Saturday, May 26, 2012

Ryla's Hospital Experience


This past weekend with Ryla was one of the more challenging parenting expands we 
have had.  We lived in a world without answers for nearly 24 hours, and to some degree 
we are still there.  A challenge we have had with our little angel is that since the end of 
January she had bee throwing up several times a week.  It seems to have gone in 
waves.  She may have throw up every day for 5 days, then not at all for 3 or 4.   I the 
last 2 weeks her vomiting has become more significant.  We also noticed that she was 
just the whitest little girl you have ever seen.  We attributed this to her red hair and 
thought little more of it.   We have called the doctor a few times about her vomiting, but 
have always been reassured that it is normal for toddlers to throw up when they cough 
excessively, cry for a long time, or just get too wound up.  But as this has drug on we 
decided a phone call to the doc just wasn't enough.  So we scheduled an appointment 
for las Monday to have her seen by her doc.  

LB took her in to for the visit, and to our surprise, the doc was not as concerned about 
the committing as she was about Ryla's skin color. She checker her eyes and gums and 
told LB that Ryla should be tested for anemia.  This required a blood draw to check her 
blood count.  This was the start of our adventure.  The first blood draw attempt involved 
a lot of needle poking but no blood being drawn.  The second visit they tried a finger 
poke, which didn't produce enough blood. At that point we decided to avoid. The Holy 
Family Outpatient Lab at all costs.  So, on the third attempt and second lab we finally had success.  We got a call from the doc saying the results were in and they wanted us to stop by to discuss the results.  We were prepared for a brief education on anemia and to walk out with a RX for iron supplements.  
 
So, LB took Aidan and Ryla.  They were gone far longer than I expected.  I finally got a 
call saing that I needed to come because the doc had some concerns.  The first thing 
the doc said when I got in the room is, "Well, I don't think it's leukemia."  excuse me?  I 
didn't even know that was on the table.  We found out that her red blood cell count was 
about 65% below the bottom of the normal range.  We were tole that they would consult 
with a specialist and be hearing from them within the next couple of hours.  We were 
anxious to say the least.  We had enough time to get home, feed the kids, and lay them 
down for their naps before we heard back from the doc.  The word was to get Ryla to 
the hospital ASAP.  

We sprang into high gear to find someone to watch Aidan so we could head up to the 
hospital.  We hurried as fast as we could to get to the hospital so we could was for 8 
hours before they started doing anything.  Once we got there and we're checked in we 
met with a med student, the hematologist, and a pediatrician. When we first got there 
they talked to us about blood transfusions, genetic disorders, IV iron treatment, and 
lesions in the brain.  The decision was thankfully to go with Iron treatment, assuming 
that her anemia was caused by iron deficiency and not some scary disease.  So, little 
Ryla was given an IV.   Which went well, until they forgot to prepare the tap and IV 
locks.  So I had to hold Ryla in a should lock for 10 minutes so she didn't pull the IV out 
while they got their supplies. Once that was done we waited another 4 hours to get the 
iron treatment started.

So, we got to the doctor's office around 10:30 that morning.  Made it to the hospital by 
1:30.  Had the IV placed by 5:30.  and started her first iron treatment at 9:00.  In the 
midst of all this Noah was with us.  We were placed on the pediatric oncology wing- 
which was a little unsettling.  After the IV was placed Noah unleashed one of his gut 
wrenching coughs. Within 5 minutes we were told that Noah and Aidan were not 
allowed back.  So that meant LB was unable to spend much time oat the hospital with 
us.  After she left, Ryla and I began a 2 day marathon of cuddling that was only 
occasionally interrupted by visits from an occupational therapist to check her gag reflex, 
a dietician to learn about her diet and evaluate her weight gain, and a painful to watch, 2 
hour test to see what happened in her tummy whenever she ate.
  
Our 2 and a half days taught us a lot about what was going on with her little body.  We 
learned that her tummy never recovered from the stomach flu she had in January, which 
was the cause of her vomiting.  This made it hard for her to process and odor nutrients.  
Thankfully this is easily treated by 2 months worth of antibiotics, taken before each meal 
and at bed time.  We also learned that she is most likely allergic to something she eats 
frequently- probably lactose or gluten.  This will require more testing and experimenting 
to determine the real cause.  Whatever it is, it is causing microscopic blood loss in her 
GI track, which led to her low red blood cell count.  This leads to the last thing we 
learned, which is she needs a lot of iron.  So we'll be supplementing that per the next 
few months. She's also supposed to eat as much physically possible and drink as much 
Pediasure as she can stomach to out some weight on her little frame.

So now we are going forward to try to get our little princess as healthy as possible. We 
are hoping and praying that the follow up lab work will confirm what the docs suspect at 
this point.  With som grace, we will see her fiery personality return in the weeks to 
come, along with a little extra chub on her belly- and if we're lucky a few words!     

     




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1 comment:

H said...

So sorry you guys are going through this. Praying for strength and comfort and that she gets stronger and healthier each day!
love you!