Category: Transplant

Getting settled at Primary Children’s

Arriving at a hospital on Thanksgiving morning is not the best of plans. Although we’ve been well taken care of, it took a few days before the regular hospital staff was all here and we could really start to get settled. But they’ve taken good care of him so far and we’re feeling a bit less like a family of fish out of water.

The hospital immediately started working on perfecting Patrick’s nutrition and have made regular adjustments to his TPN (iv feeding) and formula. He’s now eating 13 cc’s (maybe 3 teaspoons) of Elecare, which is a predigested formula. And, since Patrick loves eating, he still just gulps it down.

On Saturday he gave us a bit of a scare when his temperature shot up to approximately 101.9 degrees. It turns out that he’d gotten an infection in his PICC line. He’s been on antibiotics for a couple of days and today they pulled the PICC and switched his TPN to a periferal IV. (That means that it is in his hand rather than going in through a central line to his heart). He’ll have that until the infection can clear and then they’ll put in a Broviac line, which is a central line in his chest that’s a bit more sturdy so he can go home with it.

He also go quite anemic, especially when they had to start taking blood samples to check his infection so he had a transfusion this morning. His color us much better and he’s much more active and alert.

We have been getting lots of training on home care for him and are pretty good now at changing his ostomy bag… though I’ll admit that if one more person comes and shows me the same pictures of possible complications for a stoma, I might just lose my mind.

We have a care conference scheduled tomorrow morning. This means that the doctors and nurses and social workers and discharge planners will all sit down with us and we’ll talk about a plan for Patrick’s long term care. Our two main priorities are getting him listed for transplants and making plans for him to be able to go home with us until he’s big enough and an organ becomes available. After that meeting, we might be able to answer the question of when he’s coming home. I know a lot of our friends and family are dying to meet him and we appreciate your patience with us as we’ve been trying to get him settled and healthy here.

Sorry for a post with no pictures. Patrick’s due to be fed and I don’t have the time to get them off the camera. If I get a chance later this afternoon I’ll send out a post of just pictures.

The bestest birthday present ever

This year, my ultimate birthday wish came true. On Tuesday we were given custody official legal custody of Patrick. This was done in what was pretty near record time for the state of Michigan. Now we only have a couple of hurdles left before we can bring him home.

If you haven’t heard the sorry, we were contacted on November 5th by our caseworker and told about a little boy who’d been born the week before in Michigan. The details of his medical condition were pretty sketchy, but in essence, we knew that he had to be fed through an IV and that his chances of living past age 2 were pretty slim.

Our gut reaction was grief, mourning for the loss of what we’d expected in becoming parents. But, at the same time, we’ve always felt that adoption is a faith process and we at least owed this opportunity some serious thought and prayer.

Brian came home from work and we said and prayer and went to the temple. And – decided that we should keep learning more. The next day we got some additional information from our caseworker and sent a copy of our adoption profile to Michigan. We really didn’t expect to hear much more and did not expect at all to be chosen.

But – the next day, as I met Brian at his office for flu shots, the phone rang and our caseworker told us that Patrick’s birthparents had chosen us. (I didn’t care so much anymore if it might hurt to get a flu shot). We quickly got in touch with caseworkers and the hospital in Michigan to learn more. We decided that the best way to assess the situation was to fly to Michigan where we could see things first hand.

We arrived in Detroit Saturday evening and, after cleaning up a bit at the hotel, went to the hospital. We were met there by a bit of drama between the birthparents… and were not met by the caseworker here. We were introduced to the birthmother and her family, and then to Patrick. We learned that Patrick was born with a defect called short gut, meaning that most of his bowel is missing. Because of this, he’ll need a bowel transplant to survive. But – he is so small that he can’t have a transplant until he at least doubles in size… and his chances of surviving infection and liver damage that long are pretty slim.

We went back to our hotel room completely overwhelmed and quite ready to just go home. But – we’d promised ourselves that we’d spend a day with him, and so Sunday that’s what we did. We spent a day holding him and learning what kind of care he needs. One thing to know about Patrick is that, unless you know something’s wrong, only the tubes attached to him would give away his condition. In every other way, he is a happy, healthy little baby boy. And by the end of Sunday, he’d pretty much wrapped me around his finger.When I got back to the hotel I started copying pictures from our digital camera. When I came across the picture at the top of this post, my heart just kind of sang. I knew that I’d fallen in love with this little guy.

There were still a lot of questions to be resolved, though. We didn’t even know if the hospital in Utah would be able to care for him. So we spent Monday morning talking to doctors, nurses, insurance, and social workers.

Brian had to fly back to run a conference in Utah that same day. His flight left at 1. And we had to make a decision the same day. We really didn’t know exactly how things would work out… but we couldn’t leave Patrick anymore, and so we called the caseworker and signed the documents to begin the adoption process.

Michigan requires that the birthparents appear in court and be questioned to ensure that they made the choice to place a child for adoption of their own free will… so we had a tense few days as the agency prepared paperwork and worked to get an early court date. Fortunately, Howie had plenty to keep him busy at home and my mom was able to come spend the week with me here so that we didn’t have to face that anxious time alone.

And – finally – just two days ago on my birthday, the court placed Patrick in our custody.Now we’re praying for smooth sailing as the interstate compact is worked out and, even more importantly, as we try to figure out how to get Patrick home. The price tag on an air ambulance to Utah is $30,000. The care manager at the hospital is trying to persuade the insurance company to pick up the tab for most of that, but they (understandably) aren’t sure that they want to do it.

So, we keep praying and working, and most importantly, enjoying our new little son. The best part of any day for me is being able to sit with him snuggled up to my chest… especially now that Howie’s back to share the moment with me.

It’s too hard to keep up with all of our loved ones by telephone, so we’re going to do our best to keep you in the loop through this blog. Thank you all for the love and prayers and support on our behalf thus far.