Home Once More!

Well, we have been home now since last Friday We've been so busy since returning, I haven't had to time to update everybody. But I'll backtrack a bit. Last Wednesday when we were back at the hospital Tammy became sick and we had to force her home to prevent her cough from spreading to Declan. That made for some long days and nights for me. The night that Tammy went home Declan was moved from the PICU to the "regular children's floor".  Unlike the PICU, on the "floor" nurses are assigned to multiple patients, So between the lack of nursing help and Declan's relentless screaming, it made for some long days and nights Anytime he was laid down, he would scream. Anytime he was touched, he would scream. It was rough. It became one of those times when you were just surviving from hour to hour.
Thankfully his condition slowly improved. Each day be began to smile a bit more, and cry a bit less. Declan still had periods of great agitation, but there was improvement. However his oxygen saturations weren't quite where they wanted. They would often drift into the low 70's. As a result, at discharge that Friday night, we brought Declan home on oxygen. So he has a nasal cannula that is taped to his face and a machine the pumps oxygen 24X7.  It has taken a bit to get used to but we are hoping that he will only have it for the next 4 weeks or so.
The first few days home were a bit rough as well. We found that the discharge papers from the hospital were incorrect as far as his dosage and medication.  After multiple calls to the doctors and nurses, we straightened it out. He required pain medication 4 -6 times a day, other medication once a day, a few types that were twice a day, and a few that were 3 times a day. We had to make a chart to keep track of it all. That first night was painful. Declan was constantly up. If he would get agitated, his oxygen monitor would go off and beep and wake him up. Then he would start scramming. We'd get him back to sleep, but he would squirm, the alarm would go off again, and he would wake up again. Over and over. We probably got 2 or 3 hours of sleep than night
We took Declan to our regular pediatrician on Sunday and found he had an ear infection, which explained a lot of his discomfort.  Add one more medication to the list. But the medication was successful. We saw improvement over the next few days as his disposition continued to get better. A little more sleep each night and a little less crying each day.
Declan now smiles much more regularly. His "talking" has started back again. We can now change his diaper without him screaming at full volume. We are so happy he is returning to "normal."  But thank you all for all you have done. My parents, Tammy's parents, family, friends, visits by family and friends, we can't tell you all how much we appreciate it.! We have scheduled his "G-Tube" surgery for later this month as well. We hope it will help his constant throwing up.