I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, May 9, 2016

Hospital Update

Two weeks ago Alex wound up in the hospital.  She was so lethargic, her coloring wasn't good, she wasn't urinating enough, she had lost more weight, she was having a lot of seizures and we were pretty sure her cecostomy tube wasn't working.  I have to say this is the first time I've ever been that scared and worried about her.

This is how she was by the time we got to the Emergency Room.


Seeing her so listless was really hard. 

After a lot of testing, chest and stomach x-rays, a dye x-ray of her cecostomy tube and ultrasound of her kidney and liver we still have no real definitive answer for what was going on.

We do know is that her tube was a little backed up.  The doctors were more concerned with her seizures and weight loss so focus was placed on nutrition and seizure management while we waited on some of the labs to come back.  One of the initial concerns was Alex was malabsorbing and that would explain the weight loss and increase in seizures - if her body wasn't absorbing nutrients, it would also mean her body wasn't processing her seizure meds.  That was eventually ruled out   On the 3rd day we were there Alex started looking like she was having additional grand mal seizures that were lasting a lot longer but I knew they weren't seizures because while she was convulsing I could get her to look at me, and she would intermittently stop for a second or two.  I recorded one of the episodes on my phone and it lasted for over 9 minutes.  When the neurologist rounded and she watched the video she surmised that Alex was in pain and that was her reaction to the pain.  She explained in kids like Alex with her tone issues and  also chronic constipation that the stomach lining can become very inflamed and cause referred pain and so she started her on a nerve pain medication called Gabapenten.  Gabapenten is also a seizure medication (albeit not a very good one so it's not generally used primarily for seizures) so they thought adding that may help control her seizures a bit better as well.  (Which it hasn't!)

Day 4 - we're back to smiling some and look more like ourselves!

...and later that evening I was getting some much needed love from my girl!

One of the main goals for discharge was for Alex to gain weight - she was still loosing while we were there so on day 5 when she gained 4 ounces I started packing up, we were ready to go!  Alex does not do well when she's in the hospital (who does?) but she does not sleep.  At all.  By day 4 the doctors were saying she was in an "altered mental status", which she was, but because she was completely sleep deprived - I was about to be in an altered mental status myself after 5 days of no sleep.  It was a vicious cycle too because they also wanted her seizures better controlled before we left but the more sleep deprived she got, the more seizures she had.  When the doctors rounded and said they wanted her weight trending for a few more days the look on my face must have spoken volumes because the doctor looked at me and said, are you ok?!?  I really liked this doctor, he rounded the whole time we were there and, minus one disagreement we had, I felt like we clicked - which is not easy to do with a lot of doctors.  On the second or third day after several conversations he asked me if I was a nurse to which I replied, no, but I do play a doctor at home and he thought that was pretty funny and said I should go on rounds with him and his team.  :)   When I told him I really just wanted to take Alex home he said that he could argue that she wasn't stable but after a bit of discussion he agreed that I knew what I was doing and I promised that if she wasn't getting any better at home I would bring her back in.  We came up with plans to implement at home and were scheduled for several out patient follow-up appointments for the following week.

It was a tough week - my mom was sick with the flu, the NASCAR races were in town so Aaron had to work and poor Zach was being juggled all around.  It's not in my nature to ever ask for help so I have to say  I am so thankful for my wonderful friends who just stepped right in to help me.  It's so easy to get so caught up in how tough things are but there was SO much goodness surrounding us we couldn't help but feel all the love and I feel like I have to give some shout outs in...no particular order!

To this crew - I definitely could not have gotten through the week without them:

My friend Kate who made a survival basket for us with everything we could need in the hospital and who came up to the hospital to help me bathe Alex and gave me time to leave the room so I could go downstairs to eat - she was also at the house when we got home because Aaron couldn't be there and helped me get her settled.  Scott and Leslie - Rudy's "furry godparents" who had taken him for the weekend and relieved another stress not having to worry about him as well.  Mr. Bob who cooks some pretty fierce meals and always comes to visit her when she's sick because he knows he can make her smile.  My friend Sara who had taken Zach several nights during the week, feeding him, helping with homework and coming to my rescue early Sunday morning and then spoiling him with breakfast and a shopping trip to Target. And my sweet little Jane Anne who adores Alex and prayed that God would make her feel better because she loved her - and even though Alex can't speak she knows she loves her too.

So thankful for my sister and brother-in-law coming to the hospital too and sitting with Alex so I could leave the room for a few minutes.  For her nurse Tammy and her husband Dale who came to visit and for her prayer bear.  I don't leave the hospital when Alex goes in so to have someone come sit with her to give me a break is such a blessing.  My friend Lynda for coming to see me and for the great conversations I get to have with her.  Lynda also shared a picture of Alex on Facebook that resulted in over 14,000 views - that meant 14,000 prayers and good wishes for Alex. 14,000 - that's mind blowing to me.  

For my friend Cheryl for always having Zach over and for being willing to take him that weekend even when her daughter had pneumonia.  And the awesome lasagna they made last time Alex was in the hospital (I'm still waiting for the recipe for that - hint, hint!)  

For my other friend Cheryl for the beautiful flowers she sent to cheer Alex (and me!) up.

For my friend Shelby who made this incredible "sunshine" basket to help cheer everyone up - there was literally something in there for all of us - it was the most creative basket I've ever seen!

For my friend Cat who made us this amazing dinner when we got home.  With Aaron having to work the day we got him this was huge....and DELICIOUS!

We are home, we are on the mend and we're getting back into a much needed routine.  To everyone that called us, sent us messages, prayed for us - we really are so thankful for each and everyone of you.  Thank you for loving us - and our sweet girl.


Susan said...

I'm so glad you got to go home and she is doing better.

Anonymous said...

how is Alex doing.. miss your post:)