McKay update, hospital stay, and ER visit

I just love this picture. It is actually from when we went to Disneyland (yes I have been working on this post for that long). He would crawl over to the window and pull himself up and look at California adventure.
So it's been a few months since I have done a update. Honestly I have been dreading it a little bit because so much has happened with McKay in the last three months I knew it would take me forever. But I actually need to do it. I know there are people that get all the details when I post it. Sometimes I have a hard time knowing how much people really want to know. Plus I actually use it as a medical journal for McKay. I have to keep track of so much for him, so I use his updates as a way to keep track of things I need to note. So here goes... sorry if it crazy long!
Last I updated we had seen the Pulmonalogist and had lots of not great news. Soon after that post we went to Primary's to have an Echo done on his heart. Of course now that he is older and has the sleep apnea they have to do a sedated Echo, so we headed up to do a sedated echo. Later that week we were able to meet with our Cardiologist (she saw him in the NICU so it is REALLY nice that she knows his history). She was happy to report that his Pulmonary Hypertension had not returned. He still had a slight murmur they hear every once in a while, but she was not concerned about it. She did say that as long as he has the sleep apnea and is on oxygen/cpap he will need to see her yearly. He will also to have an ekg done every year and an echo done every other year. (Fun, right!) But at least it was good news!
We also were sent to the Cranial Facial Disorders clinic by our Pulmonologist. We saw a Speech Therapist, a Plastic Surgeon, a Orthodontist, and an Ear Nose and Throat. Speech Therapist had nothing new to add, same as the plastic surgeon. The Orthodontist noted he does have an under bite (more fun, right?), his cheeks are set back a little too. Sometimes that can make the nasal passages a little compressed and make poor oxygen flow. It was not severe enough to do anything about any of it right now, just a "wait and see" diagnosis. The ENT was very curious about the syndrome and his story. He said he wanted to do an x ray to see how his adenoids looked. He said his ears looked fine, and his tonsils were not too big. He also wanted to do an overnight oximeter test to see if the oxygen he was wearing at night was actually working. The x ray came back that his adenoids were in fact very large, so he wanted to remove them. The over night oxygen came back that the oxygen he was wearing at night was also in fact helping a tremendous amount. So we set up a date to have his adenoids removed.
The end of October right before Halloween he started to get a little bit of a runny nose. Which usually puts me on high alert, because it almost always turns into something. After having the runny nose for a couple of days he woke up one morning extra cranky. He had a fever of about 101 so I decided to put him down for a morning nap. He slept for a while then I heard him wake up with a really weird cry. I rushed in to see him extremely pale and not acting himself. I took his temp and it was 105.6. I immediately panicked. I decided to take him to our doctor first before Primary's. He was not acting himself, I could get him to calm down and was inconsolable. By the time we got to the doctor his fever was down to about 104. Our Dr was pretty concerned, so he sent us to the hospital to have a chest x ray done as well as blood work, and a virus panel done. The results came back that he did not have Pneumonia, but 2 nasty viruses. One that causes extremely high fevers. So the Doctor said to keep an extra close eye on him, keep track of his fevers, keep him hydrated, and he said he was slightly hopeful we would not have to be admitted to the hospital but was not sure. We spent the weekend pretty miserably, his fever jumped all around from 101 back up to 105 a couple of times. It was really scary. We were able to keep him somewhat hydrated as too. By Monday the fevers were a little more under control, but his breathing now sounded funny. We rushed back into the doctor to find out the viruses had turned bacterial and he now had Croup and Pneumonia. Luckily we caught it early enough he did not have to be hospitalized. He had 4 shots of antibiotics, and two steroid shots. It was  a brutal week.
We decided to have his adenoids out right after Thanksgiving. It wasn't great timing because Kyle was gone on business for a full week. But it really was the only time we could fit it in, and the doctor could fit it in before the end of the year. The actual surgery was pretty fast, however the Doctor called me midway through the surgery and asked if they could scope his airway, it seemed a little small. The surgery went well and the doctor came out to talk to us afterward. He said when they did the scope they noticed his airway was very small, the size of a newborn. So they had to use a much smaller tube then they should have to use. I asked what they wanted to do about it, or what the future meant for that. He said he wanted to scope it again in the Spring and see if it had grown at all, and he wanted to talk to our Pulmonolgist about it as well.
McKay woke up from the surgery extremely cranky. He just kept crying and whimpering. His oxygen was all over the place as well so they had to put some extra oxygen on him. They also had to give him two shots of steroids to keep his airway open, because it was so small and swollen it was not staying open very well. We stayed overnight so they could monitor him and his oxygen, and I am so glad that we did. I just felt a big sense of relief knowing we were there if something went wrong. We woke up the next morning and McKay was back to normal. He oxygen was good, and he looked good. He was still having some noisy breathing so they said to keep an eye on it.
We got home and the next day went fine. The day after though he spiked a fever of 103, so we rushed him into the doctor. He said he didn't think it was adenoids, but was worried he might have aspirated and now had Pneumonia. He called the ENT on call at Primary's and they both agreed. So we went to the hospital to get a chest x ray, but it came back fine.  So the doctor said to keep an eye on him and call him in the morning. I went in to check on him about every hour that night, at about 5 in the morning he sounded funny so I went in. His fever was up to 105.7. I immediately called Kyle panicked and we decided I should just take him to Primary's. By the time we got to Priamry's his fever was a little down. The doctors were a little perplexed as to what it was. They drew blood, did another chest x ray, and got a urine sample. They said he was dehydrated so they had to put him in IV fluids. They also had an ENT come down and look at him. After hours in the ER they said they thought it might just be a virus and sent us home. We did fine out a few days later, he had caught the same 2 viruses he had at Halloween while he was at the hospital for surgery.
We recently went back to the Pulmonlogist to check on everything. The good news was that his chest size had actually grown a little bit, so we were all happy about that. He said they were concerned about his airway. There is a chance they may have to do surgery to open it up, but they really don't want to have to do it unless necessary. He also looked at the x ray that had been done a few weeks earlier and compared it to the x ray he did when we last saw him. He said the shadowing on his lung didn't look any worse, but it didn't look any better either. But he couldn't give an accurate answer about it because it actually takes 6 weeks for a virus to be out of your system and lungs. It had only been about 4 since he had the virus's. He said he wanted to do another sleep study to see how is oxygen levels were and how much removing the adenoids had helped. So we have a sleep study scheduled in April to see how things are going. If things are the same or worse they will then put him on CPAP. He pulls the oxygen off pretty much every night now, so it is really hard to keep it on him.
We also had a brain MRI done the end of December. I was pretty anxious for this to happen, he has not had an MRI since last August. The brain and head is the main part of syndrome he has and so much can change so rapidly.  They were a little extra cautious this time with McKay, because of the sleep apnea and the small airway. ( I am super bummed, we can no longer have any procedures done at the Riverton Primary's, he is too high risk.) This was the first time they have ever had me be with him when they sedated him. They don't like to give him the drug that calms them down pre sedation. It slows the breathing down, so it is not good for those with sleep apnea. I told Kyle he didn't need to stay, no sense in both of us being there for something so hard. I am glad I have not had to do that before, it was awful to watch them shove the mask on him while he screamed. The doctor warned me their breathing got sporadic and they usually turned red and purple. All of which he did, it was horrible. He fell asleep pretty quickly and they took him for the hour long MRI. His breathing was a little off afterwards but we were able to go home after a few hours in the PACU.
We talked to our Neurologist the next week to go over the results. I called to get the results and I was very relieved our doctor called us back, and not a resident. He said the results were abnormal, which we already knew. The good news was his ventricles were now a normal size. The ventricles are where there is a big risk for hydrocephalus. His were previously enlarged, but are not in a normal range. The area in the back of his brain is still growing a little too much. It is called Cerebrrall Tonsillar Herniation, his still is not a severe case and it has not gotten a ton worse. They will have to continue to monitor that, in hopes he will not require surgery. The Neurologist did say he believed he did have a second syndrome in addition to the M-CM syndrome. It is just a syndrome of the brain called Perisylvian Polymicrogyria Syndrome. You can google it if you want. McKay is not on the severe end for this syndrome. It probably is the cause of his eating problems, his mouth constantly being open,  and speech delay. It also has a very high risk of epilepsy and seizures, but they don's present until about 4-12 years old. So we are definitely not out of the woods for seizures. He also has cortical dysplasia, which means the edges of his brain are thicker than they should be. This can cause learning problems, some can have a mild delay, others can be a severe developmental delay. Our doctor was very anxious to hear what the Geneticist in Seattle has to say. We have decided to take McKay to Seattle to see the doctor that diagnosed him. He is the leading doctor in the syndrome he has and is currently working on finding the gene where it is located. We will be going in March to see him. We hope it will be very helpful and informative and be able to give us some direction.
It has been a very busy few months and we have been to Primary Children's more than I thought possible in 3 months. I am very grateful to have such an amazing children's hospital close. Even though most of our specialist don't have the answer and are not sure what to do about McKay, I feel like they genuinely care about him and are trying to help as much as they can. There are still a lot of unanswered questions, but I think there always will be with McKay.