Our dear sweet Amos has not had to have his shunt revised in all of his 8 years of life, which, according to every doctor and nurse we saw, is a miracle. While we are so thankful that he hasn't had to endure many surgeries, we are relieved to have to this first shunt revision behind us, as now we know what to expect.
This shunt surgery was pretty much the opposite of the last surgery experience we had. Amos was only six weeks old, 4 or 5 lbs and had to stay in the hospital for another 10 days to recover and work on breathing and eating. This time, he is/was a strong 8 year old boy, 50+ lbs, and very able to withstand all of the things that needed to happen. This surgery was also just to fix the catheter part that went into his ventricles, so they didn't have to do a very long or intense surgery to fix the whole system. By comparison, it was very invasive! (Read Amos' birth and surgery story here).
Amos started having headaches on the Friday after Thanksgiving, November 28th. He woke up that morning with a slight headache, but didn't tell us about it until later. He woke up from a nap, later that day, with another headache but this one was much more painful. We gave him Ibuprofen and after about half an hour, the pain finally subsided. He started acting more like himself, but after dinner, we noticed that he was closing one eye to read things and look around. When we asked him about it, he said that his eyes were fuzzy or dizzy. That was concerning to us and we decided to try to get in to see our neurosurgeon the next week to see what it was about. He went to bed just fine but around 10 pm, we heard him crying and he had another headache. This one was more intense and he even threw up a few times. His vision was still very blurry and all of it was enough for us to call the on-call neurosurgeon. He was not able to tell us, without seeing Amos, if Amos was experiencing shunt failure or not, but encouraged us to take him to the children's ER at Vanderbilt and have some CT scans and X-Rays done to see if we could figure out what was happening. In a nutshell, we were there all night, and saw lots of residents from different departments and while none of them could figure out why his vision was blurred, we did figure out that there was nothing urgent happening and that we could probably drive home the next day and see our neurosurgeon in Indy soon. It was annoying and tough and we three were tired from barely sleeping all night but we were thankful to know that he was ok enough to get home. We finished our Thanksgiving weekend with our family and then drove north.
Over the next few days, Amos seemed to be ok, with his vision eventually returning to normal. On that Monday, I made a follow-up appointment for Tuesday morning and even though I felt a bit anxious and unsure about what was to come, was thankful he felt well enough to go to school.
But on Tuesday morning, Amos woke up early, around 5:30, with another headache and blurred vision. It wasn't as bad as the ones he had in TN, but we still knew that it wasn't good that it was happening again. We decided to let him stay home before his appointment and I ran around the house, cleaning up, putting away laundry, showering, with this general feeling that everything needed to be as settled as possible. Our neighbor and friend, Ms Emily came over to stay with Flannery and Levi and we headed to the children's hospital.
When we finally got to see Dr. Boaz, it only took him a few minutes of talking with us and comparing the CT scans from 2011 and from the previous Friday to see that Amos' ventricles were swollen, and that he had mostly grown out of his shunt. It was barely inside of his ventricles and he had also thought that it might be clogged. Too, he knew exactly why Amos' vision was blurred and told us that the swollen ventricles were pressing on the optical nerves that go along the outside of the head. This explained why his peripheral vision was blurred. It was amazing that in 10 minutes, he could figure this all out!!
So then he started talking about fixing it, and made it sound very trivial. "We'll just use the previous incision, pop out the old catheter and pop in a new one. We can do it tonight, you probably don't want to wait unless you have to, but it will help his headaches go away. I anticipate that everything should go well and he'll probably go home tomorrow." So I felt the need to clarify..."You mean, surgery?!!" And surgery it was. As soon as Amos heard that, he freaked out (rightfully so!) and I freaked out on the inside. It was very sudden but not surprising. It was surgery, but not as invasive as before. But it was still brain surgery!!!
We started texting and calling friends and family and I went home to pack us all and Flannery and Levi who were going to go stay with friends. I felt very emotional on the drive home and that anxious flurry of activity returned with trying to get everyone and everything settled.
When I got back to the hospital, Amos had already had another CT scan that was more in-depth and was settled into a room, happily playing video games. He was excited to be in such a fun room and every now and then, he would remember that he was having surgery soon and would fall apart. It was tough getting through it with him, but he did really well and was able to calm down. Some of our pastors from church came and prayed for us, which was really sweet. I was having flashbacks to the last surgery he had, to have this shunt placed. It was intense and it took awhile for Amos to stablize afterward. So we were very thankful to have them there with us for a few minutes.
Soon, the nurse came in to take some of Amos' blood. That was really tough, but Amos got through it. She assured us that that would be the only prick he would feel, that they would start his IV after he went to sleep. Then we helped Amos get his robe on and we got ready to go to the OR.
Soon Amos was being wheeled down the hallway, into the elevator and into the prep area for surgery.
Amos asked for a blend of "flavors" for his mask (flavored chap stick that they put on the underside of the mask so it made the anesthesia gas seem flavored) and after a few tears, was taken back to the OR. He quickly made friends with the nursers who were going to take him back and be with him during the surgery. It was tough not to go back with him, but they assured us that they would take care of him and even let him bring his beloved Bear Bear teddy bear with him. Even though it was our third time watching him be rolled away, it was no easier to let him go than the first time.
We grabbed dinner and then made our way up to an empty waiting room, to wait for them to call us with an update. After eating and watching HGTV to pass the time, Dr. Boaz came in and reported that all was fine, that Amos was doing great, that things were exactly as he had anticipated and that they had only had to replace the catheter. They gave him a nice long one, that hopefully would last as he grew and not clog too much. He also said that they flushed the tube going into his abdomen with antibiotics and all of that looked good too. We had to wait another 20 minutes but then we got the call to head up to recovery.
Amos was in a big room, with lots of little stations, still in his bed. He was groggy and still mostly asleep. He would stir and ask for water, but mostly was very sleepy. His throat was raspy from having to have a breathing tube but other than that, he seemed to be ok. He had gotten to take his Bear Bear in with him for comfort, and was happy to snuggle as soon as he figured out he was there. After everything looked ok, the nurse took him in his bed back up to his room and we settled in for the night.
Around 4 am, we were woken up to go to get another CT scan to check in on everything. This time, he got to ride in a wheel chair on the elevator and again, got to go through the "donut" looking machine. By the time we got back to the room, we were all awake, but since it was still so early, we tried to go back to sleep.
Around 5 am, I vaguely remember being woken up by the other neurosurgeon who came in to check on Amos. He had just done rounds and looked at the CT scan and said that everything looked good. We finally woke up for the day around 8/8:30 and even though we were groggy, felt pretty good for a night in the hospital.
Amos continued to improve. He ate a healthy breakfast and even got to have Frosted Flakes for the first time! Later that morning, the nurse took off the leads from his chest and took out his IV. His hand felt a bit strange for awhile and all he could do was look at it, trying to wake it up and look for the site holes. It was all very fascinating to him! Also, he was really in very little, if any, pain. It was amazing how quickly he got back to normal and how there was no pain. The only pain medicine he received after waking up was a few doses of morphine and then never asked for anything else or complained of any pain. We were in awe!
Soon, we were getting him dressed, shoes on and preparing to go home. They finally released us around 12:30 and we happily walked out and down to our car. It was so surreal to emerge from the hospital into the car garage, 26 hours from the time we had our appointment, having just had a very intense experience with our dear Amos.
On Thursday afternoon, his teacher came by to visit and reported that his whole class was so worried about him. They were constantly asking if she had heard from us, when and if Amos was coming back and wondering how he was doing. She even brought a book of letters that they all had made. It was incredible to see the sweet and tender hearts of the kids that he spends his days with.
On Saturday, Amos got all of his moppy hair chopped off, and Nathan even cut all of his hair off in solidarity. Even though I miss their long hair, it is so sweet to look at their two shaved heads!
Amos was back at church on Sunday, and many were happy to see him back to his old self, bubbly and energetic, enthusiastically showing off his really gnarly incision. Even though we had gone to get him some lightweight knit hats to wear, he was pretty comfortable showing off his scar. So we had to talk him back into wearing a hat in school so he wouldn't alarm everyone! (I still shudder every time I see it! It's not for the faint of heart!)
He went back to school on Monday and did really well, although he was pretty tired out when he came home. We all eased back into the busyness of life, which was tough and overwhelming at times.
It was also so interesting to go through something like this with so many more ways of communicating now. We were able to instantly update friends and family and it was incredible to have the thoughts and prayers of everyone, as things were happening. We feel so blessed and very thankful!
Thanks to you all for your prayers and support. We hope that we get to go another long stretch of time before this shunt needs to be revised again!
***UPDATE***
12/21--Amos continues to do remarkably well. He went and got his stitches out this past Wednesday and was not yet cleared for physical activity, recess or PE. Keeping him calm, with no running, jumping, rough play, etc, has been the toughest part of this whole thing. If you know Amos, you know that he is always in action! The doctors have asked him not to do those things so as to help the shunt heal and not be jostled too much. Hopefully by his follow-up appointment in early January, he will be cleared to be active again!
We are enjoying the Christmas season and are looking forward to celebrating with family and friends, this week!
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