Since the little girl with SB I wrote about last night was in the ICU, we got a new roommate in the middle of the night. At 3am, lights came on, there was a baby crying, and a mom, dad, and grandma all retelling the story of a seizure. There was no way to sleep through this, even for Nate.
Then at 5:45am, a nurse woke me up and said it was time to go downstairs for Nate's MRI. Me: "Nate's what? Why?" She said they wanted to check his ventricles before he leaves. I said someone is going to need to explain to me why this is necessary, when he is feeling great. No one, including Dr. Warf, had told me about this. We had talked a little about possibly needing a scan the previous morning when he was having headaches, but after he started feeling better, no one mentioned it. So one of the residents came in, and first thing he said was that Dr. Warf ordered the MRI after he talked to me yesterday evening. I was skeptical because why would he not tell me that when he saw me, but if Dr. Warf wanted it, I guess we have to do it. So I had to wake up Nate, who was not happy to be woken up. On the way down to MRI, I asked his nurse who ordered the MRI and when. The nurse practitioner ordered it at 9:30 am yesterday morning, when he was having headaches. That's what I thought. Now, maybe after Dr. Warf talked to us yesterday, they asked him if he still wanted it and he said sure, why not if it's already scheduled. I'll assume the resident didn't just outright lie to me. But either way, it was an unnecessary MRI, in my opinion. I hate doing tests just cause we can.
Nate was scared to death. This was to be a really quick (like 2 minute) head scan, but it's the first time he's done this not sedated. They put things over his ears, but loud noises really bother Nate, and his head had to be in this cage-like thing, and the MRI was scary. He screamed the whole time. I was MAD. We came back to the room, and I was too mad to go back to sleep. I vented to the nurse, but by the time the neuro team rounded, I had decided it wouldn't help anything to even mention it. I'm all about advocating for my kid, but doing so after the fact just makes me difficult. Anyway, his ventricles were stable. Surprise, surprise.
Physical therapy had to come by and get Nate up and walking and clear him for discharge. I'm not totally sure why discharge totally hinges on whether he can get up and walk, since we have the wheelchair here, and he has a PT at home, but that's the game we had to play today. She came by around 10, and we got Nate up and standing, and all of a sudden, Nate was having horrible HIP pain! What the heck! Seriously? We're in the hospital for a brain/back surgery, and he first has a uro issue, and now an ortho issue! He's falling apart! At first he couldn't take any steps and the PT said we were going to have to get him "looked at" (think: consult with ortho, x-rays, etc.), but after a few minutes he wasn't having any pain and could walk (with a lot of help) to the door and back. What's the deal with the hips? I have no idea. For a few months now, every now and then Nate will complain his hip is sore, but I have put it to the back of my mind since we had other more urgent issues to deal with. I assured them that we would certainly follow up with Nate's regular ortho when we get home, and that I am comfortable with handling him and helping him walk and all that in the meantime. Sheesh.
Nate was in a BAD mood, and I totally blame lack of sleep, and ultimately the stupid MRI. He had several screaming fits today. They are exhausting. People try to calm him down, but all you can do is let him throw a fit until he's done, and then try talking to him. He happened to be throwing one of these fits when one of the doctors came around to discharge us, and in the middle of yelling Nate said, "My head hurts!" Oh lawd have mercy on all of us. I said, "Well, stop screaming and it will stop hurting!" (And maybe mine will too!) The doctor looked very skeptical after the hip thing and the headache, and he said there was no rush to get us out of there. I said yes there is. He is fine, and we need to leave this hospital. We will be staying 6 blocks away for more than a week. He will be okay. He let us go. Whew.
We are staying at a local "family house," kinda like the Ronald McDonald House, just not exactly that. It is much less expensive to stay here than at a hotel, and it was hard to get in--they are usually booked up, but they fit us in. We have a nice little room with a full size bed for me and Nate and a twin bed for my mom, with a chair and TV. We will be spending a lot of time in here for the next week! There are community bathrooms down the hall. But the great thing about this place is that it's for families with kids in the hospital, so they have a community kitchen downstairs, a "living room" with toys and movies, free laundry facilities, etc. Tonight we met a really nice family from Alabama who also had fetal surgery, but for their son who had a heart issue. He's 3.5 now and had open heart surgery this past Tuesday, but you'd never know it now. He and my kid who recently had brain and spine surgery were racing around and playing like any other kids. We ate dinner together and shared stories. Oh, and the family with the little girl with SB we roomed with the other night--the parents and grandparents are checking in here tonight too. It's a special place, and we are blessed to have it available.
Still, it's going to be a really long week. We have no transportation. My mom walked 10 minutes to the nearest store today, and it was a Trader Joe's that didn't have any of the things Nate likes--such as Jiff peanut butter or frozen french toast sticks--and they certainly don't have Diet Pepsi! :) My mom made another stop at a CVS and walked back with all of our stuff. It would be so much fun if we could rent a car and just go exploring over the next week, but Nate needs to be laying down and resting as much as possible. It will be a challenge to keep him occupied. But I'm thankful at least for a change of scenery, and a private room!
Saturday, November 12, 2011
Friday, November 11, 2011
Boston Day 12 ... Just a little setback
So, we have these roommates right now, and turns out they go to sleep at like 8:30 at night (which meant I hesitated to even watch TV cause the little girl needed her sleep) and they wake up before 7am. Nate and I sleep till 8, thank you very much. But not this morning.
So we were both awake but trying to go back to sleep, and Nate started moaning a little. I asked him what was wrong, and he said he was sooo tired. Okay, me too, let's go back to sleep. More moaning. Then he started gagging like he was going to throw up. That woke me up! I had a bucket next to his head, but he was laying flat on his back, so I sat him up quickly so he wouldn't choke. He threw up a little, and then he got a MAJOR headache. Like holding the sides of his head, screaming "Ow ow ow ow!" and whimpering, "Mama" kind of headache. Well, that's not good. But maybe it was one of those low pressure headaches cause I sat him up too quickly.
He didn't want breakfast. He just kept saying he was tired. I sat next to him with my hard-boiled egg, and he took one look at me and gagged a little. A few minutes later as I was brushing his teeth, he threw up again, and got another bad bad bad headache.
By 11am, he'd thrown up 3 times and had about 5 short-lived (like 2 minute) splitting headaches. But he ate a nice bland breakfast and was in better spirits. Then he wanted to take a nap. He slept for awhile, and a headache woke him up. But he couldn't get really good and awake. He didn't want to sit up. He didn't want to eat. I could not get him to come out of it.
Let's see: Vomiting, headaches, lethargy ... SB moms, what does this sound like? Yes, hydrocephalus.
The docs talked about doing scans, but really it was pretty obvious what was going on here. He was having high pressure in his brain (and presumably his back too). We tried him in different positions, it just didn't matter. They hoped it would just start regulating itself. Maybe his brain just got used to the external drain pumping out fluid, and now it didn't know how to get back to a new normal of no external drain but with the addition of an internal drain (ETV). A couple times I said to myself, we had BETTER not end up with a dang shunt in Boston.
Oh, and one more symptom: low grade fever. Actually, the nurse wouldn't even call it a fever. It was 99.something. But he felt so warm to me, and my mind jumped to the worst--BRAIN INFECTION (cue scary music). They assured me if he had an infection he'd have a very high fever. Still, I asked them to give him some tylenol to help that come down, and a kind nursing student rigged up the perfect ice pack for Nate--cold, but not too cold, and somehow not at all wet. After a half hour and some restful coloring with Granna, Nate decided he wanted to go for a wheelchair ride. Okay then!
And besides a couple minor headaches, he felt better the rest of the day! In fact, he felt great. We went downstairs to watch parts of Cars II that they were playing for the kids. We spent probably an hour and a half in the "activity room" as Nate spotted every single train, picture of a train, piece of train track, and thing that looks sort of like a train in the whole room. Tonight he feels wonderful and is sleeping peacefully. I have elevated the head of his bed slightly to try to avoid whatever happened this morning. But if he still feels like this in the morning, he'll be discharged.
Today was a little frightening at times, but it could have been frustrating if we had our hearts set on getting discharged today. I didn't care in the least. It's not like we're going home anyway. I think Nate has done amazingly well and has healed fantastically, and tomorrow he will be ready for discharge. And we're going to take it very easy over the next week, but I'm not scared to leave the hospital.
Actually, I'm really happy we had to stay today, because I received a blessing from an unlikely source: Our roommates. I know, I have been complaining about roommates since we have gotten here, but tonight I am so thankful for them. Yesterday we got a new roommate, a little girl who we soon found out had Spina Bifida. With only a curtain between us, it's hard to not hear what is being said even when I am truly trying to not listen. But as we passed by each others' sides of the room, the girl's parents and I talked some too. She's had 13 shunt revisions, she now actually has THREE shunts (left vent, brain stem, spine), has had 3 chiari decompressions, two detetherings, had a trach for about a month earlier this year ... you name it, she's had it. She's about a year older than Nate. They're from Maine, but the only pediatric neurosurgeon in the state was out hunting this weekend. They were sent to Boston to see a certain doctor, but it turns out that doc was out of town too. So they were "stuck" with Dr. Warf. Lucky them.
They were really worried about her. For the first time ever, her eyes were turning. Her vocal cords are weak. I heard her gasping for air sometimes. She was a shell of the little girl she used to be. Her dad told me tonight that he was wondering if they were going to have to shop for a little casket. They took her for an MRI this morning, and they were so nervous about the results, what complicated issue it would be this time. Dr. Warf came in and sat down and talked with them extensively. He recognized all of the issues. But he thought they should start with the shunt, to go with the "It's the shunt, stupid" approach. That sounded too simple. Her shunt was tapped earlier and seemed to work fine. In fact, it's been tapped several times in the last few years, but it seems to be working and hasn't been revised since 2006. He said many years ago when he was a young neurosurgeon, there was a boy who was rapidly declining. He tapped the shunt and it looked fine, so he went through with several complicated surgeries--a detethering, a decompression, etc. None of it worked, so he replaced the shunt, and that fixed it. He said he's never forgotten that. It's the shunt, stupid.
While Dr. Warf was talking to them, the nurse came and said they were ready to take the girl to surgery. This had to be done now. She was very sick. Plus, Dr. Warf is going to Japan tomorrow. Now or never. As they wheeled her out, her mom and I locked eyes for a second. She knew Nate had just been through three surgeries, she had heard him throwing up (and even came over to give us a towel) and heard him screaming from the headaches. There was just that acknowledgment between the two of this. This is hard, but we're going to do it. I whispered good luck.
They were gone all. day. Around 7, Dr. Warf came in to check on Nate, not in his surgical scrubs but back in his bow tie and white coat. All I could think about was that he had obviously been out of surgery for awhile, so where was the little girl. A couple more hours passed by, and I even texted my mom that she wasn't back yet. I really wondered whether she made it through the surgery. Then her dad came in and started gathering their stuff. He said hello, and I asked how it went. He was so relieved. He couldn't believe it. The shunt was totally blocked. Within minutes of waking up, she is back to herself! She's smiling, and her eyes are back to normal! He asked Dr. Warf whether this could have been the problem all along and the other surgeries were unneccessary. Dr. Warf only said that there was no way of knowing. They had her in the ICU for the night to make sure she was stable, but they were just thrilled that she's back to herself again.
Two thoughts: 1. Dr. Warf is amazing. Seriously. 2. God is AMAZING. What are the odds that the girl's neurosurgeon would be out hunting, and they would be sent to Boston for another doctor, who happened to be out of town, and they by chance were stuck with Dr. Warf! This was divine intervention. And praise the Lord that little girl is better. Wow. I don't even know these people, but I witnessed their miracle today, and it blessed me big time.
So, we shall try again tomorrow.
So we were both awake but trying to go back to sleep, and Nate started moaning a little. I asked him what was wrong, and he said he was sooo tired. Okay, me too, let's go back to sleep. More moaning. Then he started gagging like he was going to throw up. That woke me up! I had a bucket next to his head, but he was laying flat on his back, so I sat him up quickly so he wouldn't choke. He threw up a little, and then he got a MAJOR headache. Like holding the sides of his head, screaming "Ow ow ow ow!" and whimpering, "Mama" kind of headache. Well, that's not good. But maybe it was one of those low pressure headaches cause I sat him up too quickly.
He didn't want breakfast. He just kept saying he was tired. I sat next to him with my hard-boiled egg, and he took one look at me and gagged a little. A few minutes later as I was brushing his teeth, he threw up again, and got another bad bad bad headache.
By 11am, he'd thrown up 3 times and had about 5 short-lived (like 2 minute) splitting headaches. But he ate a nice bland breakfast and was in better spirits. Then he wanted to take a nap. He slept for awhile, and a headache woke him up. But he couldn't get really good and awake. He didn't want to sit up. He didn't want to eat. I could not get him to come out of it.
Let's see: Vomiting, headaches, lethargy ... SB moms, what does this sound like? Yes, hydrocephalus.
The docs talked about doing scans, but really it was pretty obvious what was going on here. He was having high pressure in his brain (and presumably his back too). We tried him in different positions, it just didn't matter. They hoped it would just start regulating itself. Maybe his brain just got used to the external drain pumping out fluid, and now it didn't know how to get back to a new normal of no external drain but with the addition of an internal drain (ETV). A couple times I said to myself, we had BETTER not end up with a dang shunt in Boston.
Oh, and one more symptom: low grade fever. Actually, the nurse wouldn't even call it a fever. It was 99.something. But he felt so warm to me, and my mind jumped to the worst--BRAIN INFECTION (cue scary music). They assured me if he had an infection he'd have a very high fever. Still, I asked them to give him some tylenol to help that come down, and a kind nursing student rigged up the perfect ice pack for Nate--cold, but not too cold, and somehow not at all wet. After a half hour and some restful coloring with Granna, Nate decided he wanted to go for a wheelchair ride. Okay then!
And besides a couple minor headaches, he felt better the rest of the day! In fact, he felt great. We went downstairs to watch parts of Cars II that they were playing for the kids. We spent probably an hour and a half in the "activity room" as Nate spotted every single train, picture of a train, piece of train track, and thing that looks sort of like a train in the whole room. Tonight he feels wonderful and is sleeping peacefully. I have elevated the head of his bed slightly to try to avoid whatever happened this morning. But if he still feels like this in the morning, he'll be discharged.
Today was a little frightening at times, but it could have been frustrating if we had our hearts set on getting discharged today. I didn't care in the least. It's not like we're going home anyway. I think Nate has done amazingly well and has healed fantastically, and tomorrow he will be ready for discharge. And we're going to take it very easy over the next week, but I'm not scared to leave the hospital.
Actually, I'm really happy we had to stay today, because I received a blessing from an unlikely source: Our roommates. I know, I have been complaining about roommates since we have gotten here, but tonight I am so thankful for them. Yesterday we got a new roommate, a little girl who we soon found out had Spina Bifida. With only a curtain between us, it's hard to not hear what is being said even when I am truly trying to not listen. But as we passed by each others' sides of the room, the girl's parents and I talked some too. She's had 13 shunt revisions, she now actually has THREE shunts (left vent, brain stem, spine), has had 3 chiari decompressions, two detetherings, had a trach for about a month earlier this year ... you name it, she's had it. She's about a year older than Nate. They're from Maine, but the only pediatric neurosurgeon in the state was out hunting this weekend. They were sent to Boston to see a certain doctor, but it turns out that doc was out of town too. So they were "stuck" with Dr. Warf. Lucky them.
They were really worried about her. For the first time ever, her eyes were turning. Her vocal cords are weak. I heard her gasping for air sometimes. She was a shell of the little girl she used to be. Her dad told me tonight that he was wondering if they were going to have to shop for a little casket. They took her for an MRI this morning, and they were so nervous about the results, what complicated issue it would be this time. Dr. Warf came in and sat down and talked with them extensively. He recognized all of the issues. But he thought they should start with the shunt, to go with the "It's the shunt, stupid" approach. That sounded too simple. Her shunt was tapped earlier and seemed to work fine. In fact, it's been tapped several times in the last few years, but it seems to be working and hasn't been revised since 2006. He said many years ago when he was a young neurosurgeon, there was a boy who was rapidly declining. He tapped the shunt and it looked fine, so he went through with several complicated surgeries--a detethering, a decompression, etc. None of it worked, so he replaced the shunt, and that fixed it. He said he's never forgotten that. It's the shunt, stupid.
While Dr. Warf was talking to them, the nurse came and said they were ready to take the girl to surgery. This had to be done now. She was very sick. Plus, Dr. Warf is going to Japan tomorrow. Now or never. As they wheeled her out, her mom and I locked eyes for a second. She knew Nate had just been through three surgeries, she had heard him throwing up (and even came over to give us a towel) and heard him screaming from the headaches. There was just that acknowledgment between the two of this. This is hard, but we're going to do it. I whispered good luck.
They were gone all. day. Around 7, Dr. Warf came in to check on Nate, not in his surgical scrubs but back in his bow tie and white coat. All I could think about was that he had obviously been out of surgery for awhile, so where was the little girl. A couple more hours passed by, and I even texted my mom that she wasn't back yet. I really wondered whether she made it through the surgery. Then her dad came in and started gathering their stuff. He said hello, and I asked how it went. He was so relieved. He couldn't believe it. The shunt was totally blocked. Within minutes of waking up, she is back to herself! She's smiling, and her eyes are back to normal! He asked Dr. Warf whether this could have been the problem all along and the other surgeries were unneccessary. Dr. Warf only said that there was no way of knowing. They had her in the ICU for the night to make sure she was stable, but they were just thrilled that she's back to herself again.
Two thoughts: 1. Dr. Warf is amazing. Seriously. 2. God is AMAZING. What are the odds that the girl's neurosurgeon would be out hunting, and they would be sent to Boston for another doctor, who happened to be out of town, and they by chance were stuck with Dr. Warf! This was divine intervention. And praise the Lord that little girl is better. Wow. I don't even know these people, but I witnessed their miracle today, and it blessed me big time.
So, we shall try again tomorrow.
Thursday, November 10, 2011
Boston Day 11 ... A good one!
Nate did SO well with his drain raised higher, that I felt very good about the team clamping the drain early this morning. All day long Nate's ICP was at a very normal level, whether he was sitting straight up or laying flat. Know what that means? The ETV is working! And his spinal fluid has regulated.
One of the tests of whether he no longer needed the drain was to get him up and moving a little. I was hesitant about this after the bad experience we had at Vanderbilt with getting him up too early. But this is not too early, and he was ready. First we got him out of bed and sitting up in a chair, where he sat for over an hour and ate lunch. A little later, the PT helped him walk about 30 little shuffling steps to the door and then back to bed.
I think his back looks fantastic. It's "flat as a flitter" (as Dr. Warf said), and the scar is healing great already.
Nate and Granna played board games and puzzles for awhile, and Nate was having an awesome time. He was laughing so hard that he had the people rooming with us (behind the curtain) laughing as well as the doctors and nurses.
In the middle of the laughing, they came to remove his drain. We decided to take him to the procedure room (aka scream room) so he wouldn't disturb the little girl on the other side of the curtain. (A new roommate as of this afternoon. She has Spina Bifida too, and bless her heart she has had a hard time lately. It makes us look at this debacle with Nate and be thankful he doesn't have more problems.) Anyway, they asked me if I was coming to the procedure room, and I said yes. They said I didn't have to, and I said I was coming. They said are you sure? Absolutely. Try to keep me out of that room!
So, once in the procedure room, they let him just sit in his wheelchair, but he started freaking out a little when they held his head. I tried to keep him occupied with Talking Carl on my phone, and he couldn't figure out whether to laugh or cry. Talking Carl was imitating every time he yelped, and every time the doctor said something ... it really was pretty funny. Then they pulled the drain out, and I was pretty horrified at the spinal fluid just gushing out of his head. I mean, it was enough to soak his shirt. Wow. Then I saw the doctor bring out what looked like a fish hook, and he put in 3 stitches. Poor Nate. And no, they didn't numb it, because the numbing needle would have been two painful sticks anyway, so what's the point. But, ow.
He wheeled himself back to the room and I changed his shirt and got him all dried off from the CSF downpour, and for his treat--since he no longer has a drain or an IV tethering him to his bed--we took him downstairs to watch the "ball thing." (If you really want to know, there are pictures on the post from our first and second days here.) He had a blast, and I was a nervous wreck.
So, Nate has some leads on him tonight just to make sure his heart rate and oxygen level stay okay after getting the drain out, but essentially he is "wireless" now. His back looks great, his head looks great, and I really anticipate he will be discharged tomorrow. Yay! We are almost done with this phase! I know we still have a long way to go--waiting and resting next week, traveling back home, starting PT again to regain his strength, and then getting back into school in January. But THE WORST IS OVER! I am sure of it.
One of the tests of whether he no longer needed the drain was to get him up and moving a little. I was hesitant about this after the bad experience we had at Vanderbilt with getting him up too early. But this is not too early, and he was ready. First we got him out of bed and sitting up in a chair, where he sat for over an hour and ate lunch. A little later, the PT helped him walk about 30 little shuffling steps to the door and then back to bed.
I think his back looks fantastic. It's "flat as a flitter" (as Dr. Warf said), and the scar is healing great already.
Nate and Granna played board games and puzzles for awhile, and Nate was having an awesome time. He was laughing so hard that he had the people rooming with us (behind the curtain) laughing as well as the doctors and nurses.
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| See the nice bald spot right up top? That will hopefully fill in, in no time. |
So, once in the procedure room, they let him just sit in his wheelchair, but he started freaking out a little when they held his head. I tried to keep him occupied with Talking Carl on my phone, and he couldn't figure out whether to laugh or cry. Talking Carl was imitating every time he yelped, and every time the doctor said something ... it really was pretty funny. Then they pulled the drain out, and I was pretty horrified at the spinal fluid just gushing out of his head. I mean, it was enough to soak his shirt. Wow. Then I saw the doctor bring out what looked like a fish hook, and he put in 3 stitches. Poor Nate. And no, they didn't numb it, because the numbing needle would have been two painful sticks anyway, so what's the point. But, ow.
He wheeled himself back to the room and I changed his shirt and got him all dried off from the CSF downpour, and for his treat--since he no longer has a drain or an IV tethering him to his bed--we took him downstairs to watch the "ball thing." (If you really want to know, there are pictures on the post from our first and second days here.) He had a blast, and I was a nervous wreck.
So, Nate has some leads on him tonight just to make sure his heart rate and oxygen level stay okay after getting the drain out, but essentially he is "wireless" now. His back looks great, his head looks great, and I really anticipate he will be discharged tomorrow. Yay! We are almost done with this phase! I know we still have a long way to go--waiting and resting next week, traveling back home, starting PT again to regain his strength, and then getting back into school in January. But THE WORST IS OVER! I am sure of it.
Wednesday, November 9, 2011
Boston Day 10 ... Eventful
After last night's experience with the EVD leaking, I was awake a long time going over all the possible scenarios. I know I am no neurosurgeon, but I figured the fact that his ICP was high all day and then leaked out of the drain meant he just wasn't ready for his drain to be clamped. I wanted to ask Dr. Warf about leaving the drain open, just raising it higher to help wean him off the drain. It brought flashbacks of the NICU, when Nate was soooo slow to wean off the oxygen. He was on an 1/8 of a liter of O2 for weeks. Even though 1/8 liter is just a whisper of oxygen and should in no way make a difference, every time we took it off Nate, he desatted and needed it back on. I know Nate is not in control of how his body absorbs CSF, but this situation is soooo Nate. :)
Dr. Warf came bright and early this morning, and while I was expecting him to say we should take the clamping a little slower, instead he said he wanted to pull the drain today! Since the drain leaked last night, he does not want to risk infection. So he wanted to just get this show on the road a day earlier than we planned. He left the drain on 20 and raised the head of Nate's bed to 45 degrees. He said later today he wanted to clamp the drain and remove it either tonight or in the morning. Wait ... what?! I told him I didn't understand. If yesterday when he was clamped, he had high ICP and it leaked out of his head, wouldn't clamping him and sitting him up make it more likely to leak out his back instead? Didn't he prove he still had too much CSF to clamp? He said we've let this heal for nearly a week now, and it's time to start testing to see if it works.
After he left, my head was spinning. That was not what I had expected, but more than that, I was very nervous about his back leaking because we were being more aggressive. I felt sick to my stomach, and I just had a very bad feeling about this. I know Nate and his body. If you push him, it backfires. The nurse came in, and I asked her about it--Raising his head will make his intracranial pressure better, but won't the pressure in his back be even greater then? They didn't really know how to answer my question satisfactorily. I was so exhausted from the night that, despite trying so hard not to, I started crying to the nurse. I've said it before, I HATE crying in front of medical people. But I just apologized for the tears and kept asking questions. Well, when a nurse sees a mom crying, they jump into defender mode. The nurse I spoke to consulted with another nurse who came in to talk to me, and then the nurse practitioner. All of them let me know that they were also kind of surprised at the plan, and they understood my concerns, and they would not only pass them on to Dr. Warf but also go to bat for me. :) Which is totally unneccessary, but very sweet. (This is why I hate crying, because they think I'm not together enough to stand up for Nate myself.)
Nate had a very difficult morning. I don't know if it was from being so tired after staying up half the night, or residues from the medication, but he screamed the majority of the morning. I had flashbacks of our last encounter with oral steroids. :) He was upset about everything and nothing. Take this band-aid off! Put that band-aid back on! That kind of thing. Just as I got him calmed down and ready to take a nap ... we got another roommate. Ahhhhhh!!! Really? Today is a hard, hard day, and what would help us most of all is a little quiet. But, the roommate is a tiny baby who had surgery today, and the family is very quiet. And Nate quickly calmed down and has done pretty well the rest of the day. They've only witnessed a couple of good fits.
Dr. Warf was in the OR most of the day but came by this afternoon, presumably to clamp Nate's drain and raise his bed higher. I told him I had more questions. That I realize I am not a neurosurgeon, but I don't understand how this won't tempt Nate's back to open, if just yesterday he leaked from his drain. He understood my concerns, but he's also concerned about the EVD being in place for a week and it leaking last night and the risk of infection. I totally get that, and I totally want to avoid an infection, but I also want to avoid Clive happening again. All day all the nurses had told me they would watch his back closely, but if his back puffs out, it's pretty much game over, start at square one. I suggested we raise the EVD to 30 overnight, then clamp it in the morning, and then remove it tomorrow night. (My mom was just shaking her head and later said I'm the only person she knows who would make suggestions to a neurosurgeon,) He agreed to do that if it would make me feel more comfortable, and he still feels comfortable with that plan. I felt MUCH, much better after that. I like this plan. I think it's going to work.
Nate is doing great today on the new setting. His head is elevated to about halfway sitting up, his pressures have been good all day, and he hasn't been putting out a lot of CSF--except when he's throwing a good fit! Just as I was sitting here typing this, Nate is asleep next to me, and all of a sudden his ICP jumped from like 10 to about 22, and a bunch of fluid drained! What the heck! Not that anything is wrong, but what would make that happen, with him laying in the exact same place, asleep? Dr. Warf said your ICP can change when you're dreaming--isn't that crazy?
Unfortunately, we've also had a little urological issue (which teenager Nate would probably appreciate that I don't describe) that needs to be checked out in the morning. And tomorrow is the big day! Clamping the drain, and then removing it. We may be discharged as soon as Friday, or maybe Saturday. From there we will stay in their family house for the next week before seeing Dr. Warf one last time on Nov. 21. Today we booked a flight for Tuesday, Nov. 22, and we'll be back home for Thanksgiving. We will have a lot to be thankful for this Thanksgiving!
Dr. Warf came bright and early this morning, and while I was expecting him to say we should take the clamping a little slower, instead he said he wanted to pull the drain today! Since the drain leaked last night, he does not want to risk infection. So he wanted to just get this show on the road a day earlier than we planned. He left the drain on 20 and raised the head of Nate's bed to 45 degrees. He said later today he wanted to clamp the drain and remove it either tonight or in the morning. Wait ... what?! I told him I didn't understand. If yesterday when he was clamped, he had high ICP and it leaked out of his head, wouldn't clamping him and sitting him up make it more likely to leak out his back instead? Didn't he prove he still had too much CSF to clamp? He said we've let this heal for nearly a week now, and it's time to start testing to see if it works.
After he left, my head was spinning. That was not what I had expected, but more than that, I was very nervous about his back leaking because we were being more aggressive. I felt sick to my stomach, and I just had a very bad feeling about this. I know Nate and his body. If you push him, it backfires. The nurse came in, and I asked her about it--Raising his head will make his intracranial pressure better, but won't the pressure in his back be even greater then? They didn't really know how to answer my question satisfactorily. I was so exhausted from the night that, despite trying so hard not to, I started crying to the nurse. I've said it before, I HATE crying in front of medical people. But I just apologized for the tears and kept asking questions. Well, when a nurse sees a mom crying, they jump into defender mode. The nurse I spoke to consulted with another nurse who came in to talk to me, and then the nurse practitioner. All of them let me know that they were also kind of surprised at the plan, and they understood my concerns, and they would not only pass them on to Dr. Warf but also go to bat for me. :) Which is totally unneccessary, but very sweet. (This is why I hate crying, because they think I'm not together enough to stand up for Nate myself.)
Nate had a very difficult morning. I don't know if it was from being so tired after staying up half the night, or residues from the medication, but he screamed the majority of the morning. I had flashbacks of our last encounter with oral steroids. :) He was upset about everything and nothing. Take this band-aid off! Put that band-aid back on! That kind of thing. Just as I got him calmed down and ready to take a nap ... we got another roommate. Ahhhhhh!!! Really? Today is a hard, hard day, and what would help us most of all is a little quiet. But, the roommate is a tiny baby who had surgery today, and the family is very quiet. And Nate quickly calmed down and has done pretty well the rest of the day. They've only witnessed a couple of good fits.
Dr. Warf was in the OR most of the day but came by this afternoon, presumably to clamp Nate's drain and raise his bed higher. I told him I had more questions. That I realize I am not a neurosurgeon, but I don't understand how this won't tempt Nate's back to open, if just yesterday he leaked from his drain. He understood my concerns, but he's also concerned about the EVD being in place for a week and it leaking last night and the risk of infection. I totally get that, and I totally want to avoid an infection, but I also want to avoid Clive happening again. All day all the nurses had told me they would watch his back closely, but if his back puffs out, it's pretty much game over, start at square one. I suggested we raise the EVD to 30 overnight, then clamp it in the morning, and then remove it tomorrow night. (My mom was just shaking her head and later said I'm the only person she knows who would make suggestions to a neurosurgeon,) He agreed to do that if it would make me feel more comfortable, and he still feels comfortable with that plan. I felt MUCH, much better after that. I like this plan. I think it's going to work.
Nate is doing great today on the new setting. His head is elevated to about halfway sitting up, his pressures have been good all day, and he hasn't been putting out a lot of CSF--except when he's throwing a good fit! Just as I was sitting here typing this, Nate is asleep next to me, and all of a sudden his ICP jumped from like 10 to about 22, and a bunch of fluid drained! What the heck! Not that anything is wrong, but what would make that happen, with him laying in the exact same place, asleep? Dr. Warf said your ICP can change when you're dreaming--isn't that crazy?
Unfortunately, we've also had a little urological issue (which teenager Nate would probably appreciate that I don't describe) that needs to be checked out in the morning. And tomorrow is the big day! Clamping the drain, and then removing it. We may be discharged as soon as Friday, or maybe Saturday. From there we will stay in their family house for the next week before seeing Dr. Warf one last time on Nov. 21. Today we booked a flight for Tuesday, Nov. 22, and we'll be back home for Thanksgiving. We will have a lot to be thankful for this Thanksgiving!
Tuesday, November 8, 2011
Boston Day 9 continued (spoke too soon)
So we've been watching Nate's ICP (intracranial pressure) all evening, and it's not alarming, but it's not great either. Then all of a sudden it starts spiking into the 30s. I figure there's something wrong with the monitor, but I go over and look, and I see that Nate's hair is wet next to his drain. Crud. Called the nurse to tell them his EVD is leaking spinal fluid. She comes rushing in, and if I didn't already know this was a very big deal, her reaction would have clued me in. You see, if spinal fluid is leaking out, that means that infection can get in, and a brain infection is a very, very big deal.
So the resident neuro came in to take a look, and he called Dr. Warf. They decided to put a couple of stitches around the EVD to seal it up better, and they opened the EVD, which had just been clamped this morning. The plan was to take Nate to the procedure room on the floor here. At first I was thinking that is just a bit more sterile place to do procedures, but now I'm thinking that's where they take the kids who are going to scream really good and loud so it scares the other children less.
They wanted to give him adivan (to chill him out) and morphine (to knock him out), but lucky us, his IV had gone bad. Nate is very hard to get an IV in, so our nurse called the best nurse on the floor to check him out, and after checking him out, she called IV therapy. After a few minutes, they got the IV in, with much screaming from poor Nate. They gave him all the meds, and the nurse was shocked he didn't go to sleep. Took him to the procedure room (remember, he has to be laying flat this whole time), and he started flipping out before the doctor even touched him because the nurse was holding his head tightly, and another nurse and I were holding his hands down. Then when the stitches started ... well, I'd rather not ever think about that again.
We got Nate back to his bed, and he was itching big time because of the morphine. So here he is, wiggling around his bed trying to scratch his back. The same back that has a healing incision down the middle of it, and in his itching he is rubbing all of the dermabond off. I tried my best to stop him any way I could, mostly by rubbing his back for him. The doctor gave him some benedryl through the IV for the itching, and would you believe after adivan, morphine, and benedryl, this kid is STILL not asleep. One thing I learned is that, yes, Nate really does react to morphine. After two of his last 3 surgeries, he's had morphine for pain, and he's been itchy, but I have attributed it to the anesthesia. But this time it was very clear what caused all the itching. And this time, he was seeing hallucinations! He has been grabbing at things in the air and pointing to invisible floating things that disappear. He also sees animals and a flying racecar!
So, what does this mean. I guess it means he wasn't ready for the EVD to be clamped today. I think the idea is that as he had CSF draining so much for several days, his body started making more to compensate. Then they raised the drain a couple times, and the body tried to adjust by making a little less fluid each time. But maybe it needs more time. I'm going to ask in the morning if it would help to raise the drain a little more before we clamp it again.
I guess the bright side is it didn't leak out of the back. But tonight was no fun.
So the resident neuro came in to take a look, and he called Dr. Warf. They decided to put a couple of stitches around the EVD to seal it up better, and they opened the EVD, which had just been clamped this morning. The plan was to take Nate to the procedure room on the floor here. At first I was thinking that is just a bit more sterile place to do procedures, but now I'm thinking that's where they take the kids who are going to scream really good and loud so it scares the other children less.
They wanted to give him adivan (to chill him out) and morphine (to knock him out), but lucky us, his IV had gone bad. Nate is very hard to get an IV in, so our nurse called the best nurse on the floor to check him out, and after checking him out, she called IV therapy. After a few minutes, they got the IV in, with much screaming from poor Nate. They gave him all the meds, and the nurse was shocked he didn't go to sleep. Took him to the procedure room (remember, he has to be laying flat this whole time), and he started flipping out before the doctor even touched him because the nurse was holding his head tightly, and another nurse and I were holding his hands down. Then when the stitches started ... well, I'd rather not ever think about that again.
We got Nate back to his bed, and he was itching big time because of the morphine. So here he is, wiggling around his bed trying to scratch his back. The same back that has a healing incision down the middle of it, and in his itching he is rubbing all of the dermabond off. I tried my best to stop him any way I could, mostly by rubbing his back for him. The doctor gave him some benedryl through the IV for the itching, and would you believe after adivan, morphine, and benedryl, this kid is STILL not asleep. One thing I learned is that, yes, Nate really does react to morphine. After two of his last 3 surgeries, he's had morphine for pain, and he's been itchy, but I have attributed it to the anesthesia. But this time it was very clear what caused all the itching. And this time, he was seeing hallucinations! He has been grabbing at things in the air and pointing to invisible floating things that disappear. He also sees animals and a flying racecar!
So, what does this mean. I guess it means he wasn't ready for the EVD to be clamped today. I think the idea is that as he had CSF draining so much for several days, his body started making more to compensate. Then they raised the drain a couple times, and the body tried to adjust by making a little less fluid each time. But maybe it needs more time. I'm going to ask in the morning if it would help to raise the drain a little more before we clamp it again.
I guess the bright side is it didn't leak out of the back. But tonight was no fun.
Boston Days 7, 8 and 9
The last 3 days have run together. It's like that movie Groundhog Day around here. We're just sitting here waiting for Nate's back to heal.
On Sunday, Dr. Warf came by to see Nate and reiterated that we would turn up the EVD on Monday. But he said he was going to look at the fluid output after he left the room. A little later, one of the other neuros came in and said we were going to turn the EVD up today instead of tomorrow, and DON'T WORRY, Dr. Warf told me to do this! :) They know me well already. It had been on 5, but he saw that Nate was pumping out a lot of fluid, and he didn't want him to get too low. So they turned it up to 10. His intracranial pressure (ICP) stayed about the same, which is great. Then yesterday they turned it up to 20, and his ICP increased a bit, but nothing too alarming.
This morning, Dr. Warf clamped it. So the drain (EVD) is not draining any fluid, and this is a test of how well the ETV is working. Well, I was getting nervous this morning as I watched the ICP monitor. His ICP during surgery was 18, which Dr. Warf said was not enough to make him sick but certainly higher than "normal." He has also mentioned that 30 would be considered moderately high, like high enough to do a shunt or ETV. After being clamped today, it has spiked as high as 30 but would dip back down pretty quickly. At first it was staying in the low 20s all the time, but now it's mostly in the upper teens and frequently spiking into the 20s.
The nurses are all watching for classic signs of hydrocephalus. They actually gave me a booklet today on what signs to watch for. Ha! She has no idea about our history. We are not expecting that he would have the typical hydrocephalus issues--he's never had them before, and there's no reason that would have changed, and now he even has an ETV to help. What we're watching for is his back to puff out. Just the idea of this makes my stomach turn. At one point today my mom was looking at Nate's back and said he must be sweaty because he was so wet! I panicked, thinking it was CSF. Turns out he had peed on himself! Whew!
So we continue to watch him, and his ICP, and his back. We are hoping the ICP continues to decrease as the body once again adjusts to absorbing the fluid that we have been pumping out of his body for several days. He was pumping so much out that he was actually showing signs of dehydration. Now that he's clamped, he's peeing a LOT. :) He's not in any pain. Yesterday they switched him to chewable tylenol, and he hasn't even had that since last night. Pretty amazing for someone who had brain and back surgery 5 days ago!
Oh, our private room luck ran out. Last night we got a little roommate, a 5 year old boy having seizures. Last night wasn't so bad, but today their ENTIRE extended family was on that side of the room all day, along with the people having to do the EEG, a child life person, volunteers, and even the volunteer clowns! Get out of here! I actually think they are being discharged today, and I hate that the boy was diagnosed with epilepsy. Nice family, but we need our space. :)
Tomorrow they may or may not remove the EVD completely. I think everyone is a little nervous about the higher ICP. Ideally they would be lower. We shall see what happens.
On Sunday, Dr. Warf came by to see Nate and reiterated that we would turn up the EVD on Monday. But he said he was going to look at the fluid output after he left the room. A little later, one of the other neuros came in and said we were going to turn the EVD up today instead of tomorrow, and DON'T WORRY, Dr. Warf told me to do this! :) They know me well already. It had been on 5, but he saw that Nate was pumping out a lot of fluid, and he didn't want him to get too low. So they turned it up to 10. His intracranial pressure (ICP) stayed about the same, which is great. Then yesterday they turned it up to 20, and his ICP increased a bit, but nothing too alarming.
This morning, Dr. Warf clamped it. So the drain (EVD) is not draining any fluid, and this is a test of how well the ETV is working. Well, I was getting nervous this morning as I watched the ICP monitor. His ICP during surgery was 18, which Dr. Warf said was not enough to make him sick but certainly higher than "normal." He has also mentioned that 30 would be considered moderately high, like high enough to do a shunt or ETV. After being clamped today, it has spiked as high as 30 but would dip back down pretty quickly. At first it was staying in the low 20s all the time, but now it's mostly in the upper teens and frequently spiking into the 20s.
The nurses are all watching for classic signs of hydrocephalus. They actually gave me a booklet today on what signs to watch for. Ha! She has no idea about our history. We are not expecting that he would have the typical hydrocephalus issues--he's never had them before, and there's no reason that would have changed, and now he even has an ETV to help. What we're watching for is his back to puff out. Just the idea of this makes my stomach turn. At one point today my mom was looking at Nate's back and said he must be sweaty because he was so wet! I panicked, thinking it was CSF. Turns out he had peed on himself! Whew!
So we continue to watch him, and his ICP, and his back. We are hoping the ICP continues to decrease as the body once again adjusts to absorbing the fluid that we have been pumping out of his body for several days. He was pumping so much out that he was actually showing signs of dehydration. Now that he's clamped, he's peeing a LOT. :) He's not in any pain. Yesterday they switched him to chewable tylenol, and he hasn't even had that since last night. Pretty amazing for someone who had brain and back surgery 5 days ago!
Oh, our private room luck ran out. Last night we got a little roommate, a 5 year old boy having seizures. Last night wasn't so bad, but today their ENTIRE extended family was on that side of the room all day, along with the people having to do the EEG, a child life person, volunteers, and even the volunteer clowns! Get out of here! I actually think they are being discharged today, and I hate that the boy was diagnosed with epilepsy. Nice family, but we need our space. :)
Tomorrow they may or may not remove the EVD completely. I think everyone is a little nervous about the higher ICP. Ideally they would be lower. We shall see what happens.
Saturday, November 5, 2011
Boston Days 5 and 6
Well, we STILL have a room to ourselves! They probably don't want to hear my mouth about it anymore unless they have to. But since Dr. Warf asked to have us in a private room, I think they are trying to keep it that way. Plus the floor isn't quite as busy as when we came in on Tuesday.
Nate is feeling well. He really hasn't had much pain at all. He was first on morphine, but since he was itching they changed him to Dilaudid. I really don't think he was itching because of the morphine--I think it was just the anesthesia coming out of his system, because that happened after both of the previous surgeries. But Dilaudid did the trick. He slept A LOT yesterday. He woke up around 8 and stayed awake until about 4, then fell asleep till around 11:30 last night. I thought GREAT, because I was getting ready to lay down myself. But after a couple hours he was back out and slept till after 8 this morning, and he soon went back to sleep and was too tired to even eat breakfast. After Dr. Warf came around, we decided the narcotic was probably overkill at this point, and he changed him to touridol (sp?) which is basically like ibuprofen in an IV. He's had this before, and it works pretty well. On the one hand, it's nice when Nate sleeps because the rest will help him heal, and better him sleep than get bored and irritated with laying down. On the other hand, I don't like him totally drugged, and he's too sleepy to even eat. So we'll see how this goes.
Yesterday Dr. Warf came by and looked at the drain (EVD) and was happy to see it wasn't putting out much CSF (cerebrospinal fluid). I said I thought it looked like a lot, and he told me that the body makes about 500ccs of CSF every day, and Nate's EVD had only put out about 100ccs in the day after surgery. (Isn't it amazing all of the things our bodies do every day to keep us alive and well, and we don't think or even know about them?) That means he doesn't need the EVD very much.
So to explain this EVD a little. First, here's a picture, and then I'll explain it.
Look first at his head. That piece of tape at the top of his head is nothing--it's just left over from the bandage that fell off, and I don't want to pull his hair out right now getting it off. But near the pillow you can see a little shaved spot, and a little lower there is a small catheter coming out of his head. It has a few stitches in it so it won't just slip out, but they will be able to remove it at the bedside when the time comes. The tube goes over to that contraption on the left side of the picture. They have it set at 5 right now (see the little red marker between 4 and 6?) which is physically low enough to drain a good amount of fluid. They actually have a small level to make sure it's at the right angle. Dr. Warf will leave it at this level through the weekend to keep the pressure in his brain and spinal cord low so the back will have a chance to heal. Then on Monday, they will raise it to 10 or 15. As it gets physically higher, it will take more pressure to pump fluid out of the brain to drain out, so basically it drains less. They will see how he does with that, and if all is good, they will clamp the drain, and then remove it. He will remain flat until Thursday.
Every morning around 6, a big group of neurosurgeons rounds, but Dr. Warf is not with them. It's the strangest rounds I've ever seen. One morning they all walked in, one looked at his back, and then they all left within 30 seconds, literally. If I have a question, they all look at me like I have 3 heads. (Therefore I make a point of asking questions. Just a little game. Hey, I'm bored.) Then later in the morning, Dr. Warf rounds, and he's great as usual. Well, yesterday, the same thing happened, and when Dr. Warf was in he reiterated the plan to leave it at 5 through the weekend and start raising it on Monday. Well, a little while later, the nurse pops in and asks if anyone has come in to raise the EVD yet. Um, no? Then she comes back a few minutes later and starts raising it up to like 10. I was like, excuse me, what are you doing? She said there were orders to raise the EVD. I asked who placed the orders. Was it Dr. Warf himself? No, she said, it was one of his fellows, and they wanted to see what would happen ... if his drain would leak, if his back would leak. I said absolutely not. She needed to call Dr. Warf, and if he himself said to raise it, then we'll raise it. Otherwise, absolutely not. See if his back starts leaking? Are you kidding me? That would mean game over, start again. A little later she came in and said we were leaving it where it was. Riiiiight. This is really not a criticism against this hospital at all, just hospitals in general. It just reiterates that when anyone is in the hospital, you really have to watch and listen closely, because sometimes things do not get communicated well, and you have to be your own/your child's advocate.
This morning some nurses came in to measure his intracranial pressure (ICP). I said, oh boy, what does that entail. Fortunately they didn't even have to touch him, just put an extra thing on his EVD pole. Remember that anything less than 10 is normal, and the EVD is trying to get the pressure intentionally low. So his ICP is staying around 4 or 5 right now, and that's just right. Several times today it has gone as high as about 8, like when drinking through a straw, but more often it has been very low, like -6? That usually happens after he gets really upset, which pushes a bunch of fluid out, and then it's super low and sometimes that gives him a headache. I'm very used to looking at these monitors for his oxygen saturation, heart rate, etc, but this is the first time I've seen the ICP monitored, and it's pretty interesting and a little confusing.
Most of today was very laid back. Nate was either watching train movies or sleeping, and I was just sitting here trying to keep occupied on the computer, with work, or watching TV. It helps so much having my mom here to run out to get lunch or read stories to Nate while I take a walk.
This afternoon we got to Skype with Memaw and Georgia. This was right before Nate's nap, so he was especially grouchy. Georgia was just as tired and grumpy. But we talked for a little while. Georgia sat there looking at me and Nate and said very seriously to Memaw, "Tell mama to come home." Later, we got to Skype with Blake, and not even a minute after Nate saw him on the screen, he just burst out crying so pitifully and said, "I want to go home!" He was so genuinely homesick, it broke my heart, and I couldn't even say anything for a couple of minutes. This is hard, especially thinking about being here 2 more weeks. I'm especially sad for Georgia to not have her mama for this long. But, we do what we have to do, and we'll keep trying to make the best of it.
One last thing. Tonigh Nate has been playing with this blue tube thing for hours. You know one of those plastic tube toys that can scrunch up small or stretch out long? It's the simple things. We were playing together, one of us talking in each end at the same time, then talking in one end with the other end up to an ear, etc. We had this awesome, fun nurse tonight who was playing with the tube with Nate, and she made noises in one end for him to hear on the other end. He goes, "Hmm. When you breathe in it, this side smells wierd." She said, "Oh, sorry! Guess that was my breath!" Ah, five year olds.
Nate is feeling well. He really hasn't had much pain at all. He was first on morphine, but since he was itching they changed him to Dilaudid. I really don't think he was itching because of the morphine--I think it was just the anesthesia coming out of his system, because that happened after both of the previous surgeries. But Dilaudid did the trick. He slept A LOT yesterday. He woke up around 8 and stayed awake until about 4, then fell asleep till around 11:30 last night. I thought GREAT, because I was getting ready to lay down myself. But after a couple hours he was back out and slept till after 8 this morning, and he soon went back to sleep and was too tired to even eat breakfast. After Dr. Warf came around, we decided the narcotic was probably overkill at this point, and he changed him to touridol (sp?) which is basically like ibuprofen in an IV. He's had this before, and it works pretty well. On the one hand, it's nice when Nate sleeps because the rest will help him heal, and better him sleep than get bored and irritated with laying down. On the other hand, I don't like him totally drugged, and he's too sleepy to even eat. So we'll see how this goes.
Yesterday Dr. Warf came by and looked at the drain (EVD) and was happy to see it wasn't putting out much CSF (cerebrospinal fluid). I said I thought it looked like a lot, and he told me that the body makes about 500ccs of CSF every day, and Nate's EVD had only put out about 100ccs in the day after surgery. (Isn't it amazing all of the things our bodies do every day to keep us alive and well, and we don't think or even know about them?) That means he doesn't need the EVD very much.
So to explain this EVD a little. First, here's a picture, and then I'll explain it.
Every morning around 6, a big group of neurosurgeons rounds, but Dr. Warf is not with them. It's the strangest rounds I've ever seen. One morning they all walked in, one looked at his back, and then they all left within 30 seconds, literally. If I have a question, they all look at me like I have 3 heads. (Therefore I make a point of asking questions. Just a little game. Hey, I'm bored.) Then later in the morning, Dr. Warf rounds, and he's great as usual. Well, yesterday, the same thing happened, and when Dr. Warf was in he reiterated the plan to leave it at 5 through the weekend and start raising it on Monday. Well, a little while later, the nurse pops in and asks if anyone has come in to raise the EVD yet. Um, no? Then she comes back a few minutes later and starts raising it up to like 10. I was like, excuse me, what are you doing? She said there were orders to raise the EVD. I asked who placed the orders. Was it Dr. Warf himself? No, she said, it was one of his fellows, and they wanted to see what would happen ... if his drain would leak, if his back would leak. I said absolutely not. She needed to call Dr. Warf, and if he himself said to raise it, then we'll raise it. Otherwise, absolutely not. See if his back starts leaking? Are you kidding me? That would mean game over, start again. A little later she came in and said we were leaving it where it was. Riiiiight. This is really not a criticism against this hospital at all, just hospitals in general. It just reiterates that when anyone is in the hospital, you really have to watch and listen closely, because sometimes things do not get communicated well, and you have to be your own/your child's advocate.
This morning some nurses came in to measure his intracranial pressure (ICP). I said, oh boy, what does that entail. Fortunately they didn't even have to touch him, just put an extra thing on his EVD pole. Remember that anything less than 10 is normal, and the EVD is trying to get the pressure intentionally low. So his ICP is staying around 4 or 5 right now, and that's just right. Several times today it has gone as high as about 8, like when drinking through a straw, but more often it has been very low, like -6? That usually happens after he gets really upset, which pushes a bunch of fluid out, and then it's super low and sometimes that gives him a headache. I'm very used to looking at these monitors for his oxygen saturation, heart rate, etc, but this is the first time I've seen the ICP monitored, and it's pretty interesting and a little confusing.
Most of today was very laid back. Nate was either watching train movies or sleeping, and I was just sitting here trying to keep occupied on the computer, with work, or watching TV. It helps so much having my mom here to run out to get lunch or read stories to Nate while I take a walk.
This afternoon we got to Skype with Memaw and Georgia. This was right before Nate's nap, so he was especially grouchy. Georgia was just as tired and grumpy. But we talked for a little while. Georgia sat there looking at me and Nate and said very seriously to Memaw, "Tell mama to come home." Later, we got to Skype with Blake, and not even a minute after Nate saw him on the screen, he just burst out crying so pitifully and said, "I want to go home!" He was so genuinely homesick, it broke my heart, and I couldn't even say anything for a couple of minutes. This is hard, especially thinking about being here 2 more weeks. I'm especially sad for Georgia to not have her mama for this long. But, we do what we have to do, and we'll keep trying to make the best of it.
One last thing. Tonigh Nate has been playing with this blue tube thing for hours. You know one of those plastic tube toys that can scrunch up small or stretch out long? It's the simple things. We were playing together, one of us talking in each end at the same time, then talking in one end with the other end up to an ear, etc. We had this awesome, fun nurse tonight who was playing with the tube with Nate, and she made noises in one end for him to hear on the other end. He goes, "Hmm. When you breathe in it, this side smells wierd." She said, "Oh, sorry! Guess that was my breath!" Ah, five year olds.
Friday, November 4, 2011
Picture catch-up
I just emptied my phone and memory card and uploaded anything cute. :)
These are only somewhat in order, because blogger is somewhat difficult to upload photos and videos to. This video is of Nate showing off his wheelchair skills after only a day of practice!
Georgia showing off her new pink cowgirl boots.
One night Blake made a bed in the living room floor for us all to pile on to watch TV.
The kids kept saying things like, "The whole family, in the floor!"
Here's a little video of the giggle-fest in action.
For one of our recent playgroups, we visited another Spina Bifida family's little farm. They have a horse, Sugar.
But only from a distance. If he started to come close, she would climb up me like a monkey.
My best friend had twin boys. :) I got to be there the day they were born. I'm a proud "auntie"!
When we found out we would be traveling with Nate on Halloween, we decided to go trick or treating at the zoo the night before instead. Cousin Cade came too, and I think we all had a great time.
Georgia was Cinderella. You should have seen us trying to wrestle her into this costume. Apparently, it's itchy.
Nate decided to wear his doctor costume after all. He had been against the idea for weeks and just wanted to be a train.
This makes me smile every time. :) Right before this, Buzz Lightyear had said to a little girl dressed as Rapunzel: "Rapunzel! Let down your haaaaiiiirrrr!" and Nate just giggled and giggled. A couple days later he was still giggling about that.
Trick or treating from the wagon.
Not wanting to stay in the wagon ...
Cade was a Clone Trooper, I think?
I apologize if some of these turn out sideways.
This was totally staged but sweet.
Okay, now pics from our trip. This was our first time flying with Nate, so we had to figure a few things out. Instead of dragging his big car seat with us, my mom got him a big kid booster seat for the trip.
On the plane, he asked for apple juice, which I thought was funny because he never drinks apple juice and in fact will never drink anything but milk, water, and the occasional capri sun, but I guess he thought this special occasion deserved a special beverage.
Here are the little buddies who came to visit us a couple nights ago.
These are only somewhat in order, because blogger is somewhat difficult to upload photos and videos to. This video is of Nate showing off his wheelchair skills after only a day of practice!
And then back up to about August, maybe? This was at a playgroup. Nate standing tall! But you see his left foot turning out.
Georgia showing off her new pink cowgirl boots.
One night Blake made a bed in the living room floor for us all to pile on to watch TV.
The kids kept saying things like, "The whole family, in the floor!"
Here's a little video of the giggle-fest in action.
The quality of this photo is awful, but this is just to show that after weeks in the house, we got Nate and Clive all dressed up in last year's Captain Hook costume to go to a Pirates and Princesses birthday party.
For one of our recent playgroups, we visited another Spina Bifida family's little farm. They have a horse, Sugar.
Georgia looooooved to look at Sugar.
But only from a distance. If he started to come close, she would climb up me like a monkey.
My best friend had twin boys. :) I got to be there the day they were born. I'm a proud "auntie"!
When we found out we would be traveling with Nate on Halloween, we decided to go trick or treating at the zoo the night before instead. Cousin Cade came too, and I think we all had a great time.
Georgia was Cinderella. You should have seen us trying to wrestle her into this costume. Apparently, it's itchy.
Nate decided to wear his doctor costume after all. He had been against the idea for weeks and just wanted to be a train.
This makes me smile every time. :) Right before this, Buzz Lightyear had said to a little girl dressed as Rapunzel: "Rapunzel! Let down your haaaaiiiirrrr!" and Nate just giggled and giggled. A couple days later he was still giggling about that.
Trick or treating from the wagon.
Not wanting to stay in the wagon ...
Cade was a Clone Trooper, I think?
I apologize if some of these turn out sideways.
This was totally staged but sweet.
Okay, now pics from our trip. This was our first time flying with Nate, so we had to figure a few things out. Instead of dragging his big car seat with us, my mom got him a big kid booster seat for the trip.
On the plane, he asked for apple juice, which I thought was funny because he never drinks apple juice and in fact will never drink anything but milk, water, and the occasional capri sun, but I guess he thought this special occasion deserved a special beverage.
He and Seal the Sea Lion enjoyed the window seat.
I love this picture. This was outside the hotel on Tuesday while we were waiting for our shuttle to take us to the Children's Hospital.
And my buddies, Angela and KT.
And lastly, some somewhat pitiful pictures of Nate since the surgery. Here you can see that his face was puffy from laying face-down in surgery. And that tube on top of his head is the external drain that will be there through next week. I did get them to rig the tape up so it's not taped to his forehead.
And before long I will have pictures of him sitting up, walking, and running again. He just needs a little time.
Thursday, November 3, 2011
Boston Days 3 and 4 (surgery)
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.
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.
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.
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