Thursday, October 4, 2012

31 for 21: Health stuff

It's only day 4 of the 31 for 21 challenge and I'm already having a hard time thinking of what to write about. Seriously? I have oh so much I want to say and yet lack the words or more likely the quiet time to myself to be able to think and type it out.    There is a list of potential topics to talk about on the 31 for 21 host's blog, here, so I picked one of those today!

Medical Issues.  For a child with Down syndrome I think Ella has actually been pretty fortunate health wise. I think.  But for a child, at least in my opinion, she has been through way too much.  I look at my son, Hunter, who has to take antibiotics about once maybe twice a year and that is the extent of his health issues (okay that and some weird skin stuff but still,) and sometimes I can't help but think how unfair it is for Ella.  Especially when I am reminded of all of her....stuff.  Ella had eye surgery (her 2nd) a week ago today, and a nurse from the children's hospital called the day before to go over Ella's history with me.  Listening to her rattling off dates of prior surgeries and hospital stays and medical findings made me a little sad.  The nurse at one point said "I see that Ella has Down syndrome," apparently my phone is set really loud because my husband was sitting next to me and could hear her, after my conversation Chris said I should have said "SHE HAS WHAT????" and pretended to be shocked by that information. LOL.

Today at her 1 week post surgery follow up.
Here goes. 

Ella was born at 34 weeks. After birth she failed her hearing test (several times,) was diagnosed with Down syndrome (obviously) and a PDA (patent ductus arteriosus, a small hole in her heart.)

At about 1-2 weeks old, (not sure exactly but it was the day my grandmom flew in from Georgia to meet Ella for the first time.) Ella stops breathing, turns purple and we call an ambulance.  We got her back to normal before they arrived, but talk about taking years off of your life.  We found out that you can not suction Ella's nose after she had eaten (for at least an hour) or her formula would come up and plug her nose. Fun times.

Ella has had 3 sets of ear tubes and currently has none in her ears, the last set one fell out in June and the other the ENT just took out last week because it had started to come out at a weird angle and created a bigger hole in her ear.  So we are waiting to see if that heals up.

She has had 2 ambulance rides, one of them she started having a really hard time breathing (she was about 16 months old,) the ambulance got there and her O2 levels were down so they took her in. After a couple of breathing treatment we were released...croup.  The other ride was from the base clinic to the downtown hospital (in Texas) because she had RSV and pneumonia.  That earned her a couple night stay.

She had to spend a couple of nights in the hospital when we first moved here (about 18 months) for a bowel obstruction, after our drive from Texas to Washington.  Sitting still isn't good for her : )

She aspirated her liquids for awhile and we had to thicken her fluids.  It was discovered when she was 2 1/2 that the whole in her heart was still open (though we had been told it closed when she was 3 months old) and she had surgery to close it.  It was an easy surgery, in the world of heart surgeries, they went in through an artery in her leg put a metal coil in the hole in her heart and 5 hours later Ella literally ran out of the hospital!

She had her tonsils and adenoids removed due to obstructive sleep apnea (that was discovered during one of her surgeries to put in ear tubes.) She rocked that surgery, felt no pain and we went home that day!

She was diagnosed with severely delayed gastric motility after testing to see why the kid spit up so much.

When she was 4 she started having eye problems and started wearing glasses.  In March of 2011 she had her first surgery to correct strabismis (crossing of the eyes.)  After that surgery she wore bifocals.  One week ago she had her 2nd eye surgery for the same thing and also they probed her tear ducts in both eyes. 

At her 5 year well check up her doctor ordered routine blood work.  Her thyroid levels came back way off and 2 days later we were sitting in the endocrinologist's office.  After more blood work Ella was diagnosed with Graves Disease, an autoimmune hyperthyroid disease.  This has been our biggest challenge.  It took 11 months to get her levels perfect.  Those 11 months were hard.  Ella had huge swings in her levels and it effected EVERYTHING about her.  Her moods, her memory, her sleep, her focus, her behavior, her hair (began falling out,) and it big time affected school.  She also had to endure blood draws every 3-4 weeks.  Right now it is controlled and there are even signs that it may be going into remission, which would be awesome!!!

This past December Ella spent 5 days in the hospital due to pneumonia.  She was one sick little girl, it was pretty scary how fast Ella went downhill and even more scary how "normal" she looked despite her O2 levels being too low.

Okay. I think that's it : )  That or I just can't think anymore because the kids are starting to swarm because it's dinner time!!!!  Not a fun post but it is what it is.  Like I said, there are SO many kids with Down syndrome who have had so many more, and worse, medical problems.  I am thankful for Ella's health, I just really wish she didn't have to go through so much!!!  But, Ella is a trooper, she really is.  She goes to all of her appointments without complaining too much and charms all the doctors and nurses she comes into contact with!

Here she is after school today.  She ASKED to have her picture taken on the porch again today. Which is pretty funny because she hates having her pic taken!!!


I was concerned about her eye but the doctor assured me today that this was just inflammation and it will get better.  It's still really gross.

2 comments:

Tami Leitz said...

Love the outfit and her eye looks to much better!!
xoxox Ellla,
Tami and Claire

Kimberly said...

She is beautiful! And such a trooper!
Thanks for stopping by ;)