Aug 31, 2010
Thankfully he sleeps in a crib that is right next to mine so I can do this without leaving my bed. (Good planning on my part.)
Well after several days/weeks of this ... the sleep depravation adds up.
Why a sleep study? Back in May with his diagnosis, a sleep study was ordered to determine if he was trading oxygen for carbon dioxide ... basically shows how effective his lungs are. During that hospital stay it was determined he would need to go home on oxygen due to desaturation. Somehow the sleep study never was brought up again and I thought it was due to him going home on O2.
The other day his pulse dropped so low for so long and we told the pulmonologist about it and he ordered it done. So we went last night.
Wires. Everywhere. Tubes. Everywhere. Baby. Not thrilled.
He was asleep by about 10 pm and by 5am they woke him up and we were gone. She came in several times during the night.
Everything was fine with the whole evening except this one thing ... she said she was not allowed to give him oxygen unless he desaturated a certain amount for a duration of time. (Any of this sounding familiar to anyone?) I kept having flashbacks of the hospital when the nurses and I (in my sleepy state) would be arguing about how his doctors ordered oxygen for him.
But my hopes were dashed and my anger grew as she told me this morning that he did indeed dip several times but that SHE made the judgment call not to give it to him. aaaaaaauuuuggh!!!
So ... I have decided what to do about it. (After calming down.) I will call the Pulmonologist (who ordered the sleep study AND the oxygen) on Thursday and ask for the test results. I will then also ask for clarification of when he needs and doesn't need oxygen. I need clear guidelines. I will then ask them to give it to me in writing. With their signature and their phone number on it. I never want to find myself again arguing for oxygen for the baby!! I've done it too many times already.
In other news: Last night was his last dose of his 2 oral antibiotics. And around noon today I noticed he has a new spot on him (the ones they diagnosed as MRSA). By 2pm he had a 102.8 fever. By 5pm I noticed a second spot on him but fever is down to 101.4 and he is a grump. There is a rash starting on his face too. (sigh)
But ... tomorrow I will be seeing his pediatrician at 9am and she is going to help me sort this all out. AND we are going to discuss the possibility of him being transfered from palliative to therapeutic care. (More discussions about that on the blog to come.) But basically we don't want him to be denied services due to his prognosis.
Finally, I called the Neurologist office today to see if I could get some answers from them on this subject. And quite honestly, the nurse combed through his file and the ONLY diagnoses she could find were "hypotonia" and "possible seizures". NOTHING, not ONE thing about a terminal diagnosis. So now I'm wondering who gave him that prognosis? I was told them. But they say no.