Fight On

Yesterday was a big day for our little champ.  Eli needed to have 3 procedures done under sedation so rather than putting him under 3 different times they coordinated all three tests so he'd only have to be sedated one time.  The evening before, the doctor came in to tell us what to expect and then finished by saying that he was scheduled for 10:00am and that he couldn't eat anything after midnight.  Umm...what?  Eli is nowhere close to sleeping through the night and still eats every 2-2.5 hours!  I was immediately dreading the night.  How in the world are you supposed to make a baby go so long without eating?  My heart was already breaking for him and the night hadn't even started! I was able to get him to finish a feeding right at midnight and then fortunately they allowed him to have unflavored Pedialyte until 5:00am.  I was hopeful that he would get a lot of sleep from 12:00-5:00 but unfortunately he got almost zero.  The nurses were in and out constantly so Eli, Logan or I didn't get much sleep at all.  They drew his blood twice, took a chest x-ray, checked his vitals and and checked his IV constantly throughout the night so he was not a happy camper.  I finally got him to fall asleep a little after 5:00 and was hoping he would sleep for close to 3 hours because then there would only be an hour and a half of crying until they came and got him around 9:30.  He had other ideas and woke up a couple minutes after 6:00 ready to eat.  He didn't mind the Pedialyte but there's not much to it so I'm sure it went right through his system.  I braced for the worst and try to do everything I could to comfort him starting at 6:00 and just hoped the next 3.5 hours went by fast.  Around 9:30 when they were supposed to come get him the nurse came in and said they were running behind and they would come for him at 10:15ish.  Fantastic.  At 10:15 she came in again and said they would come at noon because they were still behind.  At this point he will have gone 12 hours without really having much to eat.  I felt so horrible for him!  12:00 came and once again, we were informed they were behind and they were hoping to get him by 12:45.  I honestly thought my poor, tiny baby would starve to death! (Not really) Finally we got some good news and at 12:15 they were on their way up.  It was no doubt the longest 12 hours I can remember in a long time!

The first thing they had to do was put in a central line.  For those of you that don't know what it is, because I sure didn't before we got here, it's basically an IV that goes in his chest and straight to his heart--the thought of that still freaks me out.  It's much more long term than an IV (it will stay in the entire time we're here) and not only can they give him fluids or medication with it but they can also draw blood from it.  This will be so nice to have because since we've been here they've had to poke him constantly, sometimes multiple times a day, and I feel horrible every time they do.  The central line placement was successful and it is working great.

The second thing they did was an echocardiogram and that too was successful.  It is a standard procedure they do for all of their bone marrow patients to ensure the heart is functioning properly before they go through chemo and the transplant.  Everything with his heart looked fantastic so that made us very happy.

The third and final thing they had to do was an in depth hearing test.  This is also a standard procedure they do before the transplant because they want to make sure their hearing isn't damaged during the treatment but our situation also happened to be a little different.  When Eli was born he didn't pass his newborn hearing screening and at the time they told us they thought it was because he still had fluid in his ears.  We didn't think too much of it and scheduled a more in depth test a little down the road.  After Eli was diagnosed with SCID, they were trying to determine which type of SCID he has and discovered that he showed many of the signs of the type of SCID called Reticular Dysgenesis.  One of the common sings of this type of SCID is hearing loss.  When the doctors told us that last week we were a little worried because we (at least I) was hoping the newborn hearing screening was inaccurate.  Looking back, I'm glad they told us it was a possibility he'd have hearing loss because we were more prepared for what the audiologist had to tell us.  

On top of everything else our little guy is already dealing with, they discovered yesterday that he also has profound hearing loss in both ears.  They said that there is possibly some fluid in his ears still and when this is gone there's a chance his hearing could improve some but that he will definitely have permanent hearing loss.  If you had told me before Eli was born that he was going to have hearing loss I probably would have been heart broken.  Surprisingly, when the audiologist told us the news both Logan and I were quite calm and comforted.  We already felt like we were blessed with a pretty amazing little spirit and this just confirmed that for us.  We have no doubts that he will grow up to be a pretty strong little guy for all he is going to overcome.

The steps we now have to take as far as his hearing intervention goes are still quite unclear.  For one, they need to find out if his hearing will improve at all once the fluid (if there is any) is gone.  Typically they would put tubes in his ears to help get rid of the fluid but because there is a risk of infection with tubes and he has no immune system his doctor doesn't want them in right now.  The audiology staff is going to meet with Eli's medical team next week to determine a plan of action so we'll know more then.  Until then, we are loving our little boy just the same and are so grateful he's ours.  What a unique, special journey we have ahead of us as a family.

As Logan and I have continued to process everything that's taken place since Eli was diagnosed almost a week ago, I had another Dr. Seuss story come to mind.  (Pardon my constant reference to children's stories.  I guess that's what a teaching degree will do to you and I love the messages they teach.) This particular story is called Horton Hatches the Egg.  For those of you not familiar with this one, it is about a bird named Mayzie that convinces Horton to sit on her egg while she takes a short break that ends up lasting for months.  Even though Horton looks completely ridiculous sitting on Mayzie's egg and is constantly made fun of, he never leaves the egg and continues to say to everyone: "I meant what I said and I said what I meant, and an elephant's faithful, 100%!"

After 51 weeks of sitting faithfully on Mayzie’s egg, the selfish bird suddenly returns and demands the egg that she as abandoned.  But it’s mine!  Screamed the bird, when she heard the egg crack.  The work was all done.  Now she wanted it back.  It’s my egg!  She sputtered.  “You stole it from me!”  Get off of my nest and get out of my tree!” Poor Horton back down with a sad, heavy heart.  But at that very instant, the egg burst apart!  And out of the pieces of red and white shell, from the egg that he’d sat on so long and so well, Horton the Elephant saw something whizz!  It had ears and a tail and a trunk just like his!  And the people came shouting, “What’s all this about….?”  They looked and they stared with their eyes popping out!  Then they cheered and they cheered and they cheered more and more.  They’d never seen anything like it before.  My goodness!  My gracious!  They shouted.  My word!  It’s something brand new!  It’s an elephant bird and it should be, it should be, it should be like that!  Because Horton was faithful.  He sat and he sat.  He meant what he said and he said what he meant.  And they sent him home happy 100%.

This will no doubt be the most difficult thing Logan or I has ever had to go through but we both know that we can leave this trial behind and go home 100% happy if we stay faithful and grateful for the blessings we continue to receive each day.

Next post I'll make things a little bit more exciting and add some pictures of our new humble abode :)