short gut 101 – Patrick Hoopes

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:

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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.

Allergies

As of yesterday, we are the proud owners of an EpiPen Jr.

A few months ago we started to notice that with some foods, Patrick got little red spots on his cheeks and chin. He also had a really odd habit of sticking his fingers in his mouth after eating. When he discovered french toast, I learned that the spots always came with that meal, so I started watching ingredients. Pasta produced the same results. Scrambled eggs turned his lips, cheeks and chin bright red. That’s when I stopped wondering and knew. Patrick is allergic to eggs.

So I called his dietician, who gave me a simple answer.. don’t feed him eggs. It sounded easy enough, but the spots appeared at other times, too. On top of that, I knew he’d need a flu shot and other immunizations and that those shots are often egg based.

3 weeks ago, when we saw the fabulous Dr. Jackson, Patrick’s GI, I requested a blood test for allergies to confirm the egg allergy.

Not only did that test come back definitively positive for egg white, but also for 9 other foods including egg yolk, wheat, oats, corn, peanuts, milk, soy, and even a trace positive for carrots.

I had heard that kids with Short Gut easily develop food allergies. The weak intestinal walls allow proteins to leak into the bloodstream, just like they let bacteria through. The extra exposure to undigested proteins can cause allergies. I just didn’t expect to be hit with so many positives at once.

I called his dietician again for answers, and she explained that not all the positives represent real allergies. They just represent a probability of an allergy. Therefore, I should avoid feeding Patrick foods that I knew he was allergic to, but there was no need to withhold ALL of the foods.

So I started cutting back on glutens to see if those might be contributing to a recent unexplained bout of stomach upset I was seeing in him. Patrick was pleased to be moving up to grown-up cereal instead of baby cereal, but not so happy with the fact that all the cereals I was now offering were rice. I bought rice noodles so that he could have pasta without eggs.

And I still felt lost.

I sent messages to his docs and dieticians here and in Seattle, but the common consensus seemed to be “we can’t really say.” I wasn’t sure which foods he could safely have, and I didn’t have any answer still about how to give him a flu shot. When you’re waiting for transplant, you’re preparing to be immune suppressed. Therefore, you should have every immunization possible.

Finally, I called Patrick’s pediatrician. (Don’t know why I didn’t try this before.) She said she thought it best for Patrick to see an allergist who could at least determine the safety of the flu shot. She gave me the name of one she knew and urged me to push to get an appointment ASAP.

When I called for an appointment, their version of ASAP was “our next opening is in December.” I tried Primary Children’s Allergy Clinic and was told: “We’re not taking any more appointments for this calendar year, and don’t have a calendar yet for next.”

So, I told Patrick’s practically-magic insurance case manager about the problem and she mentioned an allergy clinic that she knew our insurance covered. She said she’d heard good things about them, including short wait times. I called them on a Thursday afternoon and…drum roll please…scheduled an appointment for the next Tuesday.

That was yesterday at 9:15 a.m.

Over the weekend, Patrick had his most severe allergic reaction yet to banana pudding, which I shouldn’t have given him because of the sugar content, but am glad I did cuz it clued us in to allergies I would have otherwise missed. He also had a reaction to playing with a spoon that had been put into my Traci’s Peanut Butter Cup ice cream at Leatherby’s, even though he didn’t eat any food there.

I got up with Brian yesterday. This is, in itself, an accomplishment. But I knew I’d need time. Getting Patrick ready and out the door before 9 requires near superhuman effort, but we managed it, even with time to spare.

Knowing it would be a long appointment, I came with the essentials: a bag of toys, books, and videos; a diaper bag of medical supplies and emergency kits; their 8 page medical history questionairre; an 8 page “condensed” medical history of my own; my purse; and Patrick.

It took a while for the allergist to appear. I was grateful for the wait, as Patrick started to spit up yellow goo right after we arrived in the room. I dug tubes out of my emergency kit, found that his button had been plugged overnight, and coaxed enough drainage from his stomach to avoid him getting sick in the office… finishing just as the doctor arrived.

He apologized for making me wait, but explained that it took a time to catch up on the history I’d brought. Can’t fault him for that.
We talked about why I’d come and the questions I hoped to find answers for. He went through the results of the blood test and explained that for most of the allergens tested, the blood test does only reveal a probability. For most of the low scores, the probability of a reaction was pretty low. He did his best to assure me that these were most likely not a concern. If I hadn’t seen reactions, he was most likely not allergic.

Then we talked about the eggs, the pudding, and the ice cream spoon. He scratch tested for all of the ingredients I thought might be related – 7 allergens in all, including the specific isolated proteins of milk. They also did a scratch from the vial of flu shot that he was intented to have.
Patrick wasn’t happy with the scratches, but otherwise enjoyed sitting shirtless in the office watching Elmo on TV and playing with his backpack full of farm animals. (Thank you to my neighbor who provided Elmo in VHS.) I sat and watched the reaction.

The nurse explained the two “control” scratches at the top that represented no reaction and his worst reaction. (Scratched with saline and histimine respectively.) And I watched the hives that formed at each of the scratches. Only 3 scratches didn’t react. Patrick is not allergic to banana, lactalbumin (a milk protein), or the flu shot. All the rest, he did.

Patrick is allergic to eggs (yolk and white), milk, peanuts, and corn.

His reaction on all of these was a 2 of 5. This means that at present, the reaction is not deadly, but a 2 today can be a 5 with the next exposure, so we are to assume that all of these are.

Next, they gave a partial dose of the flu shot, watched for a reaction for half an hour, and then completed the dose.

While we waited, we got to talk to the doctor about what the results mean, complete some forms, and watch more Elmo. Since we were the longest appointment of the morning, Patrick also was free to take a pantsless walking tour of the halls of the office.

So, now the punchline… what do these results mean?

Patrick can outgrow all of the allergies, except perhaps the peanut allergies IF he avoids contact with the allergens. So for safety, comfort, and future improvement, Patrick should not be exposed to any of the above listed allergens on their own, or as an ingredient.

This means reading a lot of food labels.Some of the ingredients are listed under different names. For help in interpreting labels, check out this site: https://www.foodallergy.org/section/allergens

It’s also possible that he could have a reaction to something that you don’t expect.. either by accidental contact with one of these allergens or by coming in contact with something we don’t know he’s allergic to. (Like I said, Short Gut can lead to food allergies, so it’s possible there are allergies we haven’t discovered.)

Enter the EpiPen. We’ll make sure to train all you caregivers on how to use it. He’ll also carry benadryl for milder reactions.

And so, the adventure of having a child with food allergies begins. Please feel free to ask questions. Either we’ll help you understand, or you’ll help us know what more we need to learn.

Relieving pressure

With Patrick, there are certain chain reactions you can count on. An infection will make Patrick’s spleen go into defensive mode and hold all the platelets that pass through it, kind of like people who hear a natural disaster is coming and run to the store and buy up all the food so that they’ll be prepared in case of emergency.

When the spleen sequesters (or hoards) platelets, Patrick becomes anemic. Without platelets in the blood, there’s a lot more fluid floating around in Patrick’s veins. The veins become “leaky” and the extra fluid goes and sits in any space it can find in the body.

Eventually Patrick becomes a little marshmellow baby that feels like he’s made of concrete because of all the extra fluid he’s carrying.

Last night, we added an element to this problem. When Patrick had enough fluid in his body, it became too heavy for his lungs to be able to move oxygen well and the oxygen saturation in his body dropped.

We discovered this problem as I finally got him to bed around 10 p.m. His nurse came in and put him on oxygen and then called the doctors. This started a better chain reaction for Patrick.

The extra oxygen was enough to finally mellow him out enough to sleep. Although he just kept getting puffier and puffier and needed more and more oxygen, he finally felt well enough to sleep. His kind nurse came in and held him which allowed me to get some much needed sleep.

The doctors prescribed a diuretic called Lasix that helps make it easier to shed extra fluid from the body. With just a half dose, Patrick started to to look and feel better. By his late afternoon nap, he almost looked like himself and I didn’t think my arms were going to fall off from the effort of picking him up. Better yet, his oxygen saturation improved enough that this evening they dared take off the tube that holds the oxygen on.

The best part of this chain reaction is that as Patrick is getting to feel better.. the infection clearing now that the line is out – and an end to the fluid overload problem have made it so he can finally rest. He actually was able to take naps today at their regular times, and fell asleep right about 9 p.m… not too far different from the home routine.

I’m really happy with how today went.. We just need to make it the next couple of days without a central line and without running out of places for peripheral IV’s.

Just wanted to share that good news. There’s probably more to blog about, but I’m going to take advantage of the change to actually get some sleep tonight without having to call in reinforcements.

Bath Time

There are some little things that I took for granted before Patrick. One of them is baths.

With a Broviac line, there is a 2 x 3 sterile dressing on Patrick’s chest that must be kept dry in order to keep it clean. Until Patrick started to have PICC lines I just plain didn’t put him in water. When he needed a bath, I’d give him a sponge bath. When Patrick got his PICC it was easy to keep his dressing dry because I could wrap his arm in waterproof things and make him hold it out of the water. But now that he has his Broviac line, giving baths is taking some more heroic measures.

There are two products that make this possible. One is a medical invention called “Aquaguard”. It’s a piece of plastic with waterproof but easy to remove adhesive around the edges. You cover the dressing with this and it keeps it dry. The second I buy at the grocery store: Glad Press & Seal wrap. This wrap can go around the connections in Patrick’s line and also can be stuck over his dressing directly to his chest. It crinkles a bit when he moves, but it keeps him dry.

Waterproofing Patrick’s chest sometimes is a bit of a battle. He’s not a fan of having crinkly plastic stuck to him and often takes it off right after I put it on. But once he’s in the water, it’s well worth the work. He loves to splash and play.

I’m not brave enough yet to use the big bathtub for Patrick’s baths. It seems like a rather big thing to keep sterile and keeping the tubes above the waterline is hard enough in a baby bath. Besides, Patrick loves the baby bathtub I put him in. He uses his feet to push back and make waves that splash over the sides of the tub. (Therefore, I put the baby bath inside the big bathtub to contain the mess).

The only part of the bath Patrick isn’t a fan of is washing his hair. This isn’t any kid’s favorite part, but for Patrick it’s especially tricky. He has a lot of hair so it MUST be washed, but I have to do it while keeping water off of his chest. Even with the waterproofing, too much water can still soak through to the dressing. So we have to take extra time and do this with as little water as possible.

As the picture below demonstrates, sometimes a bath is needed when I just can’t pull off all of the logistics.

Patrick gets diaper rash very quickly because his stool is so acidic. The other night, he was crying miserably because his bottom hurt so badly! It hurt too much for me to clean it with wipes, and leaving it uncleaned was only going to burn more. So, I grabbed the nearest hospital bucket I could find, put two inches of water in it, and set Patrick inside.

I consider this one of my most ingenious feats of mothering yet. It got the right part of Patrick bathed and happy while keeping his line well away from the water.. And he thought it was hilarious to get to sit in the little bucket on the changing table.

Sometimes raising a child with short gut syndrome requires some real creativity.

So what is tomorrow’s surgery, anyway?

We’ve had a lot of questions recently about Patrick’s surgery. Seems that there’s some questions about what exactly is going on. I’m going to attempt to explain what is happening in this blog post.

First, though… This is not his transplant, nor does it eliminate the need for his transplant.

Patrick is scheduled to have his small and large intestines reconnected tomorrow. To understand why this is necessary, let me tell you a little bit about his anatomy. While the average small intestine is about 20 feet long, Patrick was born with just 10-15 centimeters of small intestine. He has under a third of his large intestine. Because the large intestine has never been used, it is pencil thing. In contrast, the small intestine has been trying to adapt, which means it is larger in diameter than it would normally be. Here are a couple of images taken in April that might help you to visualize what that means.

From The Hoopes’s’s

The small intestine has three parts with 3 different roles. You can read about them here. Patrick only has the first part, the duodenum, which is very short, and an equal portion of the second, the jejunum.

The surgeons at the hospital where Patrick was born were not comfortable trying to put two pieces that were so very different in size together. Instead, they opted to create an “ostomy”, or “outward hole”. They made a whole in his side and brought the end of his small intestine out through it.

This option has it’s advantages. It’s easier to keep his skin healthy. (Patrick’s small intestine ends before stomach acid is reabsorbed so his stool can easily burn the skin.) And it’s easier to track fluids lost so that we can replace the water and electrolytes he loses. (The small intestine also ends before water and electrolytes used in digestion are reabsorbed.)

However, Patrick’s transplant surgeon and GI have asked us to take down the ostomy and connect his intestines. There are risks in having an ostomy. As his liver begins to scar, it will start looking for other ways to send blood away from it. The result is that smaller vessels will carry more blood than is usual (hyperportal tension) and a stoma could start bleeding uncontrollably.

Furthermore, the colon, while it doesn’t absorb nutrition, does absorb some bile and water and electrolytes, so in the end Patrick might lose less. This would mean he could eat more without it becoming dangerous for him.

Finally, Dr. Reyes says that he’s learned over the last 20 years that patients whose colon is in use, rather than having an ostomy, fare the wait for a transplant better. The body is happier when all the organs that can be working are. And the colon sends bile and water back to the liver, which is the liver’s version of job satisfaction. It will work better because it’s getting a positive response from it’s work.

So… the next questions you ask me are these.

1) Does this mean he won’t need a transplant as badly? No. Although the intestine does a fabulous job of adapting when it’s shortened, Patrick still is missing the vital section called the ileum where all the nutrition is absorbed. Without it, he is TPN dependent, which is where the risk to his life lies.

2) Will his diapers be normal? Well, yes and no. He will poo now. But it will still be mostly water and bile, kind of like a severe case of diarreah. We’ve been told we’ll change at least 12 diapers a day and need to use heavy duty diaper creams in order to keep the skin from breaking down in diaper rash or worse. We will also probably have to do some form of “double diapering” to prevent against explosive leaks that are common in kids with short gut and to be able to continue to monitor the fluids he loses so they can be replaced.

3) What will his recovery time be? We’ve been told to expect at least a week of recovery. He’ll go first to the PICU because he failed extubation in July. The critical care doctors will then be able to wean him off of the ventilator at a pace that is better for him. Once he can breathe on his own, he might be transferred to the infant unit… or he might stay in the PICU. It all depends on how his recovery goes.

4) Is this a risky surgery? Well, yes. With the run of infections Patrick has had lately, they are operating with him not quite as healthy as they would normally ask. There are risks of the connection leaking, or losing even more of his intestine, of the wound not healing because the skin where they are operating is so frequently exposed to stool. It’s also risky to reintubate Patrick right now. But, the risks of bleeding from his stoma are worse and Patrick is the healthiest he has been all summer, so it’s a chance we need to take.

5) What will happen on surgery day? We’ll get the time for surgery this evening. Tomorrow Patrick will fast. We’ll be admitted through outpatient surgery because Patrick’s surgeon was scheduled to be off tomorrow and added Patrick on because it was the time that was best for Patrick. The wait for surgery itself is always a bit nebulous. We’ll meet a surgery nurse and an anesthesiologist, and then finally Dr. Rollins will come talk to us.

In addition to the intestinal surgery, Patrick will have a liver biopsy, have his PICC line removed and a new broviac line placed, and have a scope done by urology to look for scarring from the catheter he had placed in July while he was in the PICU. The total OR time scheduled is about 3 1/2 hours.

We’ll wait in a parent’s waiting room where they’ll come to keep us up to date. Then instead of going to recovery, he’ll go straight to the PICU.

6) Are you nervous? It’s always hard to take your child who is healthy and happy and playing to a surgery knowing that there are risks involved… and even in best case scenario, knowing he won’t feel well for several weeks afterwards. However, we’ve been praying about this and feel calm that things will go as they’re meant to.

So – there you go. All you could hope to know about tomorrow’s surgery. We’ll do our best to keep you updated as soon as we know what’s happening. Most of the time, we’re waiting for answers, too.

Thanks for your continued prayers and support.

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.

Button, button, he’s got a button

We finally were able to trade in that long, awkward g-tube that Patrick liked to get caught in his toes. On the 13th, Patrick’s GI replaced it with a mic-key button. This is small port with a tiny tube that goes directly into his stomach. We can snap a tube into the button to use for feeding or any other needed access to his stomach. But, when it’s not in use, he has only the much smaller button to worry about.

Tummy time, wearing pants, and zerbets are all now much easier.

You may be asking, well do you use his button? What’s it there for? Well, the goal of an “enteral feeding tube” is to put food or medicine directly into Patrick’s stomach without him needing to take it orally. Now, anyone who knows Patrick knows that he loves to eat. However, we’re hoping someday to be able to use this tube to feed him overnight so he can sleep through the night. There’s a pump that will pump formula from an iv-style bag into his stomach at a nice slow rate.

We tried doing just that over the past couple of weeks. However, we’ve learned that Patrick so far doesn’t sleep soundly enough for it to be worth the extra effort. Because food is going directly into his stomach, we were giving him smaller oral feedings during the night… but Patrick didn’t think that was enough and was quite vocal all morning most mornings letting us know he wanted more.

So – right now we’re not using button. However, we’re hoping someday to use it and finally let Patrick sleep a whole night long.

Broviac Line

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

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

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

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

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