Chubby Cheeks

Tammy and I have been loving our new Declan. He's been doing so well. His spit-ups have stopped and he continues to improve. Since he's not throwing up, he has been gaining weight like crazy. He has the cutest little chubby cheeks. We are working on compressing his feeds. We've gone from 3 hours on feed, and two hours off; to 2 hours on and 3 off. Because he's gaining more weight than they would like, we have decreased his overall calories. They've given us the clear to stop feeding at 11pm so we can get another hour of sleep!

His G-tube has been great as well. It is nice not to have to check placement, as we had to with the NG tube and we don't have to replace it if he happens to spit it up. We just hook up the tube and go. We are still working on his oral feeding, but not much luck there.

He really is a happy baby, we love his smiles, coo's, and his little baby growls.

Freedom

We are home again after our latest hospital adventure. On Tuesday morning we arrived bright and early for his surgery to insert his "G-tube" - which allows us to feed Declan directly into his stomach. We've been looking forward to this for a long time. We've become very weary from constantly putting his NG tubes back in after he throws it up out of his mouth and we feel so bad for the little guy as he cries every time he throws it up.  As part of the procedure, Declan was having a fundoplication , where they wrap the upper portion around the stomach around the esophagus to help prevent throwing up. So we were happy to be coming in to the hospital to finally have the procedures done. The operation was only a couple of hours. When we saw him in his recovery room, back in the PICU, he was still puffy, but nothing like after the two  heart surgeries. He was a bit agitated, but much more manageable than his last recovery after his Glenn.

Another point of our hospital admission was to see if we could wean him off of the oxygen. He has been attached to oxygen since our last hospital discharge because his unaided breathing resulted in a saturation that was still to low. So we were hoping that his lung bed pressures would have improved and we could test him without the oxygen. The first day of his recovery they dropped his oxygen from 1 liter down to 1/2 liter. He responded wonderfully so they dropped it down to 1/4 liter. He initially responded well, but then that night his sats dropped again so we had to keep him at about 1/3 liter which kept his saturations steady.

Wednesday and Thursday were spent monitoring him - managing his pain, watching his incision, and watching his oxygen saturation. We spoke to the doctors and if his numbers didn't improve, we could potentially be looking at a catheter next Tuesday to test his heart and lungs in search for some answers. That would mean more monitoring and a lengthened hospital stay - possibly to next Wednesday or Thursday. So on Thursday afternoon when they wanted to wean him down to zero again and see how he would do, we were a bit nervous. Because if he didn't respond we knew what would happen. So we watched as they moved the dial down to zero. We watched the monitor waiting for the number to drop but it didn't! He stayed within his acceptable range! We were elated! We could keep the tubing off of his face. It was so nice to have access to his cheeks again. We really haven't had him "cheek free". He's always had tape on his cheeks from his NG tube and then again from the nasal cannula.

Friday was spent in a sense of euphoria. His sats were great, we could see and kiss and touch his cheeks, and he wasn't throwing up.  If felt like the beginning of a new Declan. He hadn't thrown up since the surgery. I can't explain how good it feels not to be changing his clothes on an hourly basis. Just enjoying him as opposed to anticipating the next spit up; and watching his entire facial expressions, unobstructed by tape.   It was the closest feeling I've had to waking up as a kid on  Christmas morning. We feel so blessed that he has come so far. We still have to be careful with his G-tube coming out of his stomach, but it feels completely different- not puking all the time. Just before discharge, a musical therapist came and sang some songs with Declan. We recorded some of it for anyone who might want to see. (Although it doesn't work on Iphones for some reason) But wanted to share that moment with everybody. We are now home again enjoying Declan one step healthier and one step farther in  his progression.  We love you all!

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.