Lillian saw her Pulmonary specialist today in KY. It was a good visit. He thought she sounded great, which is exactly what the mother of a CLD (chronic lung disease) child likes to hear. There's always a but you know, though. As if getting and having a trach for three years isn't enough....and having surgeries that must be done to live a "normal" life are never ending. She again, will have to have surgery to close her stoma. The stoma is the opening where her trach used to be. It has never closed and will have to be closed surgically. While I know this is a very minor surgery, she will still have to be put out to have it done. Into the operating room again. I'm not complaining....really, it probably sounds like I am, but really I know it is not that big a thing, I just HATE my baby going under anesthetic again...it also scares me a bit. I know she is breathing and capable of breathing without the hole there...it's been tested.....it is just a bit scary to know that our little "extra" breathing room will soon be gone. I told Matt when I got home that it sometimes always seems to be something else, then I changed it to, no, it is ALWAYS something. Ok, maybe I am complaining...
On other fronts, eating and speaking are just not coming along as I thought they would....still nada for eating/swallowing. Our speech path strikes me as discouraged, but perhaps I'm reading her wrong. Oh well. Just another day in Holland.
Hello! OK, forgive my ignorance, but could eating and speaking possibly be easier for Lillian once her stoma is closed? Or does it really have nothing to do with it?
ReplyDeleteAnd sorry but your speech path, should not be showing signs of discouragement!!!
other than that it's good to hear from you. And no, BTW, you're not complaining and so what if you were. You have the right to.
Lillian been through enough to last a million life times.
Hugs and prayers!
I was JUST crying about this today. It just never ends and it never seems to get any easier for my darling. There is always something brewing or some new issue to deal with or some new hurdle to concur. And it's getting old. And then I stop and think that it'll probably always be like this, even when (God willing) she's 25, we'll still have issues and hurdles and challenges. And that thought? Exhausts me to the core.
ReplyDeleteYou know I'm not one to recommend lightly, but we've actually had good luck with Riley feeding specialist/SLP. She's not warm and fuzzy and she doesn't talk much to Addison, but she has helped open my eyes to some of my thinking and see how I can help Addison improve. I'm not sure you can get in without a dev peds referral, but let me know if you want her info.
Hang in there. Some days by the skin of your teeth. One day at a time, sister.
I meant conquer. So there.
ReplyDeleteOne of the things I am most nervous of when thinking about Marissa being decanned is the future possible need for surgeries. Intubating a kid with an airway history like ours (then add on top of it that Rissa's will be reconstructed) ups the pucker factor by at least a hundred, in my opinion.
ReplyDeleteIt IS always something with these kiddos. Their medical needs will continue with them for life. I know it is easy for me to forget that about Rissa sometimes when things are going along status quo.
Glad to hear about her lungs though. That is truly something to praise the Lord about!
As a therapist, sometimes you go for months and feel like you are getting nowhere...and then POW! it all comes at once. Lillian is that kind of kid - and she will get it. I know she will :D
ReplyDeleteThis is Shelley.....forgot that part...I think it is going to be that kind of day today.....
ReplyDeleteThanks so much for the heads up about your blog!! Beautiful!!! And thanks for the update today. Blessings on the good news and God's grace to wait for more. I was sooo blessed by your poetry. I will purpose to pray for little one's speach and swallowing each time I feed Cora; it helps me to connect prayer to something routine daily. I like what someone said above about things all coming at once. That's been my experience with all kinds of learning for little guys. Nothing, nothing, nothing... then the light suddenly comes on. It's often frustrating for the learner only when the teacher is frustrated; so I have to remember to take LOTS of deep breaths for the little ones sake...
ReplyDeleteHOPE is a precious gift and a deep well of solace while waiting... LOVE YA!! Brenda