Once we returned home from the hospital I began my extensive internet searching. I researched hypotonia every place I could think of. I joined yahoo and Facebook groups for parents of children with hypotonia. I learned that hypotonia is not a diagnosis at all, but a symptom. I was encouraged by some of what I found. After reading so many different stories it was hard to predict where Kai would fit in but I had come to the assumption that Kai would crawl and walk one day. I figured he might crawl after his 2nd birthday and walk around 5 years old. These were my goals for Kai. Kai was going to crawl and walk. I was sure of it. He was just going to be farther behind the curve than most kids.
We began weekly therapy visits and I worked with Kai every day I could. Kai’s occupational therapist was fantastic! She was so creative and a great teacher. Many of the posts on this blog were her ideas. Kai would get mad at her sometimes for putting him in a position he didn’t want to be in. She would hand him to me so that I could hold him and give him a break. She was very aware of how he felt and if he absolutely didn’t like something, he didn’t have to do it.
I had a full time schedule at the local community college and worked full time in the midst of this. Fortunately for us, Kai’s daycare and grandparents were doing a great job helping Kai as well. I taught them what we were working on in his therapy, and they took it from there. The same applied to feeding. I showed everyone how to make his formula, how to feed him and what amounts to make sure he drank. They were all on top of it. It was great to have such good help while I couldn’t be there.
At this point, Kai was drinking all of the thickened bottles he was supposed to and eating purees. I saw a drastic change when we switched him to thickened formula. For the first time in months, Kai sounded clear. He made no sound when he breathed. It was great to know that he was actually getting some nutrition and he had noticeably more energy. He was kicking his legs and would attempt to bring his head up a lot more often. He also started vocalizing more, even saying Ma sometimes. We were able to put him in his high chair with the seat reclined a bit for play time and we were giving him lots of belly time. He could raise his head for moments off of the floor and could bring some objects to his mouth if his arms were supported.
A few weeks after we got home from the hospital, Kai started to make more noise while breathing again. I started to become concerned. I also noticed that his eyes shook. If I were holding Kai and rocked him side to side his eyes would dart back and forth.
We were home for about 5 weeks before our next set of clinic appointments. I had to drive 2 and a half hours to get to the Children’s Hospital so it was always a day trip for his appointments. This time we actually had two days’ worth of appointments, so we stayed in a hotel room for a night. On the first day Kai met with the neurology department. I showed the doctor his shaky eye movements and they decided to schedule Kai an ophthalmology appointment with our next round of appointments. During the neurology clinic visit I was very disappointed with the attitude of the doctor. The entire visit she seemed negative to me. She discussed the likelyhood of not finding a diagnosis for Kai throughout the entire visit. I figure it’s probably a good idea to be realistic and let parents know what they could be looking at - but say it once and then move on... She hadn’t even ordered a single test yet… I left that appointment feeling like we were getting nowhere with that department. She did order blood tests for various conditions and banked Kai’s DNA. Basically, they took extra blood from his blood draw to put away and save. They would use it if they thought of additional tests they would like to run without having to poke Kai again and again.
The next day we had a follow up appointment with the neurodevelopmental clinic with his main neurologist, Dr. C. I was so happy to see him and told him I was worried about Kai. I let him know about the change in his breath sounds and the shaky eye movements I had noticed. The doctor was not very impressed with Kai’s weight gain over the previous month. Kai was now 10 months old and still below the 5th percentile. So Kai was readmitted to the hospital for failure to thrive and more testing. All of the previous testing came back normal so we were about to move onto round two.
The next few days were spent in the hospital working on feeding. The feeding therapist met with us every day and made some changes to how I fed Kai purees. I started to help him pull the food off of the spoon by pulling up on his chin to close his mouth and then pulling the spoon out. The therapist felt he was moving food around in his mouth fine and tolerating the thickened formula well. I told her I thought he was aspirating. He sounded so clear in the beginning, but then things changed. The feeding therapist didn’t feel it was an issue. After four days we were sent home with the same feeding plan as before. Kai had gained enough weight during this hospital stay to be discharged and off we went.
Our time at home was short lived once again. Kai’s breathing was getting worse and worse each day and after about a week, I took him to the local hospital. I was uncomfortable taking him to that hospital due to our past experiences there, but his primary doctor promised me he would take care of him while he was there. After admission, there was a mix-up and no one from the hospital informed Kai’s doctor’s office about the admission. Kai was taken care of by the pediatricians from the hospital for the first couple of days. They diagnosed Kai with pneumonia. They would not let me feed Kai and started him on antibiotics. I was getting very upset. They wanted to put a feeding tube in through Kai’s nose (NG tube) but couldn’t find the right tube. I had been working so hard during the previous weeks trying to help Kai gain precious weight. It was not easy, and he lost over a pound in just one day at that hospital. Late in the evening on the second day they finally put an NG tube in and started feeding Kai.
The next day Kai's primary care doctor, Dr. B, finally came in. I was so upset that he hadn’t been around like he promised. That’s when he informed me of the mix-up and he apologized. By this time I just wanted to take Kai and go back to the Children’s Hospital in Seattle, but all the doctors wanted to take care of him where he was. Kai continued to get worse. This went on for almost a week and the entire time I was calling Dr. C at Children's daily with updates on everything they were doing. Finally he called over and spoke to the doctors taking care of Kai. After their phone conversation the doctor came into Kai’s room to let me know they were transferring him to Children’s. I was so relieved! Kai and I got into an ambulance and headed out.
Once at Children’s I felt so much better. Dr. C met us in the ER room when we arrived. He said he thought he scared the other doctors at our local hospital. He said he gave them ideas on tests to run or antibiotics to use and instead they just transferred him. I think the doctors felt like they were getting into something they didn’t think they could or wanted to handle. Whatever the reason, I was just happy they sent us away rather than taking his advice and trying things out there.
While at Children’s, Kai tested positive for RSV. He was treated with IV antibiotics, CPT(chest percussion therapy), suctioning and required some oxygen. During our stay, they taught me how to place his NG tube and use the feeding pumps. They also taught me how to handle bolus feeds. Kai was getting continuous feeds while asleep at night and 4 bolus feeds that were at an increased rate during the day. This way he was able to take breaks during the daytime. He was still approved for purees, but was to have no liquids except through the NG tube. They felt his pneumonia was caused by aspiration. This trip, like the others, was only 4 days long. It was amazing how much improvement Kai had in just those short days.
Once we got home this time around, things began to pick up. We still had therapy sessions, but they were increased to twice a week. We also had to meet with a dietician to make sure his feeding went well. In addition, we started meeting with an educator weekly the day after discharge. I was taking any and every bit of advice I could get my hands on. I kept asking the therapy center for help playing with Kai. That’s where the educator came in. We only met with the educator twice. I felt that Kai was too young at this point and cancelled the service until he was older. Kai was also on a waiting list to begin speech therapy which I was really excited about. By this time I had already quit working. I continued going to school, but could not manage Kai’s care well enough doing both.
After a week of feeding Kai the bolus feeds I became concerned. His breath sounds were loud again and I actually saw formula in the back of his mouth on a couple of occasions. He would never spit up but something was wrong. I could feel it. I called his dietician and told her about my concerns. She switched him to 24 hour feeds. This way his feeding rate would be decreased and we would have a better chance of his belly handling the smaller amount.
Kai was doing great in other aspects. He was saying “Ma” more and more and chatting it up. His occupational therapy was a bit of a struggle. Every time he was admitted to the hospital, it would set him back. We were doing the best we could though and so was Kai. He was really good at pulling his NG out. For a baby who didn’t grab toys or anything very much he sure could grab that little tube and pull it right out of his nose. I was very skilled at replacing it.
Kai continued to have gurgling sounds with breathing. After almost three weeks at home his breathing became labored. Instead of taking him to the local hospital, this time I decided to drive him over to Children’s myself. Once we got there, he was admitted for upper airway congestion and respiratory distress. Unfortunately, it was looking as though Kai would be spending his first birthday in the hospital.
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