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I’ve been sharing Patrick’s story with strangers again. I can’t help it. It’s one of those stories that just wants to be shared. And besides, when I revisit those first months with him, when I can take those miracles out of my little box of memories and turn them over in my mind and run my fingers along them, it helps me to have more faith and more patience with the more hum drum challenges of day-to-day life caring for a medically fragile child. And the bigger battles, too.

It started with an e-mail stating that LDS Family Services was looking for volunteers to do adoption outreach presentations in my church congregation. How could I say no to the chance to share our adoption story with these supporters and friends? To brag publicly about how much we love Patrick’s first family? And to talk about the amazing free services offered to those who find themselves, a friend, or a family member pregnant and unprepared? (The gist of the message can be found at itsaboutlove.org.)

Our story what shared again today with another audience. I was given the opportunity to write a guest blog for a site called Kidz. (http://kidzorg.blogspot.com/) This site is devoted to providing hope, support, and encouragement to families of children with all kinds of diagnoses. Children who are just a little bit different, and just a little bit wonderful. Kidz.

Writing for that audience made me really stop and think. Unlike most, this group knows what it’s like to face frightening news from doctors. They know what it’s like to wish everything for your child, yet know there are things you can never give them.

Writing for them made me stop and think what I have learned and how I survived and how my life has changed for the better since Patrick entered it. It’s harder, but it’s better.

So, if you’d like a walk down memory lane, take a pop over to http://kidzorg.blogspot.com/2011/03/picking-patrick.html and reread an old and familiar story.

Patrick and I have eaten breakfast together for the past two days. The same meal. The same food. Buttered toast. And I’m very excited.

Why? It all has to do with essential fatty acids.

Now you’re asking what essential fatty acids are, and what any of this has to do with toast. Let me back up a little bit.

One of the elements of TPN is a substance called lipids. We call the lipids fondly Patrick’s cheeseburger. Basically, they’re fat. That tippy top part of the food pyramid. And we all need just a little bit of fats in our diet. They’re a source of calories, and they serve other functions in the body, too.

Unfortunately, when lipids are given intravenously, the liver is responsible for breaking them down. This is one of the primary causes of TPN-associated liver damage.

We’ve been fortunate that Patrick’s liver health has been well managed, but every once in a while, it still gets inflamed from the extra work it’s doing. When this happens, the doctors will sometimes give his liver a rest by taking the lipids out of his TPN.

However, like I said, our bodies need fats. So, you can only safely take away lipids for a little while you start to have deficiencies. And so, after a few months without lipids, they start to do a blood tests to measure the fatty acids in the body.

We did that test a couple months ago. The results were surprising. Across the board, the test shows deficiencies. However, not all of the levels were low. In fact, some were high, evidence that Patrick has probably been absorbing some of the fish oil supplements that we’ve been giving him. And the ratio that usually reveals a need to give lipids back, well it was normal. But, being a ratio, could you be deficient and low?

So – when we saw Patrick’s GI and dietician last week, I started asking questions about what the blood tests meant. And, as Dr. Jackson loves to teach, he pulled out a piece of paper and gave me a little science lesson. Warning: Science content.

He started by teaching me that there are two essential types of fat that our bodies cannot produce for themselves, Omega 3’s and Omega 6’s. The lesson then turned to chemistry. I learned that the terms Omega-3 and Omega-6 refer to the molecture structure of the fats. And that as the body breaks down those fats, it converts them into enzymes. So Patrick’s levels of the fats were low, but the enzymes were high.

In the end, the lesson convinced him that Patrick probably needed a little more lipids. So, we added them back into the TPN, but just twice a week.

I still had a lot of questions about how a fatty acid deficiency affected the body, besides it being a bit harder to gain weight. And I was still floored by the fact that Patrick showed evidence of absorbing anything he ate.

Thankfully, the very next day there was a webinar being put on by ThriveRX, an national infusion pharmacy, about that very subject. And I was available to tune in.

And I got a few answers. Learning the symptoms and consequences of fatty acid deficiencies was interesting and put my mind at ease. There are, in fact, consequences.. but Patrick wasn’t really showing symptoms.

I also learned a LOT about how to add Omega-3’s and Omega-6’s to diet.. and the importance of getting both. Patrick’s dietician has been telling me to try feeding him more fats, but I needed to know the right kinds of fats. The webinar gave me a list. Fish, but not just any fish. Oil, but preferably oils that start with “S” (sunflower, safflower, soy). And then a few things that allergies might not allow: mayonnaise (eggs/milk), salad dressing (milk), and margarine (yup, milk.)

But these last 3 are the way that most of us actually consume these essential fatty acids. So, when they opened things up for questions, I asked if there were options for a child with allergies.

And I learned that a very, very small number of tub margarines don’t contain any milk products.  I tried margarine with Patrick when we first discovered the milk allergy, but every brand I tried still resulted in the same hives in and around his mouth. Turns out they all got their flavor from whey, buttermilk, or other traces of milk products. I finally just gave up, which meant giving up on a lot of foods that are better softened with margarine.

But, armed with this new information, I headed back to the store and found that Smart Balance makes a margarine with flax. It’s all those magic “S” oils. No milk. It’s even labeled “a good source of Omega-3’s.”

And, for the first time since last summer, I’ve been able to add a buttery flavor to vegetables, breads, potatoes and more for Patrick. And, not only does he get to enjoy the taste, but there is a small chance that he’ll actually absorb a little bit of it, which would help him grow and help decrease his needs for lipids which would, in turn, help protect his liver.

For perhaps the first time since he was a newborn, I have hope that feeding Patrick will do him some kind of nutritional good.

And it’s a food that I can share with him. I make a piece of toast and we eat it together. Patrick thinks it’s remarkably fun to both take a bit at the same time. I’m sharing with him and don’t feel like I’m cheating or taking a risk.

I can’t wait to enter the realm of buttering our eggless/milkless pancakes to see if it will help him want to eat them. Or to cook hash browns. Or to try adding a little buttery flavor to my homemade SBS friendly baby foods.

I feel strangely empowered.. by buttered toast.

As I went through my usual afternoon scramble to change TPN tubing, give meds, clean the living room, keep Patrick’s stomach settled, and make dinner, an image came to my mind of spinning plates.

You’ve seen the act, right? An juggler manages to keep a dozen or so plates spinning either on the table or balanced on tall poles. He does it by watching them closely and going down the line spinning those that need extra attention.

My life right now is a lot like spinning plates. I think most moms’ are, especially those with toddlers.

There are the usual plates. There’s one for entertaining and teaching your child. This plate is spun by reading stories, singing songs, and playing silly games. There’s a safety plate. This one can be a bit wobbly sometimes. It requires you to protect garbage cans, sockets, stairs, etc. There’s the faith-building plate. It needs attention for scripture reading and prayer.

Some plates sit low enough that, if they slow, the show’s not as pretty, but the higher plates can keep spinning. For me, the housework plate’s been spinning a bit slowly. So has the laundry plate. As often as I can, I give them a twirl. So long as they don’t come to a complete stop, the rest of the show is fine.

Raising a child with special needs means makes mine a trickier and more impressive juggling act. That safety plate’s on an extra tall pole. And there are more plates, too. I’ve got plates for medication schedules and plates for appointments and really delicate china plates spinning that require extra care like central lines and infection control. These ones have to spin quite fast and if you leave them unattended come crashing down quite quickly. They take a lot more of my attention than you might expect and keep me running most of the time.

Thankfully, I’ve got assistants. My dear husband spends a lot of time tending to my more errant plates. Impressive, for a man who’s got a whole table spinning on his side. I’m ashamed to admit, sometimes, how often I leave the plates titled “Family” and “Friends” entirely to their own accord. But, you see, those assistants are so reliable, and there are other more unsteady plates with no one but me to watch them.

Sometimes, an onlooker decides to add to the show. They don’t always see the complexity of it. And I, ever the showman, tend to say “yes” too easily when someone says “Could we maybe add a little plate here?” And then, all too often, that little plate has a little cup balanced on the top, too, that someone failed to mention. And I get a bit huffy and want to say, “Hey, didn’t you notice all my other plates here?” But more often than not, I just spin the cup, too, for a while to keep the crowds happy. And then, slip it away and go on with my show. What’s a show without a little bit of “service” or “volunteerism” or “community involvement”, anyway?

To make room for some of the plates, I’ve put others away. My “personal talents and interests” plate is getting a bit dusty from lack of use. But someday it’s time will come again.

And you never know when that minute or two with a difficult extra plate will turn out to be just the perfect extra flair. After all, some of the best stunts are the most difficult. Sometimes “family fun” is the hardest plate for me to get spinning, but the dimension it adds to the show is well worth the extra effort.

So, heck, while I’m at it, does anyone have any knives you’d like me to juggle? And if you’ve got a hand, could you catch that plate?

When we left our story, our hero Patrick was recovering from a successful line placement surgery and the disorienting effects of anesthesia. (Poor kid could barely walk.) His daddy took the role of protector, as Patrick had no balance and no impulse control and could not be left alone. His mommy made a mad scramble to pack his many suitcases for a much-needed and definitely hard-earned vacation.

Brian is not the easiest person to buy presents for. His computer geek taste is both technically complex and often expensive. And it’s rare that he doesn’t already have most anything he needs. I have a gift for screwing up gifts to him, too, by either telling him what he’s getting or inadvertently buying the wrong things. At Christmas, I was somewhat stumped until my mind landed on one idea that he really wanted and never would dream that he could have…. a trip to Denver to visit his brother and attend a Colorado Avalanche hockey game.

The last time we were in Denver, we were newlyweds. We were scheduled to go for Thanksgiving 2 years ago but, well, ended up flying Patrick home from Michigan that day instead.

So – when Patrick’s line was obviously not working, I got in touch with his GI and explained that we had tickets purchased for a quick family vacation. His response was “Well, then let’s get that line fixed tomorrow so you can still go.” And that’s how we ended up packing for vacation and recovering from surgery the same day.

Thankfully, Brian had booked an afternoon flight. That gave us the morning to get things ready while still taking care of Patrick’s needs. He was still feeling a bit impulsive and when I asked him if he wanted to go bye-bye on a plane, he ended up standing at the door throwing a tantrum, crying “bye-bye pay” over and over again. Yup, still tired and grumpy, too.

But he was a great sport in the airport. Things were quiet there and we breezed through security. (As much as you can do with patdowns and bag searches that come from traveling with IV’s.) We got to the gate early and I let him wander a bit to try to get him tired enough to rest during the flight. He loved wandering the terminal watching planes and trucks out the window and visiting with anyone who’d make eye contact with him.

We arrived in Denver in the early afternoon. I’m sure we were quite the sight with our 4 suitcases, 2 computer bags, diaper bag, stroller, TPN backpack and Patrick making our way to the rental car. The funny thing about travelling as a family this way is that no one expects us to know what we’re doing. Security is always surprised to find that we are so savvy about the procedure and rules. And you should have seen the look on the rental car agent’s face when we asked to be dropped at the Club member’s stop. But I digress.

We made it to Brian’s brother John’s house on time for dinner. Patrick was thrilled that the owner at Qdoba was willing to throw in a free tortilla just for him. We ate, and then we sat around and watched Short Circuit and caught up a bit. John bounced Patrick head first on the footrest of the recliner, and Patrick was in heaven.

The next morning, Patrick was wide awake at 6:30 a.m, despite having been up till nearly 10 p.m. the night before and despite the fact that he was still white as a ghost. Thankfully, though, after breakfast he was ready to sleep again. We had a luxurious nap that day! We slept well into the afternoon! All the work to get to Denver was worth it just for that nap.

We did eventually get up and got to John’s house with just a little time before his daughters got home from school. They are 8 and 10. We thought a cooking lesson might be fun so we took them to the grocery store and got all of the ingredients for our very fancy nachos. Then we came back and taught them all about cutting peppers and tomatoes. The end result was quite yummy.

John’s oldest daughter provided that evening’s entertainment. She was doing a dance in her school’s talent show. So we all piled into the van and headed to the show. As we pulled away from the curb, John’s youngest announced: “I can’t find my tooth!” I guess she’s knocked a loose tooth on the seatbelt on the way into the car and it had come out. We never did find it. Good thing the tooth fairy doesn’t charge a recovery fee.

The talent show was a packed house. My goodness was this a production! But I found myself really enjoying myself as I watched a bunch of elementary school kids singing and dancing to a bunch of Taylor Swift songs (among others). John’s daughter was number 18 of 36 some odd performances. She came on an hour and a half into the show, did a great job, and then we bailed. Patrick was doing his best to be brave and cheer along, but even he could only take so much.

Brian went out with John that night to meet some of his friends. (His brother is a very talented computer security expert and the computer geek crowd often only emerges at night.. Fear of sunlight perhaps? Oh wait, that’s vampires.)

But, the next day, Patrick was up again at 6:30. No early nap was offered, though. We had bigger plans. John’s family came down to go swimming in the hotel pool.

Now, technically you shouldn’t swim with a central line… or 3 days after surgery, for that matter. But we didn’t want Patrick to be completely left out. So, we did what any good parent would do. We covered all his gauze dressings with tegaderm, put an aquaguard on top of that, wrapped him in Glad Press n Seal wrap, and took him to the pool.

We did enforce two rules. His tubes and bag needed to stay out of the water, and he wasn’t allowed to be submerged above his belly button.

At first, he pretty uncertain about what we were doing. After all, I don’t even fill baths deeper than his belly… And he’s only been in a swimming pool once before in his life. But, quickly he warmed up to it.

I taught him that he could lean back and kick his feet and the water would splash.. And he was sold! That was about the most fun we could possibly have offered. And then, we showed him that we could go under the water for a few seconds and then pop up,and he was laughing so hard he could barely control himself. He learned the word “again” asking for us to repeat this trick. We swam till his little lips turned blue and his shirt was soaked from splashing.

We’d planned our swimming adventure knowing that Patrick’s surgical dressings needed to be changed for a regular central line dressing. So, after we dried off quickly, we got out the supplies and made John’s family assist with the dressing change. (Their job was mostly just to entertain Patrick.)

Then, I discovered a pinhole sized leak in Patrick’s curly tubing. This is a disposable piece and I had a spare, so I just changed out the tube, but we spent the rest of the day watching for signs of infection or problems, just in case some pool water had made it into his line. No worries, though. He was ok.

That night was the long-awaited hockey game. I said my goodbyes early because we’d decided not to try to take Patrick to the game. He struggles in our small arena with the noise and the game didn’t even start till 8.

Brian tells me that the Avs were creamed this game. Still, he enjoyed the game. A good dose of NHL for my die-hard hockey fan.

Meanwhile, Patrick and I stayed behind and did laundry and packed… well, that’s what I did at least. Patrick ran around the room undoing my work and signing and saying “Play, play, play” whenever I asked him if he wanted to go to bed.

And then, too quickly, it was time to go home. Sunday morning, we finished packing up the room. We had some time to spare, so we drove down to the Denver temple, then went back to the airport.

We were pretty nervous about going through security at an unknown airport, but our organization paid off and it was one of our smoothest screenings yet. The wait for the flight was easier this time – there were moving walkways in the terminal that Patrick ran on for the entire wait. Then, once on the plane, Patrick fell asleep at takeoff and slept till right before we landed.

A lot of people would think we’re nuts for taking off on vacation in spite of all we went through at the start of last week. But, as I’ve said before, Patrick has taught us the importance of making the best out of every opportunity. It can sometimes take more work and it often doesn’t go as planned, but when all is said and done, it is well worth all the work we put into making these memories as a family. And I can’t think of a better way to have caught up on our rest.

Brian and I were talking about the week’s events and he said to me “This is going to make one heck of a blog post.”

Well, yes, it will, so I decided I’d better take this moment of quiet to write about the first and more medical part of the week.

Rewind to last Saturday night, a week ago. Patrick’s bacterial overgrowth or whatever it was was acting up again. Just before dinner, he made that “I feel sick face” and I barely got a tube on to drain his stomach on time.

At bedtime, as I gave his medications, he made the same face but as it’d only been a couple hours, I put him to bed anyway. I put his tummy to downdrain an hour after he falls asleep anyway. Surely he could last that long. Big mistake. He woke up just as I was heading into his room throwing up.

So, I rushed in and got him out of bed. He was really, really shaken up by this rude interruption to his sleep. Just sobbing. I sat on the floor and tried to comfort him and clean him up while Brian remade the bed. Meanwhile, I drained his stomach the rest of the way. Once all was clean, he went right back to sleep.

But it was to be short-lived. A few hours later, he was up again. I went in and did my best to get him to sleep, but he was really unhappy with the idea. I noticed his pajamas seemed a bit damp, so I changed his diaper and PJ’s yet again. I tried to rock him to sleep for another hour, but he just wasn’t going to have it.  At last, I just gave up in frustration, put him in his crib and went back to bed. Another mistake.

It sounded like he eventually fell asleep, so I did, too. But an hour later, he was awake again, this time pretty sad and sleepy. So, I went in and rocked him to sleep, then snuggled down in the recliner in his room with him so we’d all get more sleep.

At 6 a.m., I finally snuck him back to bed and found I was quite wet. But, all I could see with the light of my flashlight was more clear wet, so I decided it was another leaky diaper and left him.

At 8, he woke again. This time I found him in his bed tearing his central line dressing into tiny little pieces. A quick glance revealed that last week’s repair had blown during the night. The puddle and the night’s events all pointed to one conclusion – the line had been broken for hours. It hadn’t bled a drop.

This is good, as Patrick could easily have bled to death. But it also was worrisome, as it meant that there were clots in the line.

So, I woke Brian and we made a mad rush to pack and get into the hospital to try to repair the line.  We arrived around 9 and the IV team came quickly to do the repair. However, with the line clotted, it wasn’t possible to test the line to see if the repair was done right. We just had to act on faith. They told the nurse it was done, and she came in to say they were ready to send us home.

Now, normally I love to be in and out of the hospital as quickly as possible. But at this point, Patrick had been without TPN for as much as possibly 9 hours. And we were going home with a fully clotted line. I explained that I’d like to stay where they could place an IV in his hand or arm to give fluids if they needed too, but they were determined that we should go. The hospital is overflowing right now with cold, flu and RSV cases. They didn’t want us exposed and, honestly, they needed the space.

Finally the doctor came to talk to us and I couldn’t help keep the tears from flowing. I’m brave in a lot of ways, much braver than most parents and it means we get away with doing a lot of things at home for Patrick. But after having him stop breathing and his heart stop beating in my arms and having the doctors say it was caused by low blood sugar, among other things, I really get scared when Patrick’s TPN is taken away for any length of time… especially when I am asked to do it at home.

Finally, though, Brian and the doctors convinced me that it would be safest to get away from all the respiratory bugs in the hospital and go home. They ordered TPA, a declotting agent, for us to use on the line at home and sent us on our way.

I was feeling awfully alone that morning as we left the hospital. Especially as this was one more week of missing church and family dinner. Thankfully, the mom of one of Patrick’s music group friends happened to be arriving at the hospital as we left and she gave me a hug and a good pep talk.

We got home and Patrick tried to nap. But he didn’t feel well enough, so I wrapped him in a quilt and cuddled with him in the big comfy chair in our living room. We watched 3 hours of Bob the Builder while he sucked on a candy cane to help keep his blood sugar up. (Glucose can be absorbed in the mouth. This is the only time Patrick is ever allowed candy.) He was exhausted and would doze off from time to time, but never with the candy cane far away.

Finally, 2 p.m. came and the glue in the repair had set enough to start trying to declot the line. The first lumen was easy. Brian just drew the clot out into a syringe and we were able to start giving TPN through that line.

The 2nd lumen, though, was stubborn. We put all 4 doses of TPA into it. (Usual protocol is 2 doses, then call the hospital.) We pushed and pulled and finally got a little blood to draw, but it wouldn’t flush. Finally, we left TPA in it for a whole night, but in the morning, it didn’t work.

So, Monday morning I called the nurse in the GI clinic. At 11 a.m. they called and said to come into the hospital so they could help to work on unclotting the line. So, back we went.

We got there just after noon and saw the doctors right away. They decided we’d given TPA a fair chance, so next they decided to try hydrochloric acid. This can eat through mineral deposits from the TPN. It took nearly 3 hours, though, before the overworked pharmacy got this prepared. Patrick and I napped while we waited. Then, went for a walk in the hospital while the 30 minute soak was in.

We ran into another Short Gut family who was there for a line infection. Patrick and their litttle short gut boy got to play together in the playroom.

Then we went back to draw the hydrochloric acid back out, but there was no change. Next, they tried sodium bicarbonate. Same routine. Long wait, then we wandered through the hospital while we waited. Brian got off work and came up for dinner.

But, in the end, no change.

At this point, we knew the line would have to be removed. You can’t leave a clot in your body, even if it is inside a catheter. The doctor gave us 2 choices: go home and try to get added onto the outpatient surgery schedule, or stay the night and try to force surgery to make him an inpatient add-on.

We opted to go home. We needed sleep. And, we have a good enough relationship with Patrick’s doctors that we knew they’d do all they could for him.

So, Tuesday morning I woke up with that same sinking feeling in my stomach knowing that the line would have to be taken out and not knowing what putting a new line in would require. I didn’t even know if it’d be done that day or the next week.

But at least I had a good distraction. For valentine’s day, Brian bought me 3 hours of professional housecleaning. The cleaning service arrived at 9 and did a great job making our bedrooms, bathrooms and living room look spic and span. They did a lot of what I never hav time to do… scrubbed tubs, mopped floors, dusted, etc. While they worked, I made calls to the Dr. Jackson to start working on a plan.

Then, Patrick and I snuck away to IHOP for National Pancake Day. They give you a free short stack of pancakes in exchange for a donation to the children’s hospital. We thought this a fair trade. My mom and sisters came too and we had a great lunch. They had a pirate there making balloon animals. Patrick came away with a sword and pirate hat, quite happy.

At last, Dr. Jackson called back. I explained the problem. Of course, this all happened the week we had planned a family vacation. And so, Dr. Jackson pulled strings so the line could be repaired with time for us to still go. So, I got word at 1 on Tuesday that Patrick would go into surgery the next morning.

Patrick had an appointment with his physical therapist Tuesday afternoon. And his new brace was supposed to have arrived, so I didn’t want to miss it. So, I forwarded the phones to my cell phone and away we went. (Hooray for Ooma VOIP service).

The brace was a perfect fit… even fit inside his current shoe so I didn’t have to go shopping for new shoes again. We tested it out and worked for half an hour, then my phone rang.

Patrick’s wonderful PT Holly kept working with him while I gave surgery Patrick’s history… always a TREMENDOUSLY BIG feat. You should see the notes they take. Half an hour later, I got off the phone just as the therapy session ended.

My phone kept ringing all afternoon as I got instructions and made plans for the next day.

We checked into surgery Wednesday morning at the bright and early hour of 6:45 a.m. Patrick loved playing with all the toys in the waiting room, and I marvelled that he was finally big enough for those toys.

We got him into his surgical gown and then a nurse practitioner came to take his history. She was obviously nervous about the complexity of it all. But she was still very kind about it. And Patrick loved her bedside manner. He even opened his mouth, stuck out his tongue, and said “Aah” for her.

Then, we wandered down to ultrasound. Since Patrick’s had so many lines, not all of his veins are good to run them through anymore. So, they look in ultrasound to see what his veins now look like and where IV’s can go.

Patrick hates having ultrasounds done of his juglar veins. It took Brian holding his bottom half and one hand and me leaned over the top of the bed holding his head and the other hand while trying to entertain him with the Elias Tours app (animated car and truck flashcards). And even then, the images were only borderline good.

When that was done, we checked into surgery to find they were behind schedule. By this point, all the hanging upside down after 3 days of limited sleep was getting to me. So, we wandered down the cafeteria to get breakfast (and ibuprofen.) Just as we finished, they paged us on the overhead. Surgery wanted us back, as they were not as behind as they thought they were.

We met with the anethesiologist and the surgeon, Dr. Rollins (a.k.a. “Ca-ca Ro-ro” in Patrick’s language.) Dr. Rollins is Patrick’s surgeon so he talked to us about his overall health, fishing to see if he should be offering surgical help for Patrick’s motility problems. It’s so nice to have doctors who really care like that.

Then, we gave Patrick some Versed and he got all giggly and kissy and limp. Then, we put him in a wagon, kissed him goodbye, and they wheeled him off to surgery.

The procedure went quickly and well. Because we’d unclotted the larger lumen, Dr. Rollins was able to actually run a wire through the line. He removed the line with the wire in place, then use the wire to guide a new line back into the same vein. This buys us a little more time in that same place with the central line… a miraculous thing for a boy who is running low on places to put IV’s.

They called me back to recovery quickly. There, Patrick was just waking up and in pain. They gave him some pain medicine and the nurse asked if it would help for me to hold him. We just needed to wait for an x-ray and a blood sugar test before she could send him to recovery.

But, when we moved him to pick him up, I noticed that he was bleeding more than he should be. Patrick tends to bleed a lot from the sites where lines have been tunneled.

So another nurse came and held pressure to stop the bleeding. Meanwhile, x-ray came. Finally, we got a blood sugar, too, but it was low.. So we got permission to restart the TPN.

It was odd to be a part of all of this action. Some PACU nurses don’t like parents hovering. However, the doctors had told the nurse that I really knew my stuff and, as Patrick’s complex, it would be best to call me back and to listen to me. So, I found myself kind of calling the shots.

By the time we finally got everything settled to go to recovery, Patrick had been awake long enough to be discharged. Brian came back and we let Patrick drink some water to be sure he wasn’t naseous. He still was. So we let him rest a bit.

But, as he rested, he managed to loosen his dressing just enough to have to change it.

And so, following doctor’s orders, the nurse said “Ok, you can do it.” She helped gather supplies and then left us to change the dressing on this brand new line and surgical site. Quite the feat to do, especially to do and control bleeding. But, we succeeded and I dare say did a pretty good job.

We made it home that afternoon. Patrick was really groggy, loud, energetic, and wobbly. He couldn’t walk, thanks to the anesthesia, though he sure kept trying.

Still, we had a working line, and by morning he was doing better… Which is good, as we had bigger, funner adventures ahead. We had the go ahead to go on vacation. And we’d even managed to pack our bags, in spite of it all.

To be continued…..

Patrick’s gut has been sick this past week. A couple of days ago, he woke up from his nap throwing up. It’s probably bacterial overgrowth again, when the bacterial flora in his gut gets out of balance because, well, how could it not?

 

So I decided today that I’d add his third and optional oral antibiotic to his regimen to see if it helps. But that meant a trip up to the pharmacy at Primary Children’s. And the 30 minute trip across the city and up the hill is hardly worth it for the time it takes to run in and pick up a prescription.

Enter the zoo pass.

We bought the pass just for occasions like this.. so not every trip “up the hill” would be purely medical. So I hopped on the zoo’s website when Patrick got up from his nap to check the hours.

Gate closes at 4 p.m. Grounds open till 5:30. It was quarter to 3. So, in true seize the day fashion, I packed up and got out the door at 3.

I almost thought we wouldn’t make it. There was some state high school competition at the university and traffic was heavier than usual, but we made it to the zoo gates at 3:50 p.m. One helpful woman yelled after me “They’re closing” as I rushed to the gate.. But I’d read the fine print.

I made it just on time to get in before the gate closed and all the people who hadn’t read the last line headed out at 4 because that’s when they thought the zoo closed.

I’m sure the overall attendance at the zoo was low today anyway. After all, yesterday was free zoo day and there was snow in the forecast. Still…

For one magical hour, Patrick and I were the only visitors in the zoo.

What a unique and fun experience. First, we walked in and were greeted by a curious peacock. Then, we were surrounded by a flock of turkeys. (You see these animals uncaged other times, but they always stay behind fences at a safe distance.)

In the ape house, Patrick was wandering around looking in windows when all of a sudden I looked up to see that he and I were face to face with a HUGE gorilla. Then, one window down, the youngest orangutan, Acara, came over to the window to play with us for nearly 15 minutes. She and Patrick exchanged kisses through the glass. She pouted when I decided that we really ought to go.

Patrick’s favorite place in the zoo is the small animal house. In the center is an open rainforest looking area full of birds and turtles. We walked in and I spotted a parrot perched just a few inches a way. I pointed it out, telling him it was a bird “like Max”.. well, from then on, Patrick would only visit the animals in the corridors for a few minutes at a time, then run back to this room in the center yelling “Ma! Ma! Ma!” and whistled. Being alone in the small animal house was a certain treat.

The tigers put on a bit of a show for us, too.. One jumped down from a hill about 10 feet above us, then walked right up to the window and gave a friendly roar. The leopard just kept pacing, but would stop to see if we were still there. The lemer yelled for attention every time we turned our backs, and then when we’d look would put on a show, including jumping right down to the glass. I don’t know if he was performing or trying to chase us away. And the chickens, well, they ignored us as they foraged through the flowerbed, but clucked enough to convince Patrick that I wasn’t just making up the animal we’ve been looking at in books.

Sometimes I really love the adventures our family has because Patrick has taught us not to miss an opportunity. And, really, it pays to read the fine print.

For Valentine’s Day this year, Brian and I went to pianist Paul Cardall‘s 2nd Celebrate Life Concert. If you are new to this blog, Paul Cardall is a heart transplant recipient and family friend. He was born with a congenital heart defect that nearly claimed his life the year we met him. Like Patrick, he spent much of his early years in and out of hospitals. He and his family have been mentors, cheerleader, and friends for us since they first heard we were bringing Patrick home.

In September 2009, after a very long wait, Paul finally received his transplant. And the following Valentine’s Day, he started a tradition.. a benefit concert raising money and awareness of congenital heart disease.

While Paul was recovering from his transplant, Patrick was recovering from his ostomy takedown, a long difficult recovery on the heels of our most difficult months with him. As the two experiences are interwoven in our memories, it’s difficult to not feel an emotional investment in Paul’s life as well.

And so I found myself feeling a bit like a proud mother hen watching in awe as Paul performed music from his new album.  I was awed to see how much more energy he had, despite being sick with a bad cold. And I was thrilled to see how his face has rounded out and his voice has gained more strength.

And as I watched, I couldn’t help but think how I dream someday for Patrick to have that kind of joy and freedom. That is what we are working for, praying for, saving for, losing sleep over.

This picture, one of my favorites, kind of captures it all.

This is Paul at the top of Mount Olympus, the highest point in the mountains surrounding the Salt Lake Valley. Strong enough to complete the climb. Friends, family, and a loving wife at his side. Celebrating life. (and remembering a few other things.)

If I could wish anything for my son, it would be this kind of freedom.

Lately, I feel as though sometimes Patrick and I live in the land of “no”.

A lot of that is because Patrick is a typical two-year-old right now, exploring his world and testing his limits. So we have the normal no’s. “No, don’t pick things out of the garbage to put in your mouth,” “No, don’t throw things at the other people in church,” and “No, don’t turn that cup upside down.”

But there are other no’s, too. There are safety no’s like “don’t pull your line”, “don’t scratch your dressings,” “don’t play with epi pens,” and “don’t put sterile things in your mouth.” And there are practical no’s like “chew your food before you swallow it,” and “I know that tastes good, but stop eating now, or it will make you sick.”

And then there’s my least favorite kind of no‘s. The ones where I have to try to push Patrick’s limits to help him overcome developmental delays. Patrick’s speech therapist and I had a good talk about this kind of no this week when she tried to tell me I was being “too nice” when Patrick started avoiding the task she had given him. Patrick gets really frustrated with fine motor tasks like puzzles and will throw the pieces to avoid doing them. Or, his desire to chew will become so overwhelming, given that he’s not allowed to satisfy it with eating, that he won’t be able to resist putting a toy in his mouth. Or he’ll be asking me for something with a word that I understand but no other human on earth would guess the meaning of. Or he’ll fall and want me to give him my hand to help him get up, instead guiding him to get up on his own.

In all of these situations, it is my job to say “no” to the limiting behavior and to try, instead, to teach Patrick the wonderful things that he can do if he’ll just stretch his limits a little farther. And to Patrick it often seems that I am a very mean mommy who really likes to say “no”. (This is even harder when someone who doesn’t know is looking on and tells me it’s just his age and he’ll outgrow it and I should just let things be for now instead of being so strict.)

Can you see, a bit, why the image in my mind of Patrick standing totally free and happy and healthy at the top of a mountain… why that choked me up a little bit during the concert?

Patrick’s therapist reminded me that I’m not really just saying “no,” even though it may feel that way sometimes. (Except, I confess, sometimes, I get a little tired and grumpy and really am just saying “no.” I’m working hard to stop doing that.)

Really, although right now our little world has more no’s in it than most, the message isn’t really what can’t be done. Really all of this, every moment of it, is working towards helping Patrick to do all that he can. I’m trying to learn to use different and more positive words to match the message. And I’m working on making our actions match, too.

And so, that’s why this week when the weather was beautiful and warm for a couple of days, Patrick and I took his wagon to the school during his short little break from TPN. I wrapped his belly in ace bandages so the tubes couldn’t get caught and he climbed all over the playground equipment and went down the slides backwards and forwards and pushed his wagon across the schoolyard as fast as he could run until he couldn’t run any further and I had to put him in it the wagon and pull him back home. And that’s why the next day, even though the wind was so strong it almost blew him over, we stopped at another park just because we had the time and the park looked tube friendly and he could go anywhere he dreamed and I could keep up behind him with the backpack on. (We can be quite a sight sometimes, tied together as I try to do what a 2-year-old wants to do.) And that’s why, when I took him with me to a Relief Society activity at the church, I spent most of the time we were there following him as he discovered running in the gym and sliding on the floor and pushing the button to make the drinking fountain go, instead of making cake pops and handmade cards and visiting with the other women that were there, like I’d planned to do.

Why? So that Patrick gets to do all that he possibly can do and can escape as often as possible from the land of no.

So someday he can conquer his own mountains.

 

If you’d like to know more about Paul’s story, check out his blog at beforemyheartstops.blogspot.com

It could be said that today was not my best day. It started out seemingly ok. Despite the fact that I’d been up several times during the night (once on purpose to switch bags of fluids for Patrick and a couple of other times because of very strange dreams), the day started out quite promising. Patrick woke up very happy. He managed to throw all of the toys out of his crib, unzip his backpack and get out both epi pens, and open the med port on his g-tube letting his stomach drain all over his bed – and all with a smile and before I got myself up and into his room.

Still, he was thrilled that the mess and the fact that he was wide awake meant that he got to go straight to the bath.

We were supposed to have our back door installed today. This “supposed to be” has been happening for weeks now and I thought for sure we’d made it today as the contractor called to confirm before I even had Patrick dry and dressed. Within the hour, though, he called back and cancelled for health problems. And I was ok with it – something I was quite proud of.

I woke up feeling pretty sure I was getting sick. So, with my day newly opened up, I decided to go see a doctor and get some antibiotics before the weekend so I wouldn’t be down sick trying to get into urgent care on the one Saturday that Brian was scheduled to work. Especially since Brian is already sick.

I called and got the last available appointment of the day. Then I called my sister who was available and willing to help. She met me and came out to Patrick’s music group so that I could leave early if it went long.

Well, I knew things were off when we walked into music group because they room was arranged all wrong. The teacher was sick and there was a sub. Still, the kids came and we had fun singing and dancing, anyway, and it ended on time for me to drop Patrick at home and still make my appointment.

The appointment was quick and easy, too, and I thought to myself that I was quite on top of things.

Well, when you give a mouse a cookie…. Or when you give me a successful feeling morning with my family around, I might think it would be fun to go to lunch. My mom came and met us at the closest fast food place with a playground. We ordered lunch and Patrick ate marvelously well, and then got down SO excited to play on the AAAIIIII!! (This is his current word for slide). He even got brave enough to crawl into some of the tubey things, but not through them.

Finally, I said “Ok, just one more time down the slide.” He wanted to go on his belly like the other kids and I thought that if I helped him do it up on his knees a bit, it wouldn’t hurt any of his tubes.

But, alas, before he got to the slide, the clave of his loose lumen (that’s medical talk for the the blue thing on the end of one of this tubes) got stuck in a hole in the playground floor and before I could stop his forward momentum, the line snapped in half.

I kept my cool though and, even with a playland full of watching parents, calmly got his dressing loose enough to clamp off his tubes without even getting any blood on his shirt.

As I went to leave for the hospital, my mom said “Well, you might as well at least let him go down the slide that one time.” Which got me thinking, “Well, why not just let him keep playing?” So, with the help of Grandma and Aunt Marcy, I left Patrick to play tube free while I ran the 5 minutes home to grab TPN, a few supplies, and Patrick’s Woogie (a.k.a. iPod touch).

Along the way, I called ahead to the Rapid Treatment Unit where lines are repaired to let them know we were coming. They informed me that, thanks to RSV season, every bed was full and that we’d have to go to the E.R.

So, after picking Patrick up, I started making calls to see if i could find another option. I’m too experienced of a hospital mom and I know that this week is the beginning of the peak of RSV season and that a standard trip through the emergency department would mean a serious risk of Patrick getting sick.

I tried to call the GI clinic, but they weren’t picking up. So then I tried the hospital operator who was very direct in telling me that until 5 p.m., only the GI receptionist could connect me with the GI on call.

So, after several more attempts, I finally got through to Patrick’s GI’s nurse. I asked if they’d let us come in for a clinic visit with ANY doctor or nurse in the GI clinic and have the line repaired there. She made a couple calls, and came back to tell me that the appropriate way would have to be to go through the E.R.

This kind of hurt my feelings as I wasn’t trying to be inappropriate.. but I did my best to take some deep breaths and refocus myself as I arrived at the hospital. (Yes, I’m confess that I made all these calls while driving into the hospital.)

As expected, the E.R. parking lot was full. So was the entire first level of the parking garage. I got a space only by luck. And I thought, this could spell disaster.

Thankfully, my calls ahead had resulted in the E.R. having a plan and a room ready for us. They admitted us as an outpatient instead of an emergency visit.. a choice I’m thankful for as the difference is a $75 co-pay. And we got to skip triage. They showed us to a room in the far corner of the old section… nice and far away from the contagious patients. I breathed a sigh of relief.

IV team came it was two of my favorite nurses, which helps a lot. The repair went quickly. Patrick was a champion for a kid who only got a brief nap in the car. He even stayed relatively calm when they cleaned his skin with the nasty cloraprep that he is partially allergic and very sensitive to. (We’ve had to start allowing this, as the alcohol swabsticks in all of the dressing change kits in our network of hospitals have been recalled. Yes, I’m working on this problem so we don’t have to keep torturing this kid. But that’s a whole other post.) While they worked, Patrick and I played games on his iPod, sang songs and played peek-a-boo behind the sterile drape that they put over his face.

And then, the line was fixed. The doctor came in to look Patrick over briefly and, of course, to be intrigued and amazed by his history. Then he gave his official seal of approval and sent us on our way.

We left the hospital at 4:30, the beginning of rush hour. But still, made it home safe and sound.

Patrick was exhausted and definitely feeling the effects of his TPN being off. Finally I decided that he needed a nap, even though it was close to bedtime. So I rocked him and sang some songs and tucked him into his crib.

Then I cleaned up the living room and got dinner warming. (Thankfully, when Brian got home from work last night feeling super sick, all he wanted was Taco Bell, so I’d just put the dinner I’d made in the fridge for today.)

Then, I woke Patrick and gave him a cup with a big drink of formula in it. By then, he was surely feeling starved and thirsty.

He sat and drank a day and a half’s normal amount of formula while I got new TPN tubing primed and ready to go. I finished with half an hour left before the glue had set long enough for the repaired line to be safe to use.

Patrick wanted me to connect his TPN and cried when I told him he’d have to wait. That’s a first. It broke my heart.

Thankfully, Brian called to say he was getting away from work at last.. and that distracted Patrick a bit.

At 7:30 daddy got home just as we reached the magic hour where I could run the TPN again.

And then, with my best friend finally home, the tired and sick and lonely and overwhelmed feelings hit all at once and I couldn’t help but cry. I was just plain discouraged by how the day had gone. My best laid plans and oh so productive morning had just snowballed into one of the most difficult jobs of being Patrick’s mom: trying to keep him comfortable and calm when he has to be off his TPN.

I’m lucky to have a good husband who listened and didn’t criticize and didn’t complain about his twice-roasted pot roast cooked to Patrick’s dietary standards (meaning some of the best parts were left out with good intentions of adding them in at the end of cooking, but then abandoned when my day went bad.)

Patrick went willingly to bed by 8:30 and I’ve had a little time to rest now.

I did pretty well continuing to feel sorry for myself.

But then I got to thinking. How do I measure the success of this day? If you measure against my plans for this day, then I am a complete and total failure.

However, if you measure it for Patrick, this was an ok day. He woke up happy and had a great bath. He got to go to music group and a couple of his best friends were there. He got to skip his nap, be spoiled by his aunt, eat french fries and hamburger buns with Grandma and play on the AAAAIIIII!!!. He got to see his favorite IV team friend and give bones to a whole bunch of new people. He got to watch Mater on his iPod and play some of his favorite apps. When he started to not feel well, he got to cuddle with his mom and nap a while in her arms. Then, he got a veritable feast of neverending formula, made special for him roast potatoes, and to top it off, potato chips. (Yup. I gave him a bag of potato chips while I cleared the table after dinner.) He got to be hungry and eat foods he liked to try to satisfy his hunger – something he rarely experiences. And, to top it all off, when he started to feel better, it was on time for daddy to come home. Daddy played with him and even wore a priority mail envelope as a hat just to make Patrick happy. Then, mommy let his choose his pajamas. She let him wear his blue underpants on top of his diaper to bed, just cuz she was tired enough and he was dehydrated enough for it not to matter much. And, at the end of the day, he was safe at home snuggled in his own bed with his blanket and his monkey.

Did I do what I wanted today? No. Did I do everything in my power to make what could have been a bad day for Patrick an at least moderately good one? Absolutely.

Sometimes, that’s the very best I can do.

I’ve been a bit pensive this past couple of days.

Right after I wrote a post about routine, Patrick came down with a cold. You know, just a routine cold with runny nose and cough. Just like everyone else has right now.

Only I thought I was justified in being miserable about it. I even composed a wonderful tangent about how much more worry and grief and sorrow accompany a cold when it’s Patrick sick with it. (Which is, by the way, still true as any illness causes major gut complications.. but still, altogether, irrelevant.)

We took a couple of sick days where we did nothing but wipe noses and steam heads and read books and drain bellies and watch kid shows on netflix and treat diaper rash and play with toy cars and sleep and take Patrick’s temperature every hour or two and fret about whether or not we should tell someone medically trained that Patrick was sick.

His nose got better, but then the cold hit his gut and it started to be hard to sleep at night and yet, for all he was tired, Patrick didn’t want to nap during the day. On back to back days I spent HOURS trying to rock Patrick to sleep only to give up and let Brian do it instead.

Oh – and Brian had to work overtime because he’s transitioning into his new job.

And Patrick was so tired and grumpy that he didn’t want to do anything I said. I didn’t feel good and he just wanted to do what he wanted to do when he wanted to do it. I was convinced I was failing as a mother.

And I felt completely justified in being miserable.

And I wondered where my miracle was.

And then one of my very dear friends learned in an ultrasound that the baby she is expecting this summer has a birth defect that could be an isolated problem or could be a sign of a larger illness.

And then, another dear friend lost a second daughter to a cruel and unrelenting congenital illness.

I regained my perspective.

C.S. Lewis wrote:

“Little people like you and me, if our prayers are sometimes granted, beyond all hope and probability, had better not draw hasty conclusions to our own advantage. If we were stronger, we might be less tenderly treated. If we were braver we might be sent, with far less help, to defend far more desperate posts in the great battle.”

When you live a life filled with daily miracles, it is easy to take them for granted. It is easy to feel yourself forsaken when a loving Master doesn’t pave over every pothole in the road. Sometimes, when things are hard, despite prayers and hope and unwavering faith, it is because He knows we are stronger and braver than we think we are.

I have watched in wonder as my friend has humbly and trustingly returned another daughter to arms of her Heavenly Father. I am not yet that strong.

I have been very tenderly treated.

And, as I have watched these friends’ grace in loss, I am more thankful for the gift of a cheerful, lively, happy toddler. I am more determined to make each moment matter. I want to be more graceful and more gracious. I am seeking more Divine help.

So that I may, at least, live worthy of my post.

Today, I took Patrick to the dentist for the very first time. His pediatrician has been telling me for months that I need to and, well, routine dental care is actually a requirement for kids on a transplant list. But I’ve been nervous. Dental care is one of those things that can set bacteria loose in the bloodstream and I didn’t want to risk another infection with just a dental cleaning.

A few months ago, I resolved that I’d take Patrick to the dentist after I’d had a chance to pick the brains of the docs in Seattle about how to do it safely. Today was the day.

I did a TON of research in picking a dentist. I had a few requirements. 1)The dentist had to have experience with special needs kids. I know what it’s like to try to get treatment from a doctor who doesn’t know anything about TPN or central lines. I wasn’t going to risk that in a dentist. 2) He had to know how to handle Patrick’s sensory needs and do the work in a way that wouldn’t add to risks of oral aversion. 3) The dentist’s office had to be funner than Patrick’s average doctor’s office. After all, with all the hours he’s logged in boring hospital clinics, I figure he’s earned a really cool dentist.

Finally, after hours of searching online, I came across a blog about this great dentist in South Jordan. Little People’s Dental.

They met all my requirements. Dr. Stewart did his pediatric dental residency at Primary Children’s and still works there in addition to his regular practice. His website had various videos of him teaching about children’s dental care on a local TV show and he seemed to know his stuff. The mom writing the blog raved about how well he did handling the sensory needs of the little boy. The admission paperwork (which I downloaded from their website) even had an optional page where I could tell the dentist about Patrick’s communication and sensory needs. And the office? Well, it had both a playhouse AND a slide.

The appointment went really well. Patrick was in love with the magnet wall inside the playhouse, though he soon thought the magnets should stick to all the walls in the office. He ran along the stepping stones, climbed up and down the stairs, and slid down the slide which he called an “AAiii!” Oh, and of course he flirted with the friendly office staff

Finally, it was time for the appointment. They showed us to the room and immediately pulled out a puzzle for Patrick to play with. This is why I have only one good picture from the room. Patrick saw the cabinet where the toys were kept.. it even had a hole in it that he could look into to see the other toys.. and so his attention went there for most of the visit. Besides, we hardly waited in the room at all.

Dr. Stewart came in and while Patrick played with the dental assistant, the toys, and the nifty button that made the dentist’s chair go up and down, Dr. Stewart asked me questions about Patrick’s medical needs: his liver, his TPN, his diet.

Then, he gave me a crash course in children’s dental health. Here are a few things I learned.

1) The primary caregiver’s dental history can affect the child. This has nothing to do with genetics. I guess it’s the bacteria that live in your mouth. Therefore, because I have had few cavities in my life, meaning my bacteria is good, there is a greater chance that the bacteria in Patrick’s mouth will be good, too.

2) However, the screwed up bacterial balance in a child with short gut can offset this, so we’ll still treat Patrick as being high risk for tooth decay.

3) It’s a good idea to let kids go at least 2 hours between eating to discourage tooth decay. That means that, at most, his “small frequent meals” would be about 6 times a day. This doesn’t count g-tube feeding. Right now that’s easy, but after transplant when frequent small snacks are a must, I may need to adapt to protect Patrick’s teeth.

4) Teeth that touch and deep pits and grooves are places most likely to get cavities, so they are important places to clean.

5) Patrick’s adult teeth are forming now. Who knows how his health will affect their development, but if there are problems (say from his liver) there are options to correct them.

It made me smile as the dentist warned about the dangers of candy, carbohydrates, juice and pop. (All on Patrick’s forever forbidden list.. But the message of keeping teeth clean was heard.) And I was surprised that he didn’t give me a lecture about using a pacifier. In fact, he said that it looked like I was following the exact right schedule for slowly weaning him away from it. He looked at Patrick’s teeth and answered my questions about safe non-food chewable options to meet Patrick’s need to chew.

I knew from the website that the dental exam wouldn’t be done in the dentist’s chair. Instead, he had Patrick sit on my lap, then he put his knees up to mine and had Patrick lay his head back on his lap. I restrained and comforted Patrick while Dr. Stewart counted his teeth. (Just cutting his 2-year-old molars, and he’ll have all his baby teeth.) He scraped the plaque off and that’s when Patrick started to get nervous.

Flossing was new and that made Patrick cry, but it was done quickly and we got to move on to funner things like toothbrushing and putting on fluoride. Dr. Stewart showed me the right way to do these, including where to put my fingers to help keep his mouth open without getting bitten and told me that the more we brush and floss at home, the less scary the dentist’s office will be.

Because he throws up easily, Patrick has permission to start using fluoride toothpaste now to make his teeth strong.. He’ll swallow it, but as long as I don’t give more than the size of a piece of rice each day, that should be ok.

And then, we were done. They gave Patrick a stack of “prizes,” mostly coupons for goodies, some of which Patrick can have, and some not. And then he said to brush and floss the way he’d shown me… including having Patrick lay back in my lap.. and to come back in 6 months.

It was everything I could have hoped for in a dentist visit. I’m glad I did my research because I don’t think we could have hoped for a better first trip to the dentist.

If you’re looking for a pediatric dentist, especial one who can handle special needs, I’d highly recommend Dr. Stewart.