I know I casually mentioned Ryan was close to coming home in this post. Unfortunately, Ryan had a little set back this week when the team tried to switch his diuretic from IV to PO (by mouth). There is a big difference in the strength of the IV drug so they are having some issues adjusting the PO dose. As of today Ryan was back to all IV diuretic and once he comes back to baseline (he is now up to 3.5 liters of oxygen per minute instead of 1 liter and is satting in the 60s instead of high 70s) they will start to work on converting the meds again.
For now, Ryan is holding tight at the hospital while all this happens. He continues to laugh for us – Tuesday Natalie was tickling his neck and had him rolling on the floor laughing. Okay, not literally, but he was laughing out loud which he rarely does.
After all the comments yesterday, I have a feeling some of you are going to be very disappointed by this and worried about me. I want you to know I am okay. I am old-hat at this and do not believe the team when they tell me he is coming home until he is actually sitting in my car. So, I’ve psyched myself up for sometime now that he would be hospitalized through Thanksgiving and Christmas. I did my grieving at Halloween, remember?
Here is a picture of the boy getting an ECHO on Tuesday. (You’ll have to forgive him for looking so zonked. He had a big day meeting our special visitor and konked out as soon as she left.)
(c) 2016 Leighann Marquiss
Comments (14)
His little face….. says “mommy no more today!”
Poor little guy.
But soon hopefully he will be home for good.
Sorry to hear about the setback– the ups and downs are exhausting. Sounds like you have the right mindset… though I’m sure it isn’t easy.
Let us know if you have any issues setting up home nursing. We ran into a few issues and its difficult “managing” a nurse in the house but can also be very helpful. We’ll be thinking of your family on Christmas.
Leighann,
I’m glad to hear you are okay. I know it’s tough and the crazy ups and downs gets so boring after a while but one day all this will be just a memory and you’ll have your little boy at home with everyone else together! 🙂 Will continue to pray for you all and wish you all a very Merry Christmas! 🙂
Did he have the swallow test done yet? How is the whole po feeding coming along?
Leighann I think about you guys all the time and I hope you all have the merriest Christmas ever! Love you and can’t wait to see your little guy again.- Sarah Bolinger
Just praying for you, he will be home soon.
oh, man. i know every comment i leave is the same – he is so darn cute, whether exhausted or laughing. i was wondering why you had him on the floor with natalie – glad you were just speaking figuratively. i wish i could hold him, i really can’t wait! much love,
amy<><
he’s cute even when he looks so exhausted. Those eyelashes….
Also I like your new family and hobbit pictures… so adorable!
Try to have a wonderful Christmas! He will be home soon! I haven’t been by in a while and was surprised to hear that he was down on oxygen quite a bit. I think the last time I read he was at 13 or 14! So, that’s major progress!
Hugs – Tiffany
Hope you guys are hanging in there. What a beautiful picture of all of you together and what a Christmas present to have you all together!!! That was so cool about Michelle Obama too!!! Have a blessed Christmas day tomorrow 🙂
Love Tom and Jamie
A Merry Christmas to you and your family & little Ryan. I have a good friend that is a nurse and “has to work on Christmas day.” You know, there are angels in the bodies of nurses that take good care of Ryan & these other patients! I love reading your blog. Admist my own trials and troubles I find hope and peace among your words & photos. Peace to you admist the chaos! Love, Liz a blog follower in Winston-Salem
I’m totally smiling about the giggles coming from this little man. What a Christmas gift he gave you with those giggles! He’ll be home before you know it!
*FKA anonymous
Leighann- just wanted to let you know I have not forgotten about you guys, just have been extreemly busy with two sick kids on top of it, you can relate right?!? Sorry to hear about Ryan’s set back we continue to pray for him. Hope you guys have a great Christmas. Love you, A. Luhn
God bless you, Leighanne. Have yourself a merry little CHRISTmas. You and your little guy, Ryan, are quickly becoming my heroes. How little we know of perseverance. Lydia. Hines