Home Sweet Home


This post is a bit late in coming but it’s about time that I posted the news that we were able to bring Patrick home with us on December 9th.

Things moved a bit quicker than we’d expected they would. With Patrick’s broviac line in place and his infection cleared, there were no medical reasons left to keep him in the hospital. They made the decision on a Friday afternoon to release him early the next week. We hurriedly trained that weekend to be able to take care of him and the hospital staff worked to make arrangements for home health care.

We got home around 5 p.m. on December 9th. It was so strange to be able to pick Patrick up and walk away from the bed, let alone to carry him around our home.

We’ve been home for almost 2 weeks now. Patrick’s sleeping pretty well at night,thankfully, and we’re starting to get a routine. Of course, after so much time away and with Christmas fast approaching, we’ve been swamped so we’re stretched a bit thin and aren’t getting as much napping time as we’d like… But it is so good to be home.

Patrick seems to be enjoying the quieter atmosphere. He definitely likes his new toys and all the friends and family who’ve been visiting. He’s doing very well and growing at a very good rate. Today’s weight was 6 lbs 14 oz.

Broviac Line

I wrote earlier that Patrick was going to have a broviac line placed after his infection had cleared. However, since he has tiny, tiny veins it’s really hard to get a peripheral IV into him and equally hard to keep him there.

Because he doesn’t have enough of his bowel to be able to absorb nutrition or medicine that he takes orally, Patrick depends on an IV to give him the nutrition that he needs. Also, as he’s recovering from this most recent infection, he needs IV antibiotics.

When I arrived at the hospital this morning, they told me that they’d be placing his Broviac line today instead of waiting a week. He’s been stuck just so many times trying to place an IV that they were running out of places to look – and he was running out of patience for it. He went to surgery this morning to have the line placed. It goes in through a vein by his neck and is “tunneled” under his skin. A catheter, or IV tube, comes out of his chest. This is a more durable IV line that should last him several months. In fact, one requirement to take him home was to have this more durable line put in.

Patrick went into surgery a little before noon today and was in recovery by 12:15 p.m. So far he’s been sleeping quite peacefully. We expect a quick and easy recovery. As soon as he’s awake, he should be able to go back to his normal routine.

If you’d like to know anything more about the line, this link will take you to the info sheet that Primary Children’s Hospital gave to me.

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.

Coming Home

Well, it took a few days longer that we’d hoped… But on a grand scale we actually made incredibly good time at getting back home to Utah. The ICPC came through late on Monday… unfortunately too late to do anything about it. So – Tuesday morning arrangements began to be made for the air ambulance. We were scheduled to leave Michigan at 2 p.m. Wednesday. Since space on the plane was limited, and there were things to do at home, Howie flew home Tuesday as soon as we’d made arrangements. I stayed behind to tie up the last loose ends and to take care of Patrick.

Of course, the best laid plans… Weather and mechanical things put the air ambulance enough behind that they had to take an FAA required break… So instead of leaving at 2 p.m., they finally made it to the hospital at midnight. I did my best to sleep before then… but Patrick wasn’t too keen on that idea so I was pretty tired even before I left.

The trip home was a very unique experience. 3 flight nurses and 2 EMT’s showed up around midnight and talked to the nurses at Beaumont to make sure they understood Patrick’s needs. Then, we wrapped him up in the snowsuit I’d bought for him at the last minute and strapped him into the carseat, which had been secured to a stretcher.

We made our way out through the ER of the hospital and were loaded into an ambulance. When transporting an infant, their biggest goal is to keep them warm… So the ambulance was a bit like a sauna. It took 45 minutes to get to the airport in Pontiac.

They put me on the plane first to get settled while they got things warm and ready for Patrick. Then they brought the rest of everything along. (Everything means Patrick in his carseat and a tiny little vital signs monitor and a tiny size pump for his TPN). Plus the flight nurses. We rode home in a leer jet so the space was quite cramped, but pretty comfortable. There were two nurses, a respiratory nurse (to make sure Patrick didn’t get hypoxic), and two pilots.

We flew at 70,000 feet because there is less turbulance at that altitude, so the climb took forever. But Patrick, who’d been asleep since we’d put him in his snowsuit, barely stirred. Once we reached altitude, I got to trade seats so I was closest to Patrick. But he was determined not to wake up. I had to work really hard to get him awake enough for his feeding, and then he fell asleep again right away.

Since he was determined to sleep, I went back to the comfier seat myself and tried to get some sleep in. I think I slept for about an hour and a half, and then woke up on time to start recognizing the silhouettes of mountains. One of the most stunning sights from the flight was the moon setting over the rockies, seen through the front windows of the jet.

We landed at the Salt Lake Airport about 4:30 and it took about 40 minutes to get loaded into the new ambulance and up to the airport. We found the NICU at just about 5:30. The hospital staff knew we were coming, but had expected us several hours before. And, for some reason, the ambulance crew didn’t think to call ahead and came in through a back entrance they weren’t expected to use… so we caught them a bit off guard.

They did an exceptional job through getting us in. I guess that, although the hospital had been in communication with the GI accepting Patrick, that information didn’t get passed along to many people. So, fortunately, the staff at Beaumont had done a great job educating us and we were able to help provide the basic information they needed to get started with his care.

They did pull me out to do some admissions and orientation stuff. And right about then the stress of the past day and the flight hit me. I was so glad for a stash of food and water in my bag because for a few moments there I was sure I was going to pass out. Fortunately, Howie finally got to us (he’d missed us because we came in an unexpected door) just as I hit the non-functional state and was able to take care of the most crucial things there.

Then, with Patrick mostly settled, we went home to get some much needed rest. I would have liked to spend a few hours with him, but I’d about hit my limit. So we got home at 7 a.m. Boy was it nice to see my own car and my own house!

We slept a few hours then got up, put the 200 some odd pictures we took in Michigan into a photo album (Howie had all those digitals printed), and then went to Thanksgiving dinner. It was early afternoon before we made it back to the hospital but Patrick was doing pretty well when we got there. He wasn’t sleeping, he was just laying there looking at his new surroundings. (He’s in a much busier room and I’m sure was confused).

That night, he got to meet my dad, his grandpa, for the first time.

Now we’re just trying to get things settled. We brought stacks and stacks of pages from his chart in Michigan with us. But- as we’d been warned they would- for most information they are relying on us to help explain. Again, we are so grateful for those doctors and nurses who took time to make sure that we really understood everything from Patrick’s care to his treatment, tests, and diagnosis.

This is a bit of a big adjustment for us. Different hospitals do things in different ways. Of course, the hospital wants to do their own assessment, so we’re repeating some things. He has to earn his way back off of pulse-ox and back into a crib. But they’re also being pretty proactive in his care. They’ve tried continuous feeding… but it sent his output levels through the roof. So now we’re trying progestamil by mouth… and he seems to be doing fine with it. We’re hoping to be transferred into the infant unit instead of the NICU pretty soon… but that all has to wait till the end of the assessment period, so it may still take some time. Some of the fun changes in this hospital are that we are dressing Patrick ourselves and he gets a bath 3 nights a week. I got to give him a bath last night, and boy oh boy did he love the baby lotion massage afterwards.

We expect things to pick up once we make it through the weekend. Yesterday, as people came back from the holiday, we started to meet some of the important people who’ll be involved with Patrick’s care. Monday we expect to see the most progress as things are finally back to work as usual.

The last legal hurdle

Our adoption process is a bit like a triathlon. The first leg is the home study and finding process. Most of you have heard about that. You answer a bunch of questions, clean every nook and cranny of your house (even the ones a caseworker would never look at), and then wait and publicize and wait some more.

The second leg for us has had a lot of hurdles. Some of the milestones have been a pre-placement agreement, enrolling Patrick in our insurance, a court date to establish custody, pre-authorizing a medical transport, and today we crossed the last hurdle… the Interstate Compact, or ICPC.

An ICPC is a formal agreement between two states about how an interstate adoption will be handled. It has to be finished before the child can leave the state. And we’ve been sitting here anxiously all weekend waiting for it to come through. And finally today at 4:15 EST we got the authorization we were waiting for to take Patrick back to Utah!

So now the only thing left for us to be able to go home is arranging the air ambulance for him. We expect that to be worked out tomorrow morning. If we’re lucky, we’ll make it home before Thanksgiving. (Knock on wood). Then the last leg is 6 months’ supervision and then the adoption will be final.

We are so excited to be able to bring Patrick home and let him meet the family and friends who have been praying so earnestly for him.

In the meantime, I’ve thrown a couple of other pictures of him in just because that’s what a bragging mom should do.

Patrick’s doing really well this week. His surgery on Monday seems to have been a success. A couple of days ago his jejunostomy started to work. They started feeding him again yesterday and today advanced him to formula. (Patrick doesn’t get much nutrition from food, but eating stimulates his other organs to work and may help preserve his liver and increase his chances of making it to a successful transplant.)

He’s also making great strides in winning us over. He’s pretty good at convincing me that I should hold him for hours for no reason beyond just that he wants it. I’m a sucker for the little smile he gives me when he recognizes my voice or my face. Howie’s not faring much better in resisting his charms.

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.

We’re parents!

We have some exciting news! We have been chosen to adopt a special needs child in Michigan. He’s a beautiful little boy. 5.5 lbs. He has a condition called “short gut” and needs a bowel transplant in order to survive. Until he can get to that transplant (between ages 1 &2)… and even after… his chances of survival are only 50/50.

We’re a very proud mom and dad. We’re also a bit overwhelmed by the sheer weight of the burden of his medical needs and a very complicated adoption process here. We appreciate all of you who’ve been offering prayers on our behalf.