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.