We knew there would be an MRI yesterday, just didn't know what time. Nate would not be able to eat past midnight, so I was hoping it would be early. At 8 they came in and said we could get in early! He was not happy about getting an IV, but they started a Thomas movie and he perked up. I got to hold him and Seal the Sea Lion while they gave him stuff to make him sleep. The MRI went fine, and he slept most of the rest of the morning and afternoon. Besides me getting no sleep and having a migraine, that part went fine and we were glad to mark one thing off our to-do list in Boston.
By the time he woke up, we started getting company! My mom laughed that I am the only person she knows who has friends wherever we go. :) Thanks to the wonderful world of Babycenter, mostly! So my friend Amy, and her little girl, Lilly (who has SB) stopped by after an appointment and brought Nate a great treat bag full of toys and craft supplies and candy! Even 3 trains! He was thrilled. A little later, I got to meet, for the very first time, my two good friends Angela and KT and their kids who are about the same age as Nate! They brought big mylar balloons (one SINGS) that Nate loves, and Thomas books that have helped tremendously in the past 24 hours, and other little gifts. Turns out this hospital is a great place for a playdate. The lobby and 1st floor have all sorts of interesting things to get into. (I really need to upload all the pics so far from our little trip and put on here. And trick or treating. I promise.) It was so nice of all these friends to come by and brighten our day to take my mind off the surgery.
The last two nights, Nate has had a very hard time going to sleep and getting settled. He's always a little grumpy and moody, of course, but when he's scared like this, the only thing he knows to do is get mad about it. He lashes out at me or my mom or the nurses or whoever is around. Last night I talked with him about what would happen with the surgery. We came all the way to Boston to get rid of Clive, and Dr. Warf is the best doctor in the world at this surgery (which I call the Clive-ectomy in my head). I told him he'd be asleep, and when he woke up, he might be sore and he would have a tube on his head. He was very calm about it, but he told me he did NOT want a tube on his head. I told him that was Dr. Warf's secret magic trick for making Clive go away. We also skyped with Blake, which was a lot of fun and made all of us feel better. All in all, it wasn't a bad day.
Around 6 this morning, a nurse woke me up and told me to get my things ready because they were ready to take Nate down to pre-op. I guess I got maybe 4 hours of sleep, better than the previous night! We took Nate downstairs and got him all ready for surgery, and he never even woke up! It made the anesthesiologist's job a lot easier! They just gave him a little Versed in his IV in case he woke up on the way to the OR without me, but he didn't.
Dr. Warf came by to talk to me before the surgery. He once again told me that the plan was to put in the external drain in his head and test for pressure. He did not think there would be high pressure (hydrocephalus), so then he would just close up Nate's back again. But if there was high pressure, he would do the ETV before closing the back again. I've learned that if I'm thinking something, I should just go ahead and say it, even if I might sound stupid talking to a world-renowned neurosurgeon. I said, "I almost hope he does have high pressure, because the ETV would be another safeguard against the back leaking again." He said he had been going back and forth about whether to just go ahead and do it, and if there were absolutely no risks, he didn't see any reason to not do it on anyway. But there are some very small risks. But he's done a couple thousand of these surgeries ... And then he started thinking out loud ... that if he did not do the ETV, just the drain, and after they clamped it and got Nate moving again, if he got another CSF leak ... well, we'd have to do a shunt. And that's what we have come all the way to Boston to avoid. So, he said, if I wanted him to, he would just go ahead and do the ETV regardless of what the pressure was. We both agreed that would be the best plan. I also felt like this was taking Dr. Tulipan's opinion into consideration, because he was sure that Nate had hydrocephalus.
Nate was back there for FIVE HOURS. It wasn't all surgery time--most of that was prep and set up. Dr. Warf had Nate laying on his back for the brain surgery part, then they had to turn him over and prep him for the back surgery. It was really two surgeries under one anesthesia.
Dr. Warf came out to speak with me after he was done. He tested the pressure in Nate's brain. Normal is anything 10 and under. (I don't know what the units are.) Nate was at an 18. That isn't high enough to make him sick, but it is above normal. He had told me previously that around 30 would be considered moderately high, if that gives any comparison. He said it could have been misleading because he was laying flat on Clive, which could have been sending extra pressure up to his brain. But this is what I've always figured for Nate--he had very slight hydrocephalus that probably could have been shunted but didn't absolutely need to be. My mom was saying that maybe this is why we have gone through all of this with the tethered cord, because Nate needed this procedure. It wasn't available to babies when he was a baby, and this is really the right timing. Dr. Warf said he could tell that this thing on Nate's back and the fluid in his head were "communicating" because after they drained off some fluid and did the ETV, they turned Nate over, and his back was FLAT! Whoo!
He told me in detail what he did to Nate's back, but about half of it was over my head. I appreciate that he tried though--he even drew me a picture! So from yesterday's MRI, he could see there was a pinhole in the dura--and it sounded like pretty much the same spot Dr. Tulipan had to re-close before--that had a strong stream of CSF shooting out to a slightly bigger hole in the fascia. I really only understood the part about closing the fascia by stitching it, then gluing it, then placing a flap of Nate's tissue over that. (Is this gross? I think it's fascinating!) Oh, and the pinhole was very close to one of his vertebrae, like at the very edge of his Spina Bifida defect, so he had to chip away a little bit of the bone. (I have learned that is called a laminectomy.) Okay, so then in that big hump under the skin, the body had created this jelly-like cyst thing to hold fluid (aka Clive). He had to get all that out, so it didn't try to fill up again, because Clives tend to like to do that. Then he put some deep stitches to really close that gap up good, and he put in a drain to get the gunk out over the next couple of days so it heals flatter and doesn't let anything start accumulating in there. I just saw Nate's back tonight, and hallelujah, it's flat! I was so excited.
So Dr. Warf felt very good about the surgery and that it will be successful. We are going a couple extra miles to make sure of that--first of all, the elective ETV, and second, a whole 7 days of laying flat. After a week in the hospital, he wants us to spend another week in the Boston area, but that week he is going to be in Japan. So we actually have to stay an extra 5 days, for a total of 3 weeks, in order to see him before going home. I was going to panic about it, but there's really not much point.
I finally got back to see Nate in recovery, and he was like a wild animal thrashing around. They had to immobilize his elbows because he kept reaching up to his head to grab at the drain. That would be bad. Nate has a little bit of a nervous tick of touching his nose and face a lot, and the more scared and nervous he is, the worse it is. So I think he was just doing that and was a little out of control because he was coming out of anesthesia. It was my job to calm him down, and luckily I had brought one of the Thomas books KT had brought last night, and we read and read and read. In the meantime, they gave him more morphine to calm him. He ended up going back to sleep for a couple hours until we got back up to the room. (Later, he didn't even remember reading stories with me, so hopefully he doesn't remember how scared he was when he woke up.)
Oh, one of my jobs today and yesterday was to complain to as many people as possible about the room situation so we could get a private room, or at least on the window side of a room for more privacy and space. I mean, I told everyone--every nurse and doctor I came in contact with, and even the chaplain, lol! When I was talking with Dr. Warf, I asked him how much risk there was of infection with this external drain, especially since Nate's roommate is throwing up constantly. He didn't like that Nate was rooming with a kid who might be that sick, but he said if it was a virus that wouldn't get his drain infected. He said he knows there are private rooms, because he has stayed in one with his daughter. I didn't say this out loud, but of course the neurosurgeon gets a private room on the neuro floor! :) By the time we got back to the room, Dr. Warf came around to check on Nate, and I heard him in the hall telling someone he'd like Nate moved to a private room or at least a window side of a room. This was after at least 3 nurses had told the charge nurse we wanted to move. (She probably hates me.) Later, my mom went on a little scavenger hunt around the floor and came back reporting there was one totally empty room. After I apologized for being obnoxious and asked the nurse if we could move there, we got the okay. :) We may get a roommate, or we may get moved again, but for tonight, we have our very own room. And the bathroom is all mine.
Nate has complained of headaches a couple times. It hurts around the incision where the drain is, and sometimes he gets low pressure headaches from draining all of this fluid out of his body. He is the grumpiest little guy. I can't leave his side, and Granna can do nothing right for him. He's yelling at one of us all the time. I think if I had brain and spine surgery earlier today, I'd be pretty mad too. He's resting really well now. Tomorrow will probably be pretty rough in the recovery process, but after that he should start feeling better every day, and our only problem will be trying to keep him laying down!
As always, thanks so much, everyone, for all the prayers, encouraging comments on the blog and Facebook, visits, meals to Blake and Georgia ... we are so blessed by you.
Thursday, November 3, 2011
Tuesday, November 1, 2011
Boston Days 1 and 2
Nate has made no secret of the fact that he did not want to go to Boston. I talked with him a couple nights ago about it, trying to get him excited about the fllying on an airplane the first time, but he said he would rather take a train, and he didn't want to go to the hospital because it would hurt. Good points.
I borrowed a little wheelchair from work for Nate to use, and it is just the right size. When we got to the airport, he started learning how to make it go. In no time at all, he was whizzing around in circles. Our first flight was to New York, and before take off I was telling Nate what would happen. He told me he was scared, but I reassured him. Turns out he loved it! He especially loved any turbulence because it gave him "the belly tickles." As we flew into New York, we had a great view of the city, including the Empire State Building. Nate and I both loved that. We want to come back to New York to visit sometime. After landing, we had to race through the airport to get to our next plane, which was already boarding. On that flight, we got bumped up to first class! Then when we got to Boston, Nate had another new experience--riding in a cab. We went through like 4 tunnels on the way to the hotel, and Nate asked the cab driver to honk his horn like daddy does. :) The cab driver either didn't understand him or just ignored him.
We got to the hotel worn out. After a little rest, we headed out to find a restaurant. We walked about a mile and stopped in 3 places that were way too fancy for a five year old before finding a little cafe that had the best french toast and grilled cheese. :)
Day 2
As we were eating breakfast in the hotel lobby, Nate was already telling us he wanted to go home. (Well, he started last night.) But I reminded him he could wear his Halloween costume. Nate was a doctor (neurosurgeon, to be exact) for Halloween. Since we were traveling Halloween night, we took the kids to the zoo the night before. (Will try to post pictures soon.) And I told Nate he could wear his doctor costume to meet Dr. Warf, and he could say, "Hi, Dr. Warf, I'm Dr. Payne." He practiced it a lot. :)
We headed out to the hospital on the 11am shuttle for an 11:30 appointment. It was only 1.5 miles away, but we should have known the shuttle would take forever. We got checked in at 11:45. Dr. Warf himself came out to the lobby to get us. That is very different from any doctor visit we have ever had, especially with a specialist! Right on cue, Nate said, "Hi, Dr. Warf, I'm Dr. Payne," and Dr. Warf seemed pretty amused by him.
We went to his office, and besides Nate ramming his wheelchair into Dr. Warf's legs repeatedly, it was a good appointment. We reviewed all the information, and he talked about his plan. He will place a drain in Nate's brain, and while he is in there he will check his pressure. He does not think Nate has hydrocephalus, but if his pressure reads high, he will do the ETV. Either way, he will leave the drain in and then operate on Nate's back to find the leak and close it again. He wants to leave the drain in for 3 or 4 days, and he wants Nate to lay flat for 5 days. We will be in the hospital 7 days, and then he'd like for us to stay in town for another week after that. Neither surgery is terribly risky, believe it or not.
He then wanted to admit Nate (kind of a back door way of getting surgery this week instead of his next available surgery time of Dec. 9), but there were no beds available right then. They said we could just hang out for a couple of hours. We decided to, instead of catching the shuttle back to the hotel and having to turn right back around, we would just stay at the hospital. Nate was in a little wheelchair wearing a doctor costume, so he was like a minor celebrity, attracting a lot of attention. We didn't find any trains, but there was a cool mouse-trap-like thing in the lobby, and a magic show upstairs, and a great fish tank, and free Pac-Man. Nate did better than my mom and I did. We were bored and exhausted, but Nate was wheeling around like a madman. He ran into like 30 people. Something I never envisioned myself saying: "Nate, don't let you sandwich touch your wheels!"
Finally around 4:45 I went back up to the neuro office, and the nurse said she was just getting ready to call me because a bed came open. She told us to go to inpatient admitting, so we hauled all our stuff over there, and I checked in. She said someone would be with us in just a minute. An hour later, another nurse asked why we were there and what the name was. Yep, someone forgot about us. Within 5 minutes of that, we were up to our room.
A semi-private room.
I almost cried. Maybe that's silly, but I just wasn't anticipating that. Vanderbilt has only private rooms, and they are so nice. This hospital is different and is great, but that is one area that does not compare. The main reason I'm being a diva about this is that Nate is a terrible roommate. He is loud and throws tantrums over lots of things, especially late at night. And we are on the side of the room that does NOT have the bathroom, and I feel weird about crossing over there, so I have to go down the hall to use the bathroom or change clothes or wash my hands! That poor kid next to Nate is throwing up every few minutes, and his IV thing beeps for about 20 minutes of every hour, but Nate is a much worse roommate.
Tomorrow Nate will have an MRI, and he will have surgery on Thursday. Sounds like he will be inpatient until next Thursday, then we have to find some other place to stay for another week where Nate can continue his recovery before we fly home.
Today was rough, but I know better than to question whether we've made the right decision. God led us here for a reason, and I just need to take it a day at a time with the hope that Nate will be all better very soon.
I borrowed a little wheelchair from work for Nate to use, and it is just the right size. When we got to the airport, he started learning how to make it go. In no time at all, he was whizzing around in circles. Our first flight was to New York, and before take off I was telling Nate what would happen. He told me he was scared, but I reassured him. Turns out he loved it! He especially loved any turbulence because it gave him "the belly tickles." As we flew into New York, we had a great view of the city, including the Empire State Building. Nate and I both loved that. We want to come back to New York to visit sometime. After landing, we had to race through the airport to get to our next plane, which was already boarding. On that flight, we got bumped up to first class! Then when we got to Boston, Nate had another new experience--riding in a cab. We went through like 4 tunnels on the way to the hotel, and Nate asked the cab driver to honk his horn like daddy does. :) The cab driver either didn't understand him or just ignored him.
We got to the hotel worn out. After a little rest, we headed out to find a restaurant. We walked about a mile and stopped in 3 places that were way too fancy for a five year old before finding a little cafe that had the best french toast and grilled cheese. :)
Day 2
As we were eating breakfast in the hotel lobby, Nate was already telling us he wanted to go home. (Well, he started last night.) But I reminded him he could wear his Halloween costume. Nate was a doctor (neurosurgeon, to be exact) for Halloween. Since we were traveling Halloween night, we took the kids to the zoo the night before. (Will try to post pictures soon.) And I told Nate he could wear his doctor costume to meet Dr. Warf, and he could say, "Hi, Dr. Warf, I'm Dr. Payne." He practiced it a lot. :)
We headed out to the hospital on the 11am shuttle for an 11:30 appointment. It was only 1.5 miles away, but we should have known the shuttle would take forever. We got checked in at 11:45. Dr. Warf himself came out to the lobby to get us. That is very different from any doctor visit we have ever had, especially with a specialist! Right on cue, Nate said, "Hi, Dr. Warf, I'm Dr. Payne," and Dr. Warf seemed pretty amused by him.
We went to his office, and besides Nate ramming his wheelchair into Dr. Warf's legs repeatedly, it was a good appointment. We reviewed all the information, and he talked about his plan. He will place a drain in Nate's brain, and while he is in there he will check his pressure. He does not think Nate has hydrocephalus, but if his pressure reads high, he will do the ETV. Either way, he will leave the drain in and then operate on Nate's back to find the leak and close it again. He wants to leave the drain in for 3 or 4 days, and he wants Nate to lay flat for 5 days. We will be in the hospital 7 days, and then he'd like for us to stay in town for another week after that. Neither surgery is terribly risky, believe it or not.
He then wanted to admit Nate (kind of a back door way of getting surgery this week instead of his next available surgery time of Dec. 9), but there were no beds available right then. They said we could just hang out for a couple of hours. We decided to, instead of catching the shuttle back to the hotel and having to turn right back around, we would just stay at the hospital. Nate was in a little wheelchair wearing a doctor costume, so he was like a minor celebrity, attracting a lot of attention. We didn't find any trains, but there was a cool mouse-trap-like thing in the lobby, and a magic show upstairs, and a great fish tank, and free Pac-Man. Nate did better than my mom and I did. We were bored and exhausted, but Nate was wheeling around like a madman. He ran into like 30 people. Something I never envisioned myself saying: "Nate, don't let you sandwich touch your wheels!"
Finally around 4:45 I went back up to the neuro office, and the nurse said she was just getting ready to call me because a bed came open. She told us to go to inpatient admitting, so we hauled all our stuff over there, and I checked in. She said someone would be with us in just a minute. An hour later, another nurse asked why we were there and what the name was. Yep, someone forgot about us. Within 5 minutes of that, we were up to our room.
A semi-private room.
I almost cried. Maybe that's silly, but I just wasn't anticipating that. Vanderbilt has only private rooms, and they are so nice. This hospital is different and is great, but that is one area that does not compare. The main reason I'm being a diva about this is that Nate is a terrible roommate. He is loud and throws tantrums over lots of things, especially late at night. And we are on the side of the room that does NOT have the bathroom, and I feel weird about crossing over there, so I have to go down the hall to use the bathroom or change clothes or wash my hands! That poor kid next to Nate is throwing up every few minutes, and his IV thing beeps for about 20 minutes of every hour, but Nate is a much worse roommate.
Tomorrow Nate will have an MRI, and he will have surgery on Thursday. Sounds like he will be inpatient until next Thursday, then we have to find some other place to stay for another week where Nate can continue his recovery before we fly home.
Today was rough, but I know better than to question whether we've made the right decision. God led us here for a reason, and I just need to take it a day at a time with the hope that Nate will be all better very soon.
Friday, October 28, 2011
Okay, a little change in plans!
We were planning on doing the surgery in Boston on Nov. 11. I didn't like having to wait that long, but I was dealing with it. Then last night I got an email from the nurse saying the doctor had a couple conferences out of town and they scheduled Nate for Dec. 9!!! This was my email to her:
"That is 42 days from now. He has this huge hump of fluid on his back and can't leave the house except for doctor appointments. He has missed 7 weeks of kindergarten, and can't even do physical therapy right now. This has been going on since Labor Day. We are in Spina Bifida purgatory right now. Is that the absolute soonest we could do surgery? I am so disappointed. Nov. 11 was such a stretch for us already, but another month of this is inthinkable."
This morning I got an email to call her. She said she and Dr. Warf made a new plan. Nate has an appointment with Dr. Warf on TUESDAY. Whoa, whoa, whoa, do you mean this coming Tuesday? Yes. After his appointment, he will be admitted to the hospital. (This is only slightly different from the plan I had already come up with to just show up at the ER and hope Dr. Warf could see us, but better since it was his idea!) While inpatient, he'll have an MRI. Dr. Warf is on call next week, so his surgery will be either Wednesday, Thursday, or Friday. Whatever--better than Dec. 9!
So I am overjoyed that we are going to get this show on the road, but of course we are now frantically trying to prepare for a trip! Leaving work for 2 weeks unexpectedly is overwhelming! And snowpocalypse is getting ready to hit Massachusettes. We have to find flights and hotels (and they're all booked or super expensive) and pack. But I'm not complaining. This is better than I could have asked for.
We are flying in on Monday, and I'll try to update from Boston!
"That is 42 days from now. He has this huge hump of fluid on his back and can't leave the house except for doctor appointments. He has missed 7 weeks of kindergarten, and can't even do physical therapy right now. This has been going on since Labor Day. We are in Spina Bifida purgatory right now. Is that the absolute soonest we could do surgery? I am so disappointed. Nov. 11 was such a stretch for us already, but another month of this is inthinkable."
This morning I got an email to call her. She said she and Dr. Warf made a new plan. Nate has an appointment with Dr. Warf on TUESDAY. Whoa, whoa, whoa, do you mean this coming Tuesday? Yes. After his appointment, he will be admitted to the hospital. (This is only slightly different from the plan I had already come up with to just show up at the ER and hope Dr. Warf could see us, but better since it was his idea!) While inpatient, he'll have an MRI. Dr. Warf is on call next week, so his surgery will be either Wednesday, Thursday, or Friday. Whatever--better than Dec. 9!
So I am overjoyed that we are going to get this show on the road, but of course we are now frantically trying to prepare for a trip! Leaving work for 2 weeks unexpectedly is overwhelming! And snowpocalypse is getting ready to hit Massachusettes. We have to find flights and hotels (and they're all booked or super expensive) and pack. But I'm not complaining. This is better than I could have asked for.
We are flying in on Monday, and I'll try to update from Boston!
Wednesday, October 26, 2011
We have a plan
So Monday was the big appointment! This is what we had been waiting for the past 3 weeks to make a decision. Last week after talking to Dr. Warf in Boston, I called Dr. Tulipan's nurse, Melissa, and she advised me to keep this appointment with Dr. T to keep him in the loop and ask for his advice about how to proceed. I took a day off work, filled the van up with gas, and figured out how to transport Nate--this time with towels rolled up around his back so Clive doesn't press against his car seat. It's an almost 3 hour drive, and when we got there we got Nate a wheelchair and looked at the trains and got some lunch before heading up to clinic.
Spina Bifida clinic is always a long day, but you see all the doctors you need to see in one afternoon, so it's worth the wait. We waited in the lobby for at least half an hour after his appointment time, then the nurse called us back to weigh him and get his vitals and all that. While we were back there, she said, "So you're just seeing urology today, huh?" No. We are seeing urology today, but more importantly we are here for neurosurgery. It's very important that he sees neurosurgery. She says okay, she will tell "them." We head back out to the waiting room for a long time, then another nurse comes to take us to our room. She puts a sheet of paper on the door that says which specialists we will be seeing, and it only has urology listed. I told her, "This isn't right. We are here to see Dr. Tulipan too. It is very important that we see Dr. Tulipan. See his back? (raise his shirt) Make sure someone knows we are here to see him." At that point I was thinking, I KNOW there is no way we are going to get stood up today. But just in case, I left the door open in case I saw Dr. T walk by so I could holler at him!
A few minutes later, the urology nurse stops in. For a couple minutes, we talk about the bladder issues that happened while he was in the hospital after his last surgery, and she's basically like, "So he really doesn't need to be seen today," and I said we were mainly here to see Dr. T because ... and I lift up the back of his shirt. The nurse covered her face with her hands in horror and says, "I have to get Dr. Tulipan before he leaves!" and bolts out the door. And I said, "That's what I'm sayin!"
At that point, Maria comes in. She is the fill-in Spina Bifida clinic coordinator. Our longtime clinic coordinator left a few weeks ago. Maria was the coordinator several years ago, when Nate was a baby, so she is apparently filling in temporarily. She tells me she is sorry, she must be out of practice. Dr. Tulipan has already left for a surgery, but she is going to go page him to see if he can come back. I stood at the door with my arms crossed looking down the hallway, and every time she saw me she said, "You look so worried! Don't worry!" Then she comes back and says, "I'm sorry, he can't leave surgery (duh!) but he says he can see you on Wednesday at 10." I almost fell in the floor. I said, "We live in Louisville." She's very sorry. I asked her if we stayed the night if we could see him tomorrow. She checked with his office, and they said he had 12 hours of surgery the next day and that wouldn't be possible. I asked if I took Nate to the ER and they admitted him if he could see us the next day, and she said he'd probably be seen by a resident.
Now, if we were for sure going to do a shunt surgery, then I would have grumbled but come back on Wednesday and just stayed. But I just wanted to talk to the guy about our options. There is no way I am making this trip again. Oh, Maria knew I was mad. She told me to call the next day and ask to speak with only her. Um, no way. And at this point Nate was barely holding it together after a long day, and we just had to get out of there. I was just floored by the whole situation. It was one of those times that are so ridiculous that you know God has to be doing something here, ya know? This has never happened before. And I don't know what God has up his sleeves, and honestly I'm a little bit ticked about it! :) But we left. And somehow I got turned around on a back road--which is really odd because I always take the same way out of town and never get lost--and somehow I ended up at the side entrance of the apartment where I lived when I was pregnant with Nate during the MOMS study! What? So somehow I ended up back at the beginning. I still don't get God sometimes.
So the next morning (Tuesday) I called Dr. Tulipan's office to talk with Melissa. She said she already had an email in her inbox about this situation, and she was furious. At that point, I just wanted to move on, but I wanted to explain what happened and why we didn't see Dr. T. She said she had an email from him saying, "I don't know why this mom didn't let anyone know she was there to see me..." @#$%^&!!!!! Melissa said she set him straight about it. In the meantime I was getting all of Nate's records sent to Cincinnati for a 3rd opinion.
Yesterday afternoon, Dr. Tulipan called me. He started the conversation with, "Sorry about yesterday. No one knew you were there to see me..." OMG. I just moved on. I told him what Dr. Warf's opinion was--that if it were up to him, he would do an external drain (EVD), ETV if necessary, and close the back again. Dr. Tulipan thought that "if you're really dead set against the shunt" then that was probably the best course of action. I asked him if it might work if we come down to Vanderbilt and let him do the EVD and close the back again (without a shunt or ETV), and he said we could try that, but what if it doesn't work and then we're another 2 weeks down the road and have to decide what to do again. Okay, we need to do the ETV. So I asked him his opinion about whether we should go to this neurosurgeon at Cincinnati Childrens or if we should travel to Boston for Dr. Warf. He said the doc in Cincinnati is well respected, but Dr. Warf has done more of these surgeries than anyone in the world. So "if you're dead set against the shunt" he would recommend going to Boston. And I said, "Okay, that's what we're going to do."
I called Dr. Warf's nurse, but this was at like 4:45 pm. I told her we wanted to come to Boston for the surgery, and Dr. Warf had in his notes that he would be happy to treat Nate if that's what we chose. She said his next available surgery date (he only operates on Fridays) would be November 11. I'm not wildly happy about waiting that long, but there's not much to do about it. She was going to check with him today before she could officially schedule the surgery. If that is his surgery date, then we will have a pre-op appointment the day before. We will fly into Boston either that morning or the day before, depending on appointment times and flights. Nate and I will be traveling there, and Blake will stay home with Georgia. My mom will meet us there to help me with Nate. It sounds like we will be in the hospital for a couple of weeks, which could include Thanksgiving.
Every time I tell someone about this, they either say "Wow!" or cry (well, that's the grandmas mostly). But honestly, I am relieved and optimistic, because we have a plan that I am comfortable with and a doctor I feel comfortable with. We just happen to have to travel to Boston for it. I actually wish they would call tomorrow and say they have a cancellation this Friday and want us to hop on a plane. I just want to get this going so it will be over faster. There is light at the end of the tunnell now.
I did get a great distraction from all of this today. My best friend in the world, Mindy, had her twin boys today, and I got to be there! They are healthy and precious! I'm a proud auntie! And I couldn't be more happy for anyone. My head has been spinning the last couple of days! So much going on. Never a dull moment! But I'll be happy when we at least get back to "normal-crazy" life.
Spina Bifida clinic is always a long day, but you see all the doctors you need to see in one afternoon, so it's worth the wait. We waited in the lobby for at least half an hour after his appointment time, then the nurse called us back to weigh him and get his vitals and all that. While we were back there, she said, "So you're just seeing urology today, huh?" No. We are seeing urology today, but more importantly we are here for neurosurgery. It's very important that he sees neurosurgery. She says okay, she will tell "them." We head back out to the waiting room for a long time, then another nurse comes to take us to our room. She puts a sheet of paper on the door that says which specialists we will be seeing, and it only has urology listed. I told her, "This isn't right. We are here to see Dr. Tulipan too. It is very important that we see Dr. Tulipan. See his back? (raise his shirt) Make sure someone knows we are here to see him." At that point I was thinking, I KNOW there is no way we are going to get stood up today. But just in case, I left the door open in case I saw Dr. T walk by so I could holler at him!
A few minutes later, the urology nurse stops in. For a couple minutes, we talk about the bladder issues that happened while he was in the hospital after his last surgery, and she's basically like, "So he really doesn't need to be seen today," and I said we were mainly here to see Dr. T because ... and I lift up the back of his shirt. The nurse covered her face with her hands in horror and says, "I have to get Dr. Tulipan before he leaves!" and bolts out the door. And I said, "That's what I'm sayin!"
At that point, Maria comes in. She is the fill-in Spina Bifida clinic coordinator. Our longtime clinic coordinator left a few weeks ago. Maria was the coordinator several years ago, when Nate was a baby, so she is apparently filling in temporarily. She tells me she is sorry, she must be out of practice. Dr. Tulipan has already left for a surgery, but she is going to go page him to see if he can come back. I stood at the door with my arms crossed looking down the hallway, and every time she saw me she said, "You look so worried! Don't worry!" Then she comes back and says, "I'm sorry, he can't leave surgery (duh!) but he says he can see you on Wednesday at 10." I almost fell in the floor. I said, "We live in Louisville." She's very sorry. I asked her if we stayed the night if we could see him tomorrow. She checked with his office, and they said he had 12 hours of surgery the next day and that wouldn't be possible. I asked if I took Nate to the ER and they admitted him if he could see us the next day, and she said he'd probably be seen by a resident.
Now, if we were for sure going to do a shunt surgery, then I would have grumbled but come back on Wednesday and just stayed. But I just wanted to talk to the guy about our options. There is no way I am making this trip again. Oh, Maria knew I was mad. She told me to call the next day and ask to speak with only her. Um, no way. And at this point Nate was barely holding it together after a long day, and we just had to get out of there. I was just floored by the whole situation. It was one of those times that are so ridiculous that you know God has to be doing something here, ya know? This has never happened before. And I don't know what God has up his sleeves, and honestly I'm a little bit ticked about it! :) But we left. And somehow I got turned around on a back road--which is really odd because I always take the same way out of town and never get lost--and somehow I ended up at the side entrance of the apartment where I lived when I was pregnant with Nate during the MOMS study! What? So somehow I ended up back at the beginning. I still don't get God sometimes.
So the next morning (Tuesday) I called Dr. Tulipan's office to talk with Melissa. She said she already had an email in her inbox about this situation, and she was furious. At that point, I just wanted to move on, but I wanted to explain what happened and why we didn't see Dr. T. She said she had an email from him saying, "I don't know why this mom didn't let anyone know she was there to see me..." @#$%^&!!!!! Melissa said she set him straight about it. In the meantime I was getting all of Nate's records sent to Cincinnati for a 3rd opinion.
Yesterday afternoon, Dr. Tulipan called me. He started the conversation with, "Sorry about yesterday. No one knew you were there to see me..." OMG. I just moved on. I told him what Dr. Warf's opinion was--that if it were up to him, he would do an external drain (EVD), ETV if necessary, and close the back again. Dr. Tulipan thought that "if you're really dead set against the shunt" then that was probably the best course of action. I asked him if it might work if we come down to Vanderbilt and let him do the EVD and close the back again (without a shunt or ETV), and he said we could try that, but what if it doesn't work and then we're another 2 weeks down the road and have to decide what to do again. Okay, we need to do the ETV. So I asked him his opinion about whether we should go to this neurosurgeon at Cincinnati Childrens or if we should travel to Boston for Dr. Warf. He said the doc in Cincinnati is well respected, but Dr. Warf has done more of these surgeries than anyone in the world. So "if you're dead set against the shunt" he would recommend going to Boston. And I said, "Okay, that's what we're going to do."
I called Dr. Warf's nurse, but this was at like 4:45 pm. I told her we wanted to come to Boston for the surgery, and Dr. Warf had in his notes that he would be happy to treat Nate if that's what we chose. She said his next available surgery date (he only operates on Fridays) would be November 11. I'm not wildly happy about waiting that long, but there's not much to do about it. She was going to check with him today before she could officially schedule the surgery. If that is his surgery date, then we will have a pre-op appointment the day before. We will fly into Boston either that morning or the day before, depending on appointment times and flights. Nate and I will be traveling there, and Blake will stay home with Georgia. My mom will meet us there to help me with Nate. It sounds like we will be in the hospital for a couple of weeks, which could include Thanksgiving.
Every time I tell someone about this, they either say "Wow!" or cry (well, that's the grandmas mostly). But honestly, I am relieved and optimistic, because we have a plan that I am comfortable with and a doctor I feel comfortable with. We just happen to have to travel to Boston for it. I actually wish they would call tomorrow and say they have a cancellation this Friday and want us to hop on a plane. I just want to get this going so it will be over faster. There is light at the end of the tunnell now.
I did get a great distraction from all of this today. My best friend in the world, Mindy, had her twin boys today, and I got to be there! They are healthy and precious! I'm a proud auntie! And I couldn't be more happy for anyone. My head has been spinning the last couple of days! So much going on. Never a dull moment! But I'll be happy when we at least get back to "normal-crazy" life.
Saturday, October 22, 2011
Answers or just more questions
I hesitate to even post this because I still don't know what we are doing yet, but some of you know that we had a conference call with Dr. Warf yesterday, and I don't want to leave you hanging.
First of all, Nate's back looks the same. Clive is still here. The good news is that a couple nights ago, he started walking by himself a little! Yay! He is hunched over and wobbly, but he's walking. And just to recap, the plan was that we go back to see Dr. Tulipan on Monday, and if his back is still the same we would stay there and do the shunt.
It took more than a week to get Nate's records sent to Boston and to set up a conference call with Dr. Warf. By the time we talked, he had seen Nate's latest MRI and all his surgical notes, my email explaining the situation, and a picture of Nate's back. I originally contacted Dr. Warf about the ETV procedure because he uses a different technique than most doctors by including another procedure called a CPC that makes it more successful. Before talking to him, Blake and I researched some of his papers and found he really only does the CPC on infants. So on a child Nate's age, they would do the regular ETV, which more doctors do--but not Dr. Tulipan.
Dr. Warf was very nice to talk to. He's personable and genuinely caring, and he has a very impressive reputation as a neurosurgeon. He seemed to understand what a huge decision this is for us and tried to help me think through all the options. The first thing he said was that he would hate to see a 5 year old get a shunt for a spinal fluid leak. He also admitted that he may be a bit fanatical about trying to avoid shunts, and I said I was too for my own son. His concern with the shunt was that some kids who get a shunt for something like this when they don't need it for hydrocephalus, can then BECOME shunt dependent. So it could be that if we did the shunt and just decided to keep it forever because it wasn't worth another surgery to remove it, the brain could get used to draining the fluid that way, and some of the small aqueducts in Nate's brain could potentially close, and then he'd be dependent on the dang shunt. So if he had a malfunction or something, we'd have all those issues. He thought if we did decide to go the shunt route, we should then go back and remove it a few months down the road. If you wait too long, it can get attached in there, and then you risk a brain bleed when removing it. This has just helped confirm that I want to avoid the shunt if at all possible.
He said he would be happy to treat Nate, but he didn't think it was necessary for us to travel all that way, when there is a neurosurgeon closer to us (Cincinnati) who could do the job. But he told me what he thought his plan of action would be. He would prefer to insert an external shunt/temporary drain to get the fluid intentionally too low. While he was in there, he would test the pressure of the fluid. If Nate did have high pressure (hydrocephalus), which he is not convinced he does because his ventricles look pretty good, then he would do the ETV. THEN he would re-open his back, find the hole, and close it up again. He would leave Nate on the external drain for about a week or so until he thought the back was healing good, then he could remove the drain at the bedside.
So what to do. Well, we could go to Boston for that route. We could get a third opinion in Cincinnati with another doctor that does the ETV, and maybe he would do the same course of action or a different one. We could ask Dr. Tulipan if he would do the external drain and third back closure, but he would not do the ETV while he was in there if needed.
I called Dr. Tulipan's nurse to get her opinion on what we should do about our appointment on Monday. I told her about my conversation with Dr. Warf, and I said, "I don't know how open to suggestion Dr. Tulipan is ..." and we both laughed. :) She said Dr. T would do whatever I felt was best as long as he didn't think it would endanger Nate. She asked me what my gut was telling me, and I said my gut is saying no shunt. She said I should follow that. But her professional opinion was that I should talk with Dr. Tulipan about all of this before making any decisions about going to a different doctor, and I agree with that. I really, really want to stick with Dr. Tulipan if at all possible. So we are keeping the appointment on Monday, and we'll talk. I can always get Nate's records sent to Cincinnati on Monday. As Dr. Warf says, Nate is not in any kind of emergent danger. We just want this to be over so we can move on.
Nate got out of the house a little today. He's only been out of the house for doctor visits or wagon rides down the street since Labor Day. My friend Kellie invited us to her son's pirates and princesses birthday party, and as I was getting Georgia ready in her princess dress (which she hates), Nate said he really, really wanted to go in his pirate costume. So we figured it out. We put rolled up towels in the car seat so it didn't hurt Clive, and we just helped him a lot. I'm glad we attempted it because it was good for him to get out.
So, we still won't know what we're doing, and I'm taking my dad's advice of just doing nothing until I'm certain what we should do. We're praying for clear answers. I'll try to update more Monday evening.
First of all, Nate's back looks the same. Clive is still here. The good news is that a couple nights ago, he started walking by himself a little! Yay! He is hunched over and wobbly, but he's walking. And just to recap, the plan was that we go back to see Dr. Tulipan on Monday, and if his back is still the same we would stay there and do the shunt.
It took more than a week to get Nate's records sent to Boston and to set up a conference call with Dr. Warf. By the time we talked, he had seen Nate's latest MRI and all his surgical notes, my email explaining the situation, and a picture of Nate's back. I originally contacted Dr. Warf about the ETV procedure because he uses a different technique than most doctors by including another procedure called a CPC that makes it more successful. Before talking to him, Blake and I researched some of his papers and found he really only does the CPC on infants. So on a child Nate's age, they would do the regular ETV, which more doctors do--but not Dr. Tulipan.
Dr. Warf was very nice to talk to. He's personable and genuinely caring, and he has a very impressive reputation as a neurosurgeon. He seemed to understand what a huge decision this is for us and tried to help me think through all the options. The first thing he said was that he would hate to see a 5 year old get a shunt for a spinal fluid leak. He also admitted that he may be a bit fanatical about trying to avoid shunts, and I said I was too for my own son. His concern with the shunt was that some kids who get a shunt for something like this when they don't need it for hydrocephalus, can then BECOME shunt dependent. So it could be that if we did the shunt and just decided to keep it forever because it wasn't worth another surgery to remove it, the brain could get used to draining the fluid that way, and some of the small aqueducts in Nate's brain could potentially close, and then he'd be dependent on the dang shunt. So if he had a malfunction or something, we'd have all those issues. He thought if we did decide to go the shunt route, we should then go back and remove it a few months down the road. If you wait too long, it can get attached in there, and then you risk a brain bleed when removing it. This has just helped confirm that I want to avoid the shunt if at all possible.
He said he would be happy to treat Nate, but he didn't think it was necessary for us to travel all that way, when there is a neurosurgeon closer to us (Cincinnati) who could do the job. But he told me what he thought his plan of action would be. He would prefer to insert an external shunt/temporary drain to get the fluid intentionally too low. While he was in there, he would test the pressure of the fluid. If Nate did have high pressure (hydrocephalus), which he is not convinced he does because his ventricles look pretty good, then he would do the ETV. THEN he would re-open his back, find the hole, and close it up again. He would leave Nate on the external drain for about a week or so until he thought the back was healing good, then he could remove the drain at the bedside.
So what to do. Well, we could go to Boston for that route. We could get a third opinion in Cincinnati with another doctor that does the ETV, and maybe he would do the same course of action or a different one. We could ask Dr. Tulipan if he would do the external drain and third back closure, but he would not do the ETV while he was in there if needed.
I called Dr. Tulipan's nurse to get her opinion on what we should do about our appointment on Monday. I told her about my conversation with Dr. Warf, and I said, "I don't know how open to suggestion Dr. Tulipan is ..." and we both laughed. :) She said Dr. T would do whatever I felt was best as long as he didn't think it would endanger Nate. She asked me what my gut was telling me, and I said my gut is saying no shunt. She said I should follow that. But her professional opinion was that I should talk with Dr. Tulipan about all of this before making any decisions about going to a different doctor, and I agree with that. I really, really want to stick with Dr. Tulipan if at all possible. So we are keeping the appointment on Monday, and we'll talk. I can always get Nate's records sent to Cincinnati on Monday. As Dr. Warf says, Nate is not in any kind of emergent danger. We just want this to be over so we can move on.
Nate got out of the house a little today. He's only been out of the house for doctor visits or wagon rides down the street since Labor Day. My friend Kellie invited us to her son's pirates and princesses birthday party, and as I was getting Georgia ready in her princess dress (which she hates), Nate said he really, really wanted to go in his pirate costume. So we figured it out. We put rolled up towels in the car seat so it didn't hurt Clive, and we just helped him a lot. I'm glad we attempted it because it was good for him to get out.
So, we still won't know what we're doing, and I'm taking my dad's advice of just doing nothing until I'm certain what we should do. We're praying for clear answers. I'll try to update more Monday evening.
Monday, October 17, 2011
2011 Spina Bifida Day of Prayer
We proclaim October 24 as the 2011 Spina Bifida Day of Prayer. October is Spina Bifida Awareness Month, and there is much to pray for in the Spina Bifida community. Please pass this on to your Facebook friends, church groups, prayer circles, coworkers, families, and anyone who believes in the power of prayer.
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in... heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20
Let us pray together. Here are a few suggestions for your prayers:
1. Awareness. Spina Bifida is the most common permanently disabling birth defect in the United States, yet no one knows what it is. We pray for the Spina Bifida Association and its chapters to create a unified and effective message of hope and help. And we pray that society would see people with Spina Bifida and other disabilities as valued citizens.
2. The medical community. We pray that the medical community would understand the birth defect and its related issues. We pray that obstetricians would be educated about Spina Bifida and will give expectant parents the diagnosis accurately and compassionately. We pray for continued research and medical advancements to improve the lives of children and adults with Spina Bifida, to find ways of preventing Spina Bifida, and to find a cure.
3. The parents. We pray for the parents who find out their unborn child has Spina Bifida, that you would give them hope and peace beyond all understanding to make the decision to give life. (64% of pregnancies affected by Spina Bifida are terminated.) We pray for the parents who watch their children (young and old) struggle with the challenges of Spina Bifida, that they would be given the strength they need to get through each day and the wisdom to raise their children as you want them to be raised.
4. Children and adults with Spina Bifida. We pray that you would make them lights in a dark world, to be instruments of your divine purpose and will. We pray for their physical wellness, but also for them to use the challenges you gave them to bring you glory.
Amen!
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6
Join the Facebook event and RSVP so you can be counted among those praying for Spina Bifida!
https://www.facebook.com/event.php?eid=306848549329368#!/event.php?eid=306848549329368
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in... heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20
Let us pray together. Here are a few suggestions for your prayers:
1. Awareness. Spina Bifida is the most common permanently disabling birth defect in the United States, yet no one knows what it is. We pray for the Spina Bifida Association and its chapters to create a unified and effective message of hope and help. And we pray that society would see people with Spina Bifida and other disabilities as valued citizens.
2. The medical community. We pray that the medical community would understand the birth defect and its related issues. We pray that obstetricians would be educated about Spina Bifida and will give expectant parents the diagnosis accurately and compassionately. We pray for continued research and medical advancements to improve the lives of children and adults with Spina Bifida, to find ways of preventing Spina Bifida, and to find a cure.
3. The parents. We pray for the parents who find out their unborn child has Spina Bifida, that you would give them hope and peace beyond all understanding to make the decision to give life. (64% of pregnancies affected by Spina Bifida are terminated.) We pray for the parents who watch their children (young and old) struggle with the challenges of Spina Bifida, that they would be given the strength they need to get through each day and the wisdom to raise their children as you want them to be raised.
4. Children and adults with Spina Bifida. We pray that you would make them lights in a dark world, to be instruments of your divine purpose and will. We pray for their physical wellness, but also for them to use the challenges you gave them to bring you glory.
Amen!
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6
Join the Facebook event and RSVP so you can be counted among those praying for Spina Bifida!
https://www.facebook.com/event.php?eid=306848549329368#!/event.php?eid=306848549329368
Wednesday, October 12, 2011
How is Nate doing?
Lots of people are asking, and I apologize for not giving updates. I'm just not quite sure what to say.
Nate's back still looks pretty bad. Clive is still here, and he might have grown a little. I think it might skeeve some people out for me to post a pic of it (but that doesn't stop me from showing everyone who stops by, and showing people photos of it on my phone!). It sticks out of his back like maybe half of a baseball. SB moms, you know what a skin covered lesion on a baby looks like? It's a lot like that.
So we sort of have a plan. The main plan is to continue to pray for healing. In fact, we have some people from the church and our Bible study to come over to the house tomorrow specifically to pray for Nate. We are praying for a miracle and believing God can heal Nate. (And I am certain it will literally take a miracle for this to go away on its own. The boy isn't cooperating with bedrest as it would be needed to heal.) But, I know that sometimes God has other miracles in mind for us, and sometimes they are more miraculous than just physical healing. So at the same time, we are still pursuing the medical options for if it doesn't go away.
Today we got Nate's medical records sent to Childrens Hospital Boston, and once Dr. Warf's office receives them they are going to set up a tele-conference for us to speak with Dr. Warf about whether the ETV procedure is a good option for Nate. It might not be, considering the fluid is collecting on the back instead of in the brain. I don't know. But we feel like we need to at least pursue this in order to make the right decision and have no regrets. We are praying the answer will be a clear yes or no.
If yes, we would travel to Boston, I guess. If no, we go back to Dr. Tulipan for a shunt. Our appointment is scheduled for Oct. 24, but if it gets bigger or starts leaking, we are to go back sooner. Blake thinks it's bigger. I think it has just changed shape.
We aren't sure when Nate will go back to school. He's already been out more than a month, and he for sure won't return for the rest of the month. We know whenever he goes back to school, he is going to be very weak from all this bedrest. He actually hasn't taken any independent steps since before his first surgery. He does take a few steps each day while putting a lot of weight on me. I've talked with the teacher and school PT about options for him moving about the school, but we don't really have a good plan just yet. I have gotten Nate set up for a new "outside" PT who does e-stim, which I am hopeful will help his little toesies start moving again, but we have to wait until the neuro says it's safe for him to return to PT.
I worry he's missing so much of school. I know it's Kindergarten, but I also know what I see of the work that they are sending home for him, and he's falling behind. I told his teacher that it will be like him coming in as the new kid when he returns, but she assured me that they talk about Nate every morning when they go over the calendar, and once a week they have been making cards and banners and gifts to send home for him. How sweet is that?
I'm worried about a lot of things. I'm afraid his back will open, and he'll get meningitis and get brain damage or die. I'm worried he'll get a shunt and it will get infected or he'll have to have 5 surgeries to get it right. I'm worried he'll have to repeat Kindergarten, or he won't and he'll be lost at school and hate school forever. I'm afraid he'll never sleep in his bed alone again because his daddy is spoiling him so bad. I'm worried because he looks so pale. It's constant, and most of it's silly or maybe a little crazy.
I started reading this Priscilla Shirer book called, "A Life Interrupted" the other night. It's about the story of Jonah and related to how we all get these "interruptions" or "interventions" in our lives. We like to say we are going to follow God wherever he leads us, until it gets inconvenient or scary or worrisome and then we panic. Do you ever read something, and it seems like the person is writing to you personally? And sometimes it hurts a little! But really, I can sit around and worry and pout, or I can believe that God's got this. And that this little interruption/intervention is going to lead to something so great that I never would have thought of it with my little plan to keep everybody safe and out of the operating room.
So that's how we're doing.
Nate's back still looks pretty bad. Clive is still here, and he might have grown a little. I think it might skeeve some people out for me to post a pic of it (but that doesn't stop me from showing everyone who stops by, and showing people photos of it on my phone!). It sticks out of his back like maybe half of a baseball. SB moms, you know what a skin covered lesion on a baby looks like? It's a lot like that.
So we sort of have a plan. The main plan is to continue to pray for healing. In fact, we have some people from the church and our Bible study to come over to the house tomorrow specifically to pray for Nate. We are praying for a miracle and believing God can heal Nate. (And I am certain it will literally take a miracle for this to go away on its own. The boy isn't cooperating with bedrest as it would be needed to heal.) But, I know that sometimes God has other miracles in mind for us, and sometimes they are more miraculous than just physical healing. So at the same time, we are still pursuing the medical options for if it doesn't go away.
Today we got Nate's medical records sent to Childrens Hospital Boston, and once Dr. Warf's office receives them they are going to set up a tele-conference for us to speak with Dr. Warf about whether the ETV procedure is a good option for Nate. It might not be, considering the fluid is collecting on the back instead of in the brain. I don't know. But we feel like we need to at least pursue this in order to make the right decision and have no regrets. We are praying the answer will be a clear yes or no.
If yes, we would travel to Boston, I guess. If no, we go back to Dr. Tulipan for a shunt. Our appointment is scheduled for Oct. 24, but if it gets bigger or starts leaking, we are to go back sooner. Blake thinks it's bigger. I think it has just changed shape.
We aren't sure when Nate will go back to school. He's already been out more than a month, and he for sure won't return for the rest of the month. We know whenever he goes back to school, he is going to be very weak from all this bedrest. He actually hasn't taken any independent steps since before his first surgery. He does take a few steps each day while putting a lot of weight on me. I've talked with the teacher and school PT about options for him moving about the school, but we don't really have a good plan just yet. I have gotten Nate set up for a new "outside" PT who does e-stim, which I am hopeful will help his little toesies start moving again, but we have to wait until the neuro says it's safe for him to return to PT.
I worry he's missing so much of school. I know it's Kindergarten, but I also know what I see of the work that they are sending home for him, and he's falling behind. I told his teacher that it will be like him coming in as the new kid when he returns, but she assured me that they talk about Nate every morning when they go over the calendar, and once a week they have been making cards and banners and gifts to send home for him. How sweet is that?
I'm worried about a lot of things. I'm afraid his back will open, and he'll get meningitis and get brain damage or die. I'm worried he'll get a shunt and it will get infected or he'll have to have 5 surgeries to get it right. I'm worried he'll have to repeat Kindergarten, or he won't and he'll be lost at school and hate school forever. I'm afraid he'll never sleep in his bed alone again because his daddy is spoiling him so bad. I'm worried because he looks so pale. It's constant, and most of it's silly or maybe a little crazy.
I started reading this Priscilla Shirer book called, "A Life Interrupted" the other night. It's about the story of Jonah and related to how we all get these "interruptions" or "interventions" in our lives. We like to say we are going to follow God wherever he leads us, until it gets inconvenient or scary or worrisome and then we panic. Do you ever read something, and it seems like the person is writing to you personally? And sometimes it hurts a little! But really, I can sit around and worry and pout, or I can believe that God's got this. And that this little interruption/intervention is going to lead to something so great that I never would have thought of it with my little plan to keep everybody safe and out of the operating room.
So that's how we're doing.
Thursday, October 6, 2011
My Spina Bifida Awareness Month Project--Join in!
October is Spina Bifida Awareness Month! How do we spread awareness about Spina Bifida when there is so much emphasis on pink ribbons this month? Here's my small idea that could have an impact if we all do it. I'm mostly talking to my Spina Bifida mom readers here, but other friends, family, and strangers are welcome to join in. This is easy and quick.
Let's all send a "letter to the editor" of our local newspapers. We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I am going to do and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions.
Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom.
Subject/Headline: Learn something about Spina Bifida in October
To the Editor:
October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States.
What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.
What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70% by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.
What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.
What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.
If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.
Full Name
Address
E-mail address
Daytime phone number
Let's all send a "letter to the editor" of our local newspapers. We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I am going to do and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions.
Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom.
Subject/Headline: Learn something about Spina Bifida in October
To the Editor:
October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States.
What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.
What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70% by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.
What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.
What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.
If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.
Full Name
Address
E-mail address
Daytime phone number
Wednesday, October 5, 2011
A Georgia post
So much of our thoughts and energies are on getting Nate well right now. Meanwhile, Georgia is a little crackerjack. She gets prettier, sillier, smarter, and bigger every day.
She loves going to Bekah's house every day, where she can play dolls, dress up, and dance with her big girl mentor, Mia. Every morning she says, "Mama, let's go to Bekah's house."
When we get ready to go to Bekah's, she has to gather her babies. Just like mama, she has to put her baby in her car seat and grab her cell phone before heading out the door. :) One morning we were running late and Georgia was frantically searching for her baby. I said, "Here's your Cabbage Patch baby." She said, "No, I want Walmart baby!" Crack me up! One morning after I got her in her car seat, she started wailing, and we were five minutes down the road before I could get her to say what she was crying about: She forgot her baby. Poor baby.
At night when I put her in her crib, she is in the middle with about 3 babies and her glowing seahorse lined up next to her. I touch each of their noses, "Good night, baby. Good night, baby. Good night, sea horse." Then I get to Georgia and she says, "I Ja-ja." "Good night, Georgia."
That's how she introduces herself to everyone. Mindy came over for the first time in a couple months, and when she came in, Georgia says, "I Ja-ja! Dat's Nate!" Yes, Mindy knows who you are.
Yesterday:
Me: Georgia, what's your favorite color?
Georgia: .... I dunno. I four! (No she's not)
A couple days ago:
Georgia: I wuv Mama
Blake: Do you love Daddy?
Georgia: No. Go to work. Do you need your shoes?
Last weekend:
Blake, walking into the living room and pointing at a spot on the carpet: Is this pee or water?
Georgia, looking up from her book nonchalantly: I peed it.
She is sort of potty training. We only have time to really do it on the weekends. I don't think she has successfully peed on the potty, but she pooped once and was horrified. She really likes undressing her baby and sitting her on a potty next to her. And she goes "Pssssss" like the baby is peeing. Ha!
Oh, and one of her babies makes a crying sound if you squeeze it, and if you do this, Georgia will walk over and say, "Shhhh!!" and walk away. Every. Single. Time.
I have been awful about taking pictures lately. But here are a few. A couple weeks ago when my mom was here, she was pushing Georgia on the swing until she saw this:
Tonight I took Georgia for a walk. With Nate getting so much attention, she needs a little one-on-one time.
She loves going to Bekah's house every day, where she can play dolls, dress up, and dance with her big girl mentor, Mia. Every morning she says, "Mama, let's go to Bekah's house."
When we get ready to go to Bekah's, she has to gather her babies. Just like mama, she has to put her baby in her car seat and grab her cell phone before heading out the door. :) One morning we were running late and Georgia was frantically searching for her baby. I said, "Here's your Cabbage Patch baby." She said, "No, I want Walmart baby!" Crack me up! One morning after I got her in her car seat, she started wailing, and we were five minutes down the road before I could get her to say what she was crying about: She forgot her baby. Poor baby.
At night when I put her in her crib, she is in the middle with about 3 babies and her glowing seahorse lined up next to her. I touch each of their noses, "Good night, baby. Good night, baby. Good night, sea horse." Then I get to Georgia and she says, "I Ja-ja." "Good night, Georgia."
That's how she introduces herself to everyone. Mindy came over for the first time in a couple months, and when she came in, Georgia says, "I Ja-ja! Dat's Nate!" Yes, Mindy knows who you are.
Yesterday:
Me: Georgia, what's your favorite color?
Georgia: .... I dunno. I four! (No she's not)
A couple days ago:
Georgia: I wuv Mama
Blake: Do you love Daddy?
Georgia: No. Go to work. Do you need your shoes?
Last weekend:
Blake, walking into the living room and pointing at a spot on the carpet: Is this pee or water?
Georgia, looking up from her book nonchalantly: I peed it.
She is sort of potty training. We only have time to really do it on the weekends. I don't think she has successfully peed on the potty, but she pooped once and was horrified. She really likes undressing her baby and sitting her on a potty next to her. And she goes "Pssssss" like the baby is peeing. Ha!
Oh, and one of her babies makes a crying sound if you squeeze it, and if you do this, Georgia will walk over and say, "Shhhh!!" and walk away. Every. Single. Time.
I have been awful about taking pictures lately. But here are a few. A couple weeks ago when my mom was here, she was pushing Georgia on the swing until she saw this:
Tonight I took Georgia for a walk. With Nate getting so much attention, she needs a little one-on-one time.
She talked the whole time. "What's that? Who made that mess? I see a bee! ...."
"Tickle my belwy!"
"Wook at dat punkin!"
"I yike my new pj's!"
Look at all that hair! She sure is getting big.
Walk-N-Roll Team Nate the Great Update
SBAK's Walk-N-Roll for Spina Bifida was this past Saturday. I had a couple of roles in this. As SBAK's Executive Director, I helped plan it, got sponsorships, got media coverage, worked with teams, spoke at the walk, etc. As Nate's Mom, I led (well, I pretty much WAS) Team Nate the Great. I set a goal of $2,500, then quickly realized how difficult that would be when I was simultaneously raising $11,000 in sponsorships and doing all my E.D. stuff!
But I have some very generous friends and family! A few family members made large donations. Many friends--including some in my SB family--made donations in Nate's honor. And my mom and I sold the Take That! Spina Bifida t-shirts, which raised more than $600! Thanks to everyone who ordered a t-shirt or made a donation (or both in some cases!).
The final total ... $2,450! Wow! Only $50 away from my goal, and I am totally happy with that! This was my third year raising money for Team Nate the Great. The first year (I was not working for SBAK), I think we raised $400+. Last year (I was program coordinator) we raised around $1,400? This was the first year I actually placed among the top fundraising teams! I declined my award because I, you know, get paid to fundraise for SBAK, but I was still pretty proud of our team!
We had a great crowd there, despite the chilly weather. After the walk, I enjoyed the chance to speak from the stage. Everyone seemed to have a great time, but it wrapped up pretty quickly because of the cold.
We won't have an exact number for a few days, but it looks like we raised over $41,000 for SBAK! Wow! we are going to be able to do a lot of great stuff with that money. And it was a good increase over last year's walk, which is awesome in this economy.
The only bummer of the day for me was that Nate and the rest of the family couldn't be there. But I walked for all of us. :) Here are some photos, courtesy of Kelly Davenport Photography.
(And this one's from my iphone, courtesy Michelle Zangari. :)
Again, a huge THANK YOU to everyone who helped pull this off!
But I have some very generous friends and family! A few family members made large donations. Many friends--including some in my SB family--made donations in Nate's honor. And my mom and I sold the Take That! Spina Bifida t-shirts, which raised more than $600! Thanks to everyone who ordered a t-shirt or made a donation (or both in some cases!).
The final total ... $2,450! Wow! Only $50 away from my goal, and I am totally happy with that! This was my third year raising money for Team Nate the Great. The first year (I was not working for SBAK), I think we raised $400+. Last year (I was program coordinator) we raised around $1,400? This was the first year I actually placed among the top fundraising teams! I declined my award because I, you know, get paid to fundraise for SBAK, but I was still pretty proud of our team!
We had a great crowd there, despite the chilly weather. After the walk, I enjoyed the chance to speak from the stage. Everyone seemed to have a great time, but it wrapped up pretty quickly because of the cold.
We won't have an exact number for a few days, but it looks like we raised over $41,000 for SBAK! Wow! we are going to be able to do a lot of great stuff with that money. And it was a good increase over last year's walk, which is awesome in this economy.
The only bummer of the day for me was that Nate and the rest of the family couldn't be there. But I walked for all of us. :) Here are some photos, courtesy of Kelly Davenport Photography.
(And this one's from my iphone, courtesy Michelle Zangari. :)
Again, a huge THANK YOU to everyone who helped pull this off!
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