Sunday, July 3, 2011

Day Eleven

The two pictures above are from our homecoming today. The first picture is of James and Kara catching a well deserved rest. One of James' favorite resting places in on someone's chest on the couch. He doesn't really care whose chest. This is after James got his first dose of at home lortab, so he's in a good place.

The second picture represents our "loot" from the hospital. When you stay in the hospital, all sorts of things accumulate in the plastic bins in the front of the room. When you leave, it's a bit like leaving a hotel room. What should you take? You ask the nurse. They say you can take anything. Kara and I had the following conversation:

Kara: So what should we take?
Me, hurriedly packing: I don't know. Everything? Just throw the bins on the cart.
Kara: Ok

As a result of this planning, we now are the proud owners of he following items:

4 Thermometers
1 Stethoscope
5 Rolls of tape
1 week supply of baby food
1 suction clamp
1 symphony breast pump hook-up.
1 intubation kit
1 blood extraction kit

We're thinking of opening a clinic. I think the home intubation kit will be especially useful. How many times have you needed to give your child a breathing tube and not had the proper equipment after all? Those are just problems we don't have anymore.

Today started out well. By the time I returned to the hospital with two venti caramel macchiatos in hand (so far we've gone through $70 in starbucks gift cards) they'd agreed to discharge us even though James still was throwing up. Whatever the problem is, they said, it's a low-line and not showing up on any scans. We're hoping it will just clear up. So they sent us home with some medicine for nausea and instructions to return if his responsiveness level changed in any way. So far so good. James is throwing up still- especially when he gets upset, but although he's fussy he seems to be all right otherwise. Still, if he gets dehydrated we'll find ourselves back at the hospital so we're praying that he keeps everything down. He's thrown up twice since we got home, which is not encouraging. We'd like to avoid a Fourth of July in the hospital.

Lately, it seem we're on edge about everything. James' sickness. His unknown complications. His vomiting. His medications, the way his eyes look. Are his pupils more dilated than they should be? is he responsive? Are his eyes looking up in the wrong way, or down? Nothing seems safe, we keep hoping that James will at least be well for this week but so far no luck. There is no sense of baseline comfort or normalcy. Case in point: While I was writing this post, something from the back of the house started beeping. For whatever reason, we assumed it was one of James' monitors somehow telling us he wasn't breathing. We rushed back to his room to check on him only to discover it was actually the phone being paged- Kara hit the button on accident while unpacking some groceries. The residual sense of safety that we once enjoyed at home is gone. Still, we try to find humor in things. Our home intubation kit. Our reaction to the phone pager.

Although James has been fussy, he still finds ways to bring us joy. You can tell that even when he's not feeling well, he wants to laugh, he wants to be having a good time. He can't resist smiling every now and then when we do something he thinks is silly. He loves it when you do unexpected things, throw the dog in the air, jump up and down, look at him upside down. We just want him to feel well enough that he can enjoy himself more.

Overall, being at home is much more relaxing than being at the hospital. The days seem longer and time passes with more purpose. It's more comfortable, the beds are real. James has all of his toys at hand. These are all good things.

One other thing being at home has given us a chance to do is to see all of the cards, gifts, and other messages of support we've received. It's overwhelming to see how many people are thinking of James and praying for his recovery. Thank all of you for walking with us.


  1. James has won my heart. I was born with a disease that only 500 people in the U.S. have. As a result, I've been through many many hospital stays. I had a kidney transplant when I was 11. I gave birth to our miracle girl last february. I truly believe BIG miracles can happen, as there are only a few other women in the world with my disease, Cystinosis, who have been able to have children and 2 of them died as a result. I celebrate every day that I'm still here. I love that you have not lost your sense of humor, hang on tight to it for it will be your saving grace when dealing with the roller coaster of the hospital environment and illness. Also, request Child Life services when you are in the hospital; they are professionals who aim to make the hospital a less traumatic experience for the little ones. They do play therapy with the kids and all sorts of amazing interventions. I'm praying for you and your family and hoping you get your miracle.

  2. Today I am praying for peace for your family, and for a restful time at home.

  3. Dearest Kara & Matt---Please know how much our family is lifting you & James up in prayers. Your "Oklahoma connection" is going strong. I so enjoyed the pictures. Seems like your wedding was only a short time ago. Your son is so handsome. We ask God's arms around you, his healing touch to surround all those that care for you & a peace & calm to help you rest.
    Love---Mary Steward, Lauren & Shannon Haynie, Chris Rawson