The latest update from Stacey, keep those prayers coming and pray for a diagnosis that will come soon, along with a treatment plan.
Liam -Day 6
Today was a pretty good day. We’ve been told to take our days 12 or 24 hours at a time and we are trying hard to do that to stay positive and sane. We are also asking God for strength.
The neurologists were examining Liam when we arrived this morning; Dr. Kilroy and Dr. Anderson. We are still pending the MRI results so we still don’t know anything at this time. Dr. Kilroy was very nice and explained that it appears we are dealing with a syndrome to explain all of Liam’s symptoms. We are still hoping to meet with all the doctors on Friday to go over all the findings thus far and are praying for a diagnosis so we know what to expect next and where we go from here.
Liam had his eye exam this morning. His eyes look good as does his corneas. His pupils would not dilate but he is on the max dose of phenobarbital and his he is still on Fentanyl so that may be the reason. I believe they are going to schedule a second exam in a week or two.
His sodium levels are low and have continued dropping today. Tonight they are changing up some of his fluid to try to get fluid to his organs instead of in his blood. The low sodium may be the cause of his seizures.
Liam received his PICC line in his leg this afternoon. His umbilical line is still in to draw blood for labs due to the fluid in his blood which is diluting the blood draws from his heel. The umbilical line is ok to stay in until Friday but then due to the risk of infection will need to come out Friday.
Liam’s nurse today was Linda. Linda has been in the NICU for many years and is a wealth of knowledge. I think she will be invaluable to us and Liam in the coming weeks or months. I did ask her of her experience with preemies with a very small airway. She was honest and said she’s seen it several times before and she has seen bad outcomes. It was hard to hear but again it is the prepare for the worst, pray for the best.
Jason bought Liam a giraffe tonight and we took it to his NICU room. Jaffi is currently watching over Liam from the shelf above his isolette. Liam’s nursery at home is sort of a giraffe theme and Jason’s favorite toy as a baby was a giraffe he called Jaffi so we carried that through when decorating for Liam. We also decorated Liam’s door to his NICU room with letters our dear friend Amy stenciled and cut for Liam along with some little monkeys and giraffes.
Pictures coming soon. For now I’m going to get some much needed sleep.
I know this is being shared with many people and Jason and I want to send a big hug to each of you who are sending out positive thoughts or holding Liam and our family in your prayers and praising Him on a daily basis. We feel so blessed to have so many people out there, many we’ve never met supporting us. Words are not enough to really express how we feel and thank you doesn’t seem like enough but THANK YOU!
-Stacey and Jason