A Little Something Extra

Monday, May 12, 2008

CPAP still on

Sorry, still no photos to post of Micah with his helmet/snorkel/elephant trunk apparatus (AKA the CPAP). I'll try to email a photo to Amy tomorrow and ask her to post it.

I was really hoping the CPAP was going to be a 24-hour affair, but no such luck. The new attending MD (they switch every week) said that Micah needed to get his voice back before he'll talk about stepping him down. Great. And I already miss last week's attending. Apparently the nurses like this week's attending better, but I don't care for his bedside manner.

Micah had a very rough spell this afternoon and was completely inconsolable. It was heartbreaking. He was crying so hard, but not making much noise. Morphine didn't even do the trick. His nurse had to add a sedative. Maybe he will be more comfortable tomorrow after they take out his two remaining chest tubes (okay, maybe he'll be more comfortable a few HOURS after they take them out... he screamed for a while after they took the last two out on Saturday). All I want to do is pick him up and snuggle him to sleep. I can't stand it.

I'm sick of "sad jail." I know that Children's Hospital is supposed to be a place of hope. But I still see it from a sad perspective. It's my realistic side coming through, I guess (Mark will call it pessimism, but I prefer to call it realism). I enter in the morning to see moms in their slippers going to get a cup of coffee. They've been with their sick child all night and just need a break. Or I see moms pushing their disabled teenager in a wheelchair into the Clinics building for one of likely multiple visits that week, looking like they desperately need a break but trying to keep smiling.

I have to say, that I don't feel like I'm entering prison as much as I did when Micah was in the NICU after he was born. Maybe a good portion of that is because I'm no longer pumping so I at least don't have that piece of equipment to worry about and I don't have to be doing something I hate every three hours. The nurse asked me if I was headed home when I was walking out this evening. "I guess that depends on your definition of 'home,'" I said. I can't stand that Micah has been in the same bed in the same room for 7 days. I know he won't be moved to the 4th floor until he's off the CPAP, and I don't think they will move him on high-flow either so it might be a while. His lungs are still rather sick.

"His lungs are sick." That's what the nurse told us around 6:00pm last Monday while we were in the surgery waiting room (after all others had come and gone). That's when they were having a difficult time getting him off the bypass machine. That was a long evening.

Micah had his first echocardiogram since surgery today. It showed that he has a small amount of leakage through the valve on the right and "moderate regurgitation" on the left side. According to the cardiologist, that regurgitation is exaggerated by the inefficiency of his lungs so it should improve as his breathing improves. Please pray that is the case.

I hate that we're now needing to plan for another weekend in Milwaukee. I don't know how much longer we will be here, but the fact that Micah is still in the PICU does not bode well for us leaving soon. I just want to get him home so that we can move forward. That statement alone makes me cringe. What does that look like for him? He's four months old and can't hold his head up. How much of that his weakness due to a weak heart? Or is it more associated with the fact that he has Down syndrome and has low muscle tone? Time will tell. But I'm so jealous of the family that is leaving tomorrow with their baby girl whose heart was repaired a week ago and will likely never see Children's Hospital again and will likely develop at a "normal" pace.

Sorry. Having a pity party tonight.

4 comments:

My blessings times five said...

I just want to tell you that I have followed your journey and pray for you all every day. I know you are hurting right now, and probably exhausted more than anything, but I want to let you know I was thinking of you. I assure you, once your little one is able, you will have more joy than you ever thought possible. Will he move like a typical child? I am going to tell you right now, NO. But he will do what he has been designed to do. He will make you see the little things in a way that you never had the time to see them. He will make you taste the joy of accomplishment with a whole new zest. He will make the words overcoming obstacles have new meaning. Our children do not move in fast forward. But they teach in fast forward. So be ready for lots of lessons, and lots of smiles. I know that you are probably very tired from being the care giver. But we are all praying for you. It is not easy. In fact it is anything but that. But none of parenting is. We are praying for you all. Sending lots of "get to step down vibes." Love, Diane

Amy said...

Jennie,

Our hearts are aching and praying for Micah and all of you. There is just nothing easy about this. I wish I could come and give you a break. Since I can't, I'll keep praying!

And feel free to email whatever you need me to post.

Love,
Amy (for all of us)

ATLKrafts said...

pity parties are allowed! it wouldn't be realistic if you didn't struggle with all that has gone on. just don't let it crush your spirit or lead you to despair, girl. you are really doing well, and it is a marathon, not a sprint. we are so happy that he continues to improve, if slowly some days. chest tubes coming out are good!

The Lenda's said...

Jennie-
Praying for your heart to heal as Micah's heals. Praying for peace and comfort for you. Praying for strength and healing for little Micah's lungs praying that he is able to continue to improve and get out of the PIICU and be home before to long. Praying that God gives you grace to anticipate each precious milestone in Micah and His perfect timing. Praying that once he heals from surgery his eating and motor skills continue to progress.
Hugs and Prayers.
Rachel
PS A few days ago I put Micahs picture up on my blog and hope that a few more people are reading and praying for him and you all now.