Thursday, January 17, 2013

So Much Progress & Discharge on Friday

Aubree has been a "rockstar" as the nurses have been calling her since she got to the pulmonary floor. She got completely off of morphine and has switched completely to Tylenol and Motrin for pain for the last few days. Seriously, no narcotics after less than 2 weeks with 16 ribs still fractured? We've got one tough girl and one amazing, healing God!

Physical and occupational therapy have come by and worked with Aubree and said she is making great progress to getting back to where she was post op. One of her biggest issues is regaining her balance and center of gravity. The surgeon gave her a slight bit of scoliosis when he implanted her VEPTR device because it is slightly big for her, but the next smallest size was too small. Better too big than too small since we are tryin to expand her chest so that her lungs can grow as much as possible. So, the scoliosis paired with the 2 ounces of titanium in her back plus 16 fractured ribs changing her physiology, it only makes sense that she kind of has to monitor and adjust from what she knew before. But her progress is great and she is sitting supported very well and sits unsupported for a couple seconds at a time. She is controlling her head and neck great!

Speech came by to watch her eat solids and a bottle to be able to clear her for eating by mouth. She ate baby food and drank a bottle like a champ with no issue of choking, coughing, or potential aspiration. Aubree has been drinking almost all of her bottles by mouth with whatever she doesn't take by mouth going down the gtube. She has also been eating baby food and anything else she can get her hands on! Seriously, she fusses at us if we are eating in front of her and don't give her some food as well. She has tried blueberry muffin, cheddar puff corn, soft pretzel, apple slices, mandarin oranges, and strawberry nutrigrain bar. We are so excited she is wanting to taste and try food and that she is enjoying it so immensely! Aubree probably wishes I would give her bigger bites, but I am terrified of giving her too big of a bite and her choking. So, I just make sure I give her the tiniest morsels possible that even a mouse could not choke on :)

Also, albuterol treatments have been discontinued. Aubree is also only on Cpap during sleep (pressure of 8 with 2 liters o2 on the pixie, 1 liter on the ram cannula) and on 1 liter o2 through nasal cannula when awake. This is just slightly more support than she had before surgery. This is not unexpected because she is still healing from surgery and still has fluid around her lung where the surgery took place. As that fluid is transformed by the body as she heals, her lung will be able to expand more and she will be able to hopefully have gradually less support.

With all of this amazing progress, the plan is for us to be discharged tomorrow! She sat buckled in her carseat for two hours today just to make sure she wasn't in pain or struggled from respiratory standpoint. She passed the carseat study with flying colors, so we are confident she will be able to ride home in her carseat with no adaptations or further padding. We are so thankful to be in a place to take our sweet girl home! She is probably 95% back to her normal self. Please pray for our travels as we make the long trek back home and for Aubree to continue to get stronger. We are praying for an uneventful trip home!

We give all the glory to God for the healing and progress taking place in Aubree. He has sustained Aubree and us throughout this journey, and we continue to trust in Him as we continue on the journey to give Aubree the lung volume she needs to survive and thrive. Thank you all again for standing alongside us in prayer and support. We so appreciate it!

Additionally, please keep remembering the two other Jeunes babies who are a
Here at CHOP. Madden has still been battling some issues that keep him from being extubated. Please pray for him to be successfully extubated soon! Also, Will, who came for outpatient consultations and testing, is inpatient tonight after acting different after some sedation yesterday and a fever tonight. Please pray for him to be on the mend soon. (Sidenote: Madden's mom Mandy, Will's mom Mary, and I got to briefly meet on Monday. So thankful to have these moms who are in similar circumstances as a support system!) Both of these families so desperately want to go home with their babies as soon as safely possible!











4 comments:

  1. Glory to GOD!!!!!!!!!!!!!! How incredible. I know you are so excited to come home. Aubree is such an incredible inspiration. You all are!!!!!!! Will be praying for an uneventful trip home. We truly have an awesome GOD!!!!!!!!!!

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    1. All those prayer to God be the glory, and as Debbie always says God is good!

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  2. What a tough little girl! She is so strong and brave! We are SOOO excited that you are on your way home. Hallelujah and praise the Lord! We'll continue to keep Aubree and you two in prayer during the transition at home, and for the trip.
    Give that little darling a hug and kiss for me!
    Love and blessings to you!
    Lisa Floyd

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