Just to let everyone know it is still boring around here. For all out there who are not frequent readers, boring in my life is incredible. When I say boring in this sense I mean that nothing eventful is happening with Annabel. We are staying in, resting, playing and eating to put on the much needed pounds she has lost over the last few months.
I will post just a quick thought here. Remember this is only a thought, not educated or medically based at all. Since we have been home Annabel has not needed any oxygen or her bi-pap at all. I have hooked her to the pulse ox machine for most nights. She is having no desats in her levels. We noticed in the hospital she was not needed the machine and I attributted this to the fact that she wasn't sleeping soundly with all the noises from PCU. Since we have returned home she is sleeping 11-12 hours nightly, not waking unless her diaper is wet. (Oh, how I love wet diapers) She only makes a small squeak and I run to change her so she really never wakes fully. Here is the uneducated, not medically based thought. Could Annabel have been so full of gas that this was pressing on her lungs, that was compromising her airflow or how much her lungs could have expanded. We have to remember her diagnosis was way too much bowel that just stayed full of air and lots of food that couldn't move through it.
On a couple ER visits the doctor commented on that she was so full of gas that her lungs could not fully expand. I had mentioned this to pulmonary and GI but it was always shot down with a no way! If you could see the size of her flat little belly now, it might make more sense. So for whatever the reason, I am so very grateful and thankful that the surgery has done well on her gut and that if this is contributing in anyway to her not needing oxygen or her bi-pap machine I am so happy.
If this pattern continues I will do research and see if anyone else has experienced this. It is a shame to place a child on bi-pap if it would not truly be needed. I guess a great measure would be to have a sleep study done again but since we can't get the follow up until Aug 26th, I guess we will just wait. I will try to follow up with some pictures today.
Disclaimer: Please don't base my intelligence totally on this post. While being so bored my mind thinks way too much about why some things are happening or not happening. She I told you I was bored!!!!
10 comments:
yes, I would agree that boring is wonderful!! So very happy to hear that Annabel is doing much better. You had asked about the formula Bri's takes. It is called Bright Beginnings. Looking forward to seeing you all next month.
Hi Cathy!
Your hypothesis sure sounds reality based to me! If her diaphragm was being pressed it would also cause her pain as well as not being able to expand her lungs. It is referred pain since the diaphragm does not have pain recepticles.
For those of us who have had air from surgery irritate it we know that it feels like a knife in your back!
Or it could be a miracle that God has bestowed and either way I praise Him for sweet Annabel's new found comfort and your boring life!!!
Praying for continued improvement in all areas and thanking Him also for those wonderful wet diapers!
Love you girls. Have a great weekend!
Dear Cathy,
There is no road map for T18- you and Annabel, by sharing your brave journey, are helping create a lifeline! Your observations, experence and thoughts are priceless.
Now order in some pizza, pull some cookie dough out of the fridge, and have yourself a much deserved, wet diaper changing, no bi-pap PARTAY!!!!!!!
Love,
Lisa
Yay for boring!!! I'm so happy to hear that she is doing so well! What a blessing!
And, your theory sounds logical to me! Plus, maybe she was in pain and not breathing to the best of her ability? Whatever the reason.....YAHOO! HUGS!!!
ya know us momma's have that god given intuition and I think you may be on the right path! I think we know more than the doc's sometimes, I think they know it and because they don't come up with it first, they shoot it down! Makes since to me!!!!
Horaay for boring! Love it and we would understand it!
Glad your board!
(((HUGS)))
She's your kid - if you reckon her bowel was preventing her lungs expanding to their fullest, then it probably was. Mum - or "Mom", as you would call it - always knows!
So glad life is boring - boring is good! But please, do update every couple of days or so, even if you haven't much to say, as we worry about our little girl when you don't post!
I am so thankful that you are so darned bored Cathy:) I truly believe that Annabel is healing and just hearing that she is sleeping so many great hours is so good. She must feel good catching up on sound sleep at home. It is all good and there is nothing wrong with letting your mind and heart hope for the very best. You both deserve it my sweet friend. I love you and will keep praying.
Love and Hugs, Laurie
I love boring! I think your thought sounds feasible, definately! I am thrilled that she is doing so well with no bipap!
I will check back later for the new pictures. :)
Just checking in on you girls.
Praying that you are seeing improvements each day! Hope you are both getting caught up on your sleep and just being at home.
So, glad that things are boring around your way! Your mompoyhesis doesn't seem far fetched. Time will tell, it's good to have a base line and to see what happens from here. That's my guess..hugs to sweet Annabel
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