I found myself counting today...22 days now in the PICU. I know to some that may seem like a ton, maybe if youve been there it may not seem like much, to us we dont know any different with what this little girl has gone thru but trust me, some days it's a challenge. But I think back to over our 130+ days in the NICU and I think wow, we can get thru this, we surely got thru that. There are kids who are far more sick, who won't be home for Christmas and we have spent Christmas in the NICU so I do know what it's like, but I still just want my family home, together. It's really like a secret society up here, some kids alone, some with loved ones, but all very sick and there for a reason so please keep all little ones in your thoughts this Holiday season. It's the best place to be if you need to be, but it's not a place you ever want to be.
Danielle will have surgery this week to put her shunt back in. We are waiting for a complete game plan and when all is ok we will share how she is doing. Tonight they did an Mri that took a little longer than expected to check things out. This time is different for us, a different Neurosurgeon and plan so it is taking us some time to adjust.
Danielle has been doing well. They never got to the bottom of the fevers and thankfully they did subside on their own over the weekend. She's been eating well and at times pretty happy and at times pretty sassy and other times pretty sad. She's such a trooper. She really is so inspiring to me. I learn a lot from her daily and as much as I want to be home, at least we have her to be with at all.
There is a virus going around the PICU so they are testing her for V.R.E. hopefully she will continue to be negative for that. At times we think she had pain so we are giving tylenol for that. She is also still on her 2 mega drug antibiotics, the venco and Refampin. These will continue thru surgery.
The past day or two her breathing has been a bit more harsh sounding at times. Last night I did call RT in and asked them to do an albeuterol neb treatment and it did help, so not sure what that was about, just praying she stays healthy.
Here is a picture of one of her incisions. They opened this up and removed her shunt. There is another incision where you can see where the ventrics go into her brain to drain the Cerebral spinal fluid outside her body temporarily. She also has stitches in her tummy from where they removed the shunt tubing there.
We've got some really amazing people helping us thru life right now and please know we are so thankful. It humbles us and shows us we are not alone. We have felt and seen your love from far and wide...friends, family and some we don't even know. All we are good at asking for is prayer, and if you have to few extra please send them our way. This has been a hurdle that we will get thru, hopefully very very soon. I just want our girl home with us, where she belongs. ♡♡♡
Celebrating our favorite person today!
6 months ago