We are going home tomorrow!!! Yippee!!! After what we thought was going to be a 3 day stay but ended up being 15, we are finally on our way out! Ella was unfortunately unable to get off the oxygen so we had to get new equipment for our home so that's what has been holding up our discharge. We are testing it out tonight. I am pretty bummed about this, but I am praying that we will be able to wean her off of it. Having to have her hooked up to equipment at home will be pretty rough... I am not totally sure how it's all going to go down because I won't be able to carry her and the oxygen concentrator up and down the stairs... Also, whenever we leave our house we will have to have an oxygen tank hooked up to her so we will have even more things to carry. Just call me a modern day bag lady 😂! But I am confident that she will be able to get off of it relatively soon, I am just waiting for the ok to wean her off from the cardiologist. She has been satting pretty high today on 1/4 liter of oxygen (which probably means nothing to you, but it's a low amount 😀) and we have the capabilities to go down to 1/32 liter.
BIG NEWS! We are going to an Ear-Nose-Throat (ENT) doctor tomorrow at 1pm to talk about getting Ella's trach out!!! It's been a bit controversial between the different doctors... The PICU doctor and cardiologists want to get it out ASAP because heart babies aren't often successful with trachs, but the pulmonologist wants to keep it in for the next surgery so we have a secure airway and so that we won't have to intubate/extubate during the next surgery; but who knows when that will be! I can see both sides. Which leads me to the next update... Dr. Swanson (PICU doctor) talked to me about having Dr. Hill (cardiologist) go back in to try to do something with the clots to get them out. There has been no progress with them, even with the two shots a day, so we need to do something more aggressive. We will be seeing Dr. Hill sometime next week, so we shall see! I will keep you posted! The thought of getting the trach out makes my heart sing! It will make things so much less complicated and the care for her will not be as intense. Matt and I have felt like we have to do so many negative things to her when she's awake that we don't get to do the normal, fun things with her.
I am so, so excited to be going home. I went home last night for the first time in 13 days and it got me so excited for tomorrow!
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| Sassy face with a mohawk! We love doing her hair like this! |
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| One of the fabulous nurses, Emily, made a "toy" for Ella to play with |
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| One of my favorite pictures we have taken so far... Look at how sweet Eli is with her. We couldn't get him to look at the camera! He wanted to touch her and kiss her instead. |
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| Our sweet babies!!! |
We have been in the hospital a total of 90 as of tomorrow... So crazy...I will continue to post updates and I will hopefully be able to update you all on her ENT appointment tomorrow!!!
Love,
Jillian
LOOOVE the pics of Eli and his baby! Gah! Too much cuteness how can you stand it?!
ReplyDeleteSo many answered prayers...thank you so much for this encouraging news. We'll be praying hard that her medical team can battle the sat thing so she can get off the oxygen soon....love you all soooooo much!!
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