Yesterday afternoon, they extubated Annelise. (took out her ventilator). They put her right to CPAP (a mask over her nose giving her continuous oxygen). But she was struggling so much, the team decided to re-intubate her. :-( They think that her trachea was inflamed. She couldn't move the air past her throat. They decided that they would try a course of steroids for 1-2 days prior to the next attempt to help reduce any inflammation. She looked so sad after the re-intubation. It was heartbreaking. She had her eyes open and was crying.
After re-intubation, her temperature was high....a little over 99 degrees F. Also, her heart rate was high. The nurse on Sunday had said that they were watching her hemoglobin levels and may need to do further blood work to see what was up. Annelise looked worse and worse as the afternoon went on. She was inconsolable, even though Matt and I were taking shifts standing at her bedside and rubbing her head and holding her hand.
The nurse gave her a rescue, and then took blood to check her hemoglobin. Then the NP came to look at her. She did a very thorough exam of her. There are many reasons for the fever and high heart rate. Withdrawal from the sedation/pain meds that they stopped on Sunday, the hemoglobin being low, exhaustion from the extubation/re-intubation, or a possible infection. They decided to run a bunch of tests to see which it was. We found out late last night that her hemoglobin was a little low, but not seriously low. So they started a blood infusion last night. And then they continued it today. The cultures for infection are being tested. The withdrawal is something that we'll have to see if it gets better with time, as well as the exhaustion.
So poor Annelise is having a rough time. She's not really happy lately and wants to be left alone by everyone it seems. She seems the calmest when no one's touching her. The nurses say that this is a combination of her CDH and being a preemie. It's horrible not to be able to comfort her. So Matt and I sat there for most of the day and watched her lay there. She wasn't awake much at all.
The plan from the neonatologist is to see if there's an infection. She's on antibiotics preventively right now. If there is, they'll treat it. If not, then they'll start the steroids and maybe try to take the ventilator out this weekend. We will see.
We really appreciate everyone's support through this journey. It's hard to handle days like yesterday and today, when it seems like she'll never get better. But it is a journey, and Annelise is the strongest little girl I know. She's such a fighter. She just likes to do things on her own schedule. So we wait for Annelise to tell us when she's ready to breathe on her own.
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