Well folks we couldn't be happier thus far with Bella's recovery from this surgery...She has remained incredibly stable to date. We were hoping that we would be able to turn off her paralyzation medicine today however the surgeon has requested her to be fully sedated and stationary for one more day. Hopefully tomorrow we can see her eyes! I sure do miss them...
I wanted to take the time to update everyone as to where we are now in our journey and what else we need to obtain as far as we know to go home. We have had all of the surgeries that we need to be able to manage her care at home! That in itself feels like a huge accomplishment and blessing!
The next goal will be to wean her off all of her nitric oxide for the pulmonary hypertension. This process is slow going and could take a minimum of 4-6 weeks to get her off. The plan now is to start at the end of next week. Also we will begin in the next few days to wean her off of the morphine drip. This took us 2 weeks last time, we are praying for a quicker process this time. She will remain on her usual doses of methadone and adivan for now but will need to eventually wean her off of both of these before she can come home. These are used for pain & stress management, she has been on both for such a long time it could take months to get her off.
We will also need to start pushing her to come down on her vent settings to switch to home vent settings. We have quite a bit of work to do here as she is on a rate of 50 and needs to be on 25. We are hopeful that we will see some improvements in her lungs after the nissen surgery. If she has been chronically aspirating (which I really think she has) then she should show some improvements post op and the vent settings should start to come down. There is no idea of a timeline on this one, we should know more as she recovers from the surgery and we see what direction she goes. We imagine it could take several more months.
We have much to keep us busy here in the NICU once Bella is recovered and awake. We will be aggressively working with her on daily activities, exercises and therapy to assist with developmental issues. We will continue to try to balance out more positive touch from us and visitors versus negative touch from medical care. We are pretty far behind developmentally but I feel that is to be expected from a baby that has had to spend most of her life with a tube down her throat and for the most part immobile. We will be doing an MRI in the next month or so to look at brain function. As her Mother I am not going to listen to what she may or may not be able to do from the medical professionals, there are too many stories of children that will never see, never talk, never walk, never sit up and many end up doing those things but in their own time...We will find out for ourselves in time what her limitations may be and we will accept them as they come.
We are preparing ourselves for the last leg of this race (we hope!) which will be much like the beginning of the journey with MUCH needed time here at the hospital and little time for life outside of it. However we approach this time giving thanks every step of the way that we are all still here and we may have the chance soon to have our entire family under one roof. We just know that God will bless us with the knowledge, energy and resources to get us to where we need to be.
We will keep you updated as our sleeping beauty arises!
Much love to all
Telisha
You have learned to live one day at a time. That is something that most of us never really do. This is a day that the Lord has made. I will rejoice and be glad in it. What a blessing that we are all here to witness this time with you and see the many miracles that Bella has brought. Much love to you all. Lee Ann
ReplyDeleteMuch Joy in our hearts for the recovery of Bella. As I had said many months ago this journey is a pathway with many ups and down, many hills to climb , many twist and turns. We pray this pathway has begun it's long stretch home home now with the sun shining brighter, the hint of the rainbow within sight and the forever warming love of the Lord to lead you all home. Bella came into this world a little angel with her wings folded behind her. We have watch over the months that have past thus far as her wings have began to unfurl to their full glory. And we have witness her family as their wings have grown tremendously . Now you all will walk this pathway with a new adventure and an enlighten goal in sight . With the promise of God being there, holding you, giving you comfort and love and rejoicing when he welcomes you home with Bella. Oh what a day of joy that will be. And it will be .. So our prayers continue for Bella and her entire family as the next few months unfold for us to witness the many many miracles yet to come. She is his angel solider. She began her battle at a very early stage in life and she has won many wars. She will come out of this an extremely strong winner and we shall all rejoice at the victory. God Bless you all and all who have a hand in this miraculous event taking place before our eyes. God Bless the little children. Much hugs, love and prayers to all
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