Sunday, September 28, 2008

September 12, 2008 - Nathan's Sleep Study







On the 12th of September, Nathan and I made the trek up to Primary Children's again to have a "sleep" study. Kristin and Shawn were extremely sweet and let Elisabeth sleep over that night since I would be gone with Nathan and Jake had to get up extremely early the next morning and go to Utah Valley University and take the Praxis test to be able to teach 8th grade science in Utah.

Nathan and I got up to Primary's about an hour before our actual appointment and so we went to visit and friends Elaina and Hollie. Hollie was just on her way out the door, but she spent a couple of minutes talking with me about what the study would be like also a little about her sweet baby girl. Elaina is such a doll; she just needs to get out of that hospital! She has been hospitalized since April. Originally she was diagnosed with Tetralogy, like Nathan, but her heart has many more nuances and she was diagnosed with DiGeorge Syndrome. Nathan and Elaina have many of the same issues and so its been wonderful to have a good friend like Hollie to talk with. She says she's grateful by the support that has been given by others; little does she know what a support she has been to me!

After chatting with Hollie, I took Nathan down to the sleep study lab and got him dressed in his jammies and gave him his medicine. That is when the real fun began. Nathan was fairly mellow about having his head covered, until the cap went on. He began to fuss and the nurses commented that of all the babies that they've had to do this to that he was the most mild mannered about it. I was able to get Nathan to sleep by 9:30. It didn't take long for him to start crying in his sleep (like always). He also tried to pull off some of the leads. The nurse kept having to pop her head in every half and hour or so until about 11:00 p.m. That is when Nathan's oxygen levels kept decreasing and constantly stayed at or below 85. The nurse ended up sticking him on oxygen and then the adding an extra cannula in his mouth to read the CO2 levels better. Meanwhile, I had my own blanket and pillow on a pullout couch. I don't think I got more than 2-3 hours of sleep that night. I can honestly say though that Nathan's sleep wasn't too different from his sleep patterns at home.

As I write this post (2 weeks after the fact), I got the news back from the ENT that Nathan has severe constrictive sleep apnea. We are going to be seeing the ENT again soon and are now adding a sleep doctor to the circle of our closest friends at Primary's.

As this is going to be a journal of sorts at the end of the year, I'm writing down Nathan's doctors.

Cardiology - Dr. Collin Cowley
Cardiothorathic Surgeon - John Hawkins
Gastroenterologist - Dr. Molly O'Gorman
Dietician - Sharlene Coombs
G-tube/Missen doctor - Dr. Earl Downey
ENT - Dr. Albert Park
Plastic Surgeon - Dr. Faizi Siddiqi
Orthopedic Speciality (helmet) - Shield's Orthotics (they have 2 doctors that see Nathan)
Orthodontics - Dr. Dwane Yamishiro (cleft prothesis)
Genetics Doctor: Dr. David Viskochil
Speech Therapist (Primary Children's) - Helena Taylor
Speech Therapist (Kids Who Count) - Mary Walker
Primary Care Pediatrician - Dr. John Bennett
Sleep Doctor: ???

Hmm... this circle of "friends" is growing a little bigger than I would like. No wonder we are up at Primary's an average of 4-5 times a month ever since Nathan was released from the NICU on March 22nd!

1 comment:

Tiffany Moore said...

Those pictures are adorable!! He is soo cute! You are such a strong woman to deal with all that you have. There are days that I think that I have had about all I can handle with Kami and I think about how lucky that I am to have a baby that is health. I am so happy that he is getting better. I truly believe that the lord only gives you what you can handle and I know that I haven't really talked to you in quite a while but, knowing what I know about you. I cannot think of anyone that could handle this better than you. You are truly an inspiration to me. I hope that this all passes soon and you can get him ready to be the starting pitcher for the Rockies!! Or the Rex Sox both are great teams!!!