She said Ellie is a fat 4.5kg, she is definitely not failure to thrive, she is just small stature. Doc said she has seen many, many PWS kids, and she has never seen a PWS kid like Ellie. I feel sick thinking of what might happen, what else might be going on.
She said, they're trying to decide what to do. They could wait a couple more weeks to see if she grows now that her oxygen levels are good. She doesn't think she will, it is more likely that Ellie will just get chubbier, while not growing, making iv starts and bloodwork all the more complicated. She said they are very worried about Ellie's airway. If she starts on gh, it is possible her airway will get worse, which would result in needing a tracheotomy. Kids with "just" pws never need trachs. If she gets a trach, she will also get a g-tube placed. One intervention leads to another, and another... she said they would be temporary, but temporary here means a year. Oh God... I don't know that I can see my baby go through all this.
Maybe, maybe the gh will just help and all this will be fine. No surgeries, no extra problems. Blah.
Sorry if I'm repeating myself. I'm just trying to keep track of my thoughts.
I really think it would help to have Dr. Miller work with your doctors there (if she isn't already). They told us that Lillian might need a trach when she was in the NICU. We brought her home and started GH and her airway was stronger in no time. I know not every child is different, but some doctors really think they know PWS when in fact they don't know much.
ReplyDeleteI'm so sorry you're going through this roller coaster right now.
That was supposed to say "not every child is the SAME"
ReplyDeleteSleep deprivation is not good for my communication skills. :)
Susie, just wanted to let you know that I read your blog all the time and I'm praying for Ellie and your whole family. She's such a brave and strong little girl, and I know she gets that from her mom. Big Hugs!
ReplyDeleteCatherine from HipMama
Thanks, Sarah :) Our doctors are working with Dr. Miller. She thinks that Ellie's airway will get stronger with the GH, although she agrees with our docs that Ellie needs to be very closely monitored in case the apnea gets worse and her airway is compromised. It's hard, because we can't afford to go to Florida to see her in person. I know our docs haven't seen as many PWS cases as Dr. Miller has, but I have full faith in the team, they're working so well together, which doesn't usually happen. I wish Ellie was the same as the other patients they've seen. We've been in the grey zone since my pregnancy!
ReplyDeleteHi Catherine! Thanks so much for the encouragement and nice words <3