nurses – Page 2 – Patrick Hoopes

Update: Two weeks (and a day) after surgery

Well, it’s been another week. Most people are surprised to learn that we are still at the hospital. Well, we did think that the recovery would be no more than two weeks.

But here we are.

It turns out that Patrick’s large intestine is needing much more time to adapt than was anticipated. The problem is that, never having been used, first it had to wake up, and then it has to stretch back to a normal size.

They did a contrast enema today. That means they squirted contrast in Patrick’s bottom and then watched on X-ray as it moved up through his large intestine, and then his small intestine.

The good news is that it moved through without problems. There are no obstructions or strictures. The bad news is that, well, it still resembles a long noodle more than a colon. And it’s fitted to a small intestine that is quite stretched out.

So the stretched out, and therefore weaker, small intestine is trying to push things through a super tight large intestine (imagine a balloon that hasn’t yet been inflated). And it’s just not working very well.

I’ll talk to Patrick’s surgeon tomorrow about the study and see if there is anything more that can be done. So far, though, the answer I’m given most often is that we just need to wait. Hopefully time and use will balance things out.

In the meantime, we just keep waiting here. I don’t know quite what to do with myself. Without feeding, ostomy, IV’s (I’m not allowed to touch them), or even diapers really, there isn’t much in the way of my normal nursing duties to do. So I’m trying to spend my time just being a mom… playing with Patrick and helping with the basic things like sleep, comfort, and cuddles.

The good news is that Patrick actually feels quite well, as long as we don’t let too much build up in his stomach. And this lends itself to fun new adventures like baths in a bathtub and learning to sit.

It’s not the easiest thing being cooped up in this tiny crowded room together with nurses going in and out all the time. We get a bit bored of each other sometimes. But we’re doing the best we can and just praying that Patrick’s body is up for the challenge it’s been given.

A day in the life . . .

Things have been pretty calm since we brought Patrick home from the hospital this time. It takes a lot of extra work to keep up on all the new medications he needs, but otherwise life has been calm.

But – it occurs to me that I should state that our calm isn’t exactly the same as others’ calm. Let’s take today as an example. It was a pretty good day.

We got up early today. Patrick woke about hourly through the night because he’s still not used to being at home. I get up and give him a pacifier and put his blankets back on him and he goes right to sleep. I was a bit tired when the alarm went off at 6 to tell me Patrick’s vancomyacin was due. I’d forgotten to take it out of the fridge last night, so I had to run around with it tucked under my arm to get it warm while I got everything else ready.

I prepared a bottle. Disconnected Patrick’s feeding tube, replacement fluids line and ostomy drainage tube. By then he was screaming to be fed so I got him out of the crib and fed him his 1/3 tsp. of formula then rocked him back to sleep. (And me, too). At 7:30 I put him back down to check to make sure Howie was up.

He was pretty awake then, so I went ahead and got him up, changed his ostomy bag and g-tube dressing, flushed his picc line, and got him dressed.

Because we were up so early I decided that it was a good day to go shopping. It’s Howie’s birthday on Sunday so I packed a bottle to give myself extra time to shop. (Patrick eats every 3 hours, which can be a narrow window of opportunity).

I’d been in the store about half an hour when my cell phone rang. It was Patrick’s nurse confirming an appointment for her to come draw blood for labs. It was 11:30 and she wanted to come at 12:15. So I made a mad scramble to focus and finish the grocery shopping so I could get home on time.

At 12 we finally made it out of Wal-mart and I loaded Patrick and the groceries into the car, then shut off his TPN pumps so that the labs would be accurate. (Need to give the blood time to carry off what’s in the PICC line.) I hurried home and just got the groceries into the house and put away and Patrick fed when his nurse knocked on the door.

I gathered up the supplies she’d need for the tests then held him while she drew them. She asked what his last temperature had been, and since I hadn’t taken once since he woke up, she did. It read 99.5.

Any rise in temperature can be an early sign of infection so I stuck a thermometer in my pocket to do temp checks every half hour. Then I took him upstairs to change his diaper only to discover his ostomy bag had leaked. He was pretty mad, but I pulled off a quick change and took his temperature again.. Still high.

I grabbed a quick lunch and put on replacement fluids (saline solution via IV). He needed some anyway and if he runs a fever he needs extra hydration. By then he was getting quite mad and so I piled everything to work on his tubing change around me and snuggled him up in my lap to try to help him sleep.

At 2 I traded replacement fluids for IV antibiotics, and when those were done, started prepping the new day’s TPN. When I opened up the backpack around 2:30 to see what time I had left in the day’s TPN program, I noticed a bad mistake. I’d failed to turn the pumps back on after the blood draw.

Without TPN running, Patrick’s blood sugar plummets, so I hurried and got him a bottle and then gave him a couple of licks of a glucose tablet to help keep him up. I made a record fast tubing change then reprogrammed the pumps to slowly “taper up” the rate of infusion to avoid going from very low blood sugar to something too high.

Finally with TPN running again, Patrick calmed down. But his temp was still between 99 & 99.5. My next option was to try to get him to rest. So we snuggled up on the couch so he would sleep. He’d sleep as long as I was right there holding him. So, while he slept, I talked to his transplant coordinator in Seattle and then sent an e-mail to his GI here to try to get sorted out a positive blood culture that showed up in his labwork last week.

The evening was calmer. Brian worked a bit late which gave me extra time to get dinner ready.

Around 8 we started working on the bedtime routine. One of Patrick’s meds needs to be given on an empty stomach so he gets that around 8:30. Then Brian and I work together to make new formula & bottles for the night and to prime the tubing for the feeding pump that drips formula into his stomach all night. He gets one antibiotic through his g-tube right now. We have to draw it out of a vial with a syringe and then change tips to something that fits his feeding tube and flush it in there.

Then we connect his feeding tube, flush his PICC line to make sure it’s still running well, and change him into P.J.’s. Tonight he gets to sleep in a onesie to help keep his temperature down, though.

At 9, Patrick ate and then curled up and went to sleep. Because Brian was home, we stayed up watching T.V. while we gave antibiotics. He gets 3 at night, plus more replacement fluids. We have to switch medicines and flush lines at 9:30, 10:00 and 11:00 p.m.

And that is why I’m up blogging right now. His last antibiotics are just finishing up, so I need to go take them off and make sure that the unused line is “heparinized” for the night. If I’m quiet, I hope to do it without waking him and make it to bed by midnight.

It sounds like a lot, but this has actually been a mostly relaxing day.. except the part in the middle when Patrick’s TPN was off and he felt awful. Last temp was actually low… so I hope that the other high numbers were a result of the heat of the day or the fact that he’s cutting a few teeth.

Re-evaluation at Seattle Children’s

You may have heard that Patrick had a day of office visits scheduled at Seattle Children’s hospital last week. After his cardiac arrest and the many complications that followed, they wanted to see him again to see if anything had changed that would affect his transplant status. They also wanted to look to see if he needed to be listed for a liver transplant.

What you may not have heard is that Patrick was hospitalized Sunday night with another infection. This time it was a staph infection which, if caught early, can be treated through his central line and clear easily or, if more established or more resistent, could become a very persistent infection that can hang on for months.

I called Seattle Children’s and tried to reschedule our appointment. However, Dr. Horslen was going to be away for the next several weeks and they didn’t want him to stay inactive on the transplant list for that long. After a few days and some discussion, we made the decision on Tuesday to have Patrick admitted at Seattle Children’s so they could both treat the infection and do the evaluation.

We got the final go ahead late in the day Tuesday. I was up till 1 a.m. packing. Wednesday he was discharged from Primary Children’s with just time to go directly to the airport. The flight went well. They only real difficulty was that Patrick’s ostomy bag started leaking at takeoff. Well, and that I got a tad bit lost in the airport because we landed in the international terminal and airports aren’t as well marked when you have to take the back elevator routes.

Nevertheless, we arrived at Seattle Children’s around 6 p.m. – just as they were changing shifts. We met part of the medical team that would be following him and, as usual, wowed them by giving them in writing all the information they really would need. It took some time to get orders written, so we had another late night as labwork and meds came trickling in. It was about 2 a.m. before we made it to bed again.

The nice thing about being inpatient is that it gave me a sense of what things will be like during his recovery after transplant. We started with an early abdominal ultrasound, specifically a doppler. Yes, this looks a bit like the weather map images, only it shows the flow of blood through the veins. They were looking to see if portal hypertension was developing. (As the liver scars, it starts to send blood through other vessels creating extra blood pressure through them. It can cause lots of complications.)

The team rounded about 10 a.m. It was a big group, about 15 people, including his GI Dr. Horslen, his transplant coordinator, nutritionist, and others who specifically follow him. They had looked at the ultrasound and the labs from the night before and at his labwork. Both looked as good or better than they had in April.

Dr. Horslen came back later in the day to talk to me and said he was very glad we’d come. He’d imagined he’d find Patrick in much worse shape after the reports he’d been getting. He did a physical examination, too, and then said that he didn’t think Patrick’s liver was really in bad shape yet. He said that the problems with his spleen were probably mostly due to the many months of infection that Patrick has been through, meaning that hopefully when he’s healthy, his spleen will improve, too.

We discussed other goals, too… including taking down Patrick’s ostomy and replacing his PICC line with a broviac line when he could have surgery. We’ve been going the rounds on the question on whether or not Patrick should have his g-tube removed, too, before portal hypertension makes it bleed and be more difficult to close. However, Dr. Horslen said he was under the impression it was unused when he recommended that, and that if we were using it, he’d be ok with us leaving it in.

It was great to talk to him and to watch him play with Patrick. Not only is he brilliant, but he has a wonderful bedside manner. It made me happy to remember that there was at least one big reason why we chose Seattle Children’s for transplant.

We also had visits that day from the nutritionist and a care coordinator. And then in the afternoon we got to have a little bit of lazy time. Child Life brought Patrick some bubbles and it was fun to watch him experience those for the first time.

When the nurse came on the night shift and Patrick was playing with her while she took vitals she frowned and said “Do you really have to go home tomorrow?” I was surprised because I’d expected to need to be there at least through the weekend… But before midnight they had me making lists of what would be needed for me to be able to go home on the 5 p.m. flight the next day.

Rounds in the morning confirmed that they felt Patrick could go… assuming that we made sure he got a visit from Dr. Reyes, his surgeon.

The rest of the morning I packed and kind of waited for word that we were really going. A volunteer came to play with Patrick so I’d have hands free. About noon, I still hadn’t heard one way or another, so my nurse started making calls for me. I looked at flights and now there was only 1 left and the price had doubled. But – the insurance company agreed they’d rather pay for extra airfare than another night in the hospital – and so I started working on booking a flight home.

Dr. Reyes came in about 1. We talked again about the importance of taking down Patrick’s ostomy. He told me a bit about starting intestinal transplants in Pittsburgh 15 years ago. (He was on the team that did the first ones.) And he explained how they’d learned that the surgery wasn’t really effective without a strong GI team behind it to make sure the patients stayed healthy. He also explained that one thing they’d learned in that time is that survival rates are better without an ostomy.

I ran our other surgical plans past him (liver biopsy, broviac line, and possibly g-tube.) He looked at me and said, “Leave the g-tube in. He’ll need in later.” So I guess that settles that.

He left and I immediately went back to booking a flight. Meanwhile, the care coordinator came and brought me a cab voucher. My nurse got Patrick ready and booked the cab while I got the ticket. And I literally hung up the phone, put away a few things, and walked out the door.

The flight home went smoothly. Howie was there to meet us. We had some adventures waiting on the way home including a flat tire, a broken jack, and eventually a tow home. But at last, we are home.

They discussed Patrick’s transplant status in their meeting yesterday. They were ready to move him back to status 1 for a small bowel. They will not yet list him for a liver. When they checked his labs, though, they found a blood culture positive for infection… so the doctors are discussing what to do now. He’s not sick and it could have been a contaminated sample. But they have to work that out before Patrick’s listing is made active again. Time will tell.

How everything changed in a moment

WARNING: THIS POST INCLUDES DETAILS OF PATRICK’S CARDIAC ARREST AND SUBSEQUENT PROBLEMS IN THE ICU, INCLUDING PICTURES.

I’ve been asked to explain several times the events of this week. I’ve decided it’s probably easiest if I just take some time to sit down and write this in a blog. It will save frequent emotional repetitions for me… preserve some of the last week while it’s still fresh in my mind… and hopefully give some answers for those who are wondering how things got to where they are. These are things that are still hard for me to remember and talk about so please don’t be hurt if I don’t want to talk more about what I’m posting in this entry.

In my last post, I wrote about a yeast infection called candida that Patrick had in his central line and in his blood. He was hospitalized for 11 days in June for that infection and then went home on antifungal medications. On July 5th his fever returned and we came back to the hospital to learn that the infection had grown back again.

In order to treat the persistent infection, they decided to return to giving him a very dangerous medication called amphotericin (a.k.a. “ampho-terrible”). He was on a very high dose but seemed to be doing ok. He always got chills while it was being given and wanted to be held and held very still, but all other signs pointed towards it doing it’s job without too much problem.

On the 15th, we were making plans to go home. We would give 3 more weeks of treatment at home to make sure the infection didn’t come back. However, before we went home, we decided to try giving the medication the same way he’d get it there. This meant shutting off his TPN (IV nutrition) for a few hours while the medicine was being administered.

He’d been doing so well that I ran home to shower and take care of a few things right before they were supposed to start the ampho. I got back an hour into it and he just didn’t seem to be tolerating it well. His hands were as cold as ice, despite several blankets and heatpacks. He was pretty restless. We tried to feed him to comfort him, but that just make him sicker.

About 3:30 p.m. he got really agitated and started to squirm and pull at his ears and cry. Then he just went limp. I called his nurse in and she called in one of the charge nurses. They took him from me and started administering CPR.

They also hit a button on the wall that pages for a “Code Blue” on the PA system. In under a minute the room was filled with people. A PCT who had cared for Patrick before came immediately to my side, as did a social worker and they stayed with me until we were delivered into the hands of another social worker in the PICU.

One doctor took charge of calling out orders while another kept track of everything that had been done. There were at least 10 people bedside helping with CPR, medications, watching vitals and I don’t know what else.

After about 15 minutes (a.k.a. an eternity) they finally revived him and they took Patrick straight to the Pediatric ICU. I followed with the social workers and his nurses in another elevator.

On the way up I finally got a hold of Brian and told him to come up and where to find us.

Normally parents are taken to a waiting room, but they knew us and how involved we are with Patrick’s care so they let us stay and watch as they placed an arterial line to monitor his blood pressure and worked to find out what happened.

The best guess is that his weakened little body was hit with a few things at once. Being off his TPN caused his blood sugar to drop. At the same time, his weakened kidneys weren’t processing potassium in the right way. When those two things hit at the same time, it created a sort of perfect storm that caused him to seize and caused his heart to stop.The next day they worked madly to stabilize him. His organs had been starved for oxygen for long enough that they’d forgotten how to work. His blood sugar was all over the charts. His potassium levels were out of control. He was anemic and his platelet count just kept dropping. His nurse that day didn’t sit down for the entire 12 hour shift.

Over the next few days things started to stabilize but there were a lot of things out of whack still. His spleen, which had already been in bad shape because of his cholestasis (liver damage) and prolonged infection, decided to protect itself by sequestering all the platelets that went through it. As a result, although they were giving multiple transfusions, his platelet count was still low and he was bleeding easily from anywhere that could bleed. His kidneys also had kind of shut down and so all of the extra fluids being poured in to give transfusions and electolytes and medicines weren’t being cleared by his body. Instead they were soaking through the veins and collecting in the other tissues of his body.

To top it all off, he had some bacteria “leak” from his gut and get into his bloodstream causing a bacterial blood infection.

Saturday they tried to extubate him, but by Sunday morning it was pretty obvious that he was having trouble breathing. X-rays showed that the fluid in his tissues had made it’s way into his lungs. And so they had to put him back on the ventilator and started to give him medicines to make his body shed the extra fluid.

We watched and prayed and waited and tried to get ready to say goodbye until Wednesday when something amazing happened. Patrick peeked at me through heavy eyelids and seemed to know that I was there… He started reaching with his hands and so I gave him a rattle… and he shook it! The next day I was actually able to get him to laugh!

As the day went on, he woke up little by little and started to play peek-a-boo and smile and hold toys. His X-rays and labwork improved. As he woke up, they started to wean him slowly off the ventilator and off the sedatives.

His throat was very swollen and we weren’t sure if the airway would stay open without the tube in. But Friday evening they decided the only way to know would be to try. So they took him off the ventilator and put him on high flow oxygen. And he was the happiest kid you could imagine.

Without the breathing tube to bother him, they were able to turn off his sedatives and we became aware of what might be another problem. We noticed as Patrick started waking up that he wasn’t focusing his eyes well… staring off into space and not always following what’s going on in the room. He’s also been holding his head and arms very still. When these issues didn’t go away when the sedatives started wearing off, we became more concerned.

Neuro came to see him and said that they think there is reason to evaluate him. He will have an MRI on Monday as well as a neurodevelopmental workup. There is a possibility, especially considering how long he was down, that Patrick’s brain was damaged. Neuro will be able to help us see if that is true… and if it is, they’ll help us do all we can to help him do the best that he can.

Regardless of how weak his body is, though… the spirit inside of it is still Patrick’s. His eyes still sparkles and he loves to play and laugh with us. It has been a gift to be able to hold him and play with him again… to know he knows us and loves us still. It breaks our hearts to see that magnificent spirit confined by such a weak little body and we hope that those limitations will be brief.

As far as long term planning- Patrick will need to stay in the ICU until he is better able to breathe on his own. He is doing it right now, but he is working very hard at it. He’s on hold for transplant until he can go back to Seattle for another evaluation. At the very least, he will probably now need a liver transplant along with the small bowel transplant. We won’t know if he’s still healthy enough for transplant, though, until he is evaluated again. We’ll continue working with the doctors and therapists and nurses here to help Patrick regain as much as he can. And the rest we’ll leave in the Lord’s hands.

We’ve always known that there was a plan for Patrick’s life. We’re just humbled to get to be the parents in that plan. We trust Heavenly Father to take care of the rest.

Transplant Pre-evaluation: Night 3 & Days 4 & 5

Boy I didn’t mean to leave you all in a cliffhanger there. May turned out to be a rough month for us. Patrick was hospitalized twice with fevers and Brian & I have been sick, too… Blogging is one of the first things to go when things get hectic in our family. I’ll blog more about our first experiences inpatient at Primary Children’s… But I left you all hanging with the story of our first inpatient experience at Seattle Children’s.

So here goes…After Patrick’s GI sprung on us the idea of admitting him to the hospital for labwork and a transfusion, we made a few calls to make sure it was approved by the insurance company, and then the transplant coordinator took us to the admitting desk.

We traded in our clinic “Parent” badges for inpatient badges on lanyards that allowed us to wander around the hospital anytime day or night. Someone from admitting met us and led us over to what would be our room for the night. A nurse came in and started to take Patrick’s history. When I handed her my printed medical fact sheet, we got instant brownie points. She took the first vitals and got us settled in the room, but then her shift ended. This is the problem we’ve witnessed a few times… Things move slower if you arrive at shift change because there’s so much else going on.Around 7:30 things finally started to progress. Because we hadn’t been planning on spending the night, there were a few medical procedures that we would have done in the hotel room that we found ourselves having to ask permission for, and even supplies for… But they finally got it all done. We met the doctor and made a tentative plan for labs to be drawn once the blood for the transfusion had arrived. The IV nurse came and took some labs for blood typing and left a peripheral IV in Patrick’s foot that they’d be able to give the transfusion through.

Around 9 things finally settled down enough for us to order some Chinese takeout. (The only restaurant open that would still deliver to the hospital at that time of night)… and after it arrived, Howie went back to the hotel room and brought back the things we’d need for the night.Our room was in the surgical unit and was really quite nice. It was a shared room but Patrick was the only patient overnight. It had a nice couch that folded down into a bed, a bathroom in the room, and a window with a pretty nice view. When it wasn’t cloudy, you could see the space needle.

Things went pretty smoothly overnight. Patrick had a really great nurse who was impressively quiet. I woke up when the blood arrived for the transfusion so that I could take care of the TPN (they allowed us to run our home pumps, providing we were always available to operate them).

The next morning they wanted to do a floroscope (contrast X-ray) of his intestines. This was to be done in two parts so they could see the top and the bottom separately. They showed up early for the first one and took us to radiology where they took a chest x-ray and then strapped him to a board on the floroscope table. The board restrained his arms, legs, and head and also allowed the radiologist to tip and turn him.Patrick didn’t like this at all, but they let Brian and I be close to comfort him (Brian was actually in charge of protecting his head when they turned the board) and Patrick eventually fell asleep during the test

They put a contrast solution in through his g-tube and took images showing it move through the stomach and out his stoma. It was interesting to watch it move through and appear on the screen.Then we were supposed to wait and see how long it took for the contrast to clear so they could see his large intestine without the small.

I was sleepy, hungry (they showed up before I could get breakfast) and frustrated at my plans for a mini-vacation being postponed. When the radiologist hinted that they might keep Patrick another night for the next floroscope to be done, that pushed me over the edge a bit… So Brian sent me to get breakfast straight from radiology and went with Patrick back to the room.

When I got back, he informed me that we’d missed rounds… fortunately we didn’t miss his GI, who came in just a few minutes after I did. He promised that they wouldn’t keep us another night, did a quick exam of Patrick, and then left.

Brian had a business lunch he’d scheduled so I stayed in the room and tried to get some sleep… Unfortunately, we got a roommate whose alarms were going off regularly and that was a mostly vain effort. The rest of the day was waiting and more waiting to see if the contrast would clear out of Patrick’s system… When it still hadn’t by 3 p.m. they finally started to work on a discharge plan. We’d come back outpatient the next day for the next test before our flight.

We finally made it out of there sometime in the late afternoon and snuck a nap in before finally getting out to play a bit.

Our friends Lindy & Kelly took us out for some authentic Italian pizza and then for Seattle’s famous Royal cupcakes. It was good to get to visit and spend some time with them. I was impressed by Lindy’s cunning as she excused herself to go to the bathroom and really went and paid both halves of the bill.

Our last morning in Seattle we got up and went to the hospital for the last time. The radiology tech from the day before was there yet again and very excited to see our names on the schedule. I asked if we could take pictures of Patrick on the table for this test and before you knew it, they’d convinced us to pose for this picture, which seems so wrong to be smiling in, but gives you an idea of what room, equipment, and our lovely lead vests were like.

Turned out to be really good we were there because I’d seen previous tests and knew that what first appeared on the screen was not the full length of large intestine and could encourage the radiologist to inject more contrast until we saw the rest. Because this organ isn’t used, it is rather narrow.

We made it away with just enough time to meet Lindy and Lauren and enjoy a nice walk in the park and a delightful lunch before rushing off to catch our plane. Obviously, it wore the kids out.

Security in Seattle didn’t go quite as smoothly as Salt Lake… I think this is because the first person who I was able to tell about Patrick’s pumps was the security agent at the metal detector who I think mistook the backpack with tubes coming out as something scary. We quickly got things sorted out, though, and they didn’t have other problems with the extra search.Patrick and his daddy slept through pretty much the entire flight and we got home without incident… But with very full mind from everything we’d learned and a much better sense of just what a big deal this all really is.

If I can manage a few more days of health in this house, I’ll post a bit more about how much this one little trip and the plan for transplant affects and will continue to affect our little family.

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 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.