(Yesterday, Sunday, May 30)
Ok. So sorry for the lack of updates for the past two days. For those who do not already know I have been horribly sick the past 2 1/2 days with what I am pretty sure is food poisoning. Truly horrid....and I hate vomiting. I was super concerned I might have rotavirus which would have really sucked because then I would have been out of C's room for a VERY long time. But, with food poisoning once it runs it course it is gone and I am allowed back in her room.
I was so very happy and excited to finally see C again.
She looked like a different baby to me at first.
She has scabs from where the tape has burned her face and neck. She is so thin, including her face and head (no longer puffy). She has bruises and cuts and pokes and scrapes. Her eyes are a little bruised.
And yet, she still looked beautiful.
She has had to fight a little harder this time but she has made it through. Her blood pressure still remains a little high, even with all the medications she is receiving and in turn her lung pressure is still a little high. However, her heart is functioning very well and her flow remains good. Her sats are a little lower than that what we have been used to but that is to be expected. She is finally running where she should be but it will take us a little to get used to it.
I think she would more than likely be discharged tomorrow but because of her eating and our insistence on getting a g tube this time we are stuck her for a bit longer. The timing on this has been totally off. Due to her not hitting her stride in her recovery until the end of week and then this being a holiday weekend, the earliest she can get the tube placed is Wednesday. Ugh. If she gets the tube Wednesday, then she will not be able to use it until Thursday. Then the observation to make sure it is working and she is tolerating it. So, the earliest we are getting out of here is next Friday. We so did not want this to happen like this but oh well, we do not have much choice now. I talked with the doctors this morning and they all agree it will be best for her to stay then to go home and come back. They are afraid that if she goes home then the GI docs will not have a sense of urgency about getting her tube placed and it could be weeks before we can get scheduled.
Plus, the benefit of staying here is that C gets to have my favorite intensivist help with her procedure, do the sedation and she gets to have the whole thing done in the icu where if there is a problem everyone (including cardio surgeons) can be here immediately to help her. So, while it is totally stinky to have to live in the hospital for another week, this will be the best option.
C's eating is getting better. Still not where it should be but better. And she is still not vomiting. Yay for small steps!
We do have a little more freedom now. C has absolutely nothing hooked up. All her lines are gone. Her last remaining iv blew yesterday so they took it out. She still has her ekg leads on and her pulse ox on but she does not need to be hooked up to the monitors all the time. She only needs to be hooked up for the nurses vital checks and at night when she is sleeping. So we are able to walk around a little bit. At least it helps to get out of the room a little.
Kevin will be going back home tomorrow to be with the boys. They have been having a blast with Kevin's parents, who have been sweet enough to put up with them for the past week. I miss them but they have been doing well and having so much fun with the start of their summer vacation I am not sure they have been missing me any! Will be so very happy when we can all be home together soon.
Thank you again for all the prayers for C. I know they have been heard. C is here today and is back to her old self. She has not lost one little thing. She is still babbling, smiling. laughing, sitting up, scooting around, calling me mama and Kevin dada, chewing on everything, playing with her toys and in general being her normal self. I am so very, very relieved. I was so very scared that even if she pulled through she would lose something and I think one of the hardest things to deal with is watching the lose of potential. Seeing what you could have or did have and just watch it all disappear. But, I have not had to do that and I am forever grateful that we have more time with C.