In February, Tex accepted a new job and we will be moving from West Texas to East Texas!
We drove to East Texas for the interview. After we came home, Carousel sent us to the hospital, (in Dallas!), two weeks in a row, (more info in a minute). After arriving home, we had to go house hunting, so back to East Texas. There we got word that Tex's grandmother had passed away, so we headed back west and after spending a day at home, we returned to Dallas again. This was all in a month's time, y'all!
We got home from Dallas yesterday, and the movers come Monday. Aren't you exhausted just reading that?! ;)
We found a house we really like and we hope we get it! For the next few weeks until Tex starts (for pay roll reasons he got a few weeks off- hey, we aren't complaining!), ;) we will be visiting family and friends, staying with them while we are "homeless." And while that is very exciting and sure to be a blast, it also means many more miles on my car! Hopefully I'll remember to take note of how many miles we add and I will keep y'all posted. ;)
My poor blog has been so neglected and I hope to get back into the swing of it in April after we settle. Besides the move and Carousel's health, my health keeps me from wanting to blog. I have MONTHS worth of posts waiting in the wings! Once I get back to blogging, you won't be disappointed! (and if you are wondering, I think I am finally getting to the bottom of my health issues! Once Tex starts work, I will go to a Dr in our new town and hopefully will figure it all out!).
Carousel's health...
In mid February we took her to the er for vomiting (no other symptoms). (She has hydrocephalus and an arachnoid cyst that has required 5 brain surgeries itself).
She showed no symptoms other than vomiting (no other head symptoms AND no symptoms to indicate virus, infection etc), and all of her scans looked "better than ever." She was positive for a UTI, and since everything else was good they assumed the vomiting was caused by the UTI. The ONLY symptom she was showing was vomiting- no other symptoms of a UTI. They said if she didn't test positive for the UTI they would have assumed it was her head. I didn't feel comfortable leaving- I just didn't feel that was a proper diagnosis. BUT, it is hard to argue with CT scans, X-rays and neurosurgeons- everything looked great and I didn't have enough ammo to argue. (I have found out from other SB mommies that vomiting is a normal symptom to UTIs, but that has never occurred with Carousel. I still do not believe that is what caused her vomiting at that time).
A week later we were back for vomiting. The UTI was gone and she was still showing no symptoms other than vomiting. The only change? Her ventricles very "slightly" enlarged but not enough to cause action. (Shunts functioning perfectly). I knew something was wrong- I was actually relieved to hear her ventricles were bigger. I still didn't feel great leaving, but I still didn't have enough ammo to fight.
That was about 2 weeks ago...
The last few days she has been fussier than usual, and today she put herself back to sleep after getting up at 10 am after a full 11 hours of sleep.
I am NOT convinced that there is not something going on in her head. But as I have already repeated multiple times, I do not have enough ammo to fight.
I am sick of the drs saying that she is stable, and yet she is vomiting for no reason. hmmm...
I am sick of the drs saying that she usually shows she needs surgery a certain way, and since this is different she is fine.
Really?
Well her last surgery was September 2012. She was 3 months shy of 3 and now she is 3 months past 4... don't you think it is possible she'd act differently since she is so much older?
ALSO, she has had 5 surgeries with me. Her first 3, surgeries (2011) the symptoms she showed were random crying and lethargy.
For the next 2 surgeries (2012), her ONLY symptom was sleeping ALL DAY, but once she was up she was not the least bit lethargic. We took her to the ER twice in 2 weeks (from West Texas to Dallas) only to be turned away because "everything is stable and sleeping all day with no other symptoms is not usually a symptom. Also this is not how she showed she needed surgery last time." After being turned away the second time, we went to the hospital's main campus and I put my foot down. Finally she was seen by neurosurgery and though she was stable he wanted to act.
Hmmm...starting to sound familiar? Is that not EXACTLY what is happening now?! Stable, but showing a random, persistent symptom, so they finally choose to act even though it is not by the book.
I am beyond frustrated. In both visits last month, we were seen by neurosurgeons, but not HER neurosurgeon. You know, the one who knows her best. The one who decided to act even though everyone said she was fine- and because of that action, her cyst has gone from the size of a grapefruit to the size of a golf ball AND she has not needed surgery in 1.5 years! The one who I trust with my daughter's life. Yeah, that one. He has not seen her yet.
I know she is safe. I know what to do if she shows symptoms. BUT it is frustrating to take her TWICE to the ER- get scanned, IVs, etc and then have to return at a later date to do it all again and then get surgery. Why couldn't we have done it THEN? Not to mention we are moving! ugh. I am going to be ticked if we return soon for surgery. If we go another year or whatever, then fine, they were right to wait. But if it is soon, I will be mad and will complain to our beloved neuro. And I will start to become that mom who fights pretty much everything!
You will rarely hear me complain about being a Spina Bifida mom. Really, even in the hospital, I am pleasant and just thankful to be her mommy. BUT when you know something is wrong WITH HER BRAIN, but it is not "wrong enough to act", and you just have to wait and watch- it is emotionally exhausting and super stressful.
Prayers for her symptoms to increase if she needs surgery or for them to disappear if she doesn't would be greatly appreciated! And if she does need surgery, that we wouldn't have to take her in until this Wednesday, you know, after we move!
That was about 2 weeks ago...
The last few days she has been fussier than usual, and today she put herself back to sleep after getting up at 10 am after a full 11 hours of sleep.
I am NOT convinced that there is not something going on in her head. But as I have already repeated multiple times, I do not have enough ammo to fight.
I am sick of the drs saying that she is stable, and yet she is vomiting for no reason. hmmm...
I am sick of the drs saying that she usually shows she needs surgery a certain way, and since this is different she is fine.
Really?
Well her last surgery was September 2012. She was 3 months shy of 3 and now she is 3 months past 4... don't you think it is possible she'd act differently since she is so much older?
ALSO, she has had 5 surgeries with me. Her first 3, surgeries (2011) the symptoms she showed were random crying and lethargy.
For the next 2 surgeries (2012), her ONLY symptom was sleeping ALL DAY, but once she was up she was not the least bit lethargic. We took her to the ER twice in 2 weeks (from West Texas to Dallas) only to be turned away because "everything is stable and sleeping all day with no other symptoms is not usually a symptom. Also this is not how she showed she needed surgery last time." After being turned away the second time, we went to the hospital's main campus and I put my foot down. Finally she was seen by neurosurgery and though she was stable he wanted to act.
Hmmm...starting to sound familiar? Is that not EXACTLY what is happening now?! Stable, but showing a random, persistent symptom, so they finally choose to act even though it is not by the book.
I am beyond frustrated. In both visits last month, we were seen by neurosurgeons, but not HER neurosurgeon. You know, the one who knows her best. The one who decided to act even though everyone said she was fine- and because of that action, her cyst has gone from the size of a grapefruit to the size of a golf ball AND she has not needed surgery in 1.5 years! The one who I trust with my daughter's life. Yeah, that one. He has not seen her yet.
I know she is safe. I know what to do if she shows symptoms. BUT it is frustrating to take her TWICE to the ER- get scanned, IVs, etc and then have to return at a later date to do it all again and then get surgery. Why couldn't we have done it THEN? Not to mention we are moving! ugh. I am going to be ticked if we return soon for surgery. If we go another year or whatever, then fine, they were right to wait. But if it is soon, I will be mad and will complain to our beloved neuro. And I will start to become that mom who fights pretty much everything!
You will rarely hear me complain about being a Spina Bifida mom. Really, even in the hospital, I am pleasant and just thankful to be her mommy. BUT when you know something is wrong WITH HER BRAIN, but it is not "wrong enough to act", and you just have to wait and watch- it is emotionally exhausting and super stressful.
Prayers for her symptoms to increase if she needs surgery or for them to disappear if she doesn't would be greatly appreciated! And if she does need surgery, that we wouldn't have to take her in until this Wednesday, you know, after we move!
I'm praying! May God reveal answers soon and may He supply you with much peace in the meantime.
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