Scary Results

Okay, so I have to catch up a lot. This entry should have been written middle of Feb 2010.(picture is Westin practicing opening his mouth and saying ahhhh for the Dr) Well I hadn't heard from the Dr about Westin's sleep study results, have called twice. Found the results while at work and started reading, turned the page and my heart went up into my throat. He apparently has a significant apnea unlike the tech told me. He had 49 central apnea , brain doesn't tell his lungs to breath, and 79 obstructive apnea lasting from 10-15 seconds with a few oxygen saturation dips into the lower 80's, but did stay between 90-93% most of the time. That is about 30min of not breathing every 7 hours.
I could hardly think, I walked around in circles for a few minutes trying to finish up and think about my patients and what they needed. I went into a patients room that I had gotten close to over the past few days and she was finally having a good day after three tough days. I told her what I had just learned and was about to break down. She asked if she could pray for him, I said that would be great. We bowed our heads and she prayed for Westin while tears streamed down my face. I think I cried for him and all we/he has been through in his life and for the new scary road ahead. It is the probably only the second time I have cried over his difficulties, I didn't even get emotional when he was resuscitated at birth. So, the patients husband walked in and joined us. She finished her prayer and they both gave me encouragement. I apolagized for bringing my problems into their world. They both said it was okay and that it was healing for them to help someone else during their struggles. They offered to let me borrow the pulse ox they had but I told them I would get a hold of the Dr and get him on oxygen that night. It was weird for me but very refreshing to be able to get prayer and support right then. I felt much better and was able to finish my shift and then focus on Westin.
I then started calling his Dr's. The asthma Dr that ordered the test had no one on call in the evening (it was 8pm by now). The sleep clinic didn't have anyone on call. So then I called the on-call Dr at his pediatrician office. They were helpful and took control even though they didn't order it. So by 10pm Praxxair oxygen supply was at our house setting up an oxygen tank for him. (the second time we have used them and our 5th time for home health). I had told Westin he would wake up with oxygen in his nose and a little tape on his face. He understood he needed it to sleep better and was okay with it. He slept great and came upstairs the next morning bright eyed, rested, talkative and in a great mood. He said he felt good and liked the oxygen.
The next three days were spent on the phone figuring out what the next step was and who was going to do it. The end plan was; Dr Dawson (his awesome pediatrician) ordered continued oxygen at night, ENT visit the next friday, pediatric neurologist and sleep specialist to be seen at Children's Hospital Denver end of april. Asthma Dr didn't want to deal with it, condenser, tanks and more cannulas delivered to the house. Westin learning about his oxygen and doing very well with it.
The ENT looked at the results, looked at his throat and suggested a tonsillectomy and uvulectomy due to it being long. His tonsils were not large but since we had documented obstructive apnea the standard treatment is tonsillectomy. The best news from this appointment is that we learned that longstanding obstructive apnea can cause central apnea and that correcting the obstructive apnea the central can correct itself. So best case scenerio is do the surgery and cure all the apnea. So, surgery was scheduled for March 12 7:30am. We were a little leery of the uvulectomy so had a second opinion by a suggested pediatric ENT. I liked her and she didn't think the uvulectomy was necessary. We still felt that this wasn't the right decision. We decided to stick with his ENT he has seen since 10mo old and discuss the uvula with him some more. So on the day of surgery everyone compromised and felt good about doing a partial uvulectomy to get rid of the extra length but not cause speech of swallowing problems.
So then the waiting began. We prepared for surgery by getting help lined up and people to take Grace for two days and time off of work for us both. Westin continued to do well with the oxygen, occasionally complaining of a dry nose and mild nose bleeds. A little neosporin fixed that. The talkative, awake, pleasant Westin has continued in the morning with the oxygen use.