladder because the foley catheter irritates stuff in there. So that could be part of it, only that should be over after the first day.
3. This is just me, but I think he has increased sensation in his bladder since the surgery. So maybe that increased sensation is confusing and scary and might make a full bladder feel more painful?
4. The neurosurgeons and the urologists thought his bladder might be in a bit of shock after the detethering. Some of the nerves that were worked on do affect the bladder, and sometimes they are just in a state of shock for a couple of weeks and then start working again. This is the theory that they all went with. They explained there is a small possibility Nate would never regain the bladder function he once had, but they thought it would come back in a couple weeks.
So the plan was to get him un-constipated ... and to start cathing him. Cue dramatic music. Now, like I said, I had requested that the nurses cath him a few times because he was so uncomfortable. But it's quite another thing (somehow) when a doctor tells ME that he MUST be cathed every 6 hours. Remember when the guy mentioned the shunt earlier in the week? Well, this isn't quite the punch in the stomach that was, but it's probably the only thing secondary to that. Except that it's temporary. He wanted me to wait until Nate pees, and then cath him. But I told him I didn't know how I was going to do that, because Nate is incontinent and wears a pull up, and I don't really know the moment when he pees.
Okay, so for the constipation, we had been doing suppositories, and then they decided to do an enema. Which did nothing. Frightening. A pediatrician mentioned a Go-Litely treatment that involves a tube down his nose? Uh, what's Plan B? I suggested a Miralax clean out. And I don't make that suggestion lightly, because they are not fun. But they work. So we started filling the kid full of miralax and just waited.
In the meantime, I was supposed to learn how to cath. I was being brave. I can do this. I know lots of people who do this, and it's no big deal, and I've already watched 2 student nurses learn how to do it on my son (don't get me started on the student nurses) so if these little girls can do it, so can I.
So here's the kind of miraculous, awesome part of the story. I was getting all my supplies ready to cath him, and Nate tells me, "Mama, I have to pee!" !!! Nate NEVER tells me this. He has told me this twice since his surgery. He could feel that he needed to pee! So I say, go ahead, baby, pee! And he peed in his pull up. Then the nurses come in and I tell them what he just said, and then I did it--I cathed him like a pro (and it didn't hurt him). And guess what. NOTHING came out. Not a drop! He had totally emptied his bladder by himself! Yes!
This was just a cool thing to discover in general, because I never really knew if he emptied his bladder completely. He's never had a UTI or kidney reflux, and his bladder always looks healthy, but his urodynamics have always been a little inconclusive. We always thought he was emptying, but we never really saw it. Until now.
At this point they had already started ordering me cathing supplies and getting me gloves and making a discharge plan that included me cathing him. But now I don't think he needs it. So I went ahead and did the next two caths anyway (midnight and 6am) and got very little out--like not enough to trigger the sense that you need to go. This morning, all the doctors agreed that we did not need to cath him after all. I brought some home just in case he started having pain again, but we think things are working just fine. And now that he can tell me he feels like he has to go ... potty training?
Throughout the night, we were making some progress with the constipation, and this morning about an hour before discharge--Kaboom. That's all I'll say.
So Nate is feeling much better and is really not having any pain, unless I am moving him around and his back is sore. He is on regular Tylenol and Ibuprofen and that's all for pain. He has not yet sat up since the surgery on Tuesday. Dr. Tulipan wanted him to lay flat for about another day. Then he can get up as needed, but he wants him laying down most of the time--sort of like modified bedrest--for the next 3 weeks. (Bring back the dramatic music.) He won't be going back to school for that long either. So far we haven't had too much problem keeping Nate laying down--I think he's afraid to sit up--but he's going to start feeling better very soon. I'm anticipating fights tomorrow.
The outpouring of support, encouragement, and help has been incredible, and humbling actually. I have this resistance to accepting help, but I'm trying to let go of that. I need help, and people like to help (I know I do) so I'm letting them and really appreciating it. When we got home today, my mother in law was here cleaning the whole house. What a nice gift to come home to a clean house instead of a mess. My friend Kellie has organized a meal schedule, where several friends have signed up to bring dinner to the house! How incredibly nice is that? Not having to worry about cooking or cleaning frees up way more time to take care of Nate. Aunt Kathy sent two big boxes of awesome donuts from The Rolling Pin. Blake's boss gave Nate a Nintendo DS and some games and a game card to keep him busy! My parents came to the hospital on Tuesday and stayed the rest of the week, even though it's hard for my dad to take off work, and my mom was just here with us for the last surgery and away from home for a week. And that's not mentioning the cards and meals and gifts we have received from family and friends over the past 3 weeks. It makes a girl feel loved, and it it's even better knowing how much everyone loves Nate.
Nate has really taken all of this probably better than I would have. He gets grumpy sometimes, but that smile is never too far from the surface. Even when laying in a hospital bed, he gives us lots of his wonderful giggles. He may have gotten a little spoiled with all the attention. Tonight he was asking Blake to get him a train or something, and I guess Blake was taking too long because he said, "Why aren't you doing what I tell you?!" :) Georgia has very much missed her mama. She called me twice this week to say, "Come! Home!" From a 2 year old? Heart-breaking. But Blake did a great job of taking care of her (I raised my eyebrows at some of the outfits he picked out, but other than that ...) and she has really gotten closer to Daddy through this, which is a good thing. Now I can't get enough of her, but she's too busy to let me hug on her all day. I'm just so glad to be back under the same roof.
We all have our day-to-day stresses and annoyances and urgencies. But it's experiences like this that help me see the big picture a little more clearly. I keep going back to the two best pieces of advice I've ever gotten, both from my Granny.
1. "God first, then family, then everything else."
2. "If it can be fixed with money, it's not a real problem." In other words, don't sweat the small stuff. Our families and our health are what's important, and the rest of it just isn't a real problem.
Now I'm going to get some rest, and we're going to try our best to stay away from Nashville for as long as possible.
I want to document our last couple days in the hospital. Warning--I will try to be discreet, but there will be some talk of bodily functions. If you don't have children, you might want to avert your eyes. :) But it's not just gratuitous pee and poop talk, it's actually a neat story.
I mentioned in my last post that Nate was having bladder pain--this pain was far worse than back pain, and that's just not right. There were several times when Nate was crying because of the bladder pain, and we had to cath him. For those not in the SB world, that means to use a catheter to empty his bladder--not like a foley catheter that stays in, just in and out and done. Many kids with SB need cathed regularly, but Nate has only needed it for certain medical procedures in the past. Poor guy was in so much pain that he was begging us to cath him. He was sometimes not able to empty on his own. But why? After talking with Urology, we came up with a couple of theories.
1. Nate has been very, very constipated since the first detethering surgery. Even when we were home, one night he was having a lot of stomach pain, and we were taking lots of measures to make him more comfortable, but they didn't work well. The second surgery didn't help any. Anesthesia, narcotics, laying down almost all the time, plus the normal SB stuff that causes constipation all conspired against Nate. Constipation can actually cause lots of problems with the bladder, including pain.
2. I think after any surgery, some people have a hard time emptying their bladder because the foley catheter irritates stuff in there. So that could be part of it, only that should be over after the first day.
3. This is just me, but I think he has increased sensation in his bladder since the surgery. So maybe that increased sensation is confusing and scary and might make a full bladder feel more painful?
4. The neurosurgeons and the urologists thought his bladder might be in a bit of shock after the detethering. Some of the nerves that were worked on do affect the bladder, and sometimes they are just in a state of shock for a couple of weeks and then start working again. This is the theory that they all went with. They explained there is a small possibility Nate would never regain the bladder function he once had, but they thought it would come back in a couple weeks.
So the plan was to get him un-constipated ... and to start cathing him. Cue dramatic music. Now, like I said, I had requested that the nurses cath him a few times because he was so uncomfortable. But it's quite another thing (somehow) when a doctor tells ME that he MUST be cathed every 6 hours. Remember when the guy mentioned the shunt earlier in the week? Well, this isn't quite the punch in the stomach that was, but it's probably the only thing secondary to that. Except that it's temporary. He wanted me to wait until Nate pees, and then cath him. But I told him I didn't know how I was going to do that, because Nate is incontinent and wears a pull up, and I don't really know the moment when he pees.
Okay, so for the constipation, we had been doing suppositories, and then they decided to do an enema. Which did nothing. Frightening. A pediatrician mentioned a Go-Litely treatment that involves a tube down his nose? Uh, what's Plan B? I suggested a Miralax clean out. And I don't make that suggestion lightly, because they are not fun. But they work. So we started filling the kid full of miralax and just waited.
In the meantime, I was supposed to learn how to cath. I was being brave. I can do this. I know lots of people who do this, and it's no big deal, and I've already watched 2 student nurses learn how to do it on my son (don't get me started on the student nurses) so if these little girls can do it, so can I.
So here's the kind of miraculous, awesome part of the story. I was getting all my supplies ready to cath him, and Nate tells me, "Mama, I have to pee!" !!! Nate NEVER tells me this. He has told me this twice since his surgery. He could feel that he needed to pee! So I say, go ahead, baby, pee! And he peed in his pull up. Then the nurses come in and I tell them what he just said, and then I did it--I cathed him like a pro (and it didn't hurt him). And guess what. NOTHING came out. Not a drop! He had totally emptied his bladder by himself! Yes!
This was just a cool thing to discover in general, because I never really knew if he emptied his bladder completely. He's never had a UTI or kidney reflux, and his bladder always looks healthy, but his urodynamics have always been a little inconclusive. We always thought he was emptying, but we never really saw it. Until now.
At this point they had already started ordering me cathing supplies and getting me gloves and making a discharge plan that included me cathing him. But now I don't think he needs it. So I went ahead and did the next two caths anyway (midnight and 6am) and got very little out--like not enough to trigger the sense that you need to go. This morning, all the doctors agreed that we did not need to cath him after all. I brought some home just in case he started having pain again, but we think things are working just fine. And now that he can tell me he feels like he has to go ... potty training?
Throughout the night, we were making some progress with the constipation, and this morning about an hour before discharge--Kaboom. That's all I'll say.
So Nate is feeling much better and is really not having any pain, unless I am moving him around and his back is sore. He is on regular Tylenol and Ibuprofen and that's all for pain. He has not yet sat up since the surgery on Tuesday. Dr. Tulipan wanted him to lay flat for about another day. Then he can get up as needed, but he wants him laying down most of the time--sort of like modified bedrest--for the next 3 weeks. (Bring back the dramatic music.) He won't be going back to school for that long either. So far we haven't had too much problem keeping Nate laying down--I think he's afraid to sit up--but he's going to start feeling better very soon. I'm anticipating fights tomorrow.
The outpouring of support, encouragement, and help has been incredible, and humbling actually. I have this resistance to accepting help, but I'm trying to let go of that. I need help, and people like to help (I know I do) so I'm letting them and really appreciating it. When we got home today, my mother in law was here cleaning the whole house. What a nice gift to come home to a clean house instead of a mess. My friend Kellie has organized a meal schedule, where several friends have signed up to bring dinner to the house! How incredibly nice is that? Not having to worry about cooking or cleaning frees up way more time to take care of Nate. Aunt Kathy sent two big boxes of awesome donuts from The Rolling Pin. Blake's boss gave Nate a Nintendo DS and some games and a game card to keep him busy! My parents came to the hospital on Tuesday and stayed the rest of the week, even though it's hard for my dad to take off work, and my mom was just here with us for the last surgery and away from home for a week. And that's not mentioning the cards and meals and gifts we have received from family and friends over the past 3 weeks. It makes a girl feel loved, and it it's even better knowing how much everyone loves Nate.
Nate has really taken all of this probably better than I would have. He gets grumpy sometimes, but that smile is never too far from the surface. Even when laying in a hospital bed, he gives us lots of his wonderful giggles. He may have gotten a little spoiled with all the attention. Tonight he was asking Blake to get him a train or something, and I guess Blake was taking too long because he said, "Why aren't you doing what I tell you?!" :) Georgia has very much missed her mama. She called me twice this week to say, "Come! Home!" From a 2 year old? Heart-breaking. But Blake did a great job of taking care of her (I raised my eyebrows at some of the outfits he picked out, but other than that ...) and she has really gotten closer to Daddy through this, which is a good thing. Now I can't get enough of her, but she's too busy to let me hug on her all day. I'm just so glad to be back under the same roof.
We all have our day-to-day stresses and annoyances and urgencies. But it's experiences like this that help me see the big picture a little more clearly. I keep going back to the two best pieces of advice I've ever gotten, both from my Granny.
1. "God first, then family, then everything else."
2. "If it can be fixed with money, it's not a real problem." In other words, don't sweat the small stuff. Our families and our health are what's important, and the rest of it just isn't a real problem.
Now I'm going to get some rest, and we're going to try our best to stay away from Nashville for as long as possible.
Wednesday, September 21, 2011
deja vu part 2
Surgery day. (Yesterday, Tuesday. I tried to write this last night, but my eyes wouldn't stay open long enough.)
At 5am, the nurse came in and told me we were on the schedule for an 8am surgery. Really? Because Dr. Tulipan told me yesterday afternoon that he had at least one case before he could get to Nate tomorrow, and that it would probably be 10 or 11. Nope, she said, it's at 8. Huh. So I got up at 6 and showered and got ready for the day, and they came to get us at 6:30.
Nate was in kind of a bad mood. I don't blame him--it was really early, and he had been woken up by pokes and prods. The care attendant tried 6 times over the course of the morning to get his temperature and never could get it. He was so over her, and so was I. But I was trying to talk and joke with him and get him in a little better mood, and it was working somewhat. They came to wheel Nate over to surgery holding, and on the way over, I mentioned again how strange it was that Dr. T told me Nate would not be at 8am, but now he was. They all brushed it off.
We got an annoying nurse in the holding area. I hate to complain about such things, but come on, it's really early, and I have a little boy going into surgery. Stop being loud and joking around and telling me about the ebay auction you lost. And stop checking your personal email on your phone when you're supposed to be prepping my child for surgery. She turned out to be kind to Nate, so I'll let it go, but let's just say I hadn't had any caffeine yet and had a hard time handling such annoyance. That's bad, sorry.
Nate was pretty happy, and then the anesthetist showed up. Same guy we had last time. Nate liked him last time I saw him, as we were prepping for the last surgery. But this time his face turned sour as soon as he saw the guy. Anesthetist said, "He really doesn't like me." It had something to do with the mask in the OR last time. Nate hid under the covers while we talked. This time around Nate was very resistant to even the thought of this mask--the one they administer the gas with--so we decided he should probably get some Versed. You know Versed, right? I've had it before, and it makes you pretty much okay with anything that happens. So I had to hold him down and squirt the stuff in his mouth, and it tastes awful, apparently. (His IV had gone south, and they would do another one in the OR, so he couldn't get it through that.) After about 15 minutes, he was my happy boy again. I knew it had taken effect when he looked at me and said, "Whoa. You have a lot of teeth." Ha!
So, 8 am came and went. The OR was ready, anesthesia was ready, the nurses were ready, and Nate was ready. Who was missing? Dr. Tulipan. I had already mentioned to everyone my conversation with Dr. T yesterday that Nate wouldn't be his first case of the day. Finally, the nurse called someone. Oh. He had just finished assisting someone else with a surgery, and now guess where he's going? To do a fetal surgery in the main hospital! Well, that's kind of neat. But what happened to us? I still don't know what happened, but the right people did not communicate well this morning, and that left us sitting in surgery holding for over 3 hours!
Anyway, at 10am they took Nate back for surgery, and I joined Blake and Georgia in the waiting room. We got something to eat, and Georgia played for awhile, and before long they were calling me back to talk with Dr. Tulipan. As a reminder, the goal was to find the hole leaking fluid. Neurosurgeon #1 told me there was a 50% chance of finding it, and Dr. T said it was more like 75-80%. If they didn't find it, we would have to talk about some options that I didn't want to think about.
Well, guess what. He found the leak. Hooray! Dr. Tulipan rocks! Maybe I'LL be him for Halloween! :) It was such a relief and an answered prayer. There was a tear in the dura, which is what Dr. T had told me the day before was kind of thin and hard to close in the detethering surgery. He stitched it up good and even put some glue on it. He said he wanted Nate to lay flat for 2-3 days. That means his head needs to be at the same level as the rest of his body. He doesn't necessarily have to be on his back--it's fine to be curled up on his side, or on his belly, and a pillow is okay. He said this strict bedrest can be here at the hospital or at home, he doesn't care. He thought Nate might be ready to go home on Thursday or Friday, but no rush, whatever we think is best for him. Then for the next 2-3 weeks, he's to be on modified bedrest. He can get up to do something, but he needs to be laying flat for a good portion of the day.
When I saw Nate in recovery, he was actually in a decent mood, just very sleepy but not crying like he was last time. His face was very swollen, from laying face down through the surgery. They warned me this might happen with both surgeries, but it didn't last time. This time, he could barely open his eyes for the swelling. We got him moved back up to his room fairly quickly, and we all talked about how much better he seemed to feel this time than last time.
Different medications were ordered for the pain this time. He is allowed morphine through his IV, Tylenol chewables (which Nate actually likes!), or Tylenol with codeine (aka "yucky medicine") this time in tablets instead of liquid. In the evening, the nurse tried to give him a dose of morphine, and his IV had stopped working. Dangit! She took it out, and I decided we would try to manage the pain without it. I just really didn't want him to go through getting his 3rd IV in 4 days--his second in one day. We decided to try to crush the yucky medicine tablet and put it in milk. Total backfire. I forced him to take a few sips, and he refused the rest. By night time he was so uncomfortable and needed the morphine. The nurse told me they were going to have to come stick him anyway in the middle of the night for labs, so we just decided to do the IV and labs at the same time, a little earlier.
Do you ever just feel totally under-qualified for this parenting thing? I have to make these decisions for him, and sometimes what's best for him hurts him--literally. It was so hard to give consent to let them do another IV. And boy he didn't like it. Instead of just crying--and he did cry--this time he got mad. He told that IV therapist, "Let go of me... Let. Go. Of. Me... LET GO OF ME!" Of course he doesn't understand that this is what is going to make him feel better. I wonder how scary it must be to have people at every turn just inflicting pain on you and you don't know why.
Also, the bladder spasms are back. When he woke up this morning crying about that again, I determined I would get urology here to see him today. I had already told every doctor and nurse I saw that I wanted urology here, but nobody had picked up that ball just yet. Maybe I just needed to say the magic words "Urology Consult." So today I told our surgery case manager and also our SB clinic nurse that I wanted them to tell the neurosurgery nurse that we needed a urology consult. It makes no sense to me why that was the proper order of things, but once I learned the order, I did it twice. And guess what, two urologists came by, with promise of a visit from our usual urologist. We still aren't quite sure of the problem, but there are a few theories floating around, and a couple plans of action to choose from.
So Nate is pretty uncomfortable today, and we're trying to figure out the right combination and timing of pain meds to get him comfortable. It's possible we could go home tomorrow, or maybe Friday. We'll take it hour by hour and see how he's doing.
I also wanted to say again how much it means to me to have friends and family offering to help and just encouraging and supporting us. We are blessed to have such a great support system.
At 5am, the nurse came in and told me we were on the schedule for an 8am surgery. Really? Because Dr. Tulipan told me yesterday afternoon that he had at least one case before he could get to Nate tomorrow, and that it would probably be 10 or 11. Nope, she said, it's at 8. Huh. So I got up at 6 and showered and got ready for the day, and they came to get us at 6:30.
Nate was in kind of a bad mood. I don't blame him--it was really early, and he had been woken up by pokes and prods. The care attendant tried 6 times over the course of the morning to get his temperature and never could get it. He was so over her, and so was I. But I was trying to talk and joke with him and get him in a little better mood, and it was working somewhat. They came to wheel Nate over to surgery holding, and on the way over, I mentioned again how strange it was that Dr. T told me Nate would not be at 8am, but now he was. They all brushed it off.
We got an annoying nurse in the holding area. I hate to complain about such things, but come on, it's really early, and I have a little boy going into surgery. Stop being loud and joking around and telling me about the ebay auction you lost. And stop checking your personal email on your phone when you're supposed to be prepping my child for surgery. She turned out to be kind to Nate, so I'll let it go, but let's just say I hadn't had any caffeine yet and had a hard time handling such annoyance. That's bad, sorry.
Nate was pretty happy, and then the anesthetist showed up. Same guy we had last time. Nate liked him last time I saw him, as we were prepping for the last surgery. But this time his face turned sour as soon as he saw the guy. Anesthetist said, "He really doesn't like me." It had something to do with the mask in the OR last time. Nate hid under the covers while we talked. This time around Nate was very resistant to even the thought of this mask--the one they administer the gas with--so we decided he should probably get some Versed. You know Versed, right? I've had it before, and it makes you pretty much okay with anything that happens. So I had to hold him down and squirt the stuff in his mouth, and it tastes awful, apparently. (His IV had gone south, and they would do another one in the OR, so he couldn't get it through that.) After about 15 minutes, he was my happy boy again. I knew it had taken effect when he looked at me and said, "Whoa. You have a lot of teeth." Ha!
So, 8 am came and went. The OR was ready, anesthesia was ready, the nurses were ready, and Nate was ready. Who was missing? Dr. Tulipan. I had already mentioned to everyone my conversation with Dr. T yesterday that Nate wouldn't be his first case of the day. Finally, the nurse called someone. Oh. He had just finished assisting someone else with a surgery, and now guess where he's going? To do a fetal surgery in the main hospital! Well, that's kind of neat. But what happened to us? I still don't know what happened, but the right people did not communicate well this morning, and that left us sitting in surgery holding for over 3 hours!
Anyway, at 10am they took Nate back for surgery, and I joined Blake and Georgia in the waiting room. We got something to eat, and Georgia played for awhile, and before long they were calling me back to talk with Dr. Tulipan. As a reminder, the goal was to find the hole leaking fluid. Neurosurgeon #1 told me there was a 50% chance of finding it, and Dr. T said it was more like 75-80%. If they didn't find it, we would have to talk about some options that I didn't want to think about.
Well, guess what. He found the leak. Hooray! Dr. Tulipan rocks! Maybe I'LL be him for Halloween! :) It was such a relief and an answered prayer. There was a tear in the dura, which is what Dr. T had told me the day before was kind of thin and hard to close in the detethering surgery. He stitched it up good and even put some glue on it. He said he wanted Nate to lay flat for 2-3 days. That means his head needs to be at the same level as the rest of his body. He doesn't necessarily have to be on his back--it's fine to be curled up on his side, or on his belly, and a pillow is okay. He said this strict bedrest can be here at the hospital or at home, he doesn't care. He thought Nate might be ready to go home on Thursday or Friday, but no rush, whatever we think is best for him. Then for the next 2-3 weeks, he's to be on modified bedrest. He can get up to do something, but he needs to be laying flat for a good portion of the day.
When I saw Nate in recovery, he was actually in a decent mood, just very sleepy but not crying like he was last time. His face was very swollen, from laying face down through the surgery. They warned me this might happen with both surgeries, but it didn't last time. This time, he could barely open his eyes for the swelling. We got him moved back up to his room fairly quickly, and we all talked about how much better he seemed to feel this time than last time.
Different medications were ordered for the pain this time. He is allowed morphine through his IV, Tylenol chewables (which Nate actually likes!), or Tylenol with codeine (aka "yucky medicine") this time in tablets instead of liquid. In the evening, the nurse tried to give him a dose of morphine, and his IV had stopped working. Dangit! She took it out, and I decided we would try to manage the pain without it. I just really didn't want him to go through getting his 3rd IV in 4 days--his second in one day. We decided to try to crush the yucky medicine tablet and put it in milk. Total backfire. I forced him to take a few sips, and he refused the rest. By night time he was so uncomfortable and needed the morphine. The nurse told me they were going to have to come stick him anyway in the middle of the night for labs, so we just decided to do the IV and labs at the same time, a little earlier.
Do you ever just feel totally under-qualified for this parenting thing? I have to make these decisions for him, and sometimes what's best for him hurts him--literally. It was so hard to give consent to let them do another IV. And boy he didn't like it. Instead of just crying--and he did cry--this time he got mad. He told that IV therapist, "Let go of me... Let. Go. Of. Me... LET GO OF ME!" Of course he doesn't understand that this is what is going to make him feel better. I wonder how scary it must be to have people at every turn just inflicting pain on you and you don't know why.
Also, the bladder spasms are back. When he woke up this morning crying about that again, I determined I would get urology here to see him today. I had already told every doctor and nurse I saw that I wanted urology here, but nobody had picked up that ball just yet. Maybe I just needed to say the magic words "Urology Consult." So today I told our surgery case manager and also our SB clinic nurse that I wanted them to tell the neurosurgery nurse that we needed a urology consult. It makes no sense to me why that was the proper order of things, but once I learned the order, I did it twice. And guess what, two urologists came by, with promise of a visit from our usual urologist. We still aren't quite sure of the problem, but there are a few theories floating around, and a couple plans of action to choose from.
So Nate is pretty uncomfortable today, and we're trying to figure out the right combination and timing of pain meds to get him comfortable. It's possible we could go home tomorrow, or maybe Friday. We'll take it hour by hour and see how he's doing.
I also wanted to say again how much it means to me to have friends and family offering to help and just encouraging and supporting us. We are blessed to have such a great support system.
Tuesday, September 20, 2011
deja vu
Well, here we are again, the night before surgery. Five years with no surgeries, then two in two weeks.
Back up a week or so. Nate was healing pretty well. He never did start walking by himself after the surgery, but he'd walk a little with someone on either side of him, bearing a lot of the weight for him. But this didn't stop him from getting into trouble. We couldn't keep the boy still. He was crawling all over the place. "Nate, get off the back of the couch!" "Nate! Get out from behind the chair!" But that meant he was feeling good. Every day he was getting less sore and the headaches were decreasing. By Wednesday, we were just doing pain meds about once a day, and he wasn't having headaches.
Then Thursday night. I was getting ready to take him upstairs to bed, and I was checking out his back like I did a lot, of course. This night, there was like a big hump under the incision. I asked Blake if he thought that looked like more swelling than usual, and he agreed it did. Then I noticed he felt warm, and he had a fever of 101.4. Well, those things are certainly concerning, but I was also expecting Nate to get a fever because Georgia had an unexplained fever a couple days before. It lasted 24 hours and went away on it's own. So I called the pediatrician, and I called the on-call neurosurgeon, and both said to just watch and wait.
On Friday I had to go to Lexington for a work thing, and it was also time to pick up our van, which was finally all fixed from my little (okay, it caused $5,000 worth of damage) accident a few weeks ago. I turned in the rental van at Enterprise, and she drove me to the body shop, which I had never been to before. As I was getting out, the neuro nurse was calling, so I just waved to the driver and stood outside the body shop talking to the nurse for awhile. She agreed we should watch and wait. If the swelling got worse or the fever continued much longer, bring him to the ER. After hanging up the phone, I went into the body shop to find that she had dropped me off at the wrong body shop. So for about a half an hour, I was stranded! Enterprise came back to pick me up and drove me the 40 minutes to the right place!
By Friday night, the headaches had come back. The headaches are caused by all the fluid draining from his brain when he sits up. It was normal to have that right after surgery, but then they had gone away. It was wierd that they were back. By Saturday, he could barely even sit up without getting a headache, his incision area was "lumpy"--he had swelling in like 3 different spots both under and around the incision. And he still had a fever. For half the day I just kept expecting the fever to go away and was trying to convince myself everything was fine. I took some pictures and sent them to some moms I know who have gone through the surgery with their kids. But by late afternoon, I just kept thinking, "Something isn't right." I just had this nagging feeling, and I knew I would not feel comfortable just watching him.
Normally it would be no big deal to just take him to the ER. After all, I have taken my kids to the ER for far less than this! Remember when I took Georgia and it turned out she was teething? :) What I've learned is, if I have a worry about Georgia, wait it out because it's probably nothing. If I have a worry about Nate, act on it because it's probably something. The problem is that we couldn't just go downtown to the children's hospital in Louisville. I knew we had to go back to Vanderbilt. Dr. Tulipan had told us so when we were asking questions right after the surgery. That means I would have to drive 3 hours with him. And there would be an IV and blood tests and who knows what else. I'm all for being proactive, but I'm also all for not putting my kid through something traumatic for no good reason. So that's how uncomfortable I felt about the situation, that I knew I needed to put him through that. And honestly, I was really unsure I had made the right decision until this morning.
On the drive down, I used the harness so he could lay down. His head was still really bothering him, and now he had sensitivity to light, and the setting sun was killing him. I carried him into the ER and laid him down on a couch while I checked him in. Oh goodie, the little girl running around the ER had MRSA! "Nate, don't touch anything! Here's some hand sanitizer!"
He did need an IV, and they drew blood while they were at it. Neurosurgeon Junior came in to talk with us but wasn't too helpful. They decided to do an MRI, and we got in around 2 am or so. We had the creepiest nurse the whole night, and I couldn't wait to get away from this guy. I asked for a blanket, and he offered to wrap it around me? No thank you. This night sucks, and I don't need you chatting me up. Ick. When we came back from the MRI around 5, I got a cot and slept a little while, and they told me they had a room for us. I had no idea what the plan was.
He had been on IV fluids all night, and just like the last hospital stay, he started complaining that his bladder was hurting. I didn't really anticipate this would happen again. I was trying to help him, but the pain kept getting worse and worse. I told the nurse we needed to stop the IV fluids, and she was able to do that. But he was in terrible pain by this point. I told her they needed to cath him to empty his bladder. He is not cathed at home, but for some reason when he has IV fluids it's like it gets so full that he can't empty it, and it's painful. Last time that happened, cathing helped him. So I see the nurse trying to explain this to the doctor in the hallway, and he's confused and doesn't want to order that. And I opened the door so they could hear my screaming child, who was just rolling around in pain at that point. It got so bad that he had ME in tears, and it takes A LOT for me to break down in a setting like that. I usually bite my tongue and play the tough mom. I held him down as a baby while they put an IV in his head, and I sang twinkle twinkle little star to him. So you know it's bad when I'm crying, and I HATE that, having to talk to a doctor when I'm crying. I told him he had to just trust me on this one, that that's what he needed. And as soon as they cathed him, he stopped crying and felt so much better. That's another problem for another day with urology.
A little later the general pediatric doctor came by and casually mentioned that the neuro wanted to do a spinal tap. Say what? Y'all, I already had my mama bear channeled before that doc came in and was fully prepared to tell him absolutely not. But when a random doctor tells you something scary, it's probably not true. And that was the case this time. A different neurosurgeon came in and said they did see a pocket of fluid on Nate's back. That isn't totally uncommon after surgery, but they wanted to make sure it wasn't infected. So he just wanted to stick a very small needle in the skin and get some fluid off. Nate was throwing a fit about being held down, but he barely noticed the needle. He got quite a bit of fluid--that is cerebrospinal fluid (CSF)--out of his back to test. They went ahead and put him on antibiotics. The one hour results came back fine, and as of last night, it sounded like they just needed to finish up 24 hours of antibiotics and wait for some cultures and we would be going home.
I have to say, I had mixed feelings. On the one hand, of course I don't want there to be anything wrong, and I want to just get us home. On the other hand, I felt incredibly guilty for putting Nate through all of this awful stuff for no good reason. But I really, really just wanted to talk to Dr. Tulipan, and I knew I would get to do that today.
So around 6am, I woke up when a doctor came in the room. He is a neurosurgeon, one of Dr. Tulipan's partners. He said the good news is that the CSF is not infected, and we can stop antibiotics immediately. But, all this fluid on his back means there is a leak in there somewhere. So according to him, there are 3 options:
1. See if it will heal on it's own. But this is unlikely because there's probably some pressure forcing this fluid out of the back. With that constant pressure, the hole will never heal on its own.
2. A "wound exploration." This means opening him back up and trying to find where it's leaking. But, he said, there is risk of damaging the spinal cord, and there's only a 50% chance of actually finding the hole.
3. Insert a shunt. I thought I would fall out of my chair. Did he just say shunt?! My head was saying lalalalalalala so I didn't start immediately crying. But everything I went through and he went through for the fetal surgery! But I specifically asked Dr. Tulipan about this after the surgery, and he told me I didn't have to worry about it! This guy was saying a shunt would take the pressure off so the wound could heal.
So, I asked when Dr. Tulipan would be by to see us. He assured me Dr. T would be by this afternoon. He also admitted he didn't have the 35 years of experience that Dr. T has.
I was a total basketcase for about 2 hours. After he left I tried to escape to the bathroom to cry, but the nurses came in and made me talk to them, which resulted in me crying in front of nurses again, ugh! I hate doing this because I hate pity. So I had to go do some laundry because I only brought one change of clothes with us to the ER, and when I went to buy detergent from the charge nurse I almost cried again! And I read my Bible and prayed and basically poured out my heart and pleaded with God about this one.
The same neurosurgeon came back in after awhile. He had talked with Dr. Tulipan, and he wanted me to know that Dr. T isn't thinking about a shunt. He said, "I don't want to scare you with the idea of a shunt, I just want you to be prepared if it happens." Well, I had shown no fear when he was in the room earlier (only after he left!) so I didn't quite understand how he knew that was what petrified me. But he said that Dr. Tulipan thought we would need to do the "Wound Exploration" and he wanted to do it tomorrow. At first it sounded like things were still up in the air, but then he pulled out consent forms. He reminded me there was only a 50% chance they'd find the hole, and in the case that they didn't, they would have to consider other options, like a drain or a shunt. Dude, enough with the shunt talk. It ain't happening. And don't get me wrong--Shunts are lifesaving and awesome. But we've made it five years with no shunt, and we're not going to do this permanent solution to a temporary problem. I'm no neurosurgeon, but ... just no.
Then I had to start making phone calls. Honestly, I felt slightly relieved at the idea of the wound exploration, wierdly enough (I think this is why doctors always give you worst case scenarios), so I wasn't a basketcase anymore. But it broke my heart to have to tell Blake. We were so sure he'd be coming home today, and now another surgery? It's just too much. And really, this seems fairly inconsequential, but I just got a new job, and I have to miss a very important week of that. I told Nate, "This stinks." He said, "I don't smell anything." Hahaha, leave it to Nate to make me smile. I said, "Well, it doesn't literally stink." He took a couple sniffs and said, "Smells fresh!" What a character.
Okay, so Dr. Tulipan did come by this afternoon. First thing I said was, "Nate, tell Dr. Tulipan what you want to be for Halloween." Dr. T said, "Is it me?" I said, "Yeah, it's between you and a train." He offered to get him the mask, hat, and booties. :) See, Dr. Tulipan is warming up to us. He took a half second look at Nate's back and pushed on it a little and said, "Yeah, there's a lot of fluid in there." He said one possibility was to make him lay flat on his back for 2 or 3 weeks, and that might let the hole close back up, but both of us knew that wasn't an option. While he was saying this, Nate was rolling wildly around his bed with the covers over his head. He was climbing up the inclined back of the bed and trying to slide down it, people.
Dr. T said the easiest thing to do would be to go in there and find the hole. He assured me this surgery was far less serious than the tethered cord release, and he didn't expect to even see the spinal cord, much less touch it. He said Nate's dura--one of the layers they sewed up before--was really thin and there wasn't much to work with. So maybe that was the issue and where the leak is. He mentioned putting some sort of bio patch ... something like that. I'm sure he'll tell me again tomorrow.
I mentioned the 50% odds of finding the hole, and I really enjoy that Dr. Tulipan thinks more highly of himself than that. He thought the odds were more like 75-80%. I mentioned the shunt, and he said, "Oh, he must have talked to you before I talked to him, because I told him not to mention the S word to you! He doesn't know all that you all have gone though to avoid that." He told me to not think about Plans B and C right now, because Plan A is going to work. They are going to find the hole and fix it. He will want Nate flat on his back for 2 to 3 days, whether that's in the hospital or at home, he doesnt' care. I said, "Then you're going to have to sedate him" and he laughed, but I wasn't joking!
I do feel a lot better after talking to Dr. T, and I am just so glad that we have a neurosurgeon we can trust. It's frustrating when every doctor says something different, and you don't know who to listen to. Our ultimate hope and trust is in the Lord, but we pray that God will use Dr. Tulipan's skill and experience to heal our baby.
Blake and Georgia came to town tonight. Poor G, she has been missing us so much. Yesterday Blake called and said Georgia wanted to talk to me, and she said, "Mama, come home!" Then Blake texted me later that she had packed a bag with her babies to come see us. It's hard on her having me gone. She misses Nate too, and Blake missed her having Nate there too because he had to play with her every second. :) So tonight we loaded both kids up in a double wide wheelchair and took a ride and tried to enjoy being together for awhile amid the whining of two tired children.
We don't yet know what time surgery will be in the morning. We know that Nate is not Dr. T's first case, but we hope it's fairly early because Nate won't be able to eat or drink beforehand of course. We don't know what the plan is after that. I'm guessing he'll stay another night and then we'll possibly get to go home? But I'm just trying to become okay with not knowing the plan. It doesn't really matter if I know what's going to happen; it's going to happen that way anyway.
So please pray for Nate, that he will be strong and not be traumatized by these two surgeries and hospital stays. Pray that he will cooperate with the bedrest and that his little body will heal from the inside out, totally and completely. Pray for Dr. Tulipan's wisdom and skilled hands as he operates, and for everyone in the operating room to feel the presence of God. Pray for Georgia, that she will feel loved and secure throughout this uncertain time. Pray for me and Blake that we will be strong for Nate and that we will remember God's love for us, including Nate, and his promises and faithfulness. And above all, we pray that God will be glorified throughout this experience, and that we will all draw closer to Him because of it. I'm thanking God for deeply caring friends and family to support and encourage us. It really does mean so much to us.
Back up a week or so. Nate was healing pretty well. He never did start walking by himself after the surgery, but he'd walk a little with someone on either side of him, bearing a lot of the weight for him. But this didn't stop him from getting into trouble. We couldn't keep the boy still. He was crawling all over the place. "Nate, get off the back of the couch!" "Nate! Get out from behind the chair!" But that meant he was feeling good. Every day he was getting less sore and the headaches were decreasing. By Wednesday, we were just doing pain meds about once a day, and he wasn't having headaches.
Then Thursday night. I was getting ready to take him upstairs to bed, and I was checking out his back like I did a lot, of course. This night, there was like a big hump under the incision. I asked Blake if he thought that looked like more swelling than usual, and he agreed it did. Then I noticed he felt warm, and he had a fever of 101.4. Well, those things are certainly concerning, but I was also expecting Nate to get a fever because Georgia had an unexplained fever a couple days before. It lasted 24 hours and went away on it's own. So I called the pediatrician, and I called the on-call neurosurgeon, and both said to just watch and wait.
On Friday I had to go to Lexington for a work thing, and it was also time to pick up our van, which was finally all fixed from my little (okay, it caused $5,000 worth of damage) accident a few weeks ago. I turned in the rental van at Enterprise, and she drove me to the body shop, which I had never been to before. As I was getting out, the neuro nurse was calling, so I just waved to the driver and stood outside the body shop talking to the nurse for awhile. She agreed we should watch and wait. If the swelling got worse or the fever continued much longer, bring him to the ER. After hanging up the phone, I went into the body shop to find that she had dropped me off at the wrong body shop. So for about a half an hour, I was stranded! Enterprise came back to pick me up and drove me the 40 minutes to the right place!
By Friday night, the headaches had come back. The headaches are caused by all the fluid draining from his brain when he sits up. It was normal to have that right after surgery, but then they had gone away. It was wierd that they were back. By Saturday, he could barely even sit up without getting a headache, his incision area was "lumpy"--he had swelling in like 3 different spots both under and around the incision. And he still had a fever. For half the day I just kept expecting the fever to go away and was trying to convince myself everything was fine. I took some pictures and sent them to some moms I know who have gone through the surgery with their kids. But by late afternoon, I just kept thinking, "Something isn't right." I just had this nagging feeling, and I knew I would not feel comfortable just watching him.
Normally it would be no big deal to just take him to the ER. After all, I have taken my kids to the ER for far less than this! Remember when I took Georgia and it turned out she was teething? :) What I've learned is, if I have a worry about Georgia, wait it out because it's probably nothing. If I have a worry about Nate, act on it because it's probably something. The problem is that we couldn't just go downtown to the children's hospital in Louisville. I knew we had to go back to Vanderbilt. Dr. Tulipan had told us so when we were asking questions right after the surgery. That means I would have to drive 3 hours with him. And there would be an IV and blood tests and who knows what else. I'm all for being proactive, but I'm also all for not putting my kid through something traumatic for no good reason. So that's how uncomfortable I felt about the situation, that I knew I needed to put him through that. And honestly, I was really unsure I had made the right decision until this morning.
On the drive down, I used the harness so he could lay down. His head was still really bothering him, and now he had sensitivity to light, and the setting sun was killing him. I carried him into the ER and laid him down on a couch while I checked him in. Oh goodie, the little girl running around the ER had MRSA! "Nate, don't touch anything! Here's some hand sanitizer!"
He did need an IV, and they drew blood while they were at it. Neurosurgeon Junior came in to talk with us but wasn't too helpful. They decided to do an MRI, and we got in around 2 am or so. We had the creepiest nurse the whole night, and I couldn't wait to get away from this guy. I asked for a blanket, and he offered to wrap it around me? No thank you. This night sucks, and I don't need you chatting me up. Ick. When we came back from the MRI around 5, I got a cot and slept a little while, and they told me they had a room for us. I had no idea what the plan was.
He had been on IV fluids all night, and just like the last hospital stay, he started complaining that his bladder was hurting. I didn't really anticipate this would happen again. I was trying to help him, but the pain kept getting worse and worse. I told the nurse we needed to stop the IV fluids, and she was able to do that. But he was in terrible pain by this point. I told her they needed to cath him to empty his bladder. He is not cathed at home, but for some reason when he has IV fluids it's like it gets so full that he can't empty it, and it's painful. Last time that happened, cathing helped him. So I see the nurse trying to explain this to the doctor in the hallway, and he's confused and doesn't want to order that. And I opened the door so they could hear my screaming child, who was just rolling around in pain at that point. It got so bad that he had ME in tears, and it takes A LOT for me to break down in a setting like that. I usually bite my tongue and play the tough mom. I held him down as a baby while they put an IV in his head, and I sang twinkle twinkle little star to him. So you know it's bad when I'm crying, and I HATE that, having to talk to a doctor when I'm crying. I told him he had to just trust me on this one, that that's what he needed. And as soon as they cathed him, he stopped crying and felt so much better. That's another problem for another day with urology.
A little later the general pediatric doctor came by and casually mentioned that the neuro wanted to do a spinal tap. Say what? Y'all, I already had my mama bear channeled before that doc came in and was fully prepared to tell him absolutely not. But when a random doctor tells you something scary, it's probably not true. And that was the case this time. A different neurosurgeon came in and said they did see a pocket of fluid on Nate's back. That isn't totally uncommon after surgery, but they wanted to make sure it wasn't infected. So he just wanted to stick a very small needle in the skin and get some fluid off. Nate was throwing a fit about being held down, but he barely noticed the needle. He got quite a bit of fluid--that is cerebrospinal fluid (CSF)--out of his back to test. They went ahead and put him on antibiotics. The one hour results came back fine, and as of last night, it sounded like they just needed to finish up 24 hours of antibiotics and wait for some cultures and we would be going home.
I have to say, I had mixed feelings. On the one hand, of course I don't want there to be anything wrong, and I want to just get us home. On the other hand, I felt incredibly guilty for putting Nate through all of this awful stuff for no good reason. But I really, really just wanted to talk to Dr. Tulipan, and I knew I would get to do that today.
So around 6am, I woke up when a doctor came in the room. He is a neurosurgeon, one of Dr. Tulipan's partners. He said the good news is that the CSF is not infected, and we can stop antibiotics immediately. But, all this fluid on his back means there is a leak in there somewhere. So according to him, there are 3 options:
1. See if it will heal on it's own. But this is unlikely because there's probably some pressure forcing this fluid out of the back. With that constant pressure, the hole will never heal on its own.
2. A "wound exploration." This means opening him back up and trying to find where it's leaking. But, he said, there is risk of damaging the spinal cord, and there's only a 50% chance of actually finding the hole.
3. Insert a shunt. I thought I would fall out of my chair. Did he just say shunt?! My head was saying lalalalalalala so I didn't start immediately crying. But everything I went through and he went through for the fetal surgery! But I specifically asked Dr. Tulipan about this after the surgery, and he told me I didn't have to worry about it! This guy was saying a shunt would take the pressure off so the wound could heal.
So, I asked when Dr. Tulipan would be by to see us. He assured me Dr. T would be by this afternoon. He also admitted he didn't have the 35 years of experience that Dr. T has.
I was a total basketcase for about 2 hours. After he left I tried to escape to the bathroom to cry, but the nurses came in and made me talk to them, which resulted in me crying in front of nurses again, ugh! I hate doing this because I hate pity. So I had to go do some laundry because I only brought one change of clothes with us to the ER, and when I went to buy detergent from the charge nurse I almost cried again! And I read my Bible and prayed and basically poured out my heart and pleaded with God about this one.
The same neurosurgeon came back in after awhile. He had talked with Dr. Tulipan, and he wanted me to know that Dr. T isn't thinking about a shunt. He said, "I don't want to scare you with the idea of a shunt, I just want you to be prepared if it happens." Well, I had shown no fear when he was in the room earlier (only after he left!) so I didn't quite understand how he knew that was what petrified me. But he said that Dr. Tulipan thought we would need to do the "Wound Exploration" and he wanted to do it tomorrow. At first it sounded like things were still up in the air, but then he pulled out consent forms. He reminded me there was only a 50% chance they'd find the hole, and in the case that they didn't, they would have to consider other options, like a drain or a shunt. Dude, enough with the shunt talk. It ain't happening. And don't get me wrong--Shunts are lifesaving and awesome. But we've made it five years with no shunt, and we're not going to do this permanent solution to a temporary problem. I'm no neurosurgeon, but ... just no.
Then I had to start making phone calls. Honestly, I felt slightly relieved at the idea of the wound exploration, wierdly enough (I think this is why doctors always give you worst case scenarios), so I wasn't a basketcase anymore. But it broke my heart to have to tell Blake. We were so sure he'd be coming home today, and now another surgery? It's just too much. And really, this seems fairly inconsequential, but I just got a new job, and I have to miss a very important week of that. I told Nate, "This stinks." He said, "I don't smell anything." Hahaha, leave it to Nate to make me smile. I said, "Well, it doesn't literally stink." He took a couple sniffs and said, "Smells fresh!" What a character.
Okay, so Dr. Tulipan did come by this afternoon. First thing I said was, "Nate, tell Dr. Tulipan what you want to be for Halloween." Dr. T said, "Is it me?" I said, "Yeah, it's between you and a train." He offered to get him the mask, hat, and booties. :) See, Dr. Tulipan is warming up to us. He took a half second look at Nate's back and pushed on it a little and said, "Yeah, there's a lot of fluid in there." He said one possibility was to make him lay flat on his back for 2 or 3 weeks, and that might let the hole close back up, but both of us knew that wasn't an option. While he was saying this, Nate was rolling wildly around his bed with the covers over his head. He was climbing up the inclined back of the bed and trying to slide down it, people.
Dr. T said the easiest thing to do would be to go in there and find the hole. He assured me this surgery was far less serious than the tethered cord release, and he didn't expect to even see the spinal cord, much less touch it. He said Nate's dura--one of the layers they sewed up before--was really thin and there wasn't much to work with. So maybe that was the issue and where the leak is. He mentioned putting some sort of bio patch ... something like that. I'm sure he'll tell me again tomorrow.
I mentioned the 50% odds of finding the hole, and I really enjoy that Dr. Tulipan thinks more highly of himself than that. He thought the odds were more like 75-80%. I mentioned the shunt, and he said, "Oh, he must have talked to you before I talked to him, because I told him not to mention the S word to you! He doesn't know all that you all have gone though to avoid that." He told me to not think about Plans B and C right now, because Plan A is going to work. They are going to find the hole and fix it. He will want Nate flat on his back for 2 to 3 days, whether that's in the hospital or at home, he doesnt' care. I said, "Then you're going to have to sedate him" and he laughed, but I wasn't joking!
I do feel a lot better after talking to Dr. T, and I am just so glad that we have a neurosurgeon we can trust. It's frustrating when every doctor says something different, and you don't know who to listen to. Our ultimate hope and trust is in the Lord, but we pray that God will use Dr. Tulipan's skill and experience to heal our baby.
Blake and Georgia came to town tonight. Poor G, she has been missing us so much. Yesterday Blake called and said Georgia wanted to talk to me, and she said, "Mama, come home!" Then Blake texted me later that she had packed a bag with her babies to come see us. It's hard on her having me gone. She misses Nate too, and Blake missed her having Nate there too because he had to play with her every second. :) So tonight we loaded both kids up in a double wide wheelchair and took a ride and tried to enjoy being together for awhile amid the whining of two tired children.
We don't yet know what time surgery will be in the morning. We know that Nate is not Dr. T's first case, but we hope it's fairly early because Nate won't be able to eat or drink beforehand of course. We don't know what the plan is after that. I'm guessing he'll stay another night and then we'll possibly get to go home? But I'm just trying to become okay with not knowing the plan. It doesn't really matter if I know what's going to happen; it's going to happen that way anyway.
So please pray for Nate, that he will be strong and not be traumatized by these two surgeries and hospital stays. Pray that he will cooperate with the bedrest and that his little body will heal from the inside out, totally and completely. Pray for Dr. Tulipan's wisdom and skilled hands as he operates, and for everyone in the operating room to feel the presence of God. Pray for Georgia, that she will feel loved and secure throughout this uncertain time. Pray for me and Blake that we will be strong for Nate and that we will remember God's love for us, including Nate, and his promises and faithfulness. And above all, we pray that God will be glorified throughout this experience, and that we will all draw closer to Him because of it. I'm thanking God for deeply caring friends and family to support and encourage us. It really does mean so much to us.
Thursday, September 15, 2011
Take THAT Spina Bifida!
In the Spina Bifida world, we have a saying. It's said any time a kid takes his first steps, or smiles after waking up from a surgery, or learns to do a backflip in a wheelchair.
TAKE THAT SPINA BIFIDA!
You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.
TAKE THAT SPINA BIFIDA!
We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.
TAKE THAT SPINA BIFIDA!
That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.
Want one? Join the movement! TAKE THAT SPINA BIFIDA!
TAKE THAT SPINA BIFIDA!
You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.
TAKE THAT SPINA BIFIDA!
We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.
TAKE THAT SPINA BIFIDA!
That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.
Want one? Join the movement! TAKE THAT SPINA BIFIDA!
Sunday, September 11, 2011
Home
We are home, and happy to be here. Yesterday morning was pretty uneventful. We packed up and waited for discharge. One of the PT's came by just to check on us (not the one who made him cry) and as soon as Nate saw her he pretended to go to sleep! He laid down, closed his eyes, and started breathing hard. What a stinker. He was also getting a little cranky with me and Granna. We joked that even when he is trying to think of the meanest things he can say, he's so innocent that he can't come up with much. Besides "You're not the best!", he has "You're not my best friend anymore!" and that's about it. Every now and then he pulls out, "You're a LIAR!" but he doesn't even know what that means. :)
We were discharged around noon, and since Nate was feeling pretty good, we put him in his car seat to see how he would do. By the time I got his medicine from the pharmacy, he was asleep. We were about 30 minutes from home before he woke up, and he had a bad headache. We stopped at a gas station, and I laid him down in the back seat. Then he started feeling sick, and I was in a panic to safely get him out of that van before he threw up! I sat on a curb with him laying back in my arms (because his head hurt when he was upright), and the fresh air made him feel better. It took all three of us to get him back in the back row of the van, and I got him strapped into the harness. Here's what it looks like:
He thought it was so fun that he got to lay down in the car. :) He was being silly saying, "Whoa! We're spinning!" every time my mom turned the van. All he could see was the sky. But this did the trick, and I was glad we had it.
Blake, Georgia, and Memaw (and Maggie) were very excited to see Nate, and he was just as happy! Despite me carrying Georgia around and giving lots of hugs, after awhile she started getting jealous of all of the special attention for Nate! Everyone is asking him how he feels and making sure he's comfortable, and getting things for him. She wants to get whatever Nate does.
He did throw up after he got home, but overall he was feeling much better. Before long he was sliding off the couch and trying to crawl (saying "ouch ouch ouch") over to his toys. A little later we saw him crawl back up on the couch. He tried to walk once, but was afraid of standing all the way upright. Nate and Granna had a sleepover on the couch last night, and he slept great. He has been in very little pain, besides the occasional headache and a little soreness between doses of medicine.
Today he has been moving around even more, and we've had to start holding him back already. "Nate, you can't climb on the back of the couch!" He has stood up holding onto things a couple times, and he's crawling and scooting all over the living room. Tonight he told Blake, "I wish I could walk," and Blake said, "Well, of course you can walk!" So he and I both took a hand, and Nate walked some through the house. Yay! He did great. (And then Georgia had to take Blake's hand and walk through the house too.) It's hard to tell right now, but I thought his foot looked straighter when he walked. We also think we can see some more movement in his foot, although it's slight. We will try to start PT this week, or as soon as we can get in somewhere.
He can't take a bath, because they don't want the derma-bond soaking in water, but they said he could take a shower. Nate doesn't like showers, so I decided to take a little beach chair up to the bath tub and just put a little water in the bottom. I could pour water over him, and it worked just fine. Looks like the beach chair will be a fixture in the bathroom for a few weeks.
Nate isn't allowed to be in crowds for 6 weeks, so that means no church or Bible Study (well, that's more to keep him from running than the crowd). My mom and I went to church this morning, with Pam and Cade, and the kids stayed home with Blake. One of my Bible study friends brought dinner over. We'll have to figure something out, whether that means getting a sitter, taking turns going, or probably a combination of the two. It's going to be an adjustment for all of us, not being able to take Nate anywhere. As you can tell from my blog, we don't sit around the house very much! Every weekend is packed full of stuff. Nate and I are not used to staying home. But it's for a short time, and it's good for us anyway. :)
I'm very glad this week is over, and I'm so thankful that Nate did well with the surgery and is healing well. There were a few traumatic moments for all of us, but as I always say, you can't feel too sorry for yourself when you spend time at a children's hospital. Pam talked to the grandma of a 17 year old boy who is now living at Vanderbilt until they find a heart for him. If they don't find a transplant, they don't know how long he will make it, but he's not going home. I will take Spina Bifida, thank you very much.
And kids are so resilient and look at situations different from the way we grown ups do. We are worried about permanent nerve damage, anesthesia, spinal fluid, and pain. You know what he's worried about? None of that. I asked him the worst part about being in the hospital, and he said--and I quote--"the yucky medicine." Really? I asked him what the best part was, and he said it was getting new train movies when he got home.
So BIG sigh of relief. He has more recovery to go, and we pray that his back heals well from the inside out and we don't have any problems with that. We are also praying for those nerves and his feet. Thank you, friends and family and strangers, for your prayers and encouraging words throughout all of this. Not only did Nate come through this safely, but we felt peace and comfort through it all.
We were discharged around noon, and since Nate was feeling pretty good, we put him in his car seat to see how he would do. By the time I got his medicine from the pharmacy, he was asleep. We were about 30 minutes from home before he woke up, and he had a bad headache. We stopped at a gas station, and I laid him down in the back seat. Then he started feeling sick, and I was in a panic to safely get him out of that van before he threw up! I sat on a curb with him laying back in my arms (because his head hurt when he was upright), and the fresh air made him feel better. It took all three of us to get him back in the back row of the van, and I got him strapped into the harness. Here's what it looks like:
He thought it was so fun that he got to lay down in the car. :) He was being silly saying, "Whoa! We're spinning!" every time my mom turned the van. All he could see was the sky. But this did the trick, and I was glad we had it.
Blake, Georgia, and Memaw (and Maggie) were very excited to see Nate, and he was just as happy! Despite me carrying Georgia around and giving lots of hugs, after awhile she started getting jealous of all of the special attention for Nate! Everyone is asking him how he feels and making sure he's comfortable, and getting things for him. She wants to get whatever Nate does.
He did throw up after he got home, but overall he was feeling much better. Before long he was sliding off the couch and trying to crawl (saying "ouch ouch ouch") over to his toys. A little later we saw him crawl back up on the couch. He tried to walk once, but was afraid of standing all the way upright. Nate and Granna had a sleepover on the couch last night, and he slept great. He has been in very little pain, besides the occasional headache and a little soreness between doses of medicine.
Today he has been moving around even more, and we've had to start holding him back already. "Nate, you can't climb on the back of the couch!" He has stood up holding onto things a couple times, and he's crawling and scooting all over the living room. Tonight he told Blake, "I wish I could walk," and Blake said, "Well, of course you can walk!" So he and I both took a hand, and Nate walked some through the house. Yay! He did great. (And then Georgia had to take Blake's hand and walk through the house too.) It's hard to tell right now, but I thought his foot looked straighter when he walked. We also think we can see some more movement in his foot, although it's slight. We will try to start PT this week, or as soon as we can get in somewhere.
He can't take a bath, because they don't want the derma-bond soaking in water, but they said he could take a shower. Nate doesn't like showers, so I decided to take a little beach chair up to the bath tub and just put a little water in the bottom. I could pour water over him, and it worked just fine. Looks like the beach chair will be a fixture in the bathroom for a few weeks.
Nate isn't allowed to be in crowds for 6 weeks, so that means no church or Bible Study (well, that's more to keep him from running than the crowd). My mom and I went to church this morning, with Pam and Cade, and the kids stayed home with Blake. One of my Bible study friends brought dinner over. We'll have to figure something out, whether that means getting a sitter, taking turns going, or probably a combination of the two. It's going to be an adjustment for all of us, not being able to take Nate anywhere. As you can tell from my blog, we don't sit around the house very much! Every weekend is packed full of stuff. Nate and I are not used to staying home. But it's for a short time, and it's good for us anyway. :)
I'm very glad this week is over, and I'm so thankful that Nate did well with the surgery and is healing well. There were a few traumatic moments for all of us, but as I always say, you can't feel too sorry for yourself when you spend time at a children's hospital. Pam talked to the grandma of a 17 year old boy who is now living at Vanderbilt until they find a heart for him. If they don't find a transplant, they don't know how long he will make it, but he's not going home. I will take Spina Bifida, thank you very much.
And kids are so resilient and look at situations different from the way we grown ups do. We are worried about permanent nerve damage, anesthesia, spinal fluid, and pain. You know what he's worried about? None of that. I asked him the worst part about being in the hospital, and he said--and I quote--"the yucky medicine." Really? I asked him what the best part was, and he said it was getting new train movies when he got home.
So BIG sigh of relief. He has more recovery to go, and we pray that his back heals well from the inside out and we don't have any problems with that. We are also praying for those nerves and his feet. Thank you, friends and family and strangers, for your prayers and encouraging words throughout all of this. Not only did Nate come through this safely, but we felt peace and comfort through it all.
Friday, September 9, 2011
From Bad to Better
This morning I heard the resident come in at 6:30 and jumped up out of bed to talk to her. I told her about Nate's pain, his headaches, and throwing up, and that I was not comfortable taking him home today, especially for a 3 hour ride straight up in a car seat. She was fine with that and said to just see how it goes. A little later our case manager came in and took one look at him and said "Yeah, he's not going home today." (Then she said, "Does he always sleep with his eyes open?" I said, "Yes. I know, it's creepy.")
I was very hopeful that Nate would make a lot of progress today with moving and with his pain. I was just waiting for him to wake up so we could see how he felt. The nurses came in at 7, and he woke up long enough to tell them his dream: "I had-ed a dream that I was on a slide, and it started shaking, and I was calling for mama, and it was really scary! And then I saw Miss Melissa at a preschool-house ...." They were cracking up. Then he went back to sleep. Around 9 the PT came back in, but he was still asleep. I told her how I was hoping Nate could get on his feet and try to walk some today. She said she would come back later and we could take him down to the trains to do some PT.
And I just kept waiting! I got a shower, got the room straightened up, talked to the nurses several times ... and Nate just kept sleeping. I started having flashbacks to watching for signs of hydrocephalus! Is he sleeping too much because of the fluid on his brain? Then I remembered that he'd had pain medication and just a generally hard day yesterday and was probably just exhausted. Finally around 10:30 I woke him up and he was in a great mood. He told me about his dream again. :)
Then we had visitors! My friend Kathryn and her son Killian came by before heading down for Killian to have a dental surgery (last I heard he did fine ... and he was looking forward to what the tooth fairy would bring him for a tooth that had to be surgically removed). I think Nate scared Killian a little with the fuss he made about taking his pain meds.
So, then the PT came back, and this was the beginning of a really bad hour. He was afraid to move because it would hurt. He cried the whole time and protested everything. I could tell that sitting up, standing, and taking a few very supported steps was still quite painful for him, but a little easier than yesterday. He begged us to not move him and to let him lay down again.
I was very hopeful that Nate would make a lot of progress today with moving and with his pain. I was just waiting for him to wake up so we could see how he felt. The nurses came in at 7, and he woke up long enough to tell them his dream: "I had-ed a dream that I was on a slide, and it started shaking, and I was calling for mama, and it was really scary! And then I saw Miss Melissa at a preschool-house ...." They were cracking up. Then he went back to sleep. Around 9 the PT came back in, but he was still asleep. I told her how I was hoping Nate could get on his feet and try to walk some today. She said she would come back later and we could take him down to the trains to do some PT.
And I just kept waiting! I got a shower, got the room straightened up, talked to the nurses several times ... and Nate just kept sleeping. I started having flashbacks to watching for signs of hydrocephalus! Is he sleeping too much because of the fluid on his brain? Then I remembered that he'd had pain medication and just a generally hard day yesterday and was probably just exhausted. Finally around 10:30 I woke him up and he was in a great mood. He told me about his dream again. :)
Then we had visitors! My friend Kathryn and her son Killian came by before heading down for Killian to have a dental surgery (last I heard he did fine ... and he was looking forward to what the tooth fairy would bring him for a tooth that had to be surgically removed). I think Nate scared Killian a little with the fuss he made about taking his pain meds.
So, then the PT came back, and this was the beginning of a really bad hour. He was afraid to move because it would hurt. He cried the whole time and protested everything. I could tell that sitting up, standing, and taking a few very supported steps was still quite painful for him, but a little easier than yesterday. He begged us to not move him and to let him lay down again.
He got another bad headache when we got him in the wheelchair. We went down to the trains, and we asked him if he wanted to get out of the wheelchair and push the buttons. He did not. At all. Refused. We talked and talked to him, tried to convince him, tried to bribe him, tried to make him. No. Finally we just pulled him out. And he cried so loudly and so pitifully that he was actually upsetting children all over the first floor. Families started leaving the train area. And a security guard came over to check on him! It was just awful. It's very hard to handle seeing your baby in pain like that. Finally, after about 20 minutes of this, we got him back in the wheelchair and out of there.
The headache came back. It's like a sharp pain in his forehead, and he wants me to put my hand firmly over it. We decided to take him to an outdoor play area, and once we got out there, all the color started draining from his face, and he started to hold his throat--which was exactly what he did last night before he threw up. So we hightailed it back to the room and lifted him back to his bed. He got some nausea medicine and we just tried to mess with him as little as possible for awhile. He was still crying and so upset and saying he missed Daddy. Break my heart.
I needed a little break. I went down to visit with my friend Laura who happened to be there with her son for a surgery! This seems like a big coincidence, and it is! Especially since neither of these kids having surgery have Spina Bifida (but one of their siblings does). By the way, he was just fine too. We talked and walked around for awhile, and I came back less overwhelmed.
While I was gone, Dr. Tulipan's nurse came by to drop off a prescription for us to take home with us. She told my mom that Nate definitely needs to go home tomorrow because he will heal better when he's in the comfort of his own home, and of course the longer you stay in a hospital the more likely you are to pick up something funky that you didn't come here for.
A case manager came by to get me to fill out paperwork to get Nate on "homebound" school for a couple of weeks when we return. A teacher will come to the house for an hour a day to keep him caught up on Kindergarten. :) Then the PT and another PT came by. Nate was NOT happy to see the PT who made him mad that morning, lol! He was fine with everyone else in the room except for her. He was giving her dirty looks. They came by to show us how to use a special harness that will allow Nate to lay down for his 3 hour trip home, so he doesn't have to sit straight up in his car seat. I was so nervous about that, not only that his back is sore, but because every time he's upright he gets bad headaches and gets nauseous. We would never get home without him throwing up all over my rental van! (My van is still in the shop from my little accident.) So this harness is a big relief, and it's crash tested and safe and all that. Nate was happy to hear he can lay down on his trip home too.
Nate had a little lunch and some pain meds (he still fights those, because they taste awful), and he was in a great mood finally! We moved him around a little, and even though he was hesitant at first, he saw that moving a little did not hurt him like it did that morning. I think we finally got on top of this pain. So I got him out of bed, and he took a few steps, still with a lot of support but bearing more weight than before. And this time he got in a wagon instead of a wheelchair!
It was so nice to see my happy boy, not in pain! His head felt fine too. We went downstairs to watch the trains (again) and went outside to look at the fish, where he stood up with help to throw a coin in the pond and made a wish for a new train. We went to the gift shop, where they had--guess!--a train! Mama bought it for him. Then Nate started to look pale and grabbed his throat again, so we got him upstairs pronto.
We had more visitors, Blake's cousin Nathan, wife Rachel, and two little boys. Unfortunately, Nate wasn't up for a visit right then and felt pretty sick. But they left us with hugs and a gift for Nate, which perked him right up a little later. He used the markers to mark all over himself and his blanket and anything in sight. There were dinosaur stickers and a dinosaur book, and Nate just so happens to be kind of into dinosaurs right now ... which we are encouraging in the hopes it will get him out of his train obsession! And a slap bracelet that we have had a lot of fun with. You should see him wince when I go to slap it on him, and the way he tries to slap it on me and hits me with the side of it. It was hilarious.
So the resident doc came by again, and this time because I was actually awake enought that I could pick her brain a little. You know how yesterday I was confused about the surgery? I said, "This may be a little late for this question, but explain the surgery to me." This poor woman had been working for more than 12 hours by that point, but she patiently explained what they did. And I'm a little embarrassed to admit that I learned a few things about Spina Bifida today. Okay, so Nate's original lesion was L2-L4. This indicates the bones on the back that correspond with where on the spinal cord there was damage. The spine is made up of bones on both sides of the spinal cord, and his outside bones were missing. They can feel on his back where there is just scar tissue (and muscle and skin) and where there is bone. So first day of surgical training they learn that to get to the bad part, you have to start with the good part. This means they had to go above where he doesn't have bones and do the incision where he has a normal spine. They go in and have to shave off a little bit of the bone just to get to the spinal cord (that was one thing I was confused about yesterday). Around all the nerves and spinal fluid is a sac that holds it all together. This was what Dr. T meant when he was talking about the sac, and this is what is usually protruding from the opening in the back when a baby is born with SB. I hope this all makes sense, because it became so much more clear to me. So they went from the normal part down to the scar tissue and got rid of as much as they could, but they didn't want to do more damage by hacking away at the scar tissue. (Those are my words. Maybe too gruesome.) Then they put a patch in there where the scar tissue had attached (I think to the bones in the back?) to try to prevent it from happening again. Then they sewed him up. First the sac, then the fascia (the stuff that holds the muscle together), then some deep tissue, then the top layer of skin, then covered that with derma-bond glue. He doesn't have a dressing over the incision.
I asked about muscle relaxers. A friend of mine whose son went through this last year told me the muscle relaxers helped her son more than the pain meds. And when Dr. T's PA came in earlier, she said she was going to give us a Rx for that, but she didn't. I asked the resident, and she said she wrote an order for Nate to try the muscle relaxer, and we would see if it helps, and if it does, then they will send us home with a Rx. She did not think it would necessarily help him all that much because they really didn't do much with his muscles, mostly just the scar tissue. We did give him the muscle relaxer this evening, and we just decided it made him sleepy and very cranky! He was being a little mean to Granna. He told her, "You're not the best!" and was biting our heads off over every little thing, like if his train came off the track, lol! So, we're thinking no muscle relaxers!
THEN Dr. Tulipan came by! I really doubted he would stop by before we left. After the fetal surgery, I remember he did not visit, and I had to make an appointment with him later, and he was not happy that I did that and acted like I was crazy. But he was nice today. I was concerned about the spinal fluid, headaches, nausea, etc., and I asked if anyone ever needed a shunt as a result of this surgery. He explained to me that the headaches are a result of LOW fluid on the brain, not extra fluid. That makes total sense, and I don't know why I didn't realize that before. They displaced a lot of fluid when they did the surgery, and it will eventually replace itself,, but for now when he sits up straight, all that fluid rushes from his brain giving him a headache. He said sometimes air can get in there and that can cause bad headaches too. I was relieved and told him I was worried about Nate sleeping too long this morning, and it took me back to the days of watching for symptomatic hydrocephalus. He said we're past those days and don't need to go back there. :)
I asked him about recovery, and everything was pretty much the same as I had learned earlier, except he did mention that he doesn't want Nate to run for six weeks. My fingers just stopped typing for like a minute, because I don't even know what to say to that. Nate is either at a stop, or running. He doesn't walk very much. No running for six weeks. Okayyyy. That's going to be difficult. He said it's not like a life or death thing that he doesn't lift over 5 pounds, twist, bend, or run. But it does make a difference in the healing.
I asked him how much we should push Nate to move. I have heard some parents say the best thing you can do is to get them up and moving as soon as possible. Dr. T. said to let him take his time and do what is comfortable for him. I asked what is too much, and he said not to push him to the point where he's crying. Well, that makes me feel just awful about this morning. Poor kid, I thought we were doing the right thing with tough love, but maybe it was all unnecessary. He did say that it's good to get him up as much as he can for strength and circulation. But now I know we can take it easy on him.
So it looks like we are going home in the morning, and I think Nate is ready. He will be more comfortable and happy at home. And I miss my girl! I talked to her on the phone tonight, and she didn't want to get off the phone. Just kept talking nonsense. :)
And I'll say this--Vanderbilt Childrens Hospital is just amazing. The nurses have been wonderful, we have the best doctors, the facility is AMAZING. There are three playrooms with toys for children of all ages, where they can go to play, or you can bring toys back to their room. They have a Ronald McDonald family room where you can go for free snacks. There are outside spaces made just for kids too, with castles and dragons and fish ponds and little statues and flowers. Everyone here is so caring and responsive and just on top of it. We made the best choice by coming here for the surgery, and for continuing to come here for Nate's Spina Bifida care.
Even at the end of a very hard day, and a very hard week, we feel blessed.
Surgery Update
Tuesday as I was packing, I told Nate we needed to talk. Yes, I waited to tell him about this surgery until the day before. I didn't want him worrying about it, and it wouldn't have done any good to explain it to him earlier. He didn't understand anyway. It went something like this:
Me: You know how frustrated you get because these toes don't move anymore?
Nate: Yeah, but these toes (pointing to right foot) work!
Me: Yes, but do you remember that these toes used to work too?
Nate: Yeah
Me: Well, we're going down to Vanderbilt so Dr. Tulipan can fix it. Did you know he fixed the boo boo on your back while you were still a baby in my belly?
Nate: Let me see the boo boo on my back again!
Me: (Took him into bathroom, sat him on the sink, and let him see the scar) So Dr. Tulipan has to go back in there and fix it again. And you might be sore and hurt a little afterwards. Okay?
Nate. Okay. Will we get to see the trains?
Me: I will make sure you get to see the trains as much as possible. I promise.
And that was that. What more can you say to a 5 year old who has never had surgery? So we came down to Nashville, and the kids were having a blast with grandparents. I didn't sleep much that night, not so much from worry as from a very inconvenient head cold! We woke up very early Wednesday morning and got to the hospital a little before 6. Nate was very disappointed the trains weren't turned on yet. He told everyone the rest of the day that the trains were napping.
After checking in, we waited for about an hour and a half before we got called back. Everyone was great about explaining everything to us. A child life person came to tell Nate about what was going to happen in kid friendly terms, with pictures of all the rooms he would see that day. Nate was nervous and was trying to not cry, and I tried to be extra reassuring. There was a question of if he would go back with them or if they would need to give him Versed, and we decided to see if he would do it on his own. He got to choose if he wanted to ride the bed back, be carried, or walk. He decided he would walk.
Blake and I prayed, and then we just waited. It was about an hour and a half before we got a call that they were finishing up and Nate was doing fine. A little later we got to meet with Dr. Tulipan. Everything went as expected, and Nate did great. Apparently they actually go in a shave down the bone? and then he put a patch in his sac to try to prevent further tethering. Okay, I was so lost. I didn't know anything about removing bone, or that he even still had a sac? Like the original sac from way back to the closure surgery? This is why I am not a neurosurgeon. He told that it is difficult to tell for sure exactly what was affected, but the area of that was affected controls the lower legs and bladder. He was not overly optimistic that Nate would regain function in his foot, but he said it's possible.
About 45 minutes later, we were finally called back to see Nate in recovery. As I expected, he was very agitated and crying. I climbed in bed with him and tried to soothe him. He looked at me very confused and said "My back hurts." Poor guy. The nurse gave him more pain meds, and he was out. After maybe an hour and getting him to drink a little, they sent us up to a room.
Nate had to lay flat on his back for 24 hours. In recovery they told us that meant he couldn't even bend his legs, which I questioned because I didn't hear Dr. Tulipan say that. But they insisted, so we kept pushing Nate's knees back down every time he bent them. Later an attending who was in the OR with Nate came by and said that wasn't the case at all, and in fact she preferred that he lay on his side curled up.
Blake and Georgia left that evening so Blake could work and Georgia could get back on her regular routine. My mom and aunt are staying at a nearby hotel to help out with Nate. Despite everything, Georgia had a blast while here! She got spoiled by the grandmas, saw a concert, got a new doll, ran around like a wild child, and got to take naps on people all day. She is now confused as to why Nate and I aren't home.
Through the evening and night, Nate of course had some pain from the incision and didn't like to be moved much, but he also had a lot of bladder pain. I still don't quite get it, but I think it was a combination of having a foley catheter for surgery, being pumped full of IV fluids, and possibly gaining more bladder sensation from the surgery? It was a little difficult to keep him laying on his back and entertained. He would ask with tears, "Why am I laying down so much?"
We promised Nate that at 10:30 this morning, he would be able to get out of bed and go down to see the trains. He told me, "I think it might hurt my back a little bit, but that's okay cause I'll get to see the trains." PT came right on time to help him up. And it HURT. He cried and cried. She had him sit, then stand, then take a few steps to the wheelchair, then she did some exercises with his feet.
He also got some pain medication to help him move a little, and it made him sleepy, but he still went to the trains. He stayed about 30 minutes before I made him come back because he looked like he was going to fall over asleep. For those who don't know what I mean about the trains, Vanderbilt has a model train layout on the first floor, and it is awesome. I don't know how much it would have cost, but it was worth every penny. And not just for train obsessed Nate. All the kids love it.
Today he has definitely been in better spirits. This evening he was downright happy. I had received a voicemail from his teacher, and I let him listen to it. He CACKLED. His teacher started out with, "Hello, Colleen, this is ..." and he thought she was calling HIM Colleen. He laughed for a good 10 minutes, and then every time he thought about it later. The nurses could hear the famous Nate Payne belly laugh all the way down the hall. It did all of us good to hear that laugh. Here he is being silly with Granna's glasses on.
We got him up for a total of 3 wheelchair rides today. The last one was probably the worst. Whenever he gets upright in the wheelchair, he gets a stabbing headache in his forehead. It's from the spinal fluid regulating from him laying down so long and from the surgery. For the first two rides, he had bad headaches for a few minutes and they went away. For the 3rd ride, they didn't go away until I had him back in bed. I had to hold a hand on his forehead the whole time.
Nate has been eating very well, but late tonight he threw up. And it was accompanied by a headache, so it seems to be related to the spinal fluid stuff. He was so upset that he threw up.
So what now. Well, a couple people this morning were talking about him possibly going home TODAY. That is crazy talk. There is no way that he was ready to go home today, the day after this major surgery. Now everyone is talking about how he'll probably be ready to go home tomorrow. I am still skeptical. After all the pain I saw him in today every time I moved him, and after seeing the headaches, and now him throwing up, he's just not ready. Unless he seems significantly better in the morning, I am not going to jump at that, even though I would like to be home. Plus how am I going to keep him in a car seat for 3 hours?
The recovery for this surgery is more extensive than I realized. I mean, I knew he'd be in some pain for a week or two, would be out of school a couple weeks, and wouldn't be able to rough house or do gym for a few weeks. But we have to try to keep him from bending more than 90 degrees (like to pick something up) or twist his body much. He is not allowed to take baths, only sponge baths or showers (which Nate hates). I can't pick him up from under his arms because that could stretch things. So this could get interesting.
The new scar is a little longer than his old one, and perfectly straight, unlike his old one. It's maybe 6 or 7 inches long. He was asking about it today, so I took this picture on my phone to show it to him. We decided it looks like ... train tracks. :)
We have been eager to see how his feet are moving after surgery. His left foot that had lost movement is not back to normal, and isn't really expected to be, but I do think he might be moving it more than before surgery. The PT here said it could take months to get back to baseline, and possibly he'll never regain it. But we believe he will.
I think that's about all to report, and I need to try to get some sleep before the next visit from a nurse. Thanks so much for the overwhelming prayers and support from all of our friends and family. God has been very good to us, and we praise him.
Tuesday, September 6, 2011
Surgery tomorrow, and other important things
We are in Nashville at the same hotel we always stay at when we have to stay overnight for something at Vanderbilt--all the way back to before and after the prenatal surgery. It's like our second home. So many memories here. And tonight we're making more memories. Grandma and Papaw also came down for the surgery and we went out to Outback with them. (Georgia screamed "I'm poopin, mama!" all through the restaurant.) Then when we got back to the hotel, Granna and Aunt Pam were in the adjoining room from ours. Both kids are sitting with Granna on her bed watching Thomas videos on YouTube.
We have to be at the hospital at 6am for the first surgery of the day at 8am. I forgot his paperwork at home, and even his school forms, so we don't even know what floor to go to in the morning. Truthfully I have intentionally just not thought much about this.
I have been reading from the Old Testament all this year (I'm only to Samuel), but what has stuck out to me is how many times the Lord told the Isrealites to not be afraid. Do not be afraid, because I am with you. Over and over again, he says it. It makes me think that if we are afraid, we are just not trusting Him.
The other night Blake and I were talking about the surgery, and he told me that around the beginning of the year he started praying how I pray: That if something is going on in Nate's little body, that God will reveal it to us before it's too late. That may seem like a strange prayer, but Nate has often been a little mystery to us. I had been noticing Nate's left foot turning out, but no one else (except Blake) really noticed it. Then on July 29, out of the blue, for no reason at all, Blake started messing with Nate's feet. We never do this. He told me the other night that he has no idea why he did it. All he can attribute it to is that God told him to do it. Now less than 6 weeks later, Nate is having surgery. It is really the ideal situation. He has lost enough function in his foot for us to know for sure something is up, but not enough to affect his mobility at all. So if God has had his hands all over this from the very beginning, what do we have to fear here?
Now I'm not saying I won't be a mess at 8am tomorrow, but tonight I am at peace. I am certain that God loves Nate even more than I do and has only good plans for him. I know that God will be with us tomorrow, and my prayer (and I'd love for you to join me) is that Nate will feel God's presence while he sleeps, and that everyone in the operating room will also feel his presence. Because He will be there.
Nate will be in the hospital for a few days, so I will try to update when I can. In the meantime, here's some other stuff going on.
1. We went to Gatlinburg this weekend when my dad's family. There were 24 of us in this enormous, awesome cabin. It was so nice spending time with my Granny and Papal and all of my aunts and uncle and cousins. One night Nicole and I took our kids along with my cousin Chad and his wife and their 3 kids to this place called Wonder Works. As I watched all these kids running around, I kept looking at Chad thinking ... I can't believe we're the grown ups now!
2. I am now the Executive Director of the Spina Bifida Association of Kentucky! There's so much to say about this I don't know where to start so I won't. But I'm very honored to be chosen for this position, and I take the responsibility very seriously, and I am so excited about the future.
3. I got our pictures taken today. Oh.my.goodness. How cute are they? Georgia was being a stinker and wouldn't smile most of the time, but we got one good one of her. Nate was a ham and it was difficult to choose. And I had to get my photo taken for work, so meh.
We would appreciate your prayers at 8am Central time tomorrow! I will update on Facebook as I can. Feel free to add me if we're not already connected on there. Good night!
We have to be at the hospital at 6am for the first surgery of the day at 8am. I forgot his paperwork at home, and even his school forms, so we don't even know what floor to go to in the morning. Truthfully I have intentionally just not thought much about this.
I have been reading from the Old Testament all this year (I'm only to Samuel), but what has stuck out to me is how many times the Lord told the Isrealites to not be afraid. Do not be afraid, because I am with you. Over and over again, he says it. It makes me think that if we are afraid, we are just not trusting Him.
The other night Blake and I were talking about the surgery, and he told me that around the beginning of the year he started praying how I pray: That if something is going on in Nate's little body, that God will reveal it to us before it's too late. That may seem like a strange prayer, but Nate has often been a little mystery to us. I had been noticing Nate's left foot turning out, but no one else (except Blake) really noticed it. Then on July 29, out of the blue, for no reason at all, Blake started messing with Nate's feet. We never do this. He told me the other night that he has no idea why he did it. All he can attribute it to is that God told him to do it. Now less than 6 weeks later, Nate is having surgery. It is really the ideal situation. He has lost enough function in his foot for us to know for sure something is up, but not enough to affect his mobility at all. So if God has had his hands all over this from the very beginning, what do we have to fear here?
Now I'm not saying I won't be a mess at 8am tomorrow, but tonight I am at peace. I am certain that God loves Nate even more than I do and has only good plans for him. I know that God will be with us tomorrow, and my prayer (and I'd love for you to join me) is that Nate will feel God's presence while he sleeps, and that everyone in the operating room will also feel his presence. Because He will be there.
Nate will be in the hospital for a few days, so I will try to update when I can. In the meantime, here's some other stuff going on.
1. We went to Gatlinburg this weekend when my dad's family. There were 24 of us in this enormous, awesome cabin. It was so nice spending time with my Granny and Papal and all of my aunts and uncle and cousins. One night Nicole and I took our kids along with my cousin Chad and his wife and their 3 kids to this place called Wonder Works. As I watched all these kids running around, I kept looking at Chad thinking ... I can't believe we're the grown ups now!
2. I am now the Executive Director of the Spina Bifida Association of Kentucky! There's so much to say about this I don't know where to start so I won't. But I'm very honored to be chosen for this position, and I take the responsibility very seriously, and I am so excited about the future.
3. I got our pictures taken today. Oh.my.goodness. How cute are they? Georgia was being a stinker and wouldn't smile most of the time, but we got one good one of her. Nate was a ham and it was difficult to choose. And I had to get my photo taken for work, so meh.
We would appreciate your prayers at 8am Central time tomorrow! I will update on Facebook as I can. Feel free to add me if we're not already connected on there. Good night!
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