Short Gut Syndrome – Page 5

The devil you know vs. the devil you don’t

Patrick and I had the most frustrating of mornings yesterday. Got up as usual and started out happy enough, but then it was time to connect his 8 a.m. antibiotic. I went to withdraw the ethanol lock out of his line and it wouldn’t come. Tried to flush. Wouldn’t budge.

So I grabbed a dose of Cathflo (the super declotting agent for central lines that I am learning I am VERY lucky to be allowed to administer by myself at home.) Worked it into the line, which took me almost half an hour. I left it in for half an hour.. drew back and the line drew back beautifully.

Tried to flush, and nothing. Let go, and the syringe filled with blood.

Not good. I tried several more times and just got the same result. The antibiotic was due. The TPN was running. The two can’t go through the same tube at the same time. And I was stuck.

So I called the hospital and asked for the GI on call, but they wouldn’t give them to me because it was almost 9 a.m. and the GI clinic opened at 9. So I called Patrick’s nurse, and she was stumped. She called the department at the hospital that specialized in central line repairs, and they were stumped.

Finally, Dr. Jackson’s nurse got word I was calling and called me back. And she was stumped.

It really seemed like the blood was flowing backwards in the line.. out instead of in. Which either meant a slipped placement.. or a line broken under the skin.

Both line killers.

So – while they did their research, I did the only thing I could think. I said a prayer. I put one more dose of TPA in the line. I forwarded our home number to my cell phone. Then, I packed Patrick up and we went to mommy-and-me exercise class. Makes sense, right? We needed some normal, and some distraction. And it was his last guaranteed chance to go to class before school.

Halfway through exercise class, as I was sweating and huffing and puffing… in the middle of the popcorn song where we jump all around the room pretending to be popcorn… my phone rang.

It was Dr. Jackson’s nurse telling me that they’d arranged an admission to the Rapid Treatment Unit. The plan was to evaluate the problem, do an x-ray if possible, have the IV team look at things. And then, she said, it didn’t look good.

I hung up and stayed till the end of exercise class. Why not?

Then we came home, I showered, and I packed a suitcase to see us through a one day hospital stay and a likely surgery.

We rushed up the hospital, lugged our way into the RTU, got vitals, met our nurse…

And then tested the line.

And the 2nd dose of TPA had fixed the problem. Best bet? That the clot was working like a stopper that allowed blood to flow in, but not to flush. Kind of the opposite of usual line function. And that it was blood trapped in the line that was flowing back after attempts to flush… Not the line bleeding as it appeared.

We called it a nurse visit. The doctor came to “not” consult with me, so we wouldn’t be billed for the service. He’s seen us struggle to keep this malfunctioning line going for the past 15 months.

I asked him if he’d give up and replace it yet. Knowing the risks of lost access for Patrick.

He shrugged and told me, “It’s the devil you know versus the devil you don’t.”

How often that is true with Short Gut. How often do we weigh the choice between the familiar but uncomfortable present situation and the risk of an uncertain outcome?

The choice about transplant is certainly that kind of a thing.

It takes a lot of faith and prayer and hope and stepping into the darkness to move along this journey.

And a lot of mornings derailed by emergency hospital admissions that leave dirty dishes and dirty laundry and a mountain of other unfinished tasks while we wrestle with uglier demons.

Brian and I have been doing a lot of pondering and praying to know what is the best choice about this troublesome line.

If you’re praying for us, that would be a good thing to pray for. For us to know whether to keep fighting with this line or take the risk of swapping it out in the hopes of fewer infections and clots and frustrating mornings.

Watch out for waterlemons

A week ago Saturday, we decided to go out for breakfast at Paradise Bakery. Because of nut and egg allergies, we brought his breakfast along, but when he asked to play with my fruit cup (practicing his fork skills) I agreed.

He picked up a piece of pineapple, dropped it, and gave a very big scowl. I looked to see what was wrong and discovered a long, thin cut in his finger. I thought maybe one of the finger pricks from the previous weeks’ hospital stay hadn’t healed and was infected.

So, when we got home, I put some neosporin on it, and a bandaid. That night, when I changed the bandaid, Brian pointed out that the rest of that fingertip and the one next to it looked like they were burned. We asked Patrick how he got hurt. He said the “waterlemon” poked him.

We kept doing bandaids and neosporin. And then a couple of days later, I bumped Patrick’s other hand and got the same reaction. He jumped, pulled back, scowled, then started to cry. I looked and, lo and behold, the other hand was dry and cracking too. All of his fingers looked calloused, dry, flaking and cracking.

I panicked a little bit. TPN dependence means risks of nutritional deficiencies. Zinc deficiency causes horrible flaking skin ulcers. Fatty acid deficiency can cause dry skin, but only once it’s severe enough that you also start wondering about brain development.

I called his dietitian and made her check his labs. They were ok, except a note about low Omega-6 fatty acids. The doctor had just said he thought it was ok. She suggested I rub Patrick in safflower oil.

This created quite a quandary for me. Last time I tried safflower oil in Patrick’s diet he had an allergic reaction because all culinary oils are processed on the same equipment so safflower oil can have peanut oil and almond oil in it.

So I decided to start using his regular eczema cream and keep asking.

I got a good picture of the problem and sent it to, well, everyone. His nurse suggested an allergy to the bandaids or neosporin. His GI and I had a long talk where we discussed ways to get him more fatty acids from increasing the lipids in his TPN to feeding him microlipids through the g-tube, to rubbing him in it. (Which I put more effort into. We stopped at Sprouts market that night and read every label until I found a lotion that had safflower oil, but nothing else he might be allergic to.) Finally, the University of Nebraska called back and said that Patrick’s labs had looked good in February and could not have possibly tanked that quickly and to stop worrying about deficiency.

So then I turned to Dr. Google. I try not to research symptoms on the internet. However, Google Images is a wonderful took for looking up skin conditions. I looked up pictures of zinc and fatty acid deficiency and they didn’t match. Then I looked up pictures of cracking fingertips and I found it…

Fingertip eczema. Caused by… a systemic allergic reaction due to prolonged exposure to an allergen.

I ditched the bandaids. Switched to hydrocortisone cream and aquaphor… kept rubbing Patrick in the safflower lotion for good measure because of the other deficiency anyway. And I stopped cheating Patrick on his benadryl pretreatment.

Because Patrick is allergic to vancomycin, the antibiotic they started him on 3 weeks ago, he is supposed to get a very high dose of benadryl before every dose of antibiotic. But that high dose does a number on his gut, not to mention his concentration and his mood. So when we came home from the hospital, I started backing off the dose.

So we upped the dose.. and then we got hospitalized and they took him back up to the full prescription strength. And they made him stay on vanco a few extra days in case that was the cause of the fevers, and then finally let it be discontinued.

Patrick’s fingers almost immediately started to get better. They are still dry and we are still doing a good lotion regimen a few times a day. Patrick voted down a few brands, but is really in love with Aquaphor (“Apa-poh”) and several times a day will ask permission to just dip his fingers in it. This is helping a lot.

Poor little kid.. as if there weren’t already enough other things to worry about this month. And I still can’t convince him to lay hands on another “waterlemon.”

We have bacteria species, and a plan to try to stay at home

From our hospital stay 2 weeks ago: Playing with another family from our support group. Daddies are awesome!

We’ve been home for a couple of days now. By Sunday evening, Patrick was feeling 100 times better. He started talking and playing again. We went to the playroom and raced cars down their giant car ramps. His cousins came to visit and while we waited for them, he was playing around in the lobby by walking every silly way he could think of, including with his eyes covered.

But the night shift rolled around and, yet again, they didn’t send up his melatonin on time. And the pumps didn’t like running TPN, lipids, and antibiotics all at once. And he didn’t get to sleep till 11. And then he woke up vomiting (because his g-tube had to be clamped because the medications had been late).. not once, but twice. Only the melatonin had come up by then and so he couldn’t wake up all the way and it was well, just sad..

From two weeks ago: Pushing Daddy in a wheelchair as a form of occupational therapy. Heavy work=happier child

And by morning, I was fed up. It’s time to go home when hospital routine is making him feel sicker instead of better. So I asked them if we could finish up care at home. And they agreed. (With some cautions, but agreed.)

And so we came home and the antibiotic thankfully was due just once a day.. and so we all got to visit with Brian’s family who has been in town visiting, and then we got to go to bed and sleep at night. First time in 3 weeks that I didn’t have to be up at midnight for antibiotics.

And we’ve all been feeling much better.

One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he's allowed to borrow a bike. He learned to ride a tricycle during that hospital stay. — One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he’s allowed to borrow a bike. He learned to ride a tricycle during that hospital stay.

Well, except for Patrick this morning. Again today, naughty behavior has been emerging. And the nausea, which never completely went away, seems to be getting worse. And I was really beginning to worry.

And then the phone rang. It was Patrick’s pharmacist. AT LAST they have species on the bacteria. Our two best-friend bacterias… Klebsiella Oxytoca and Citrobacter. The drug-resistant bacteria that have set up shop in Patrick’s gut. Only this time, the Klebsiella is no longer susceptible to Rocefen, the antibiotic that I threw a fit to get them to put Patrick on. It’s mutated some and that drug won’t work anymore.

One of the best ways to pass time when you don't feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same. — One of the best ways to pass time when you don’t feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same.

So tonight, they’ll be sending me a new antibiotic called ertapenem. And they’ll be sending a nurse to keep and eye on Patrick during his first dose.

And hopefully by tomorrow, he’ll be feeling better.

Primary Children's Hospital has it's own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here's Patrick enjoying singing time. — Primary Children’s Hospital has it’s own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here’s Patrick enjoying singing time.

But I’m still happy that we’re home. Because at least he’s sleeping through the night. And I can keep a better routine so he doesn’t feel as sick. The good news is that this new medicine can still be given just twice a day and we can all still get some sleep. I certainly trust that things will work more smoothly with our GI writing orders instead of an intern, and our home care pharmacy and home nurse helping provide his care. No missed or forgotten doses of medications. And there is still a tiny chance that I can catch up on dishes and laundry. And feed us something other than cafeteria food. I think we are all happier at home. Even if Patrick does miss visits from Child Life with fun new toys to play with.

One of Patrick’s favorite people in the whole world: Jo from child life. She is the sunshine of every hospital stay.

Not again!

Here’s the ultimate test of the value of the switch to wordpress. I am trying a quick blog to update everyone everywhere about what’s going on.

20130718_060340 — Taken a couple of weeks ago, during our last admission. He’s watching the construction going on outside the window.

So, quick version.. About 3 weeks ago Patrick had a really bad few days. His stomach was upset. He had a hard time concentrating. He was in a BAD mood and into everything. It went on long enough that even though his labwork didn’t show any signs of trouble, I requested a set of blood cultures and skipped a nap to drive all the way to the hospital to get them done.

And then, that night, as I was getting Patrick ready for bed, I checked his temperature and discovered he had a fever. We called his doctor and came up to the hospital.

We were here 6 days, our longest stay in over a year, because it took forever to get the infection to respond to the treatment. (For various reasons I may or may not expound on later.) And because it took an extra long time to get the right antibiotic dose. It was a frustrating stay because he never got horribly sick, but he had staph epi in his line and it’s notoriously hard to clear. And the longer it took to clear, the more the doctors wanted to try a different approach (understandably.)

And, well, because the night shift just couldn’t manage to help him sleep through the night. But that’s a gripe for another day.

I’m afraid I jinxed us. One of the dramatic changes the doctors wanted to do to be sure to clear the infection was to switch from using ethanol to using vancomycin, a targeted antibiotic, to protect the line.

I raised more than a little bit of a stink. I insisted that we still use ethanol at least 4 hours a day. I made the attending come discuss it with me. And I won.

But i felt guilty. And when we went home, I did my best to follow doctors orders and put a heavy preference on vanco locks over ethanol.

Fastforward to today. For the 2 weeks since bringing Patrick home, I’ve been giving antibiotics every 8 hours.. including a dose at midnight. Tonight was supposed to be our last night.

Patrick’s cousins are in town and we’ve been having a grand family party. Aquarium trip. Hiking in the mountains. And today they rented a bounce house.

Patrick and I were very excited about today. Only one matter of business to take care of. A visit to his physical therapist. We have been waiting for MONTHS for a new DAFO (brace) for his foot to help with his worsening muscle tightness. And, Patrick has been dying to show his therapist how he’s learned to ride a tricycle.

Well – we got to the therapy office. And we got in the elevator. And Patrick’s breathing got a little shallow. And he gave a little shiver. And a hundred memories rushed back into my mind and I knew something was wrong. I remembered what a bad and out of sorts day he had yesterday, how his tummy was upset, how he had a hard time concentrating and kept getting into trouble.

So the elevator doors opened and I didn’t get off. Pushed the down button and went straight to the family clinic on the first floor. And I asked for a thermometer.

A nurse came out and checked and at first his temp was normal, but she rechecked and got 99.0. In his low ear.

So, we hopped in the elevator and went back upstairs to cancel our appointment.

Patrick was distraught. He didn’t want to be sick. He wanted to see Miss Holly.

Well, Miss Holly came out and I explained what was happening and she explained that the brace company had rejected the cast we’d sent as a model for his foot and asked her to recast. If we missed this appointment, it would be another month without a brace.

So – we made a deal. I’d call the hospital, she’d cast his foot to get a mold for the brace. Patrick would, well, try to cry more quietly.

By the time we left the therapy office, Patrick was sold on going to the hospital. So, we hurried home. Checked a temp. 101.8 this time. 15 minutes later. I grabbed the transplant go bag because I didn’t want to waste time packing, gave him some tylenol, and we booked it up to the ER.

The tylenol worked. Mostly. His fever was the same when we arrived.

And so, here we are. We are antibiotics to cover all the major bacteria, and an antifungal. I threw a bit of a momma bear tantrum when they tried to tell me they didn’t think we needed the antibiotic that kills his recurring kleibsiella bacteria.

He doesn’t feel well. He is tired. He only napped for 10 minutes. We have tried going for walks and in the end, he just prefers to lay in the bed.

And so, here we are. Hoping culture results are fast and clear. Hoping we are giving him the right drugs. Wondering how we’re going to make tomorrow bearable.

Just like every summer.

Mid-July rolls around and I start to get nervous. And I hate that we are here because I don’t want to be superstitious about certain months. But for some reason, summers are always hard for Patrick.

And so, I’m quite discouraged tonight. I am sad to be missing out on my first-of-the season tomatoes that I harvested this week and the green beans on my plants waiting for harvest and the great big yummy yellow zucchini sitting in the fridge. I hate that Patrick and I had finally hit our stride again, finally had a routine again, finally were catching up on the chores again. (Does anyone want to iron a month’s worth of dress shirts?)… And now we are starting over all over again.

But at least it is 10:30 and I can go to sleep because tonight giving the antibiotics on time is someone else’s responsibility.

Holiday fun

We’ve been doing our best to make the most of the holiday season. How fun it is to have a 2-year-old this year! Christmas is so magical for a child that age… and it’s the littest things that make the most difference. For example, Patrick’s been glued to the Christmas lights we hung on our house since the night we put them up. Now, given, we have some very cool lights this year – LED color changing icicles… He watches them and smiles whenever he sees them.

He loves the tree, too.. especially the ornaments.. and I’m finding that my investment in Ikea’s unbreakable ornaments has been a blessing because then he can take them off and carry them around without worrying me, and then we put new hooks on and hang them back up. (One disclaimer – they do break if you push a full toybox into them repeatedly.)

Of course, we took him to the Festival of Trees again this year. Last year, this really was a test of his patience. But this year, he loved the trees – especially the tree covered in Elmo dolls, and any tree with cars or trains under it. He wasn’t so happy that we made him stay in his stroller so we couldn’t play with the toys in the displays and did his best to sweet talk someone else into taking him out.

We did our best to see Santa there, too… but we arrived as Santa went on break and by the time he’d made it through the crowd (giving hugs and candy canes along the way) we’d run out of time.

After weeks of snow, we had some unseasonably nice weather last week. Monday night I realized that it was probably the warmest evening we’d get all year. So, I called Brian at work and we decided to seize the opportunity to see some Christmas lights.

I made some taco soup and we picnicked in Daddy’s cubicle. For the record, soup is Patrick’s current favorite food. We stick to clear, mild broths. I’m not sure it’s the best thing for his tummy, but it he loves it and there are worse things for him, and so I let him have it from time to time. He makes a little sipping sound to ask for it and will eat until there isn’t a drop left.

After eating, we bundled up. I made a little tube warmer for Patrick because if the fluid in the IV’s gets cold on the way into his body, Patrick gets chilled really quickly. It takes about 5 minutes to do the 10 feet of velcro, but it seems to work. Then we added coat and hat and gloves. Patrick was more than happy to stay bundled and warm.

We’ve got a zoo pass, so Patrick is familiar with the zoo… but looked a bit confused when we arrived there after dark.

And then, when we walked in and saw the lights, his eyes got big and he grinned from ear to ear!

Posing with some of the lights (the little grey thing by his back is end of the tube warmer)

They had a really impressive display. Lots of lights everywhere, including full habitat scenes. And, where possible, we were able to walk in and see some real animals… mostly fast asleep. The leopard was sleeping sprawled in plain sight, but woke up to give us all a nasty look for interrupting his rest. And did you know that monkeys sleep all in a pile in the top of a tree?

Afterwards, we stopped in the gift shop to pick and ornament for our tree and let Patrick pick out a stuffed animal, too, that he’ll get on Christmas.

The next night, we finally got to see Santa. HopeKids had a big Christmas party for the kids. So big, in fact, that it took 3 sessions to accomodate everyone and there was still a huge crowd.

If I haven’t explained it before, HopeKids is an organization that plans free activities for kids with terminal illnesses. The idea is that if you have something to look forward to, then you have something to hope for and something to live for.

Well, we can’t really explain plans to Patrick. However, he’s beginning to understand one thing… the HopeKids shirt means fun is coming. I went to get him ready to go and pulled out two choices – a Christmas shirt because I knew photos would be taken… or the HopeKids shirt. Patrick caught one glimpse of the shirt and started to beg to wear it. When I tried just putting the Christmas shirt on him, he melted into tears.

This is what happens when mom says "No, stay there a little bit longer" — This is what happens when mom says “No, stay there a little bit longer”

Finally, I conceded and let him wear both. Which made him happy enough until that night when it was time for PJ’s and he fell apart again because I made him take it off… he carried it with him the rest of the night.

Why so much fuss about a shirt? Because Patrick knows that if we get out our HopeKids shirts… especially if we all wear them… that something really fun is about to happen.

This time, it came in the form of the biggest and most kid centered Christmas party I’ve ever seen. There were photographers, of course… and Christmas presents. (They let the kids pick their own… Patrick picked a fire truck). There was a magician and a juggler and pizza and so very, very many crafts.

Patrick looks pretty unhappy to see Santa in the picture we took. I think that’s cuz we put him on Santa’s lap and then made him stay there while we took pictures. As the night wore on, Santa came back a few times and each time, Patrick was less nervous. By the end, Santa could come get a high 5 or a pound on the fist and even a little grin.

Amazingly, Patrick even enjoyed the show. Usually he’s pretty unhappy when crowds laugh or applaud, but this time, he clapped and pretended to laugh right with everyone else, though I’m not sure that he really could see what we were all laughing at.

There’s still more Christmas fun to be had. We are almost caught up with shopping and half done wrapping presents. We’ve baked our goodies and visited the neighbors. Tomorrow is Patrick’s last appointment for the rest of the month… We had a busy couple of weeks trying to fit everyone in before offices closed for the holidays. But I’m hoping now it will be worth it as we have nothing left to do but play and enjoy the family and the holiday.

The never list

Some people keep a bucket list of things they want to do. I have the opposite.. A never list. Things I hope never to experience.

Monday following Thanksgiving, we woke up to Patrick making the weirdest whining noise. Brian got up to check and at first couldn’t find anything wrong. But Patrick just kept whining, so Brian got a flashlight and went hunting. Then he spotted the problem – blood! Patrick had picked off his central line dressing at some point during the night and at one point or another had snagged the line and broken it. He was soaked in TPN from the side that was running and bleeding from the broken line on the other side.

I’d prefer never to have my son break a line at 2:30 a.m. I hate to imagine what would have happened had he slept through it!

At least, though, I’d just been in his room 15 minutes before and knew the line had been ok then.

It broke at a previous repair and both lumens were damaged, so we knew we needed to get the line repaired ASAP to avoid infection, hypoglycemia, or other problems.

I clamped off and cleaned the end of the line and covered it with a sterile dressing. Then, we got dressed, packed, and loaded into the car.

Brian drove because it was snowing.. actually, by that point it had been snowing for almost 24 hours without stopping. The roads were ice and snow.. the worst driving day of the year so far. The plows couldn’t stay ahead of it. And we were headed up to the hospital on the hill. I often wonder who had the brilliant idea to put two of the region’s premier hospitals up in the foothills of the Rockies.

I have dreaded the idea of having to get to the hospital in an emergency in the snow. Never would have been enough on that one, too.

But, taking surface streets in our 4 wheel drive jeep, we made it there and in plenty of time.

We’d called ahead, so they had a room waiting for us… but as it was a the middle of the night on a holiday weekend… we knew that things could still be slow.

We just didn’t know how much that would affect us.

They’d called ahead for a repair kit for Patrick’s line when we called to say we were on our way. However, lines don’t usually break in the middle of the night when children are supposed to be still and sleeping. So the night staff wasn’t sure where to look. They just knew they couldn’t find one in the usual place.

They said wait for materials to get in at 6 a.m. So we waited. Patrick’s blood sugar was holding OK and we were sleepy so we put on some Elmo and went to sleep.

At 6, they still couldn’t find anything. The computers said there were 4 in stock. But they couldn’t find them. They said, “We’ll keep looking.”

By 9, materials confirmed that they didn’t have a repair kit in stock. This is definitely a scenario I NEVER wanted to encounter! If a line isn’t repaired immediately a lot of things can go wrong. Blood can clot in the remaining portion of the line. Bacteria can get in through the exposed open end. Basically, we could lose the line if we waited to long.

And that’s not considering the effects for Patrick of going without TPN. The best case scenario would require staying in the hospital with maintenance fluid running through a peripheral IV.

This is when I started getting creative. Remember last summer when Patrick broke his line 3 times in 3 days? And I had to repair the line in the middle of Idaho? Well, I didn’t want to go all the way to Yellowstone without the means to repair the line if it broke again. So I started saving the unused pieces of repair kits. Every kit has 3 different repair tubes for different types of breaks, so I kept all the unused pieces still in their sterile packaging.

And, wanting to be prepared for emergencies, I never threw them away.

So, since the hospital didn’t have anything to fix the line with, we sent poor Brian back out in the storm to get my makeshift repair kit.

Finally, around 10:30 a.m., he returned with the necessary supplies and IV team came and did the repair. By then, Patrick had been without TPN long enough that he was thirsty and tired and his blood sugar was starting to fall. So, we asked for a peripheral IV to be placed so they could give him some fluids and sugars while we waited for the glue to dry.
We watched some more Elmo, played with blocks and cars, and slept as much as we could. Patrick was tired enough that he agreed to cuddle up and sleep next to me in a big bed.. which I was grateful for, as I was exhausted, too.

At 2:45 p.m., the glue was finally dry enough to restart the TPN and we were discharged 12 hours after the adventure started.

Amazingly, the line worked and he so far is infection free. This is even more amazing, since 2 days later his tubing came unscrewed and I woke yet again to find him sleeping in a puddle of blood. Brian was away on business that day… (Another time never would have been enough. It took 96 oz. of hydrogen peroxide to get the stains out of his clothes and sheets. And yet, his blood count that evening was completely normal.)

The only thing wrong really since our adventure has been some really bad stomach upset again, the kind he usually only gets when he has bad bacterial overgrowth, a virus, or an infection. We’re treating for the bacteria and watching for the others. So far, two lab tests have confirmed his white counts are normal, a sign that there is no infection or illness in his body… So we are just hoping that the antibiotics help his gut get back to “normal” soon.

I know we’ve been really spoiled lately with good health. But I’d still prefer not to whiddle down my “never” list any more in the near future, as far as Patrick’s health is concerned at least.

Adoption memories

We had Patrick’s g-tube study done. (Great results! Nothing wrong. Just a slightly upward angle that makes positioning the tube tricky.) As part of the history, they asked when the gastrostomy (g-tube hole) was created and I realized last night that I could have answered “exactly two years ago.”

Why do I remember that? Well, because exactly two years ago yesterday, the court officially named us as Patrick’s legal guardians. It was the best birthday present I’ve ever gotten.

A friend of mine has been doing something special this month on her blog. Because it’s national adoption awareness month, she’s been posting daily adoption related posts. She invited me to be a guest blogger and, by coincidence, will be running my post today… a very significant 2 year adoption anniversary for us.

So, I thought I’d share with you what I wrote for her. Here goes:

————————————————————————–

Ours is not a typical adoption story, because Patrick is not a typical little boy. His life was meant to be something different, something miraculous, and so it required that it start in a very different and miraculous way.

But my part of the story starts the way a lot of others do. We wanted to have children. When that didn’t happen easily, we involved doctors. For years, we went through the ups and downs of charting and temperature taking, tests and medications. Finally, after several years and a minor surgery, our doctor sat us down for “the talk.” He explained that there were several causes of my infertility. The cards were, essentially, stacked against us. He still felt it very possible that we could have children, but only with major medical intervention. We had some big choices to make.

We talked about it and we prayed about it. And then, that Sunday, as we sat in church, we received a clear answer that it was time for us to stop medical treatments. Our child would come to us through adoption.

With a path finally before us, we moved forward quickly. I’ve never felt so driven to do anything before in my life. In under a month, we completed the application process, training classes, and were mostly done with our home study.

During our home visit, we had a conversation with our case worker that would play a major part in bringing Patrick into our family. She’d looked at our “preferences checklist” and noted that we seemed more open than most to adopting a child with special needs. We explained that we felt that adoption was a faith process. We believe that Heavenly Father puts families together. We knew we’d never turn away a child born to us with medical problems. So, if God was in charge of adoptions, too, then why would we limit His options? We knew Heavenly Father would help us find our child and that, if the child really belonged in our family, race and health wouldn’t stand in the way.

We decided to adopt in June. Our application was approved in September and we hunkered down for a nice long wait. We figured two years, at the least, was the average we’d heard. And still, by the end of October it felt like far too long. My heart ached for a child it knew was missing.

Then, on a very snowy morning the first week of November, my phone rang. It was my case worker. She started out by saying, “There was a little boy born on Halloween in Michigan.” My heart skipped a beat. I grabbed a pen and a piece of paper and started scribbling notes. She told me he was Korean. And then, she went on to tell me that he’d had a birth defect. His intestines had developed on the outside of his abdomen. The doctors were saying he had a life expectancy of 1 to 2 years. They needed to find an adoptive home quickly because doctors wanted to discharge him from the hospital. All she could tell me about his family that his birth mother wanted him to be able to go to the temple to be sealed to a family.

She said she’d send an e-mail with more information and a picture. She encouraged me to talk to Brian and decide if we’d like to be among those families considered to adopt this little boy, and then to call her and let her know.

As soon as I gathered myself, I called Brian. But he wasn’t at his desk. Meanwhile, two e-mails arrived. One was a short paragraph from the baby’s caseworker in Michigan explaining his medical needs and the unconventional and hurried search for parents. In the other were two photographs of a sweet little Korean boy with great big eyes and an IV in his head.

Since Brian wasn’t at his desk, I called the insurance company to find out if this we even had coverage to pay for this kind of medical problem.

That’s how Brian first found out about the offer. While I was on hold with the insurance company, he called back on my cell phone, so he heard me finish the conversation about “preexisting conditions” and “adoption”.

I gave Brian the information and, after a quick moment of thought, he said he’d come right home.

We had a prayer together, then went to the temple – the perfect setting to make decisions about life and death and eternity.

I knew that families are eternal. I knew that mortality is not the end of life. And yet, I was filled with grief. It was as if I’d just been told I was carrying a child with a terminal illness, but he wasn’t even mine yet. And I was scared. I didn’t know if I was ready to leave the life I knew then.. abandon it all, and become mom to a child who would need so much help, and who had such an uncertain future.

Still, when Brian turned to me and said, “I think we should pursue this,” my heart leapt with joy.

So, we called our caseworker and gave her a list of questions we had. And then we went to visit our parents. We felt we should tell them about the offer, because we knew that whatever happened, we were never going to be the same. And we both wanted father’s blessings. We showed them the little boy with the angel eyes and explained that we didn’t know if he was ours.. But from that moment, all of our families were praying for a little boy whom the e-mail called “Patrick.”

That was Wednesday. Thursday, I sent a copy of our profile. Friday afternoon, as I on my lunch break with Brian, our case worker called my cell phone. The birth family had seen our profile and had chosen us to adopt their baby.

Now, we had a choice to make. Because we’d been selected, we could finally start filling in the gaps in the medical information we were getting. And boy, where there gaps! We called the baby’s caseworker, who referred us to the hospital social worker. Finally, we decided we needed to talk to doctors, and we needed to do it face to face.

I called my mom and told her to take my credit card and buy airplane tickets. Then, I went back to work, explained what had happened, and asked for a leave of absence. After that, we went to the adoption agency where we signed pre-placement paperwork required for us see the baby in the hospital.

Friday night, we tried to get ready. We booked a long-term stay hotel room. We faxed legal documents to Michigan. We make a shopping list of nursery items. And we tried to pack.

I packed my bags that night not knowing what exactly I was packing for. We still didn’t know enough to say if we could take care of this baby. We didn’t know if or when he’d be discharged. We didn’t know how long it would take before we’d be given permission to leave the state again.

And yet, Saturday morning as I sat on a plane to Detroit, 10 rows ahead of my husband, I felt a quiet, happy calm. If nothing else, I knew it would be ok.

We met Patrick, his family, and his doctor Saturday night. It wasn’t what we expected. Due to unforeseen problems, things were tense at the hospital when we arrived. We felt like we knew nothing at all about his condition when we heard the doctor’s account. His case was much more severe than we’d understood, but the immediate prognosis was better.

At last, they led us to his room. My first impression was of how small he was. He was SO tiny! Just a little ball with wires and tubes attached. Without them, you’d have never guessed there was anything wrong.

They let me hold him while we talked. He felt so small and fragile.

I thought that the moment I met my baby, or the moment I held him, that I’d know he was mine. But that isn’t what happened for me. There were too many questions, still and I’d have to wait for that confirmation.

Sunday, we arranged to spend the day with Patrick. The nurses were so kind to let us change his diapers and help with other aspects of his care. I sat for hours singing him lullabies and watching monitors and letting him sleep.

When we arrived, the nurses warned us that he had a reputation as a very irritable little boy. There was even a sign on his door warning not to wake him. He was famous for screaming hysterically if his sleep was interrupted. But that’s not the baby I met. He was just a sweet, tiny little boy who wanted to be held.

I remember singing to him: “I am a child of God, and he has sent me here. Has given me an earthly home with parents kind and dear.” And my voice choked on the words because I knew that right at that moment, Patrick didn’t have that. I couldn’t imagine how any little boy could go through all he’d need to go through alone.

That night, as we looked at pictures from the day, I came across one that showed just his face with a white background. I knew, when I saw that picture, that I loved him.. and I wanted to keep him.

Monday morning, we held a “family conference.” It was a business day so we finally had been able to confirm that there were doctors to take care of him at our hospital at home. Our insurance confirmed that he’d be covered. Brian needed to hop on a plane to go back to work. (He was running a conference that week.) So, knowing we had the resources to provide for his physical needs, we asked Patrick if he’d like to be a part of our family. I swear, he looked up at Brian and smiled.

The case worker rushed to the hospital and by 1, we’d signed paperwork, and I was on my way to the airport with my husband. I was staying behind to start a whole new life.

The next few weeks in Michigan are among the sweetest of my life. With nothing else to do but hold my new baby and learn to care for him, I virtually lived in the NICU. My mom came for a week and shared with me in Patrick’s first feeding, first bath, and first time wearing real clothes. This time was also some of the hardest I’d experienced as I received a trial by fire as a mom of a child with major health problems. Patrick had his second surgery the day Brian flew back to be with us.

Two weeks after we signed papers, on my birthday, the birth parents appeared in court, and we were named as Patrick’s legal guardians. A week later, we had permission to bring him home. At 4 a.m. Thanksgiving day, Patrick and I arrived at Primary Children’s Hospital by air ambulance. He’d spend the next few weeks there as the doctors here got to know him and made arrangements for us to take care of him at home.

Because of his medical needs, the courts granted an early finalization of his adoption and we were able to take Patrick to the temple to be sealed as a forever family in February when he was just 4 months old.

Patrick just turned 2. He is an active, happy toddler who loves cars and music and Elmo. He is a living miracle! Patrick’s birth defect came with a rare complication. As a result, at birth he was missing over 95% of his small intestine. Without intestine, he doesn’t get nutrition by eating. In fact, eating large amounts puts him at risk for dehydration and bowel obstruction. Instead, he is entirely dependent on a form of IV nutrition called TPN. He has a permanent IV tunneled through his chest, into a vein in his chest or neck that runs to his heart.

The TPN leads to complications like infection and liver disease. In his short 2 years of life he has already struggled with both. Patrick’s doctors warned us before we adopted him that we’d become such regulars in the E.R. that we’d be on a first name basis with the staff. We soon found that to be true not just for the E.R. staff, but also the IV team, the infectious disease team, the PICU team, most of the residents, several of the medical students, and the entire gastroenterology department.

At 9 months old, as a result of infection, Patrick’s heart stopped. The fact that he is alive now is nothing short of a miracle. No doctor who hears his story and then meets him can help but confess that he has beaten the odds in countless ways.

Patrick will eventually need an intestinal transplant. He is already running out of places to put new IV’s and each new infection makes him a little more fragile.

Since they don’t do intestinal transplants where we live, we have chosen to have Patrick listed at Seattle Children’s Hospital. Patrick has been on the waiting list since April of 2009. He is status 1A and will have his transplant is soon as a donor match is found.

People try to tell us sometimes what a tremendous thing we did in adopting Patrick. We don’t really feel it’s something we can take credit for. As we told our caseworker when this all started, Heavenly Father puts families together. He knew Patrick needed us. And what’s more, He knew we needed Patrick.

Raising Patrick has taught us more about life than any other experience. We have learned to rely entirely on the Lord. We have learned to live each moment to it’s fullest. We have learned to lean on one another when things are hard and we to trust in hands of friends and strangers when we felt too weak to stand on our own. And we have learned to love like we didn’t know it was possible to love.

Little Heroes

You’ve gotta see this story!

http://www.abc4.com/content/news/top_stories/story/Donor-transplant-brings-two-Utah-families-together/_A0j2PcCfEOkr4N_XWaMmw.cspx.

As you know, Patrick attends a weekly play and music group for children with a variety of health problems. One of my heroes from this group is a little girl named London, or as those who know her call her, Lulu.

Lulu had a liver transplant a year ago. When she first came to our play group, her mom immediately recognized Patrick’s TPN, having been on it herself when she was at her sickest. Lulu is one of the most vibrant, outgoing little girls that I’ve ever met. She and Patrick seemed to have an instant draw to each other.

One other thing they have in common is that Lulu’s family, like ours, is trying to raise awareness of the need for organ donors. Both of us have been active in working with Yes Utah, our local organ donation awareness organization, and in sharing our stories to help encourage people to sign up as donors.

Last night, Lulu’s story was featured on the evening news. A transcript of the story has been published here. (Just in case you didn’t click on the link at the top of this page.)

Please read it, and share it. And if you aren’t already registered, please consider registering as an organ donor.. and make sure your family knows of your desire to be an organ donor.

On another note, we never got a call yesterday inviting us to come up to X-ray, so that test will probably happen sometime next week. I’ll admit, I didn’t mind much. Patrick and I were both burned out from the previous two days and it was a rare treat to get to spend the day at home. Chris, his developmental specialist came to play. Patrick adores this man and LOVES their visits. Then his cousins stopped by for a short play time. And then, after dinner, we curled up on the beanbag movie and watched Cars.

I suppose that that’s only a partially true statement. Patrick was all over the room, but he returned regularly to cuddle with me or to tickle or to blow zrbbts on my tummy. This is the first time Patrick’s seen the movie Cars and, as I had predicted, he loved it. He’d return often to just sit with me and watch a scene or two. He got especially excited whenever Mater appeared on the screen.

And then, after Patrick was in bed, Brian finally made it home from Chicago. There is so much comfort just in having him here. And it was so nice to have extra hands when Patrick pulled his usual trick of picking his central line dressing off during the night so we had to change it first thing in the morning.

Today I’m proudly sporting a new Giordano’s t-shirt that Brian brought back for me. In case you don’t know, Giordano’s is the best Chicago-style pizza chain on the planet. And if I can’t have the food (Howie’s trying not to rub in the fact that he had Chicago-style pizza not just once, but twice this week), at least I can wear the schwag.

When the cat’s away, the mice will….

…Well, the idea was to play. This is the 2nd and last night that Brian will be away on business and I thought that, other than a Wednesday full of appointments, I had a pretty laid back schedule. So far, this past few days have been anything but laid back.

Wednesday morning, right after kissing Brian goodbye, I went to set out Patrick’s morning fluids. They weren’t cold. This was especially concerning as I’d been setting the fridge to colder and colder settings all week and there was snow on the ground outside.

So, as Brian was finishing up his last work before heading the airport, I was scrambling to shop for a new fridge. Thankfully, Patrick’s morning therapy appointment was cancelled which gave me just enough time to hit a few stores before his nap.

After his nap, we went to his monthly appointment with his GI at the hospital. All the news is good. Patrick is growing at a good rate right now… he’s still 50th percentile for weight… just above the target weight for his height. His liver is healthy. He’s about as stable as can be.

The only change we discussed was a change to his antibiotic regimen. Patrick takes oral antibiotics to help keep bacteria from accumulating in his stomach and gut. Only lately, it seems that he’s had more and more problems that lead to stomach upset, vomiting, and diarrhea. So we switched around the medicines a little bit in the hopes that a new plan would make a difference, and then headed out.

We stopped at Sears on the way home to pick up the fridge that I’d picked out. You should have seen the look on the man’s face when I told him I wanted to put it in my car with my baby. Patrick wasn’t too excited about the idea either.

Still, we made it home and got the fridge up to his room and furniture and Patrick ready for bed.

We’d almost made it.. and then, as we were saying goodnight to Brian by video chat, Patrick stepped on the tube that was draining from his stomach and I heard a “pop”… and looked down to see that his button on the floor, the balloon that was supposed to hold it in still inflated.

Thankfully, my neighbor answered when I called and came quickly. It wasn’t easy, but we managed to get the button back in and Patrick comforted and into bed.

Thankfully, today was easier. Patrick and I managed to stay home the whole day with time to help my sister with a paper for school. But I got to talk to the GI clinic several times.

I started it. I called them to talk about how very difficult and painful placing buttons has been recently for Patrick. So first the nurse called back to find out more. Then Patrick’s dietitician called to talk to me about his TPN orders.

Apparently, as Patrick has had more and more stomach upset, and we’ve had to give more and more replacement fluids, his labs have been showing increased dehydration. They decided to try to make some changes to help him be more comfortable. They’re adding another half a liter of fluid to his TPN, plus some electrolytes so that we won’t have to give as much to catch up for what he loses.

Then, this evening, Patrick’s doctor called to talk. We reviewed the plan for hydration, and then he asked about the g-tube.

In the end of the conversation, we decided it was best to check to make sure that there isn’t a space between Patrick’s abdominal wall and his stomach making it hard to get a g-tube in. They’ll do that by taking out the tube, and then putting it back in filled with some contrast. This will let them see if there are any spaces or leaks to be concerned about.

We talked about doing this tomorrow, and if not tomorrow, then sometime next week. The good news in the plan is that they’ve offered to give him a little bit of sedative to help him calm down and not remember the discomfort.

That’s a lot of changes in just a couple of days. Thankfully, I’ve had all the right help come at all the right times. Thank goodness for good friends, visiting teachers and family who’ve been there to help. And I’m sorry for those who may have called and gotten a frazzled forgetful me who couldn’t even think through all the details of this, let alone speak them.

Most of all, thank goodness for a good-natured, patient, loving little boy who has been incredibly cooperative and given hugs at all the right moments.

Brian may rethink his next business trip.

Happy 2nd Birthday Patrick

Not many people get sentimental around Halloween. In our house, we just can’t help it.

2 years ago at 3:07 a.m. Eastern Standard Time, Patrick made his way into this world with much excitement. Doctors swept him out of the delivery room and into the operating room. The prognosis for him was grim. At first hours or days, then no more than 1 or 2 years.

That’s what we were told a few days later when we first heard about Patrick. Infections or liver failure would take his life within the first couple of years ago.

We were scared to hear that news and not sure what the future would hold. But there was something special about that beautiful little boy with the angel eyes and we loved him more each time we told his story and looked at his picture.

Last year, when we celebrated Patrick’s first birthday it was a big event. We almost lost him that year and his mere presence at home with us that day was a cause for celebration.

This year, not only is Patrick still healthy and still home, but he is amazing us as he grows bigger and stronger with each passing day. I didn’t imagine when we met Patrick that he’d be the vibrant little boy that his is now at age 2. On his first birthday, we had even more reason to wonder whether we’d ever see that day.

Patrick is walking. Not all of the time, but often and with more confidence in every step. He is learns more words all the time and loves having you teach him words for the toys he finds of the books you’re looking at. He loves the people he loves with an enthusiasm that’s hard to describe. He loves cars and Elmo and pushing his brand new birthday gift wagon. He kisses us goodnight every night and gives me hugs and kisses every morning. He adores his Daddy. He gets into trouble with his friends in music group. He likes chips and french fries and drinking from a straw.

He’s an amazing little boy whose love of life is contagious.

Happy Birthday Patrick. May this be one of many, many more!