Saturday we were told that Josie's breathing problems are the result of her pulmonary hypertension - high blood pressure in the arteries of the lungs. Post surgery, her pulmonary hypertension appeared to be resolved but it has slowly reappeared. The next step is to find the cause of the problem so treatment can be administered.
An echo cardiogram was performed today and we were told that Josie will undergo another cardiac catheterization procedure later this week which will supply many more answers.
The poor kiddo has gone from 1/8 L of oxygen to 1/2 L to 1 L and now she has a feeding tube and a CPAP. Now tell me, would you be looking like this if you were in the same scenario?
In the ER
Oxygen, IV, and a feeding tube
Restrained with a CPAP, feeding tube, and IV
I'd be lying if I said she hasn't had her attitude moments (she yanked her feeding tube right out this afternoon), but all things considered, she's a model patient and we are so proud of her!
We'd like to thank everyone for including Josie in your thoughts and prayers. Your support means so much to our family. We'll do our best to keep you posted!
Oh, poor little sweetie, we will be praying for her and for Mommy and Daddy too! She is such a cutie, even with tubes:)ReplyDelete
I'll be thinking of Josie and your family this week. It's amazing how resilient the little babes are. We, the parents, are the ones who need all the help we can get! :) She'll do great!ReplyDelete
Praying for Josie and both of you too! She does look like an angel of a patient. Bless her hope they figure out her PH soon and are able to get it under control.ReplyDelete
Wow that is one funky cpap! Sounds like you are going through what we just went through. Jax just came home sporting two new PH meds and the vent at night. Dang PH!ReplyDelete
My daughter has resolved PH so I know how scary it can be! Praying for sweet Josie!ReplyDelete
She really looks so sweet. Hate that she is back in the hospital. Praying that you get some answers soon...ReplyDelete
she sure does look happy and radiant given all that is going on with her - hope they can figure out the underlying cause of the pulmonary hypertension!!!! thinking of you and saying prayers for Josie!!!ReplyDelete
Beautiful, beautiful little girl!! Hope you can get answers soon, and that the issue can be resolved.ReplyDelete
What a cheery baby!! We're all cheering for her here and hoping she has a quick recovery.ReplyDelete
Those smiles are infectious! I will pray for Josie and your family as you go through this latest obstacle course. I know she will do amazing because you can't be that adorable and not be a fighter too!ReplyDelete
My mom introduced me to this blog. I, too, grew up with an older sister who has Downs and I have always wondered what it would be like if I had a baby with downs as well. I have a little 8 month old daughter and my sister LOVES her! I love seeing them interact! Great blog!ReplyDelete
I stumbled on this blog a few weeks ago. Don't even remember how. LOLReplyDelete
Just wanted to let you know you have prayers coming your way from TX! Those pics just made me smile and tear up all at the same time. The last post pics were just adorable as well. Best wishes and a speedy recovery for your lil one!
Erica mama to a lil one with Mosaic DS
Prayers and positive energy coming your way... that beautiful little baby girl sure hit the "parent jackpot!"ReplyDelete