The PJ's: Hospital Norms and Ryker the Fighter

I have just realized how long it has been since I wrote on this blog. To be honest, it's been a crazy stressful life the last four months. I haven't really wanted to write about all the mishaps, depressing trials, and doctor fights. The last time I wrote was back in March. We were waiting for a swallow study, a sleep study, and surgery for little man's eyes. Well one was successful, one went horrible and one didn't happen. We also found a house that was trashed and neglected. Months of cleaning,
new flooring, New toilets, New paint. It was a mess trying to find contractors to finish everything in a timely manner. We had cat poop under the stairs that made the whole basement smell. New everything and finally it is looking like a house. It feels so amazing to finally have my own space and my own family under one roof.

Tears have overwhelmed my life the last four months. Once all was said and done we finally moved in on May 16. We still had many projects to do when we moved in, but we are finally to a point where my house looks put together and homely. During the fixing up process of our house, we had a little episode with Ryker getting sick in April. He got a cold virus that made it so he had to go to the hospital. Once again in the hospital they wanted to Trach our little man. I have been fighting the doctors and going with my mom intuition about that topic. I feel the spirit strongly not to do it. But every time we go to the hospital it comes up and I feel we are losing the battle. Well that particular time in the hospital Ryker was pretty sick. Trying to get to Primary Children's was a challenger itself. That night the President of the United States happened to come into town. They shut down the freeway and we couldn't make it to our end destination. We talked to a police officer who told us that the president doesn't care. I was very frustrated at the officer's response and attitude. The officer called an ambulance to take us to the hospital, but they wanted us to go to Davis hospital. Knowing we would just be transported to Primary's we decided to decline the ambulance and take the back roads. An hour and half later, we showed up to the ER. In the ER, we were told Ryker had been retaining CO2 and his levels were so high they.were surprised he was still breathing. We were admitted and stayed for a week. They decided it was best to send him home on a bipap machine. Ryker liked it at first. He slept better and had more energy. He even stopped desating at night. His oxygen levels were riding at 100%. Ryker started taking milk more by mouth because of the swallow study we did. We found he is successful when his formula is honey thick. Feedings were going well, sleeping was going well, and therapy was improving.

In June, everything changed. We were scheduled for a sleep study, but it didn't go well so we had to set another date. They fit us in on a Sunday. Ryker and I went to the sleep study hoping everything will go well, but during the night things changed for the worst. Ryker was desating into the 70's and wasn't coming out of it. We were admitted back into the hospital with low oxygen levels and high CO2. Frustrating!!! I think I cried more that time in the hospital then any other we had experienced. I felt lost! We tried the bipap and it hadn't been helping. I still felt we weren't suppose to trach him, but we now what? It might be the last resort. I fought more with the doctors then ever before. I get mad when they don't talk to each other and try to figure something out. Luckily, we had a very friendly and patience doctor, Dr. Crammar, that finally listened to me. I told him all the symptoms and experiences we have had in the past. He decided to do a CT scan on his lungs. After crying and pleading to the Lord, they finally found something. Ryker was diagnosed with a hernia in his diaphragm. His spleen was up in his chest. Many of the doctors believe this is not what is causes his breathing problems. But I feel strongly that it is. We are so grateful for following the spirit and the promptings of the Lord.

After thinking about all our hospital stays and all the problems Ryker has been having from a collasped lung in the Nicu to the problems of surgery in January. Also the retaining CO2 in April and June. Heavenly Father really has been watching out for our son. I believe that Heavenly Father made it so the Doctors couldn't see the Hernia when he was born because Ryker was too little and too weak to get the surgery. He may not have made it through if we found it earlier. All the hospital stays and disappointments have been for this one moment of relief. Ryker needed to be stronger, bigger, and be able to breath better. If he didn't get sick in April we would have had surgery in May for his eyes and testes, but he may have struggled more. He might not have got extubated. Everything happens for a reason. It was all part of his plan and we just needed to struggle through it and learn from it. It's not what I had in mind of what Ryker's life would be like, but at least we have an answer. It's going to be hard to wait for this surgery. I don't think I will be a very patient mama, but I will try. Surgery is Scheduled for July 22. Prayers that everything will go the way I want it to go. Praying also that my way is the Lord's way as well. Praying for a miracle.