One week, 5 days and 3 years

So sorry for the blogging hiatus. We've had a busy week/5 days/3 years as I'll explain to you.

It's hard to believe but it was just one week ago that Gabe came home from Children's hospital for his latest stint. Yeah, he ended up in the hospital with the pneumonia. It turns out it was more than just pneumonia, so it's a good thing we brought him into the ER.

The Tuesday before last, we knew he had pneumonia but were hoping to be able to manage it at home. Unfortunately, that evening he was requiring more oxygen, a sure sign he's sick... as in, hospital sick, so we had to take him in {kicking and screaming on my end}.

I hate taking him on the hour and a half drive down to Washington, DC, especially when he's sick. It means a lot of trouble keeping his oxygen sats up. Lots of bagging, lots of suctioning, lots of beeping... you get the picture. Even sent out a mass text along the lines of: Help...This is really hard right now...Gabe's not doing good...I'm not doing good...Please pray. I'm so thankful for friends that will take the time, even if it's just sending a text back or email or whatever, just to say "I'm here, I'm praying."

Shaun switched places with me about a half-an-hour into the drive and sat in the back to care for Gabe and so I could drive. Small as it may sound, it was a huge answer to prayer, was about thisclose to losing it.

Once we got to the ER they were expecting us so it was only about an hour or two before Gabe went up to the PICU. He was getting settled into his room as we explained to about 6 different people the same story...his background medical history, his symptoms, etc. Gabe was requiring over 2 liters of oxygen (quite a lot) and he needed to receive IV antibiotics so a team of nurses came to try to get a line in him. Gabe ended up having a reaction to the vancomycin that was infusing into that line, hives and redness, so they had to stop that antibiotic the next day and try a different one.

Cultures that were drawn from his trach, nose, and blood showed not only pneumonia, but rhino virus (the common cold but it hits fragile kids like Gabe extra hard) and a staph infection in his trach. Gabe really had a hard time turning the corner from the combination of all these illnesses at once. Usually after about 2 days in the hospital on IV antibiotics he'll start to feel better and come off oxygen, but this time it took 4 full days before he could be weaned down on his oxygen to less than 1/4 liter and to be able to keep his sats up.

In the meantime it was back and forth between the hospital and home for Shaun and I...just like the old days. Of course Gabe being in the hospital isn't as bad as I project, but it is just like pushing the pause button on life. The normal, mundane tasks of running up and down the stairs as I multi-task caring for Gabe and making dinner for the girls. Sitting on the couch watching television with Shaun in the evenings. All 5 of us under one roof.

There was one particular evening when I arrived home late to spend the night at home with the girls. Gabe's room was so empty, so quiet. No nurse, no machines beeping or buzzing, no television on. I hated it! It did not feel right at all....

At that moment I prayed and pleaded with God to please bring Gabe home, healthy and recovered from this illness, because more than anything I missed his presence in our home...machines and all. I wanted normal back... even if our normal is not normal. {funny thing is that one of the things I had been wrestling with God about lately, before the hospital stay, was how abnormal our life is...these machines aren't normal...they're not easy...but having Gabe away for these five days was a much-needed reminder to my soul}

Finally, on Sunday, Gabe was starting to look and feel like himself. He was awake, his oxygen was lowered, and he was not needing as much suctioning. We had the Get out of jail free card! Woohoo! Home sweet home.

Somewhere in there, blurred inbetween the lines, was the 3 - THREE!- year anniversary of Gabe's bone marrow transplant. I can hardly believe it has been that long and it feels really strange to even type that number. In some ways it feels like it happened a second ago, in the blink of an eye, and in other ways, it feels like it took place in another lifetime.

April 24, 2007. I remember writing in my journal at the hospital "Day Zero." That's what the doctors called it because days -8 through -1 he received chemotherapy and other pre-transplant drugs. Then Day Zero. Then every day after the transplant is day +1, +2, +3, etc. Wonder how many days that means Gabe's at now?! {I'm really bad at math, so don't ask me!}

It's a day that started a new life for Gabe in so many ways. Some good, some so very bad. On that day, he received new life flowing through his body in the form of stem cells from an umbilical cord (from the cord blood bank - an anonymous donor). Roughly one year later, Gabe's immune system was finally functioning at a completely normal level... thanks to the cord blood. And God of course :)

However, on that day Gabe also had a terrible reaction at the end of the transplant that caused him to go into respiratory distress and then respiratory failure. He needed to be intubated immediately but the proper sized ET tube was not in the room.  He was easily 10-15 minutes without adequate oxygenation... meaning his sats were low (in the 50's-60's as opposed to 98-100%) and he wasn't getting enough oxygen to the brain. As I've said before, he was never the same after that day. When he was finally intubated and stabilized, he was so sleepy. I didn't know then what I know now. I just kept hoping he was needed to rest and recover from the transplant.

Iemember praying and praying for his brain not to be affected. He never really woke up after that day. So in many ways that day's a very, very sad day because of what "could have been." However we have to trust that there is a reason for everything...nothing happens apart from the will of God. That is hard to grasp however I was encouraged by my friend Cindy who shared with me lessons from the book of Job. I will have to do a separate post about that next...

Below is the journal entry I wrote on Gabe's carepage from the day of his bone marrow transplant. I don't mean to end on such a low note :( The point of the post is just to let you all know that Gabe was in the hospital, he came home, and he recently celebrated his 3rd anniversary of his BMT!

Posted Apr 24, 2007 8:28am

Last night I had a dream that I was sleeping in the waiting room (big surprise huh?) and I had overslept so I was in a rush to get in with Gabe and was stripping the bed of all the sheets. I turn around and there is this family in the waiting room; they are dressed in black and gothic, but not the punk-rock kind of gothic, more just depressed and somber, like the Addams Family. And I think to myself in the dream, "Oh, great, they're here again," because they have appeared in my dreams here before. They created in the waiting room an air of depression, somberness, just a weird eerie feel. I woke up shortly after that and was a little bit shaken. It made me realize that the devil is always around, and according the Bible, he likes to "steal, kill, and destory." He is here in the hospital, as there is much death, much depression, much hopelessness here. Just as Jesus is here and is fighting for Gabe's life, the devil is here seeking to take Gabe's life. There is always a fight going on I believe, wherever God sends an angel to protect (you know, a "guardian angel") there are armies of the devil too (aka "demons"). Gabe needs us, needs our prayers, and most of all he needs the protection of his Father. Not my might, not by power, but by My Spirit says the Lord. Gabe's not fighting by his own strength, He's fighting because God is his strength. So glad to have HIM on our side!!!!!!