One of the things that brings comfort in her musical aquairum. She had one in the NICU that she just loved os we got her one for home. Aren't the little hospital gowns cute? They are like "big people" gowns (with open backs) but they are so tiny.
As you can see, Faith is just not herself. She is pretty puffy, and still having a difficult time breathing. Even on the vent you can see her retracting. There is evidence that there is something growing in the culture- we will have to wait another day or so for it to be identified. She seems to be doing better today than yesterday, but that is not saying a whole lot! We are adjusting to life from the NICU to the PICU. We felt so at home in the NICU, the PICU is pretty intimidating! No word yet on how long we can expect this hospital stay or what the course of action is. RIght now the goal is the make Faith comfortable, keep her on heavy doses of antibiotics, and well, just keep her alive! Yesterday in the ER Faith's doctor who did her tracheostomy came and did another bronch. He found some tracheomalacia which basically means she has a floppy trachea, which could explain her breathing difficulties, even with a trach. Many kids with this type of problem require long term ventilation. The good news is kids can be on ventilators at home. They can also be on CPAP, which is not as damaging as the vent. Well we are praying it won't come to that, but we just want what's best for Faith. Well thanks again everyone!Brian and Jen
7 comments:
Wow guys what a day y'all have had! It sounds like you are in a terrific place with exceptional doctors. Faith is where she needs to be right now as difficult as it is for you.
We know this has been a "rollercoaster" one after the other but as we all say, "This is another chapter" I pray that Doctors and specialist at this PICU will find what will help her breath and that God sends you a doctor that knows "the how to fix this".
Try to get some rest both of you and Faith is resting her body right now again to gain strength, I believe.
God Bless you and thanks for keeping us informed. God is right there with Fith and I KNOW you guys already know that! :)
We love you and wil continue to pray!
Aunt Susan and Uncle Mike and gang
XO XO XO XO
Just a thought.. Has anyone consulted National Jewish? They are rated #1 in the Nation for respiratory issues.
With love and prayers for all,
Paula
Sounds like that ER Bronch was revealing. The more you know, the more you can work with and try to manage. We pray for your strength and acceptance and for a peaceful resolve to just take one day or hour at a time. You will be able to look back on this one day with a different perspective other than exhaustion and craziness. Right now you guys are are still in stormy waters. We keep you in our thoughts and prayers and check daily. We appreciate you entries. all the best- Aunt Libby, Robert and girls in Miami
Dear Jen and Brian,
God bless Faith! I pray your beautiful daughter is breathing easier today.
I pray for you also, as you must be worried sick about school beginning so soon. I don't know what your plans are so please forgive my ignorance. Let me know how I can help. I wish you both could take a leave until Faith is stable and you have nursing care 24/7. If you are returning, skip the meetings on the 16th and 17th. Meetings are meaningless when Faith needs you. I can set up the art room. Just email me at school what supplies you need and I can get everything organized. I'm meeting with Ruth tomorrow and I'll find out what's going on.
I'm here to help you and I want you to take good care of yourselves. Jen, take as much time as you need. I have you covered. Don't be shy about asking us for ANYTHING. School is the least of your worries and I want to help you.
Love,
Mary Trujillo
Dear Brian & Jen,
We are praying for all of you and we love you. Even though we are all the way in Alabama, Faith is a part of our daily lives. We are praying that Faith's breathing will improve. Thanks for keeping us up-to-date. God bless you all!
We love you guys,
Mary Freeman and Family
We pray that Faith will soon be able to breath on her own and we are thankful that she is where she is because more info is coming out of this hospital stay that can help her!
Also say this today together over Faith ..
"No weapons formed against me shall prosper, greater is He that is in me than he that is in the world, and I can do all things through Christ who strengthens me."
I know you KNOW and Believe this. Praise God through all this because HE has and continues to work miracles and KNOW GOD IS WITH all of you!
It sounds like you are around wonderful doctors who are searching to find the solution that can help Faith breath!
Know we are with you in prayer!
We love you:
Aunt Susan, Uncle Mike, Steve and Michelle
XO XO XO XO
Just checking on my baby!! And checking on my wonderful neice and nephew!!
Just want to tell you we love ya!
Aunt Susan
XO XO XO
Post a Comment