I want to point out a few things before I update.
1. All Childrens Hospital is not our current transplant hospital. Emma is seen by the transplant team in Gainesville. She was transplanted here at ACH 5 years ago, but when we moved to Jacksonville, we transferred her care to G’ville because it was closer. So when we come here, they pretty much start from scratch because they do not follow her care.
2. ICU for Emma is a common thing, because she must be on a monitor at all times while in the hospital. There are 3 ICU floors at ACH- she is in the step down unit. I do not want the perception of the term “ICU” to make you guys think worse of the situation.
Right now, we are just holding. The Transplant Cardiologist is going to come up and evaluate the situation and put a plan in motion.
They are not overly concerned with her BNP (thank goodness, because I was having a heart attack over it). It is just one piece of the picture. The echo is the other half, which they cant get because Emma will not allow them near her at the moment. They have discussed sedating her for an echo, but again she does not do well under anesthesia so the Transplant cardiologist is coming up to make a plan. They did get a few pictures while trying to get her echo, so they are going to look at those and see what they can determine.
They are also re-evaluating the need for a CT for her sinus’. (Per my request). If we can avoid anesthesia, that is what is in her best interest every time. Kids with Mitochondrial disease have a hard time “coming out” of anesthesia and have a higher mortality rate while under. I am going to talk to the Transplant Cardiologist about treating her sinusitis and if it seems to not get better, then possibly doing the CT scan.
I spoke to her transplant team in G’ville this morning, and they are considering a heart cath to evaluate her coronary arteries (due to her bnp numbers). It has been a year since her last cath, so I understand their desire to evaluate. Any time they go near her heart, I am a nervous wreck because it is already so tempermental. I am not sure when they plan on doing this (or making the for sure decision to do it)- but I dont expect it to be before February.
Im feeling better and more at peace about this now- this morning was a nervous wreck. Every one seemed so concerned about her BNP numbers. I believe God is all over her right now and we are going to be just fine ;)
Please continue to pray for her, this is the first time that she really “understands” that she is in the hospital. She is fighting everyone tooth and nail (thats my girl!). She cries anytime someone comes in the room, and keeps telling me “no more bloody- I go home now”. It breaks my heart to see her fearful, and reminds me that her little life is so dependent on things that are out of her control.
Ill update after the Transplant Cardiologist comes to see her. Hopefully he will say “wow she looks great, go home!”
Emma and I can hope, right? :)
God has called us to make the best of it, as peacefully as we can.
Galations 7:15
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Thanks so much for taking the time to update, Heather. I can hear from your post that you are much more peaceful, and that makes me glad. I will continue to pray.
by RebeccaThanks for taking the time to post. I’m thanking God for the peace that you are feeling and will prayer specifically–PEACE over little Emma. God Bless you!
by DianeDiane
Praise God that you are more at peace!!! Continuing to pray!!!
by alisonI will continue to keep Emma in my prayers. God Bless you both.
by HollyWhat they said. :-)
by boomamaHow come all this time it has just hit me you are only about 2+ hours from me??
I am praying for you. And girl some time we are going to have to get together when life slows down (ok don’t laugh at that comment!)
by Laurel Wreath[…] Another update from Heather here. […]
by BooMama » Prayers NeededI am believing they will say go home for Emmas sake. Usually a mothers intuition is right. I hope it is just a sinus infection. Still praying today. Your in my stomping ground Tampa I was raised there and go back every chance I get.
by PaulettePraying for peace, for both of you.
by HeatherI’m new here, found you through Kelli, but you are in my thoughts.
Sounds like you have a very strong little girl. Thank you so much for the update. I’ve been checking back like crazy, hoping to see some good news.
I read that you live in Jacksonville, I’m in Saint Augustine. Almost neighbors!
by AprilStill praying.
by Careybreaks my hear to imagine hearing her say “no more bloody - I go home now”!!! Poor little thing! i am praying she gets to go home REAL soon!
i remember when I was ten and hospitalized for a severe food poisoning (bleeding intestines and all). but they didn’t know if it was food poisoning - i was in isolation and being tested for everything under the sun. they tested my blood like 6 times every day or something insane like that. and every time someone came in my room I panicked and cried. (not like my situation or my tests were ANYTHING compared to Emma - it is just that if at 10 I was that scared of blood tests - how much more terrified precious little Emma must be!!!)
{{{hugs}}} to you both!
by Janice (5 Minutes for Mom)I found you by accident and I am praying God’s will for all of you.
I have been many of the places you are walking because my oldest was born with Mitochondrial Myopathy and developed hypertrophic cardiomyopathy. He had small deficiencies in I and III, but a huge one in IV. We were blessed by his presence and honored to care for him for nearly five and a half years before it was time for him to walk with the Lord.
I’m here to tell you that God is always good - and I do mean ALWAYS.
May He bless you substantially and fill you with peace!
If you want to know more, here’s a bit about us:
by ThoughtfulMomhttp://www.homeschoolblogger.com/ThoughtfulMom/104727/Meet+the+Bookworms.html
And here’s a lot about Danny:
http://www.homeschoolblogger.com/ThoughtfulMom/109626/Praying+for+your+children+%28written+for+a+class+on+prayer%29.html