August 6th
Chest tube: status didn't change. Still dumping fluid from around the left lung... I searched for "chylothorax" on a fb page for parents of babies who have had heart surgery, and found multiple other babies without the extra 18th chromosome with the issue of ongoing drainage too! One string of comments mentioned a low Albumin level as the factor that they believe caused their baby's issue to clear up. I asked about Annelise's Albumin levels, and it was low, so the neonatologist in rounds thanked me for bringing that up, and now they are working to raise her Albumin levels too! That made me feel good and useful.
Tracheostomy: They began to wean down the support Annelise was getting through her trach from the ventilator in the morning... And by the evening, she was on cpap mode, taking all her own breaths!
Today:
Chest tube: No change. They will only think about starting to give her breast milk again when her drainage slows or stops. They have a plan in place now to replace the fluid that she expels at intervals throughout the day, so she won't get too far behind in her electrolyte numbers and all that good stuff.
Tracheostomy: I couldn't even update you on the cpap change before she graduated to a trach collar! You guys, this is so huge... I don't even think my emotions will let me feel the enormity of this milestone at the moment... the anxiety tells me to hold my breath and wait for it to fail.... But she just keeps on rocking it! Hanging out and breathing air that has been humidified for her, and keeping her oxygen sats up with no issues, except for when she gets mad and cries... But they say we all desat a little when we do that.
The team seems to have played with her body chemistry and won the prize of a balanced baby for the most part. They also began weaning a different drug, the sedative, and she's handling that one like a champ.
So to summarize, our baby has a whole different lifestyle today than she had yesterday, and she seems to be loving her life. It's so nice to see her more alert and awake. She has been less irritafed today than she was yesterday too.
That dumb chest tube drainage is holding up our progress in other areas, but we're so pleased that her doctors and nurses here find any way they can to keep her moving forward.
I have felt myself trying to detach from all the feelings today, even the good ones, because it seems there's just no time to process big stuff before more big stuff gets added to it... Then it just seems like all too much all I can do is go cry and take a nap. During a low point of the day, I was resting in the recliner in Annelise's room, and my phone kept buzzing and buzzing. When I checked it later, I had three texts from family members letting me know they were thinking about and praying for me/us. My aunt even mentioned that she felt a nudge from God to pray for us. These aptly timed texts remind me that God is in control of the timing. I can surrender the chest tube drainage to Him, and focus on enjoying my family and the blessings like the trach collar that are just so incredible and encouraging! It looks like I might not have to drag around a ventilator all day you guys! 😊😭😍🤩🥰😎😁
Random extra note: Each month we have to switch rooms at the Rainbow House, it's how they keep the rooms clean. So I'm excited to use up all the extra nervous energy in my body by moving our stuff to a room a few doors down the hall. The last room change was completed by Kevin and the fam that was visiting at the time (thanks Jeff, Katie, and Mara!) because I still couldn't lift heavy stuff after the c-section. It feels good to be able to move again!
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