Suffice to say it's been mostly hurry up and wait around here. Nora will have to be in the PICU until discharge since she needs the Bipap. They simply don't have the staff to take care of a kiddo with that on the regular floor. It's a good thing also, because the staff to nurse ratios up here are less than the floor.
The goal has been to get Nora up to 3 kilograms so that we can get the surgery underway. However, since being admitted, Nora has not gained any weight. Last night she also started to have some swallowing issues. This morning we decided to fortify Nora's milk to give her more calories in hopes that her weight would improve. However, the swallowing issue continued. The decision was made to do a video swallow study so that we could see for sure whether or not she was aspirating. Unfortunately, it did show that Nora aspirated thin liquids. The good news is that she appeared to tolerate thickened liquid very well. So we are going to thicken her formula so that she can eat easier and also continue to fortify it to give her more calories. So far she has had two feedings with the thickened formula and it has gone really well. If things go as planned, we are hoping we can do the surgery early next week.
The Care Conference is scheduled for tomorrow, and thankfully Justin will be able to attend. I am really glad we are doing this, because the whole team will be there and we will have a chance to ask our questions face to face and make sure we feel that we have enough information to make a decision as to when and if we go forward with the trach. Our options are to do the g-tube surgery and then see how she does with Bipap, or just do both the tracheostomy and the g-tube in one surgery. The plus of doing both at the same time would be less time under anesthesia, and we also don't have to worry about Nora recovering from one surgery before doing the other.
In all honesty I have absolutely no idea when we are going to be going home. But with the upcoming surgery, I imagine it won't be until late next week at the very earliest. Depending on what we decide, there are a lot of things we need to do to make sure we have everything needed to bring Nora home and give her adequate care. Thankfully, we have an amazing team that includes a case manager, social worker and the Palliative Care team as well as her specialists and the PICU doctor who are all working together to coordinate things so that the transition home can go as smoothly as possible. I can't say enough how wonderful our experience has been here at the Castle. Nora has received excellent care, and I have been very pleased with how involved everyone is and how everyone seems to be on the same page. The staff here work as a team very effectively, which is hard to find in many areas of healthcare.
In other news...we received word today that the appraisal for our new house has gone through! Another hurdle taken away! We are very relieved about this, because our current house really won't work for keeping Nora at home. Nora and Lydia would have to share a room, which with all of the care Nora will require is not fair to either of them. It is a good feeling knowing that we will have room for everyone and overall a better support network. Leaving Jackson is going to be difficult for a number of reasons. We really do love the area and the people here. Also it is the place where we took home all of our girls, the place we took Mayzee home, and our first house. Since Millie is buried in Jackson, that is also something we are struggling with. We do not want to move her, because we don't want to disturb her resting place. Thankfully it is not a far drive and we have many loved ones in Jackson who I know will help us keep an eye on her gravesite.
As always, we are grateful for all of the prayers, love and support coming our way. Our family is incredibly blessed and we know that we are not alone in this. We also have a God who is faithful even when we fall short. Hopefully tomorrow I will have some time to update again. But for now, I will wrap this up so I can get going to Ronald McDonald house. I can never seem to sleep in on hospital days, and last night I didn't get a whole lot of sleep.
Until next time,
Sami
Praying 🙏🏻
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