(first update is below this one)
I just got back from a busy visit at the hospital. I was able to hold Ellie for a little while. She had a great period of being awake, moving around quite a bit. Here is the latest:
Feeding: Things are not going well with Ellie's feedings. They had been giving her bowlous feedings every three hours, but when they checked her residuals (leftovers), she had not digested it all. Because of this, they have started a continuous drip feed into her feeding tube. The doctors don't think it is anything to worry about for the time being, since she is just 48 hours out of surgery, as well as the fact that she was not using her stomach before surgery. The problem with her not tolerating her feedings is that she needs an IV for nutrition. She has really fragile veins (runs in the family), and it is difficult to get a good IV site. She has an IV in her skull right now :(
Breathing: A little better news on the breathing side of things. They have her on CPAP again. They are already talking about starting to wean her off of the CPAP and onto the humidification collar. So we are excited for things to move forward on that front at least.
We heard a "rumor" (thanks Sherri!) that our doctor is pretty confident that she will not need CPAP at home. We are very hopeful.
We witnessed her second trach change today, this time done by the nurses. It went really smoothly and did not seem to bother Ellie that much. We are confident that we will be able to handle her care.
Occupational Therapy: The therapist made splints for Ellie today. They are on her wrists and feet. They will help with her tendancy to have "wrist drop" and slight clubbing in her feet. She will wear them for a three hour on/three hour off schedule for the time being.
The therapist says that she thinks Ellie has pretty good tone in her arms and legs. She is concerned mostly with her facial muscles. She wants us to try to stimulate her cheek muscles, her tongue, and to try to get her to work on closing her mouth.
I think that is it for today. It was really busy so I will see if Adam remembers anything that I forgot :-)
She looks so beautiful! Is that a double chin? LOL. I love reading updates on her and we think of you all daily.
ReplyDeleteWow, Ellie! Look how far you've come in just a few short weeks! God has really been working in her; looking over the prayers that have already been answered and then some, God's fingerprints are all over this hopeful story of healing and recovery. I continue to be hopeful for Ellie's healing and continue to petition God on her behalf.
ReplyDeleteLove you guys.
ReplyDelete"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." -- Hebrews 4:16
I think of you all everyday and love reading Ellie's updates...you are a wonderful family to share this trying time with all of us...thank you for reminding me of how precious life is. Glad to hear you liked the blanket...she looks great in pink! God Bless you all.
ReplyDeleteGreat. Looking forward to seeing her tomorrow.
ReplyDeleteJust wanted to let you know that we are praying for you. Thanks for all of the updates. It is encouraging to see how God is working in all of this.
ReplyDeleteIm so greatful for the daily update on Ellie...Im so sorry that you have to see your little girl that way. I know you want her free from IV 's. I'll be praying for muscle strenght in her cheeks and mouth. Also, for better results with the feeding tube. Your family is truly loved. You have reached out to so many people showing the love of Christ in your home! Blessings & Healing to you..
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