I am completely blown away by the love and care that has been shown for Bean and our family over the last few days. I've gotten calls, texts, and about seven zillion Facebook messages from people who are thinking about us, praying for Bean in the middle of the night, sharing their own experiences, and just sending love our way. Family, friends, and people I don't even know at all are cheering our little heart warrior toward recovery. I wish I had stronger words for all of you than "thank you". Your love for Jeremy and me means so much, and your prayers for our baby mean even more.
Bean is hanging in there and making small improvements. Now that she is off the paralytic, she is starting to move around and wake up a little. She's still sedated so she's pretty out of it, but she's wiggling her arms and legs and opening her eyes. It's encouraging to see glimpses of Bean underneath all the wires and tubes and bandages, but it's hard to watch her get agitated and upset as she realizes what is happening. I've been ordered to leave her alone for the most part so that she can rest. As much as I want to cuddle her, it's painful to watch her wake up and struggle.
(Jeremy had to go back to work yesterday morning, so my sweet friend Erin is here with me. She is doing an awesome job of feeding me and keeping me distracted while I can't hold my baby. If you have to be curled up on a hospital couch while your little one struggles, it's definitely better to do it with a friend who will watch Friends on Netflix and take 1,000 stupid Buzzfeed quizzes with you.)
My spunky girl is a fighter. She doesn't like being poked by the doctors and nurses or having her mouth cleaned, and she has a special distaste for the vent. When she's the most awake, you can tell that she just wants that tube out. She moves her lips and makes little choking sounds.
Bean's two biggest struggles in the last 24 hours have been with her blood pressure and temperature. The doctor would like Bean's blood pressure to stay above 70 (systolic). It's been hovering in the high 60's and low 70's. Being awake and moving helps keep it up, so they have lowered one of Bean's sedation medications.
Yesterday afternoon, Bean had a fever over 102. They took blood and urine cultures to check for infection. The results from the blood cultures won't be back for 48 hours, so Bean is on two antibiotics in the meantime. Her fever went down later in the afternoon, but it was up over 102 again late last night. The nurse gave her some Tylenol, but her temperature continued to go up after midnight. Ibuprofen over the Tylenol finally brought it back down, and her temp is good this morning. Bean's white blood cell count is elevated, so there's definitely concern about infection. Her doctor is hopeful that the fever is still related to the stress her body has endured and all the meds, tubes, etc. it is having to deal with right now.
On a positive note, they were able to stop one of Bean's blood pressure medications this morning. Her pressures are still hanging in there without the medication. One of the effects of the medication was that most of her blood flow was focused on her core, so her hands and feet have been very cold. They are warming up a lot since the medication was stopped early this morning.
The biggest positive news is that they might remove the vent later today. The doctor has been turning down the settings so that Bean is doing more breathing on her own. Her oxygen saturations are staying up so that's a great sign. I am 100% ready to say goodbye to that tube (and I know Bean will not be sad to see it go)!
This is incredibly hard as a mama, but it has to be even harder and scarier for my baby. I am amazed at the fight in my tiny girl. Even with her little broken heart and blue lips, she was full of spunk and joy. I can't wait to see the things my little adventurer will do now that heart is whole.
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