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Tuesday, September 15, 2009

Hannah's Song


and these are the days of our lives...

Sometimes my life is so crazy I can't even believe it myself!! It take me back to a therapist I had who said... "Beckie, I think you create your own crisis". Well, all I can say to that is... okay nevermind, I won't say it!

Hannah and I got to Omaha right at 10 am. Got her checked in and prepared for her procedure, the most dramatic part of that was taking her earings out... sorry you were late for lunch, Melissa! During her procedure they came out to tell me that the liver biopsy would not be done at this time due to a (what I thought was maybe a bug bite) on her upper outer thigh. My initial thought was , "you gotta be kidding" but the nurse explained that If it was something infectious it could be in her blood, and they would risk infecting her liver. So they biopsied that! One thing I am learning, When you remain undiagnosed after 7 years of extensive searching, they biopsy everything... even bug bites! and lets not forget the raised eyebrows along with the questions "did you let her outside??" aaaahhh HHEELLOOO!!!!! She is 8! yes, she went out and sat on the porch maybe 2 or 3 times this week. So Sorry for letting her live a little!
I was had a conversation with a dear nurse about the fact on letting Hannah live a little.... It has been such a fine line, and as her Mom, a very horrible decision I have been left to make, and I strongly believe that I am doing what is best for her.
I do my best at keeping her out of populated places, and when we are out she wears her mask and knows her rules of no touching. she has a suitcase of pumps and fluids, so that limits her activity as well, no playground, no slides, no swings... no pools no sprinklers... need I go on??
So here is the Golden Question... do we let her live a happy full 10 years, or do we lock her in this bubble and make her depressed and bitter at life for 30??

well anyway, after her scopes and biopsies of her intestines, she was released shortly after, BTW... Melissa, she was terribly disappointed she had to come home and miss putting new babies out in the playroom!! She was still pretty loopy when she was released and slept all 3 hours on the way home. She has been good, but yet low key since.
G.I. Dr. called from Omaha this morning, seems we have been talking directly about 3x a week latley. He said her potassium was low, we had this problem in June was not happy to hear that 1 again, low potassium cause heart issues. so up we go on the 24 hour TPN concentration which is causing her liver levels to be rising which is why they wanted a liver biopsy... and I think I am getting dizzy!
I can't thank you enough for all the support and prayers, it is what keeps me going... recently heard of someone having to take a vacation to send off over 300 Thankyous due to the recent death of a family member. I'm thinking I have about 3 years or more of thankyou's to send out... vacation sounds good!!

Sunday, September 13, 2009

5 am and can't sleep... good time to update :)

woke up this morning feeling sick, came downstairs cause I didn't want to wake anybody up with my puking.... come out of the bathroom and there stands Hannah... her tummy hurts too. she dragged her ladybug bag of pumps down the stairs... sorry neighbors.... oh wait, my stupid neighbors kept me awake till 2 am hanging out under my bedroom window AKA our front porch... so sorry? hhmmmm, not so much!

OK... venting over, let me go get my coffee and glasses and we will get on with this updating thing! :)

Okie Dokie, well, my Bronchitis got better, slowly.

School began, routines been adapted too.

Hannah has been to ER in Omaha twice this month.
1st time because her J-button cracked, overnight,but no surgery, but an awake procedure... they gave her pain medicine and verset ... which made her stutter for 3 hours after the procedure... kinda creepy!
2nd time because there was a pinhole in her central line. no surgery. The surgeon RESIDENT that was repairing her line asked her if she stuck a pin through it... she looked at him like he was nuts and asked "why would I do that?" Hannah is very aware of the fact that when her line is down she spends the night on IV fluids with potassium and dextrose (which burns like crazy going in).
If Hannah is not talking much people have the 1st impression that she is 3 or 4 years old. She is sooo 8, and very intelligent. She is also very sarcastic... hehehe, I have no idea where she gets that!
She still has 2 pumps running 24 hours a day... which explains my lack of sleep, if it isn't 1 beeping it's another, most usually because she rolled over and pinched her tubing. oh and then there is a third... but that is only 1x a week for about and hour. That is her new Vivaglobin. the first and only sub Q infusion. and I believe that she is the 1st around here to receive it.
Monday she is having surgery. Upper and lower scopes and biopsy's, the are also going to do a liver biopsy because her levels are still running high. this biopsy comes with more complications then the scopes so they will be keeping her at least overnight.
Britt's root canals had to be reschedule due to Hannah's surgery, so the dentist has her on call for that... crazy!! I need 4 of me, 1 for each kid!
Ash and Anthony are doing good, they love school so life is good right now! Hannah has a teacher coming out 2x a week. really looking forward to that, she has an amazing mind, it's fun to see it in action!
Well it is after 6 already... got to go start getting things prepared for Hannah, she is going to be running pedialyte through her pump today in preparation for surg, tomorrow.

Love,Blessings & Barefeet, Beckie