July 3,4, 5, 6th we spent inside the Emergency room for Gavs (luckily each night we got to take him home with us)… I just cringe thinking about it… he got really sick this time, fevers up to 103 on Tylenol, I woke up one morning and I thought that he wasn’t breathing… it was terrifying, just hit home again just how sick he is. Like everything in life, things after awhile become normal, and his disease is just a normal part to him, but to see him so lifeless just laying there was shattering. As I was driving him in I was praying to God to take care of my baby, and basically promised him everything under the sun if he can just grant me this wish! His little arms look like pin cushions but now we found our new “go to” people at the blood lab so that shouldn’t happen again. Six tries for an IV line on him this time, I could hear him screaming in my nightly nightmares.
He just started to turn the corner today, broke his fever and now has a full body rash, took him to urgent care today and they are not concerned about it. As he gets older it seems to be more traumatic. He doesn’t want to be set down still, and I woke up this morning and could barely get up because my back hurts so bad. When he’s in the hospital he just wants me for comfort, and he won’t let me sit or put him down, the only place he feels safe is in my arms. I am glad that I can offer him that, and when it’s your babe reaching up to you, you always find the strength to pick them up.
Lauren got to see her fireworks. Her and Jay laid out and watched the show from our front yard, I was too tired and didn’t make it up for them, always next year! Lauren loved it, you can just see the sheer happiness splash in her brown pool eyes! She has perfected the art of, “just another” before bed to keep awake just a hair past our sanity point. The other night she asked Jay for a glass of water and said, “we kids are a lot of work aren’t we?” Jay said “you’re telling me” and Lauren’s response was, “well, I have to stay hydrated.” With that Jay slid one sleepy foot in front of the other and got her a water, Jay 0 Lauren 1.
Lauren has also started to speak French thanks to Madaline. Today she was telling me in the car, “if my friends ask me if I can play, or if I want gummi worms, I can say ‘wee wee’”. Genius, friends and candy and a little French, can you get more cultured than that?
We are going to be looking at Lucille Packard in CA they do the most pediatric transplants for kids under two and have a very high success rate. Its been an experience, and hopefully all this planning will make for an easy travel. It will be the first time for the kids on a plane, and hauling all his medical stuff with us is going to be a project. We are very happy where we are now, but the CA program does more and has a longer steroid free treatment program that has been done on infants. If we decide to do transplant there, we will be out there for 100 days, but they have a Ronald McDonald house for us to stay in and where there is a will there is a way. Gav will be in the hospital for almost all of it, I will be recovering in some strange place (it will be a longer recovery since it won’t be laparoscopic, kids under 5 do better with the old way of removing the kidney, so that’s what we are going to do), but again, you do what you need to do, and hopefully the sun out there will give off some comfort. There are a lot of loose ends with all of it, but we will do whatever is best for our little man and our little girl. Just looking forward. After this stint in the hospital with Gav there is no more fear, just anticipation to seeing him feel better. It’s kinda like when you are pregnant for the first seven months you are scared for labor and in the end you’d do just about anything to have that baby get out of you.
My brother, his wife and son are in from Oregon so we are busy trying to get some quality time in with them before they leave. There is nothing like family! Take Care and may there be rainbows in your tomorrow! (we really need the rain!)