Five
There are officially FIVE teams on the case to crack the mystery of Aria’s headaches.  They are  Transplant (obviously) Renal, Neutro, ENT and Pulmonary.  Phew!
It makes for a VERY busy day. Â All five teams round. Â And the resident visits and then come back with their attending. Â Lots of questions. Â Questions right back to the beginning ‘ did you have a health pregnancy’ ‘was she born at term’ ‘any family history of XYZ’
Various tests ordered. Â The biggest being an upper airway scope tomorrow night at 5pm. Â Funny time but that was the only time the ENT doc was available and he squeezed Aria in. Â Thankfully, everyone was telling us how good he was today. Â I think they have imported him from Omaha Childrens to see Aria hence the travel and funny time.
Renal ordered at ultrasound of her kidneys and surrounding blood flow to them and everything came up roses so that is great. Â They spent about an hour in here and Aria did really well. Â Given that she has four kidneys it takes some time to look at them all! Â So the high BP isn’t being caused by a lack of blood flow to the kidneys.
Transplant rounded this morning and they were pained, as were we, to see the very tired and head bobbing Aria. Â She was falling asleep sitting up swaying back and forth but would refuse to lie back. Â Actually it could be comical but it was really quite troubling to watch. Â This desperately tired little girl unable to find rest. Â The surgeon was very empathic and said ‘oh Anita this isn’t good’ Â She even tried to get Aria to fall asleep by positioning Green Dolly for her but Aria couldn’t rest.
It was decided to put Aria on the Hi Flow o2 and finally this worked! Â Aria even said ‘that machine made me feel better’ . Â They did a blood gas before they popped on her it and it came back not good. Â Her Co2 was high. Â But 45 mins on the hi Flow and a repeat blood gas came back perfect.
So maybe the Hi Flow will help her sleep better. Â And hopefully the change in BP medication will keep the headaches at bay. Â Still on the cards in scarring in Aria’s airway from where the trach was and this will be confirmed or not at the scope tomorrow. Â This could be another reason why she can’t rest back.
Waiting for answers, waiting for improvement!
Thankfully we aren’t to fussed about Christmas. Â Well we are trying to be rational about it. Â Thankfully our kids are young enough that they haven’t figured out days and weeks yet so we can celebrate anytime 🙂 Â Perhaps we might get out in time but if we don’t that’s ok too.
14 Responses to “Five”
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# 21 Dec at 6:30 pm
Hi,
With the high BP and bad headaches, have they tested for haemachromatosis, where the body retains iron. I know that tests are not routinely done for this.
Susan
# 21 Dec at 9:44 pm
Well it looks like Aria has the whole hospital working on a solution! We continue to pray that God would make the solution clear.
Blessings in Christ
The Bracefields
# 21 Dec at 9:59 pm
praying that Aria will get the rest and sleep she deserves and that the headaches will be cured. Then everyone can have a rest. God is on the case always!!!
# 21 Dec at 10:05 pm
Prayers and thoughts with you all xx
# 21 Dec at 10:06 pm
Praying for you guys. I told Lyla that Aria had a headache and she said “oh, that sucks man.” I agree. We will be thinking of you and please let us know if you need anything… anytime. Lindsey & Lyla (:
# 21 Dec at 10:54 pm
Aria is one popular little girl. 🙂 She has so many people that want her to feel better; doctors & ordinary people like you & me. Praying that all the doctors will communicate everything going on, with each doctor & with you! Hoping the Hi Flow o2 will continue to help her, & that her BP medicine will continue to help as well! I know God is taking amazing care of her. 🙂 God Bless!
# 22 Dec at 1:20 am
Praying for an answer to the problem. You are one AWESOME family – just think Anita & Hamish what a testimony you will have!! xx
# 22 Dec at 2:33 am
Princess Aria-you dear brave little girl-so many people praying for your recovery sweetie-whenever we read your emails we remember how precious life is, and all material things seem to fade into the background – thanks for keeping us all in the loop-God bless you all mightliy x x xjeannie
# 22 Dec at 3:39 am
Oh gosh – when all this is over and all is well you and Hamish could have a new career as doctors, or surgeons, or hospital management specialists. God bless you for your sense of humour and your ongoing inspiration to us all. A blessed Christmas to you dear Anita – wherever you spend it.
# 22 Dec at 5:29 am
PRAISE THE LORD WITH YOU ANITA AND HAMISH, ARIA’S HEADACHES AND SO FORTH ARE BEING WORKED ON – TREMENDOUS SUPPORT FROM ALL MEDICALS THERE – WOW YOU ARE SO SPECIAL ARIA – OF COURSE WE KNEW THAT FROM THE BEGINNING – HAVE SUCH A WONDERFUL CELEBRATION OF CHRISTMAS WHENEVER YOU CAN – GOD BLESS YOU ARIA, ANITA, HAMISH AND ASHE, SPRIRITUAL, EMOTIONAL, RESTFUL, AND PEACEFUL, PHYSICAL AND MATERIAL, ABUNDANTLY JOYFUL – THANK YOU JESUS AMEN!!!!!!!
# 22 Dec at 8:12 am
Sending you lots of love and hugs and . . . yes Christmas isn’t a date on the calendar! That is difficult to get your head round when surrounded by comercialism but you’ve got there! Congratulations! We are so proud of you two, I mean you four!
# 22 Dec at 8:30 am
“All I want for Christmas” is for Aria to feel better and find solutions to the problem.This is my prayer and I am positive God will hear our prayers.What a wonderful medical team you must have.
# 22 Dec at 2:00 pm
CO2 headaches are the worst – like a bad migraine but all over the head. Poor Aria! We will be praying that the drop in CO2 levels with hiflow O2 will not only improve the headaches, but also the high BP, and that the team will get to the bottom of the CO2 problem
# 22 Dec at 3:52 pm
WE ARE PRAYING THAT ARIA’S HEADAHCE WILL GO AWAY AND SHE WILL BE ABLE TO SLEEP SHE IS A GIFT AND MIRICHAL OF GOD!!! WE WISH YOU ALL THE BEST FOR CHIRSTMAS AND WE KNOW THAT GOD WILL BE WITH YOU !