The Roller Coaster Ride Continues.....

It has been a trying week for our family.  We had a great Easter on Sunday, and Hannah had been doing awesome.  I finally felt like we were living a normal life.  It was nice to have things so calm.  I should have realized the two weeks of health and stability was coming to an end. That is about how long things stay good before something comes crashing down!  

Monday evening Hannah started spiking 103 fevers.  I immediately called all her doctors but since she was acting fine other than the fevers, we treated her with tylenol until someone could see her on Tuesday.  Tuesday morning we took her into the pediatrician before jumping to a conclusion that it was a liver issue so they could rule out any typical childhood illnesses.  She had developed a rash on her hands so she was diagnosed with Hand, Foot, and Mouth.  As Thursday approached her fevers were still continuing to spike and her belly looked significantly larger.  I was starting to get very concerned because she stopped sleeping on her belly, having trouble sitting up, and was no longer my happy girl.  I called the GI doctors that morning, and we went down to Children's to get some labs and see the Hepatology(Liver) doctor.  They were almost certain on exam that she was retaining more fluid and there was a possibility she could have an infection in the fluid.  They decide it would be best to admit her and get to the source of her fevers and enlargement of her tummy.  They sent us to ultrasound to look for fluid on her abdomen but to everyones surprise there wasn't any fluid present.  We continued to be admitted to the hospital and had some blood and urine cultures drawn.  

Last night (Thursday night) was a rough one!  The poor girl spiked another 103.5 temperature and they gave her tylenol.  After an hour, she was still burning up!  I have never felt anyone so hot to touch:(  I voiced my concern and suggested the Tylenol was just not doing the trick.  After finally getting the resident to call the Fellow, she was given the okay to give her ibuprofen.  Within an hour, her temp started coming down and she slept soundly for the rest of the night.  I am assuming some of you maybe wondering what the big deal about giving the Ibuprofen versus Tylenol.  Unfortunately with Hannah neither is great to give her, but obviously she needs some kind of relief!!  If you are a mother, and even if you are not, you know that sometimes Tylenol just does nothing for you or your child!  In Hannah's case, the tylenol doesn't help her either, but is also hard on her liver because it is metabolized through your liver.  Given correctly it would not do immediate harm, but it can be damaging.  On the other hand, the Ibuprofen can be hard on her as well if given to frequently for bleeding reasons, and once she is transplanted they recommend not giving it since it is filtered through your kidneys just like her immunosuppressant would be.   Last night, I could not continue to watch her suffer like she was so I continued to push for the ibuprofen until they gave it to her!

This morning we started to finally got some answers!  What we have found out so far is that she does have a UTI which in turn also spread to her blood causing an infection there as well.  She is getting treated with a strong antibiotic in hope to kick it out of her system. So now at least we now the source of her fevers!  Now on to her belly......  The only good response I have gotten for that was from our transplant coordinator that her liver and spleen might be enlarged due to her infection.  Well here we are still with a large belly!  I once again voiced my concern something was wrong because her face seems puffy today.  When she woke up this morning the one side of her face above her eye was very puffy.  The team came in and took a look at her.  They agreed she was bigger but believe it was due to getting to much IV fluids.  Her IV fluids have been turned down so hopefully that does the trick.  As I look at her though I just have a feeling there is something else going on.  So I would like to repeat the ultrasound in hopes to get a better feeling about why her belly is so large. 

The other news we have received is that her PELD(Pediatric EndStage Liver Disease) score did go up due to her recent lab work.  She was a 5 and now is an 11.  What does that mean?  Her transplant is now possibly going to be sooner rather than later.  She currently is the only infant at Children's on the liver transplant list.  What does that tell me?!  I need to get on it, and be ready at any moment for Hannah finally to receive her second chance at a healthy life!  I have to say, it makes me very stressed out to think how much I would like to do around the house before all this happens, but I know realistically it will probably not happen!  Ohhh Well!  As long as I can bring my little girl home happy and healthy that is all we truly care about right now!

So how do we feel about all of this unfolding??  Well I am not quite sure.  It has been a rough week, and I have had my fair share of breakdowns.  Besides missing my sweet little boy Jacob, we are trying to stay strong and positive.  I try to think of ways to explain to people what we go through and how we feel, but realistically until you live it, there isn't a great way to describe how frightening and heartbreaking this all has become to us.  The best reference I can give anyone is that it is a frightening and unpredictable roller coaster ride.  You start by slowly going up, up, up but you know in the back of your mind eventually it will be time to go down.  When we finally feel like things are going good, it is like reaching the top of that hill on the ride and getting a great view of everything around you.  Then you go down, and you go down hard and fast.  When you get to all the twists and turns (which in our world would be the hospital stays) some turns are scary and take your breath away while others are just enough to keep you on your toes.    There are so many ups, downs, twists, and turns to get Hannah back to a healthy and stable state again, that it feels like this roller coaster ride will not end until she is finally getting wheeled in to the OR for her transplant.  That will be when this ride is over.  Unfortunately though we will  just continue walking down the pathway to a whole new ride.  A roller coaster that will be new and TOTALLY different.  One that will still be frightening but hopefully not as unpredictable.  I personally would prefer a nice and boring one with some obvious and expected twists and turns.  What I would give to have that boring life right now!  I don't think I will ever be bored again at the end of this ride.....

I have to say Friday the 13th lived up to its name in my book!  The Cardinals didn't even win Opening day!  Greg and I had tickets to go together, but I just couldn't leave my little girl.  Thanks to everyone who offered to sit here with her for me to go.  As I did entertain the idea, I knew there would have been no way I could have enjoyed myself.  I was however, a sweet wife and made Greg go and would not take NO for answer.  I think Greg deserved to go just as much as me, and he has never gotten the chance to experience Opening Day.  Why waste those tickets!!  That would be complete nonsense and craziness :)

Please keep Hannah in your thoughts and prayers.  I will continue to keep you all posted as things unfold and we continue our hospital stay.