Tag: funny things Patrick did

Transplant Pre-evaluation: Day 2


Monday morning I woke up at around 6 a.m. to try to get everything packed and ready for a day at the hospital. Our first appointment of the morning was at 9 a.m. and we needed to arrive early enough to check in and find our way around.Our transplant nurse, Sandy Mitchell, met us in the “Whale” (outpatient) wing of Seattle Children’s Hospital. We had to stop and get badges at a security desk at the entrance identifying us as Patrick’s parents. Then we went to a registration desk in the middle of the main floor and they got us checked in. They gave us a “purple pass” to use to check in for the rest of our clinic visits that day so we wouldn’t have to wait in line again to check in, and then gave us a pager and sent us off to the cardiology waiting area.


Patrick’s first appointment was for an EKG. They stuck probes all over his chest… so many that you could barely find a patch of visible skin and then in just a few minutes had a printout of the electrical readings of his heart. The funniest thing about all this is that we did it all with him still in his stroller. Hooray for whoever at Carter’s thought up the snap front bodysuit. Best hospital clothes every dreamed up for a baby!

Next Patrick had an echocardiogram. This is an ultrasound of his heart and it took about an hour to do. We undressed him this time and I laid on the table with him and kept him calm and entertained. Between Baby Einsteins on the TV and the cool black and white images on the monitor, though, he didn’t need my attention much. Funny the opportunities that life presents you, though. I finally got the chance to see my baby’s heartbeat on ultrasound!

After lunch, we headed upstairs and met with the nutritionist for the intestinal transplant program. She looked over Patrick’s most recent lab results, his output history, and his current diet and then she made suggestions, which I’ll be blogging about in a future post. It was great to hear he say that she was happy with how Patrick’s care is being managed and that she fully trusts our dieticians here.

Our next appointment was probably the most brutal of the day. We spent 2 hours with the transplant coordinator and she went over all aspects of the transplant. She explained what they’re looking for in a transplant patient and how the approval process works. (Basically, after the workup the transplant team meets together and decides if Patrick is a good candidate for transplant and if they’re willing to list him, or if there might be other things they can do to care for him w/o a transplant). Then she explained that Patrick, if accepted, would be followed closely by the team in Seattle and would probably make regular visits back to Seattle pre-transplant so they can monitor his care.

She explained a bit about what to expect when an organ became available. We learned that he will have 6-8 hours max to get to Seattle once we get a call saying that there is a donor organ. He’ll need to be healthy at the time, of course. The surgery will be a very long one, followed by a hospital stay of at least a month.

Most of the talk was about what to expect after transplant, though. First of all, to prevent rejection of the new intestine, his immune system will be surpressed. Because of the risk of rejection and other complications, we’ll need to live close to the hospital so that he can have regular follow-up visits, including biopsies to check for rejection. He’ll be on immunosuppressants for the rest of his life, but in that first year, at least, his immune system will be incredibly weak. We’ll have to avoid public places as much as possible and avoid exposure to any kind of illness, bacteria, or other source of bugs that can cause him problems.. His diet will be limited, and at first he’ll probably still be on TPN as he learns to eat and eventually to get enough nutrition that way, but they’ll work to slowly wean him off of that. He’ll be at risk for a lot of big scary health problems, including rejection, infection, and a certain type of cancer that can develop when the immune system is supressed. Here’s more information about the risks and ramifications of life after transplant.

Our last scheduled appointment was with pre-anesthesiology, which was really a simple one, considering that Patrick’s had surgeries before. They we headed upstairs because they’d ordered a bunch of lab test. We pushed to have labs drawn through his broviac, but they still wanted us to ask at the lab for it to be drawn by just sticking a vein. They told us to ask for their best tech, which we did. He took one look at the list of tests and then at Patrick and said that he didn’t feel comfortable drawing that much blood from a kid this size, especially through a needle, when he has a broviac line. So, he took a little blood for some blood typing, gave us a bag to collect a urine sample and sent us on our way.

We were pretty overwhelmed that day and avoided giving updates because it was so much information to process ourselves. Instead, we went out to dinner and Patrick made our evening for us.

While we were eating, I looked over and noticed that Patrick was imitating my expressions while I ate. He was making chewing faces and licking his lips when I did. Then he started to blow bubbles and, well, I decided to blow bubbles back at him. The next thing we knew, he’d learned to blow raspberries and would happily spit back at us whenever we spit at him. It was a fun game to play for the rest of the evening and week, and definitely helped to lighten the load of a HUGE day.

Firsts

We’ve been a very busy little family lately. Patrick is 5 months old now. And in the time since I last posted, we’ve had a lot of firsts. So, here are some highlights.

First giggles
Patrick learned to laugh a while ago, but we didn’t get out and out chuckles until we discovered that the kid who used to scream his head off whenever he got undressed is ticklish and loves to have his clothes off. Dressing and especially weighing are now favorite games… but it’s best when daddy just picks him up without clothes on and tickles his back.

Today we learned that you can also get belly laughs if you squish his cheeks.

First fever
Well, it all started with a cold, that turned into croup. After a week and a half trying to fight it off, Patrick got his first fever. Fortunately, it didn’t go much higher than 100.4 (38 degrees Celsius) and so we were able to have blood cultures drawn at home and his fever was gone in a day. No infection, thankfully. Just a day at home with Mom holding Patrick and taking his temperature every half an hour to make sure it hadn’t hit the danger mark yet.

First necktie
My brother Steven got married at the end of March. Although we were crazy busy working on his wedding cake and pictures, I just couldn’t help taking the opportunity to make Patrick and Brian matching neckties. We bought a tie with a matching handkerchief. Patrick thought his tie was a great toy to hold and chew on.

Oh, and a disclaimer on this picture. Patrick hates bright lights of any kind and we had studio lights on. Someday we’ll get a family picture with him not crying.

First rollover
I set Patrick down and turned my back on him for just a minute. When I turned back, he was on his tummy looking up at me as if to say “Whoa, Mom! What do I do now?” So far no signs of him having any idea how he did this or how to do it again. But we’re having much more play time on the floor to encourage him.

First haircut
After weeks of trying, we finally got time to take Patrick to my Grandpa’s house for his first haircut. In my defense (for those of you who thought I should never cut it), his hair was in his eyes and under his chin. Patrick was ok with the whole haircut idea till we hit the ticklish spot behind his ears. Finally, though, he fell asleep and we were able to finish. It’s a nice short cut.. but we hope that means it can grow for a while again before it needs another cut.

First ER visit
Last Saturday night, I noticed some bleeding under the dressing for Patrick’s central line. The line had shifted and, on closer inspection, we found that it had been pulled. It didn’t pull out, but was far enough to worry us. So – we got to make our first trip to the ER.

We were probably quite the sight there because, unlike the other families, we weren’t panicked. Central line issues are just part of life with Patrick. We’ve been planning and practicing for this trip for a while.

We arrived at 10:30 p.m. and had a bit of a wait in the waiting room because we were definitely not the most urgent case there. They took some x-rays to see the position of the line and about 1 a.m. the surgeon who placed Patrick’s line came into the room. He had been called in for an emergency appendectomy, and stopped in to see Patrick while he was there. He looked at it and said that the line was in a good position and he didn’t think it needed to be replaced on an emergency basis. Instead, we were to put antibacterial ointment on it twice a day to prevent infection, which meant lots of dressing changes, and then get a second opinion on Monday.

We were amazed, but happy, and after teaching an E.R. nurse proper technique for dressing change (yes, us teaching her), we were sent home. We got home at 3:30 a.m., connected Patrick’s feeding tube, and slept in till 11:30 a.m.

First outpatient surgery
So that brings us to Monday. About a month and a half ago we started the battle of the granulation tissue. Patrick had a patch of it next to his stoma that just kept growing back, no matter what we did. We learned to use silver nitrate to treat it, but it just kept coming back. So – we decided that maybe it was doing no harm and we’d leave it as it was.

No sooner had we made that decision than I discovered that his g-tube was surrounded by granulation tissue. A visit with the nurse practitioner in the GI clinic taught me better technique for nitrate treatments and after 10 miserable days of treatments, his G-tube site was clear of it. However, the spot by his stoma was starting to make it hard to keep a bag on and his skin was getting sorer by the day. I tried my newly practiced skills, but the tissue just kept coming back

So, we called and scheduled an appointment to have it electrocauterized. This is a minor procedure, but it’s painful and so they put babies to under so they don’t have to suffer through it. The surgeon we saw in the E.R. told us to as for follow-up at our appointment on Monday. It was still looking sore and red and swollen and the surgeon didn’t like the look of it, so he decided it was best to change the central line.

This means that they took it out of one vein and put it into another one, coming out in a different place on his chest. Again, this is something we’d been warned about, so it wasn’t a complete shock. However, we were a bit nervous and, after an already long weekend, quite tired.

The surgery went well. Patrick woke up and was able to come off the ventilator in no time at all. He was, as always, a favorite with the nurses in post-op. Brian got to reconnect his TPN in post-op, which was kind of funny to do. Our nurse was fascinated with the different equipment. We got some curious looks as Brian drew up vitamins with syringes and injected them into the IV bags.

It’s a curious thing to be the old pro parents in the hospital. I often refer to myself as a “hospital mom”. We know the routine. We’re patient with the nurses, doctors, and other staff and, although we are concerned for Patrick, we are not scared or intimidated by our surroundings as we once used to be. It’s kind of odd to feel perfectly at home in a hospital… But makes all of this more bearable.

Patrick was sore and tired for a day and still whimpers if we move his not-quite-healed shoulder the wrong way… But overall he’s back to himself. As for Howie and myself, well, we’re slowly but surely catching up on our sleep and getting back to a normal routine. And preparing for the adventures ahead.

First steps to transplant
And that brings us to the last of the firsts for this entry. We have made the first steps towards transplant evaluation for Patrick. We have appointments for April 27th and 28th at Seattle Children’s Hospital to meet with the surgeon, gastrointerologist and just about anyone else who might have anything at all to do with Patrick’s transplant. Theevalution process is big, long, and very detailed. They want to make sure that Patrick needs and will benefit from a transplant, that he’s healthy enough to have one, and that his home life lends itself to as successful of a recovery as possible. This trip is the first step in that process, and we are excited to go and learn and start building relationships there.

Patrick still has a long way to grow. He’s almost halfway to the 10 kilo weight goal. (He weighs 10 lbs 11 oz.), and so we know this visit won’t end with him on a list. But it’s a start and a step in the right direction.

And so, those are the firsts we have to report for the time being. We’re looking forward to continuing to see him learn and grow. He is so good at using his hands now! And has just started to discover that he has feet. His spirit grows by leaps and bounds every day. Most of all, he amazes us with his incredible patience and optimism.

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.