The hazards of an overly large lunch

Hi everyone-

Things are going great at the Corrigan household and we have had lots of visitors this summer. Kai has started to run now. He did have a major bout of diarrhea this June and had to spend some time in the hospital getting re-hydrated but other than that his health is excellent. Here he is making the best of it:

We had a great trip to Bryce Canyon in July but Kai was very disappointed to read the signs that said "Parents watch your children- No throwing rocks in the Canyon!" He is learning a lot about the world and the growth in his comprehension is amazing. He can put together some simple sentences like "Mom hot cup", "Dada home", and "Kai up down"- this last one while standing on his head.

We are happy to report that Kai is also growing like a weed, and up to 24 pounds now. He still has chicken legs, but they're all muscle:

Spring is in the air

Greetings from the Corrigan family! Unfortunately, spring in Utah has meant twice-weekly snow storms this April. Kai is doing great and growing up fast. Here he is putting the finishing touches on a sudoku that his Mom stalled out on:

The other thing that Kai has been having a lot of fun with is his vacuum:

That's all for now, and talk to you soon!

Kai had a very good checkup at the liver clinic this past week. He is up to 21.3 pounds. All the lab results are encouraging. Not much news about the clot in his vein, the doctors said they would have no idea it was there except that they saw it on the ultrasound.

Kai is keeping everyone very busy, and we want to thank the grandparents, friends and neighbors who have helped watch him this past month. Here he is doubling back on his own tracks:


If we hadn't been there we wouldn't believe it, so we took about twenty-five pictures of Kai getting his first taste of beets, which he scarfed down like they were candy:



















Kai got a sandbox, which he loves. Unfortunately it just snowed a foot, so we are keeping the cover on it for now. Thanks for checking on us and see you again soon!

Life is good here in Utah. Kai is enjoying more food. In the picture above he is showing off his smoothie mustache. He is also walking like a pro, getting into everything, constantly touching gross things and pulling dirt out of our plants.

Kai loves playing outside. He will finally let us carry him in the backpack. We had a great day hiking above the inversion.

Medically we are grateful to be dealing with normal baby stuff. Diarrhea, fever, busted lip, chipped tooth, et cetera. We can handle this! His body appears to be compensating for the clot in Kai's portal vein. Hopefully that continues and it becomes something we don't have to worry about too much.

Kai's trip east

Until last month, Kai had never left Utah. In fact, he had never been farther from home than Ikea. We are very thankful that he was healthy enough to make it all the way across the country to see his great grandmothers and lots of other interested parties in his fathers home state of Virginia. He spent his first christmas and his first birthday at his grandparents house there. It was a fantastic trip, and we can't thank everyone enough who made it happen.

Surprise! You're staying at the hospital...

We have had many friends go to the hospital for a check-up and end up checking-in, but that only happened to Kai right before his transplant. Now we know to bring some extra skivvies just in case.

Kate brought Kai in last tuesday for an ultrasound, because his platelets were dropping, they were concerned about blood flow through his liver. A CT scan confirmed that he does have a partial clot in his portal vein. This sounds very bad, but there are several options for treatment.

The first thing that we tried was a heavy dose of heparin, an IV blood thinner. Things went swimmingly for almost 24 hours and then Kai started pooping blood and throwing up blood (more or less simultaneously). His doctors shut off the drip right away and spent Thursday doing some more tests and consultations with all the specialists.

Because of the great benefits that many patients get from heparin, his team decided it was worth trying again with a low dose and some very vigilant monitoring (i.e. lots of blood draws). Unfortunately the result was the same and Saturday night was probably the last heparin that Kai will be getting for a while. He stayed for observation Sunday and came home Monday.

As usual Kai enjoyed the hospital except for the poking and prodding. His repertoire of smiles is bigger than ever and he got reacquainted with several of the nurses who helped his recovery in July and August. He spent a lot of time cruising around in a little flintstones-style police car. I don't know where he learned to drive since he always rides backwards in real cars. He did a good job with the steering wheel but was very prone to unnecessary honking.

The next step is to try an oral blood thinner, coumadin, which works on a different clotting pathway. We're giving Kai's gut a chance to heal up for a week first. If that doesn't work there are more invasive ways to deal with the clot if that becomes necessary, but ideally the medicinal route will pan out.

Thanks very much to Grandpa and Granddad (Bill and Mike). Bill was here last week to help Kate during Kai's hospital stay, as Paul was out of town for work. Mike will be here to lend a hand this week. Thanks Jackie, Mike, Sonja, Amy and all the other friends who lent a hand!

Look out, world

Life has been getting easier in the Corrigan house. Kai had his Broviac (central line) removed, so for the first time in months he is completely free of tubes.

We took Kai on his first farm adventure to our CSA's free pumpkin picking this weekend. He napped the whole way there, so he was a little flummoxed to wake up in the land of the pumpkins, but he took it in a lot better stride than Dorothy did.

Kai plays most of his waking hours; blocks, books, balls, boxes, and paper in any form are his favorite toys. He really likes pulling up to stand on the edge of the couch, and it may be 50/50 whether he bothers to crawl or just start walking. He can do the 'worm' and scoot around but rarely has the patience to travel from room to room that way.

recycled parts

Things continue to go well for Kai. We have been able to do more and more things like taking Kai on hikes. We are going down to every other week liver clinic appointments and once a week lab draws. We feel very lucky. It is two months after transplant both Kai and Paul have endless energy. This weekend was another liver family picnic. It was great to see how quickly kids progress post transplant and we are praying for our friend Paige and her family while they wait for a liver. Thank you Lai family for the cute transplant t-shirt (Kai is modeling in the picture).

Babies 'R' cute

Kai's phenomenal recovery is continuing. He's rolling all over the place and looking dangerously close to crawling any day now. He now has six teeth, the front four on the top are all coming in simultaneously. Kai's labs and checkups have been going well. The only hiccup is a nagging diaper rash that comes and goes seemingly at random. We have tried about every different type of oobleck they make for such a problem, over the counter and prescription. Some evenings he has to hang out bare-butted on a towel for a few hours and that helps.

When we stop and reflect on everything that has happened, having a healthy boy again is a miracle. But our moments for reflection are few and far between; Kai considers every day a spectacular new adventure, and keeping up with him is about all we have time to do. Several people have commented about how chubby Kai looks. I mentioned to our friend Aashish that some of this can be attributed to the steroid that he takes. He replied that he is looking forward to seeing Kai break Barry Bonds' record. So are we.

Kai's Granny Julia headed back to Wisconsin this week, and we all miss her. It was great to have her here helping Kai heal up. Thanks Granny!

That was easy...

Kai only spent the one night in the hospital. The biopsy did not show any rejection, which is a good thing. Still not sure what is causing his liver numbers to be elevated, but possibly just some inflammation.

In addition to downing about forty ounces of milk, Kai has started eating three squares a day. He starts each meal with a four or five cheerio appetizer, moves on to a few spoonfuls of baby food, and washes it all down by drinking from a sippy cup and then squirting that liquid on his chair and clothes.

Kai's growth has been amazing. You can see his chubby cheeks are back in full effect, and his arms and legs are following suit closely behind. Kate gave him his first haircut this week, which was an exercise in patience. He can sit as long as he wants to- the only problem is when he decides it's enough, he has no graceful exit strategy. He fell asleep on a car ride today, here he is snoozing:

quick trip...hopefully

We are back at Primary Children's today. Kai had a liver biopsy to investigate possible causes for his liver function tests, ALT and AST, going up. We should have some answers tomorrow when pathology can analyze the sample. The procedure went quickly and smoothly, we are now up on the floor recovering. He'll be here at least overnight for observation. It seems the hardest thing for Kai was being NPO for 14 hours. When he was allowed to eat shortly after waking up he chugged a pint of milk and is now sleeping that off.

home again

After one month in the hospital Kai was finally discharged on Monday. The transition has been a little easier than I expected. His med schedule is actually easier than before the transplant. He is quickly re-learning most of his baby skills.

Though things are going really well there have been a few bumps in the road. Kai is on a nursing strike, so most of his food was going through his NG tube. He warmed up to bottles again on Friday, so maybe the tube can come out soon. He is more willing to experiment with drinking out of a cup and eating anything that he can feed himself. He ate two cheerios this morning, but it takes 3 cheerios to add up to one calorie, so cereal will not be a major contributor to his nutrition for a while yet...

Paul's recovery has gone very well. He is napping a few hours a day, but he will attempt to return to work on Monday.


We never could have done this transplant without the help, support, and prayers of so many people. The care that Kai and Paul received at Primary Children's Medical Center was superlative. There is no way to properly thank the army of Nurses and Doctors who helped them get better, but we did bring chocolate. All the grandparents have taken turns doing many shifts of baby soothing, dishwashing, and errand running- thank you Julia, Bill, MaryAnn, and Mike. So many people have sent their love and so many offers of help have come from friends and neighbors far and wide. Thanks everyone! Natural Bridge VA- we promise to visit!

Kai made a ton of progress this week. He is spending more and more time out of bed. They have stopped a lot of medicine and equipment. He's off the monitors (no more infernal beeping), finished with IV nutrition, his bandages are off and his scar is 'airing out', his doses of painkiller are getting farther apart, and he has lots of energy and plays all the time.

Eating is the big challenge we are working on now. Kai gets enough calories by receiving milk continuously through his feeding tube. In addition to that, he is allowed to drink from a bottle at any time, but hasn't been very hungry. Because he had nothing by mouth for so long, his stomach isn't quite ready for normal sized meals. Today he is shifting from a continuous drip to several 'boluses' of higher volume. The drip will be off for a few hours in between each bolus. Hopefully this will get him back to feeling hungry. We expect he will need the tube for a few more weeks at least, but that is something we can manage at home.

It's good to have a liver

These shots show how hard it can be to get comfortable. Even though his legs are straight up in the air that doesn't mean Kai is awake. He is still recovering well, but slowly. It took Kai a while to adjust to having his drains out and being closed up. His fluid balance went up and down rapidly but seems to be under control now. Same with his need for pain medication. Breathing on his own is just a little too challenging, so he is getting oxygen from a nasal cannula. Otherwise his liver and kidneys are doing excellent and his color looks normal.

Kai's rehab plan includes:

Changing his position frequently in bed.

Being held on people's laps as tolerated.

Short periods of sitting in a baby chair.

Some food (a slow drip through his nasal feeding tube)

Eating by mouth has been pushed back a few days to give his diuretics the best chance to work.

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We finally made it out of the PICU and are enjoying the quiet atmosphere of the Immune Compromised unit. Kai had his abdomen closed up today. Hopefully for good. Now we just have to need wait for his Prograf levels (anti-rejection medicine) to get tweaked to the right spot. He is getting back to his active cheerful self, so knock on wood that this continues.
Thank you so much to our friends and family who have gone out of their way to help remind us there is life outside the hospital.

Latest photos of Kai

Kai is spending a lot more time awake and alert these past three days. We even got several smiles out of him, but not on camera. He is having fun batting at his mobile and reading books with Mom, Dad and Grandparents. His pain is being well controlled with much less medicine than he needed last week. The oxygen is off for now. He hasn't started eating yet; they will start with food through his nasogastral tube and it may be a while before he does bottles again. We are in a holding pattern waiting for his abdomen to be closed up. It's not good to squeeze the liver too much, so that may be another week out or more. The red line you can see across his chest is one of his drain tubes, his surgical scar is in the very bottom right of the picture.

Heading into week two

Kai has had ups and downs in the last few days. His new liver is still working very well. Yesterday his surgeons were able to close him up about two-thirds of the way. His skin will stretch and his liver will shrink (it's more than adequately sized), and hopefully they can finish that job next week. They also removed his PICC line and installed a Broviac, which is a special type of IV. (Double black diamond territory)

Kai had a fever on Sunday night, a peaceful Monday, and another fever last night. That bout has ended too, thankfully. The latest word at 5:50 pm is his temperature is down to 36.1 c, the low end of normal. They have cultured all of his IV lines and drains where they enter his body and have ruled them out as a probable infection source. Even though he was in a nice clean OR, the procedure to close him up yesterday may have introduced just enough bacteria from his skin to aggravate a baby with a poor immune system. It's also possible that his immunosuppression drugs could set off a fever themselves. No one is certain right now. An infectious disease specialist came by today to review his case and order some more tests.

The second week of a transplant is apparently when the body tries hardest to reject the new organ, so he will be receiving stronger doses of immunosuppression in the coming days. This week he will probably move from the ICU to the immune compromised ward (wash your hands!)

Paul was discharged yesterday and is recuperating well at home, except a brief visit to see Kai. Check out Kai's family at the bottom of the page. We would be happy to put up anyone and everyone else who would like to show their support. Thanks for checking on us!

Two Days Post-Op

This is Paul's dad with a guest blog. Kai continues to do well. He is pretty much a normal pink baby color, except for his eyes and even they are much less yellow. He is breathing by himself and had his eyes open, watching Paul (who we wheeled down to the ICU) play peekaboo with him. Paul is also doing great. Paul and Kai had matching IV towers in the ICU and Kai was the clear winner, with way more drips and medications, but even his tower was thinning out a bit.

Paul's liver part turned out to be a bit bigger than expected, so Kai has to wait until all the swelling goes down before they can close up his surgery opening. This could be another week or so.

post-surgery

Hi, this is Nora, Paul's sister, doing some guest blogging. Paul and Kai are both doing fine after the transplant surgery. Kai is starting to move around a little, and he opened his eyes (very briefly) when I went to see him this morning, despite the fact that he's still pretty doped up. He's looking less jaundiced already (or so I'm told -- I haven't seen him since he was less than a week old, so I don't have much basis for comparison).