|We are ALL looking forward to Jacob coming home!|
Dec 29, 2011 -Never mind the Happy New Year...we're not coming home until next week. Jacob is not doing well with his final wean of Ativan. Now he will have more doses at a smaller amount. He is doing the worst he's ever done with withdrawals. He has cold sweats, vomiting, sneezing, coughing, crying uncontrollably, an irritated & bloody nose, tremoring, hyper-sensitivity, and a gamut of other things.
Being that it's another holiday weekend, everything is shut down Sat-Mon. So even if we were ready to come home we couldn't. Before leaving we need to be trained to use his feeding and oxygen pump. The home health care can no longer do this until a discharge date is given. Then they need 24 hours notice to get supplies and trainers out to us. This is a new health care/insurance issue.
On another note, apparently Landon and Hazel are sick once again! So even though it is so maddening that we aren't coming home, I guess it's all for the best.
I advocate for my child and today, especially, I felt that I'm often passed off as a hysterical/overzealous mother. A doctor reassured me today that on the off chance that something did happen to Jacob, I will never doubt that I did my best by him and I should let go of what other doctors may think of me. That was very calming to hear.
This was written by a friend here at the hospital and strangely enough, just sums up our day in so many ways:
"Dear Doctors, as much as I appreciate everything you've done, which trust me I really really do. But when I say something is different than normal, don't come back with something like "well you know she only has one functioning lung.."... no s*!# Sherlock, she's always only had one functioning lung, I'm not new. I've been here with her everyday the past four months. I almost wanted to reply with "WHAT?! WHEN DID THAT HAPPEN". Haha. I love all the staff here, I just hate when it feels like they just send someone in to "calm me down" or something. There is no calming me down, I'm calm, I just want to address my concerns and ask my questions and get a legitimate explanation or answer. AA Dr was in here this afternoon and looked at her for about thirty seconds quietly and said to me "you know she's a miracle, right?" I most certainly do!"
One of Jacob's doctors said upon leaving today: "Well, I'm glad we're at this point of having a discussion about him getting ready to go home instead of the one we had when he came in about not surviving or going on ECMO"
The doctors have made it quite clear that they weren't sure Jacob was even going to live upon seeing his condition at birth and being admitted to Children's. I never had the dire feeling that we were going to lose him, but it is clear now just how lucky our baby is. We are thankful for every minute!