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 :)