Room Air!!!

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I apologize for my delayed update…I honestly don’t know quite what happened- I guess I got busy!  But I do have many praises to report! Poppy was discharged the Tuesday after Easter, and came home on oxygen.  We actually received excellent care at Benefis in Great Falls! It is truly a comfort to know that quality of care is so close to us- thank you Jesus for the great doctors, nurses, and staff who cared for us.  Even though her care at Benefis was wonderful, it was so nice to be home together again as a family. Hospitalizations are just hard on the family in general, so we feel very blessed to be able to be home all together 🙂

Since coming home, Poppy has been able to gradually wean off of her oxygen! She has been on room air now for about 4 days! Even while she’s sleeping, her oxygen saturations have been sufficient!! Hallelujah! Praise the Lord! Coming home with Poppy on oxygen really put things into perspective.  Poppy already has extra ‘effects’ as Brad and I call them, or accessories, if you will. She has her feeding pump, her med kit, feeding tube supplies in case she pulls her tube..etc..but adding oxygen and a pulse ox (tells us where her oxygen saturations are so that we can adjust her O2 accordingly to insure she is getting the proper amount)!! I mean, I definitely have a new found respect for parents who have kids on oxygen support!! I can’t even communicate just how liberating it is to have her shed these 2 accessories!! 😉

In addition, she is really recovering well from the RSV.  With her being immune-compromised, RSV can be really very dangerous. The doctors were fairly surprised at how well she’s looked through it all. Thank you Jesus for those Synagis shots!! They really seamed to buffer the RSV. The doctors did say that she will hang on to the cough for 6-8 weeks and that she could catch something else on top of it!! Praying she is able to fully recover before something like that happens!

Since being home, Poppy has decided to start swallowing her food! She is doing a great job with her sippy cup and is loving her food squeezed into her mouth! Who would have thought? 😉 Thank you Lord for this major improvement! I am hopeful her intake will increase, so that she will be able to be referred for an intensive tube weaning program that Seattle Children’s offers, so that we could shed even more of her effects!! I know she still has a long way to go, but God’s timing is what we’re on, and He can do anything!!! 😉 Soo incredibly hopeful 🙂 This momma needed this! 😉 Praying for patience and grace in the days ahead.

Tomorrow we head to Seattle. Poppy has routine cardiac transplant check ups, as well as an EEG to check for seizure activity- depending on the results, she may get to start tapering her anti seizure med, and probably the highlight of the trip, her eye surgery! Her eye surgery will be on Wednesday and is for her Esotropia (crossing). The surgery will straighten her eyes, but the real hope is that it will restore some depth perception! We are praying fervently for her depth perception to be restored, because depth perception could only enhance her developmental opportunities!! Thank you all for keeping our darling girl as well as our family in your prayers! We can definitely feel it ❤ God is sooo good!! 🙂

 

11 thoughts on “Room Air!!!

  1. thank you so much for the update!! will keep praying for our Poppy! and for strength for your family. your faith is just amazing!!!!!!!!!!!!!!! Praise the Lord!!!!!!!!!!!!

  2. What a precious family. Adding my prayers for wisdom for the doctors, a speedy recovery for little Poppy, and strength for mama and dad.

  3. It was sooooo great to see you guys! i couldn’t believe it haha i was like whyyyy do they look familiar, then i hear someone say hows poppy? and i was like wait i just saw them on tv thats why!

  4. Hello beautiful little family. We were just introduced to you a month ago when my mom-in-law saw the special on Poppy’s start to life and told us we should watch it. We live in Lincoln and our 4 year old son’s heart doctor is Dr. Hardy. We are heading to Seattle in August to go for his heart surgery to have holes and a cleft repaired. Isaiah was born with a cleft lip, Down syndrome, holes in his heart and his aortic valve starting shutting down when he was three days old. We were life-flighted to the Children’s Hospital in Salt Lake City but with many prayers, he miraculously didn’t require surgery at that time. We are a home-school family with five kids. From the day he was born, May 19, 2009, our lives were forever changed. From the outside it looked as if we were facing only devastation. Of course, we faced much heart-break. But in time, we realized that our lives were changed so much more for the better. Our faith is deeper, our love is truer and we have more purpose than we could have ever dreamed. By the time Isaiah reached two, he was no longer our child who was constantly in and out of the hospital due to respiratory issues, he was no longer our child with down syndrome, tongue out or eyes crossed. He was wholly and truly just our son. He has own strengths and weaknesses but I don’t compare him much any more. We still have moments of great fear and anxiety but Christ just keeps drawing us closer, just as he is your family. Thank you for sharing your story. We will keep your family and Poppy in our prayers. Feel free to contact us anytime.
    Tiana, Jason, Malakhi, Akaiah, Elijah, Isaiah and Zuzu

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