Like Ethan said, there was no chest closure today. I raced up to Milwaukee eager to find out the timing of the procedure. I walked into the room and the nurse, Rachel, informed me that her blood pressure had been dropping most of the morning. They had to up her Epinephrine dosage to .1. She came off ECMO on .08 and the docs needed to wean her down to about .05 to be able to close her chest. This would give them some room to be able to come back up after closing when her heart will need extra help. But she did not tolerate it today. Her blood pressure was down to 50’s over 25 at one point. They like the mean of her blood pressure to be around 45-50 and she was hanging around 32 for most of the day. With the Epi adjustment and a dose of albumin, they were able to stablize her, but the chest closure was certainly postponed. I was completely heartbroken. Getting her chest closed is one huge step towards holding my baby girl and this was like a punch in the gut.
I was quite emotional after receiving this news and then Gabi awoke. She, for the most part, is fairly comfortable when she does wake up, but not today. It was like watching her cry through a thick pane of glass. Her mouth was wide open, chest heaving, face beat red, but she couldn’t get any noise out. She did this off and on for over 4 hours. They have learned that Gabi doesn’t tolerate adavan, and morphine doesn’t really have any affect on her, so they gave her a hefty dose of ketamine, but she was still extremely agitated.
For the first time in a while, I just cried with her and touched her where I could. I wanted to rip out all of the lines and scoop her up so desperatly. so so desperatly. There really isn’t any place to even touch her. She only has one foot that is without any lines and who wants their foot rubbed when they are uncomfortable??? She has bruises all over her body and not to mention the tape, everything is taped onto her…it looks horridly uncomfortable. I cup her head (the physical therapist told me rubbing her head can be irritating to them, so she showed me how to just cup her head in my hand and place pressure). It is the only thing I can do for her. I lean in as close as I can get and tell her everything is going be OK. over and over.
By 5:30, the surgeon came by and they decided to do some exploring. She was still extremely agitated and the anesthesiologist came to sedate her. She finally looked comfortable. They kicked me out of the room and set up a little operating room in her room. An hour later, the surgeon told me that he was glad they opened her up again. There was some fluid pooling in there and the bandage had been on since the surgery (2 weeks ago today) and they needed to replace it. They cleaned out her chest and he had a hunch that she has some kind of infection. That might explain the blood pressure change and the way she was feeling today. They ran some cultures and now we wait for the results. Her numbers are OK now. The Epi is still up at .1 and they continue to give her albumin to maintain her volume. But she is stablized and the surgeon, Dr. Mitchell, thought they would revisit the chest closure procedure in a few days. Dr. Tweddle and Dr. Ghanayem return from their trip on Wednesday, so I am looking forward to having them back. Dr. Mitchell is just as awesome, but Tweddle is THE man.
Today, I felt like screaming “I can’t do this anymore!” I am so tired and I am so scared. Scared of over using my mom and sister, scared of messing up my other kids, scared of loosing Gabi and hearing my husband’s teary voice on the other end of the phone 85 miles away…it was too much for me today. But then I paged through some comments left for us and one in particular got my attention. I clicked on her name and it brought me to her blog with this quote staring at me.
“When I see that the burden is beyond my strength, I do not consider or analyze it or probe into it, but I run like a child to the Heart of Jesus and say only one word to Him: ‘You can do all things.’ And then I keep silent, because I know that Jesus Himself will intervene in the matter, and as for me, instead of tormenting myself, I use that time to love Him.” –Saint Faustina
Thanks Barbara. We can do this. And so we press on…