Friday, February 15, 2013

What a week!

I wanted to write this post a couple days ago; it is probably better that circumstances did not allow me to get to it.  On Wednesday it would have been a VERY negative post.  This way, there is at least a ray of light at the end of the tunnel.  Nothing like all inclusive stay at a hospital to humble you right up!

I am not selfish enough to not realize that there are plenty of others who have it way worse than us, however, there are times when I get just plain angry--Angry at the cards we were dealt, angry that Alexa drew the short end of the stick, angry that every time she should be celebrating with her classmates or family, she ends up in the hospital.  This was one of those weeks.  I was just ANGRY at LIFE--at all of it!

I knew this was not going to be a great week early on.  On Sunday night, Alexa came down with a low grade fever--one dose of Children's Advil later, and she seemed back to self, but on Monday night a nasty little cough started.  With Valentine's Day coming up and knowing that Alexa always misses out on celebrations with family and friends on special occasions, I KNEW this was probably going to end up like the others.  All I want is for Alexa to be able to get the most that life has to offer.  For a 4 year old, that includes being able to go trick-or-treating on Halloween, exchanging valentine cards with her classmates, opening Christmas presents with her family.  However, Alexa has spent the last two Halloweens sick (this past one in the ER). Christmas Eve last year ended with the same fate.  As well as MANY other family celebrations.
So I was pissed off when she got a fever on Tuesday night...I knew that this was going to put her out of commission for school on Thursday.  That all her effort into making valentine cards for her friends was going to have been for nothing.  This was going to be another special day that she was going to miss out on.

On Wednesday we got the call that we have been waiting 10 months for.  As soon as I saw the Blocked Caller ID on my cell phone I knew what it was. The liver transplant nurse called to ask us to bring in Alexa as they had a match for her.  It pained me to no end to have to tell her that Alexa had a fever and was coughing--I won't lie, I even tried to downplay the severity of the cough and fever--Not happy with myself for that, as I would never want to compromise her health or safety, but in my heart, I was hoping that her fever REALLY wasn't that bad!  It didn't matter--There was no way she would be able to take that liver.  To wait 10 months, and get THE call finally--and have to turn it down---Oh boy was I mad!  Immediately tears of frustration rolled down and there was no bringing me back from my despair.

Then I came home, and had to get Alexa to eat as she ate very little during the day.  Immediately tears came to her eyes and she complained that her tummy hurt.  To beg and basically force my girl to eat a bit of soup when her tummy clearly couldn't handle it, well that just put me over the edge...with tears rolling down both our faces, I sat her down and tried to explain to a 4 year old as if I were speaking with an adult, the reasons why she had to eat.  And the fact that she understood and tried, I mean really tried to choke down as much as she could.  I REALLY HATED LIFE AT THAT VERY MOMENT.  Why my daughter was not allowed to just be sick like thousands of other 4 year olds and eat when and if she wanted, irritated me!  And I had to be soooooo careful, she needed to eat enough that she got the calories to keep her metabolically stable but I had to make sure that I didn't push her so much that she would throw up...She got that look in her eyes and I knew one more spoon and it was all coming out--I stopped!  I had gotten enough into her that I was confident we would stay out of the hospital for at least the night.

Managing this illness at home was short lived though.  We did a lot of running back and forth between calls to the metabolic doctors and visits to the pediatrician and laboratories.  Everyone was on the same page--Alexa probably had a viral infection and as long as she was keeping her food, formula and extra calories down, we could stay home--(easier sad than done!).  Well as soon as we got back from the lab, she ate snack as well as some high calorie juice and just could not keep it down.  She had also been way more sleepy than normal.  The on-call had no hesitation in her voice--we had to bring her in.  So it seems that we could add February 14th to a list of dates that Alexa would spend in the hospital.  But you see, yesterday was not only Valentines Day--more importantly it was Alexa's big brother, Stefano's 13th Birthday.  It saddens me to say that Stefano at times gets overshadowed by his little sister and her UCD.  We really try not to let it happen like that, but when she ends up admitted to the hospital on HIS b-day....

That she had to send a video message to him instead of saying happy birthday in person, that Stefano had to worry about his little sister in the hospital instead of basking in the glory of HIS day.....add this to another reason life pissed me off.

Stefano Morales, it has been a pleasure to watch you grow into the wonderful young man you are becoming.  Alexa and I love you very much and hope that you had the most amazing 13th birthday!

And then we spent the night at the hospital--and it seemed that was what was needed for me to be grateful of  a couple of things.
1)Alexa has a pretty bad virus and through it all, her ammonia's came back at 18 and then 9!  Metabolically could not be better--So while we lost out on our liver; at least we can wait in the comfort of our home knowing that my girl is stable!  Our transplant nurse emailed yesterday and let me know that we are VERY high on the list! Our time will come and when it does, it will be the perfect fit for Alexa!
2)I have amazing family and friends.  Friends that call or text me right away to offer support--telling me things that are way too inappropriate for here but exactly what I need to bring a smile to my face while it is covered in tears of frustration.  Friends and family who come to visit and help out while we are in the hospital.  At one point we had about 6 people in our emergency room (other than Alexa).  One of our dear friends was even kicked out (as the IV team was in with Alexa) but that didn't stop her from hanging out to sneak in a visit and offer support when the coast was clear!
3)This UCD life we inherited, has led me to some wonderful friendships with other parents of children with UCD's as well as others who have a UCD themselves.  Thank you Mark Zuckerberg, for this is not a luxury others before us were granted.  We worry when any of our kids are not doing well, stay up to wait for ammonia numbers, offer support and a judgement free zone when we just want to vent.  For their unending support, I will be eternally grateful!  In HSC, I met another UCD mama (in person as opposed to on facebook).  Her son was there for a regular clinic appointment and while there was not much time to talk as we had to be back for rounds, I am so happy to have met another family who we will one day be more than happy to offer the same support I have gotten over the years should they ever need it!

I am not going to lie--I am still not overly happy with the way things worked out this week, but at least I have a bit more of a positive outlook.  Life is full of ups and downs--this one is just a little more down than I would have liked it to be.  Next week will be better--I am sure of it!
And a picture to show how happy we are to be home!

1 comment:

  1. Holy cow that WAS a heck of a week! I knew most of that, but did NOT know you had to turn down a liver due to fever. What a gut wrenching feeling that must have been, but everything for a reason. That must not have been the best liver for her, and an even more perfect one is on the way. Glad (so glad!) that her ammonia control is so great during whatever viral thing has its hold. Next week will hopefully be better!