Patrick Hoopes

I can’t believe it’s been a whole MONTH that Patrick has been attending preschool! “Koo koo” (School) and “Aaa” (Ann – pronounced with tongue protruding) have quickly become a highlight in Patrick’s week.

He started the last week of November after a long wait to get the medical plan for Patrick written. It took so long that I quit preparing so I wouldn’t get nervous and then had to make a mad scramble to finish off supplies the night before school. (In case of emergency, we keep a gallon sized bag of central line supplies and another gallon size bag of g-tube supplies, an epi pen and three bottles of medicine in the school nurse’s office… not to mention the backpack full of diapering supplies that Patrick carries to and from school. He also has a 20 page care notebook, including a detailed emergency plan for every thing I could think of that could go wrong.)

The first day, I got to go to class with Patrick. We went first to the nurse’s office so I could train the nurses on all the supplies that Patrick carries and the most likely problems with each.

Then, his teacher came and got him so he could play in the sensory room while I finished up. The sensory room is a room filled with lights, sounds, cushions, a ball pit, ramps and slides and other fun things. Patrick was nervous at first, but loving the remote control of the lights by the time I got there. Patrick’s class goes to the sensory room or the gym for recess in the winter so that the cold doesn’t affect their health. After seeing this room, I think the other kids are the ones missing out.

After the sensory room, we went back to class for circle time and then skills practice. They were working on folding that day, so Patrick folded a rag and then a piece of paper. (Now he thinks he can fold laundry.)

Then, his group switched over for speech. Patrick and two other boys sat at the table and took turns playing with balls that had toys hidden inside, while learning to ask “I want”. It was a simple activity and Patrick preferred to throw the balls, which made the other boys throw the balls, too. But it really impressed me to watch because I realized that the other kids talked like Patrick talks. In fact, as I watched the rest of the day, the other kids played like Patrick plays.

For the first time in probably his entire life, Patrick was among peers. Kids who weren’t ahead of or behind him. Just with him.

They did toy time next and Patrick’s aide (yes, he has been assigned a designated aide to stay with him and protect his line in class) got a good lesson in how quick he can be and how much you have to watch him. Meanwhile, the teacher went out of her way to make sure that Patrick didn’t just play alone, but was invited to play with the other kids, too.

Next was snack time. They had pudding, which was a good chance for me to demonstrate how careful we have to be around messy milk products. Patrick had fun eating pretzels at the same time as Teacher Ann.

And then, as eating always creates a need, we headed to the changing room for a diaper change. They called the entire nursing staff, the teacher and all the aides into the room so I could show them how to use Patrick’s diaper creams. (Good thing Patrick isn’t shy or modest yet.)

Then, the pumps alarmed with air in the line so I got to show the nurses how to handle that, too.

And one story and circle time later, it was over.

Patrick’s teacher warned me that it would be hard to leave the next time so I’d better plan distractions.

Good thing it was Christmas time because although it was a treat the next class day to go get a haircut for the first time in 3 years without needing reinforcements… that didn’t take long enough, and I ended up killing time by Christmas shopping and writing letters.

In fact, our pocketbook probably feels that adjustment a bit, as Christmas shopping is how I got through the next several class days. I didn’t dare go home for fear they’d need to call me back.

It was a few weeks before I finally made it home, only to walk in and find Patrick’s diaper kit in the living room and have to run it back.

But I am proud to say, at long last, that I am learning the joys of that time at home. Cleaning is so much easier and my house, now that Christmas is past, is beginning to feel like it’s in order without major effort to get it that way.

Patrick is blossoming in school. I don’t know a lot of what he does there because he doesn’t talk enough to tell me about it. But last week he brought home two sheets of paper covered in obviously very guided examples of the letter F. And now Patrick is trying to pronounce that sound in his words.

He loves checking books out from their classroom library. And he loves P.E. “Ba Aaa” (Ball Ann) is one of the few things Patrick will tell me about his day.

And so far, his biggest medical emergencies have been one leaky diaper and one closed central line clamp that earned him a trip to the nurse’s office. (Maybe one day they’ll be brave enough to silence the alarm and check the clamps before making this journey, but who knows.)

A month of school is really only about 9 days so far, so this is all still new and we’ll all get smoother as things go along.

Any way it goes, Patrick loves school. And I love that he gets the experience. There could not be a school or class or teacher better suited for him right now.

I am a very, very lucky girl. I have two wonderful men in my life. They make me so incredibly happy! Tomorrow I’ll celebrate 8 years of marriage to my best friend, Brian (though you may call him Howie). Two days ago we celebrated 3 years since we were able to bring Patrick home for the hospital for the first time. These are my boys and I am very happy to have them in my life.

You might think it’s special when your husband takes you out for a nice dinner alone. I do, too. I love dates with my husband. We went to a Blue Man Group concert yesterday, just the two of us, and it was nice to be together just us.

But more often than not, when I go out to a nice restaurant, I am accompanied by both of my boys.

And yes, although we went alone to the concert, Brian and I took Patrick along for our anniversary dinner. We were in the neighborhood of a nice Italian restaurant we wanted to try because we’d gone to look at Christmas lights, and so, we took Patrick and we went.

Patrick is a real fan of gourmet food. He’ll go entire days where he barely eats at home.. But take him into an expensive restaurant, and he’s all about trying new flavors. He insisted on sharing my ” ‘ghetti” with me. Kind of tricky, since he’s allergic to the eggs in the noodles and to cheese.. But we managed to get by dipping bites of potato in the tomato sauce.

A few nights earlier, we were eating out and he got really excited telling me “tee tee”.. I didn’t get, till he added “gob gob gob” that he wanted the turkey from my sandwich.

And let’s not even mention his opinion of chocolate syrup. Ordering dessert is requiring a lot more caution these days.

But, for a three-year-old (and one who really barely eats) he really has pretty good restaurant manners. He puts his napkin in his lap and he is quite happy with a cup of water and a straw for most of the meal. The crayons are just a distraction, mostly, and often end up on the floor. But, so long as the people around us aren’t sitting too close or aren’t too determined to engage him in conversation, he’s really quite the nice date.

Last month, my two dates took me out for my birthday. Can I tell you this was one of my favorite date nights ever? Brian came home early from work and took me to eat at the Garden, a fairly nice restaurant on the 12th floor of the Joseph Smith memorial building that overlooks downtown Salt Lake City, specifically the Salt Lake temple.

After dinner, we went to the windows and admired the view for a little while.

Then, we went down to the temple grounds. If you’re not familiar with Salt Lake, Temple Square is a two block area of the city filled with beautiful gardens and fountains. We wandered the gardens and then went into the visitor’s center where paintings of Christ 10 feet tall adorn the walls. We wandered upstairs to see the Christus statue and then downstairs to see the exhibit on prophets and scriptures.

There is a joy that wandering around temple square with my two boys brings that is uncomparable to anything else in the world. I feel so blessed when we are there.

And so, of course I thought I was in heaven when we were back there again this Friday night to see their Christmas light display. (Patrick walked around the entire temple and touched every window he could.).. And then out to dinner. Then yesterday, a one-on-one date with the love of my life.. followed by a family date to Rumbi for dinner, where Patrick chowed down on rice and soy sauce, one of his new favorite foods.

Yes. With my husband by my side and my little boy often hanging from our hands between, I am very lucky in love.

Yup. I jinxed myself. By drawing parallels including a hospital stay in my last blog post, I jinxed myself. Or Patrick. Or something.

Oh, and I’m a bad, bad blogger as this story will have to go back 3 weeks to explain.

3 Sundays ago, I was trying to do the dishes and Patrick was trying to help me do the dishes and it wasn’t going well at all. So I kept turning him around and sending him back to the living room to play. And guess what, he did! He went and played and let me finish the dishes.

Only, when I got to the living room after the dishes were done, I found that Patrick’s tubing had gotten caught on the phone stand in the kitchen… and he, being urged to go play, had… He’d gone as far as he possibly could, pulling the line taut enough to pop open the safety pin that secures it to his shirt.

I immediately got the line unstuck, but the lumen that had been stretched looked, well, stretched. It looked longer than the other one.. and on closer inspection I found that Patrick had pulled hard enough that the tiny little plastic piece on the end had been pulled out of place.

I cleaned it and wanted to just leave it, but the cautious part of me said to at least have IV team check it out. So, we got Patrick’s pajamas and away to the hospital we went for the evening.

IV team looked, but they weren’t any more sure than I was what you’d find inside the line, and so decided it was best to cut off the end and use a repair kit to replace it. The work was quick and he was only an hour late for bedtime.

Thursday, though, I noticed that Patrick’s shirt was wet in an odd spot and it smelled like TPN.  So I called a neighbor to come help me to take off his dressing and look for leaks but couldn’t find any. We put on a new dressing and decided to watch it.

That night Brian worked an all-nighter. At 3 a.m. I woke up just wide awake. If you know me, I don’t do that.. at least not if things are ok. But there I was, not sleeping… and then Patrick’s pump alarmed. I went in to check and found that the repaired side of his line wasn’t under the dressing in anymore and was all tangled, causing the pump to alarm. He was also wet again… with a sticky sweet liquid like TPN.

So, I switched out the lumen that the TPN was running through and flushed the other only to, once again, not be able to recreate the leak. I came to the conclusion that the repair was probably leaking, but only when there was an occlusion and pressure built up. I also came to the conclusion that he hadn’t slept well so far that night and could use more sleep. He had an appointment at 10 a.m. that we’d waiting weeks for and I opted to leave things as they were until after that appointment then go get it repaired.

He, however, came to the conclusion that he didn’t know what time it was and didn’t want to go back to sleep and it was one very, very long night!

The next day we headed up to the hospital, explained my theory about the repair being faulty, and they cut it out and repaired the line again. They were so busy that it was well into the afternoon before that was all done. But the line worked and went went back home.

Sunday, except for church, Brian spent the whole day making a fabulous Sunday dinner for his family in celebration of my birthday. Patrick did great through the whole dinner.

Then, family left and I flushed his line, ethanol locked one lumen and connected TPN to the other. Within half an hour, Patrick started to lay on the floor and beg to be held by daddy. These are both signs of him not feeling well, so we grabbed a thermometer to check and his temperature was up, but he didn’t yet have a fever. We kept him up an extra hour to watch, but a fever never came.

Finally, we put on his pajamas, gave him his meds, said prayers and put him in bed. But less than an hour later, he woke up crying. I knew as soon as I picked up him that he had an infection. There’s a certain cry and a restlessness in his legs and a certain way he arches his back. The thermometer did not agree, but I made Brian pack our bags regardless.

Before the bags were packed, Patrick had a low-grade fever. I called the doctor on call to explain symptoms and tell him I was bringing Patrick in. He told us to go directly to the E.R. Before we left the house, Patrick’s temperature was 102.

Thankfully, the E.R. was unusually slow for a Sunday night and we got quick and ample attention. They gave Patrick some Motrin right away, as his fever had reached 104 on the drive up. They took his vitals, drew blood cultures and a CBC that showed a low white count. (Last infection came with a low white count, so this convinced me he was sick.) And then they started him on antibiotics.

Amazingly, he fell asleep in the E.R. and when we got to the floor just after midnight, let me rock him right back to sleep again. By 2, he was feverless and sleeping peacefully in his own bed. It was our smoothest admission night ever.

We waited 48 hours more, but the blood cultures never grew to explain the fever. This doesn’t mean there was no infection. The timing of the fever indicates that there was bacteria in Patrick’s line and when I flushed it to connect TPN, I flushed it right into his heart. However, what it does prove is that we caught the symptoms SUPER quickly and treated the infection before it grew in the bloodstream. The ethanol lock most likely killed any evidence there was of it in the line.

It’s getting harder and harder to keep Patrick in a hospital room. He has to have monitors on for the first day and staying close enough for them to read makes him stir-crazy from the get-go. Thank goodness for child life specialists whom he knows and trusts, who bring him toys exactly suited to his tastes, and who will play catch with him ad nauseum.

I taught him to hide in the cupboards this stay and he spent most of his playtime going in and out of them.

Our second night in the hospital, Patrick went right to sleep. However, his nurse came in just an hour later, leaving the door wide open for light and started talking to me in what I call her “daytime voice” to tell me about how to safely give Patrick’s replacement fluids. (Sigh. As if I didn’t already know.)

That set Patrick to tossing and turning and nothing I did could settle him. An hour later, he was wide awake. We watched Bob the Builder 3 times. He discovered the fun reaction you get when you slap mom in the face repeatedly. Finally, at 2 a.m. the nurses took him for a walk so I could grab a nap.

Rested and calm again, I went and brought him back to the room and finally got him to sleep. But alas, within half an hour, he was back to tossing and turning violently. Something obviously felt off, but I couldn’t figure out what.

At 4, I asked the nurse to track down help for a priesthood blessing. She came back with our favorite nurse from Patrick’s surgery recovery. Patrick was happy to see him. Then, the doctor came and we talked about options and decided to give Patrick some melatonin to help him rest. He fell asleep right away and slept till noon.

We hit 48 hours on cultures that night at midnight, but as we hadn’t slept the night before, I’d accepted the offer to give Patrick a little more melatonin to help him sleep. This is good because we had the same nurse again the next night. Not only was she just as noisy, but the evening started out so crazy that Patrick just ended up crawling onto my lap on the bed and falling asleep while she tried to finish his scheduled cares, meds and vitals for the night.

He slept well till 5, then was wide awake asking for the nurse to check his BP. So, we got up and had a pretty fun morning wandering around the hospital visiting his favorite nurses in the other units. We found a pod in infant unit that was completely empty and one of Patrick’s favorite primary nurses said it was ok for him to play there and move the furniture. He did for nearly and hour.

And then, Brian took an early lunch break and brought us home. We were home by noon and slept all day.

So far, Patrick’s symptoms have not returned.

Overall, it wasn’t a bad hospital stay. He played in the playroom for several hours. We visited spiderman I don’t know how many times. We discovered that he likes chex mix and that it’s safe for him to eat. He got his very own badge pull and we made friends in the cafeteria.

But, I think we’ve seen our share of hospitals for the holiday season. I am hoping that Patrick agrees.

I’m still struggling to wrap my mind around age 3. Patrick seems so much more grown up. He’s doing so much more than I ever imagined on his own.

And I’ll admit that, while I’m excited about the 6 hours a week that I’ll have to myself while he’s in preschool, I am having a bit of a hard time with the idea of being away from him for 6 hour a week.

But right at this moment, I’ve been given a rare gift.

My calendar for the past 2 weeks has had one appointment on it. A 15 minute appointment scheduled for tomorrow morning.

Right after signing Patrick’s adoption papers, there was nothing more I could do than just sit in his hospital room with him and just get to know him, love him, enjoy him.. because we were waiting for everyone else to get things in order to bring him home. Those were some of the best days of my life.

This year, again Patrick and I are spending most of our days alone together, just the two of us. Meanwhile, the doctors and dietician and their nurse and the district and school nurses have been meeting and working on Patrick’s healthcare plan so he can go to school.

And while we let other people hammer out the details of the paperwork (and try not to call too often to offer help), I am able again to get to know him, love him, enjoy him.

Sure, we’re making each other a bit nuts. He wishes I’d just quit trying to accomplish things and play with him. I wish he’d quit tugging on my arm while I try to type or quit emptying my laundry basket as I fold the laundry.

But inbetween that, we have played playdough and taken him around the neighborhood on his new tricycle and eaten forbidden treats together. (Patrick loves cookies and chocolate. And is not supposed to have either.) We went to Barnes and Noble for story time, which was fun but too short. Then we went to library story time and that was much more fun, but some of the books were too long. We renewed my driver’s license, which took 2 hours and was no fun, but afterwards as a reward, we went and got french fries and played on the slides at Arctic Circle, which almost made up for it.

We’ve had tickle fights on the bean bag chair. We have read every book in his bedroom at least once, and Mr. Brown Can Moo at least 3 times a day. We’ve eaten lots of pretend food. We have played playdough on the living room floor. Patrick broke his line, which wasn’t fun, but also wasn’t too hard to fix.

I took him to his first theater movie yesterday. We saw Cars 2 at the dollar theater in the 3:00 matinee. We arrived twenty minutes late, just on time to catch the last seconds of the last trailer. Patrick was afraid of the theater at first and just cried, but once he saw Toy Story with Mr. Potato Head on the screen, it was ok… so long as I covered his ears.

He got good at putting my hands on his ears when it go too loud, then he’d check to see if it was still loud by uncovering them, then quickly putting them back on.

His line came disconnected half an hour into the show and I didn’t catch it till my lap was full of blood. But he was ok, and the TPN had just ended, so we sat down on the theater floor and I disconnected him.

It’s good we had the theater to ourselves.

Then he ran down to the front of the theater to see the screen up close. And then ran up and down the aisle for about 15 mintues, asked to leave, then as soon as we were out the door, begged to go back.

He stayed for the entire movie.

Today the dietician called for help completing the school district’s medical forms. That means that this little break is drawing to a close.

I’m both incredibly anxious for him to go to school and sorry to see it end.

I like sleeping in and not having any rush to bathe and get dressed. And I like playing on the floor with Patrick all afternoon. And I’m not sure I’m quite ready for my little boy to start doing such a big boy thing.

But I know he’s lonely. He misses his therapists and he misses his friends from his classes and he’s ready to move on.

And really, so am I.

But I’m grateful that I’ve been given these few weeks again… just like I had with him right after we met.

And soon we’ll be ready to face age 3 head on.

He’s three! Can you believe that? Three!! No one.. NO ONE talking to us about Patrick’s prognosis ever lead us to hope for a third birthday.

Perhaps that is why I felt so much pressure in planning this year’s birthday celebration. Because really, it seems like every year is just one more amazingly huge and miraculous BIG DEAL. I let it psych me out. Thank goodness for a good husband who grounded me a bit and reminded me that we mostly needed to plan this birthday for Patrick.

And so, we did a whole lot of what Patrick liked to celebrate his birthday.

To begin, we started celebrating the Saturday before his birthday. No matter what, it’s still awfully hard to compete with Halloween celebrations, and so since he’s still too young to tell the days apart, we spoiled him rotten a few days early.

Saturday afternoon, we met Brian’s sister and her family and my sister and her family and Brian’s dad at the zoo.  It was trick-or-treating day at the zoo so it was a little crazy with masses of people and lots of costumes. And because of that, we didn’t allow a lot of time. But, we still managed to fit in a ride on the carousel, and we saw the tigers and giraffes and elephants.

And then we had all the cousins (one in costume) gather for this picture and they were all very cute…

Until Patrick pushed his littlest cousin off the bench onto the ground, and then we decided it was time to go.

The next stop was Tepanyaki Steakhouse, one of those great Japanese restaurants where the chef cooks your meal right in front of you with all kind of fun and fire.

All the grandparents met us here, along with some aunts, uncles and cousins. There were enough of us to need them to connect the tables together, which is something I didn’t even know they had a way to do. (Sorry to my mom and dad who got stuck at the little spacer table.)

We came for the soup, which is still one of Patrick’s very favorite foods. The show and yummy food for us was a bonus.

The waitress was even kind enough help us sing to him, even though he couldn’t have the free dessert to come with it. You should have seen him smile when he heard his name in the song!

It was a good day!

We did Patrick’s birthday cake (for the first time) on Sunday at our family dinner with Brian’s family.

This year, we chose Bob the Builder as the theme for the “cake.” Notice the quotation marks there? That’s because there was no food in the cake this year, either. Instead, I made foam diggers to match the show and put them all around the sides and then spent far more time than I really want to confess to painting a background scene and bricks to match the show as accurately as possible. Finally, we ordered a set of Bob the Builder diggers on e-bay. I’d meant to buy these in a store or online but we discovered that they are incredibly difficult to find. Bless the e-bay seller who managed to get these toys to us on time for the birthday.

The first time he saw his cake, Patrick pretty much ignored the candle. Instead, he said “gih-goh” (digger) and grabbed Lofty from the top of the cake.

When he discovered the cake was full of all his favorite Bob the Builder friends, he was one happy kid.

Then, we opened some other presents and played with noisemakers and then took him home to bed.. we had work to do.

Sunday night, Brian put together Patrick’s birthday present so we could have it waiting for him in the living room as soon as he woke up. I wrapped up a couple of other presents and put them there, too.

His face lit up when he spotted his very own tricycle!

Even though there was frost on the ground and the sun was just up, he had to take it for a test drive. (Yes, it has a handle on the back to allow a parent to steer… This is great while he’s learning.)

We sent Brian to work. Patrick rode (or I pushed him) for the next hour.

Then, he was finally ready for more presents:  new backpack to take to school, and a tool set to go with his halloween costume.

I let him play for another hour, and then we had to hurry and get him dressed. Halloween means trick-or-treating at Daddy’s work.

Of course, Patrick also dressed as Bob the Builder this year. He was really excited about the tool belt. (In fact, wore it every day for the next week.)… And he was very cute trick-or-treating from desk to desk, though he had a bad habit of sticking every candy bar that had peanuts directly into his mouth.

After a nap, we went and visited grandparents where we snapped these very cute pictures of his costume.

 

Then, we rushed home to finish trick-or-treating in our neighborhood. Cramming all that halloween into a birthday is tricky stuff!

But Patrick was happy as he got what he’d really wished for all day, another chance to ride his bike. Yup, he trick-or-treated on wheels this year. And he loved it much more than last year!

Then, we came home and while we warmed up, Daddy helped Patrick to decorate his very first pumpkin. (Sorry, Patrick kept blinking at or turning away from the camera.)

I was so excited to find Mr. Potato Head parts for the pumpkin. He’s not old enough to carve, but he totally got how to do this!

And then we put him to bed.

Because he’s done with early intervention but not yet able to start preschool, I let him keep all the birthday in the living room, including the tricycle, for the whole week. We went for rides and played with diggers and he wore various parts of his costume and played with balloons.

And just as the novelty of that wore off, we got to go celebrate his birthday one more time with HopeKids. The HopeKids birthday party is quickly becoming a favorite tradition for me. Classic Fun Center opens for just HopeKids for the morning. They give families free reign of the inflatables and lift all the rules about shoes and carrying kids and where grownups should and should not be. In other words, they remove all the barriers possible to allow kids a chance to do things they otherwise couldn’t do.

And for Patrick, this is a big deal. Once a year, he can play on inflatables because mom and dad can help.

And so, Brian carried him up the giant slide at least half a dozen times just because he loves the thrill of the big slide. And then he jumped and made him fall over at least 2 dozen times in the bounce area.

This year, they’d added something even more wonderful, though… toddlerland. An inflatable made just for toddlers that was a little firmer for easier walking… and that had a slide that Patrick could almost do himself!

Brian climbed up into the top so that he could move the tubes around. Then Patrick would climb up the steps ALMOST without any help. Brian would help position him at the top of the slide and move the tubes over.. Then Patrick would push off and down the slide he’d go. Then shout “MO MO” (more) or ” ‘GIN” (again) and start back up all over again.

We also visited the blast zone, which was fun but a little bit too loud for Patrick’s taste. Still, he liked the climb to get there.

At last, our time was up and we joined the rest of the group for cake and presents. They sang to the kids and Patrick blew out a candle in a cupcake.

And then, we came home for some well-earned naps.

Sunday was our last birthday celebration. This time with my family.

This time I remembered to take a picture of the cake, though I changed the top. Why? Because at the time I thought I’d like to tell the parties apart, though in hindsight I wonder why.

In the background you can see the cake for Patrick’s older cousin whose birthday is a few days after his. We sang to them both and he grinned just as big.

Then he blew out the candle, but his blow wasn’t strong enough and dad had to help.

And this time the cake was full of replica caterpiller diggers.

And at long last, after over a week of celebrating, we were done with Patrick’s birthday.

That’s a lot of party for a little guy. But, hey, that’s a lot of living and miracles for a little guy.

I should be asleep. It’s bedtime. Everyone else in my house is asleep. But my mind doesn’t want to rest right now. It is running from one topic to another to another and I finally decided that rather than hiding from blogging what’s on my mind, I’m going to dump it all out here in one cathartic rant.

My baby is turning three on Monday.

And turning 3 means that this week is his last week of early intervention. Today the last therapist came to our house that they will ever send. Tomorrow will be his last structured play class and then Friday will be the last of Musikgarten. We’re taking gifts to his classmates tomorrow and the Friday.

It is bittersweet to be saying goodbye to therapists who have become friends and allies, who have gotten Patrick from barely rolling over to an active, happy little boy who 95% of people don’t even know struggles as much as he does. It is scary to feel like we’re starting over.

It’s really a positive step forward. Last week Patrick and I went and spent the morning in his preschool class. It was amazing! His teacher is so kind and so knowledgeable! She is determined to learn how to take good care of him. And Patrick’s face just lit up with excitement as he got to sit with peers and listen to stories and sing songs and do crafts.

He is going to thrive in preschool!

So long as we can keep him healthy. And that is the one scariest part for me. Patrick had follow-ups with 3 of his specialists last week. And so I spent the first part of last week drafting an “Emergency Care Plan” for his doctors to sign off on that would summarize every scary short-gut related emergency that Patrick could have and how the school would need to respond to it. It was 10 pages long. It could have been longer.

And I made a list of everything that I do for Patrick during the time that he is in school so that the doctors can write orders for the school nurses (There are two on site at all times at this school) can do those things for him. That was 4 pages long. I think my assembled notes and new “Care Notebook” are over two dozen pages.

I have one meeting tomorrow to try to cover it all in. And all the pressure of worrying about setting appropriate IEP goals, too.

But mostly, I’ve been able to hide from that. We’ve had enough else going on.

For example, on Thursday morning, I was rushing to get Patrick to an appointment with his surgeon. And, in the blinding, rising morning sun, another driver didn’t see me. We were both going under 5 mph and so the damage is minimal and the other driver does body work for a living and will repair it. But it’s one more thing.

And on Monday morning, while treating diaper rash, I used some stoma powder.. only to have Patrick’s eyes swell up and him start to sneeze. And then while I was looking for what could possibly have caused that reaction found several articles linking severe cashew allergy with pectin allergy. When we saw the allergist for Patrick’s flu shot (Which took 3.5 hours to get!) I showed him an article and asked about it and he said that there was no standardized way for him to test for a pectin allergy.. but that I could probably safely assume that Patrick is at least allergic to inhaling pectin powder. So now I’ve added pectin to the list of possible allergens for Patrick. And have virtually no idea what that will mean.. except no stoma powder. Which I can live with. Until after transplant when he needs a stoma.

And then, because of a bunch of other crazy circumstances, naptime got all thrown off yesterday so he slept into his TPN break. And when he woke up, he was screaming. But I calmed him down and thought things were ok. Until he started to lay on the living room floor instead of playing and whimpering. Thats never a good sign so I checked his blood sugar and it was on the low end of normal. So I gave him some formula.. and I called Brian and we decided to start his TPN early. And then his blood sugar had a quick spike, and then he was ok.

Until today when I got him up from his nap… and he was happy and seemed ok for half an hour, when he got really clumsy and was falling down a lot.. So I put him in the living room chair and ran to get his glucometer.. and walked back into the room to see him just topple head first out of the chair.. and then start screaming. He was ok. Couldn’t even find a goose egg. This time his blood sugar was low, but just barely out of the normal range. So I gave him more formula to drink and some bunny cookies and called his dietician.. Who wasn’t all that concerned, except that she said that a rapid drop in blood sugar could cause problems and to watch more closely. And she told me to start adding corn starch to formula and give it to him BEFORE he gets lethargic as his TPN tapers off. He’s got a mild allergy to corn, though, so I don’t know about that. But at least I’ll make sure he gets some formula and some cookies earlier…

And by the time I got off the phone, his blood sugar was back in the normal range.. But I didn’t feel any better because I don’t know why this is happening every day. It doesn’t seem exactly safe, even though i can stabilize him quickly and safely at home so far.

They’ll do a bunch of labwork on Monday. At least, I hope they will. So that hopefully we can get some answers. And I just realized that Monday is also Halloween and his birthday… and that will be interesting logistics. But we’ll make it work.

And, yeah, speaking of that… Monday is Halloween and his birthday! I have his Halloween costume. And I have some stickers I can trade him for the candy he’ll get trick or treating. And I have an undecorated hat box for a birthday cake, but can’t quite put my finger on how to decorate it this year. And some favors to go inside the box that may or may not correlate to the theme.

And I have a birthday video that I was supposed to get in the mail no later than today… except I didn’t.

Because on top of all of this, Brian was up sick all last night.. with a stomach bug. And today he has a fever. And that viral combination is a Short Gut family’s least favorite as it can mean bit gut complications and an admission if a fever appears. I was sick this morning, too, but it passed quickly, at least most of it. But my poor husband is miserable.

And I’m just praying Patrick doesn’t catch it. Because, if he does, then my attempts to plan for his birthday will have to be relocated to the hospital. Of course, maybe he’s already got it and that would explain his slow motility and crazy afternoon behavior this week. Or maybe it’s nothing. It needs to be nothing. Because Patrick deserves another birthday at home.. even if I didn’t plan a party.

But just in case, I’d better come up with a plan for and finish the cake tomorrow.

And I need to schedule 2 doctor’s appointments. And fill a prescription or two. And arrange to have my car fixed. And do my visiting teaching.

Can you see why I can’t focus? And why tonight it’s hard to sleep?

But I’d better sleep.

Patrick gets up at 6 a.m. That will be great for school. It’s not so great now.

I have stories of our funner adventures last week. However, before the impressions of this week leave me, I want to get them written down.

Monday afternoon Seattle Children’s gave me the go-ahead to reactivate Patrick on the tranplant list. All they needed was Patrick’s height and weight. So, Tuesday I took him up to the hospital to get him weighed and measured and then brought him home for a nap.

We’d been home for half an hour when Patrick woke up just sobbing. My first thought was that his stomach was hurting, but draining his belly didn’t help, nor did changing his diaper.

Finally, his temperature started to rise slowly and I started to think infection, either in his central line as a complication from the surgery. After about an hour, his fever hit 101.5 and Patrick was inconsolable. So, off to the E.R. we went.

Patrick was so hysterical, and with his history of high, high fevers causing chills and convulsions – I didn’t think I could drive him in as he was. So I gave him some ibuprofen while I packed the essentials. By the time we got to the car and I told him we were going to the hospital, he was settled down.

Still, even with ibuprofen in his system, he was running a fever of 101.4 when they checked it in triage. They gave him some Tylenol, too, and showed us to a room.

The E.R. was crazy busy this time. The doctor and nurse came in right away and soon they’d drawn blood cultures and some other tests to look for infection. Then, in super slow E.R. time we waited for lab results and for a consulation from surgery. Surgery recommended x-rays, which showed that there were no problems with Patrick’s belly.

And then, at last, with all those tests done, 3 hours later the doctor came to say that all of the immediate results didn’t show anything wrong, except for a low white blood cell count, which sometimes comes with a virus. Well, that and his heart rate was really high and he needed two fever reducers to keep his temperature down.

They decided to give Patrick a dose of ceftriaxone, a broad spectrum antibiotic that isn’t as strong as he usually gets for line infection, but that lasts 24 hours. (His heart rate immediately improved.) And then, they sent us home with instructions to follow up with Patrick’s normal GI first thing in the morning.

I didn’t really feel like a virus was a good explanation, but the doctor seemed pretty sure of the plan and it didn’t seem like we were getting much further were we were. At 5 hours after we arrived in the E.R. with a fever, they sent us home.. for the first time ever.

We put Patrick right to bed, but stayed up getting ready to go back to the hospital if he got sick again. Brian cleaned up the kitchen and worked. I did laundry and packed bags.

The phone rang the next morning at 5:50 a.m.

Patrick’s cultures had turned positive very quickly. And, although they can’t tell the species of the bacteria immediately, they could tell from the shape that the bacteria were gram-negative rods, the shape of some of the most dangerous and drug-resistant bacteria. They told us to come back right away.

So, we packed our bags and less than 12 hours after we left the hospital, we were back.

Still, he wasn’t as sick. His fevers were only low-grade by morning, even as the medicines for them wore off.

Over the next several hours they unclotted a line, drew blood cultures, and gave Patrick three very heavy-duty antibiotics.

And all the time I was just wondering if we’d put Patrick at greater risk by taking him home for the night. We’d certainly rested better, but I was afraid that being 12 hours later in starting the more aggressive treatment might mean that Patrick was really at risk.

Finally, we made it to a room and things began to calm down. We spent actually a very quiet couple of days. Patrick slept well the first night and just continued to gradually get better. It seemed the worst had passed in the first night.

This morning, Patrick’s blood cultures had been negative for 48 hours. They also finally were able to identify the bacteria. It was a strain of Klebseilla, a very dangerous and drug resistent bacteria. It was resistent to all of the antibiotics that are typically used to treat line infections.

However, it was sensitive to the one less typical antibiotic given the very first night in the hospital. That unconventional treatment plan was exactly what Patrick needed.

I’m sharing this story because it illustrates an important truth.

Heavenly Father knows the details – even the most microscopic ones. He is in charge. And He can inspire and guide doctors, nurses, and parents to do what’s right. He certainly was watching out for our little boy this week. The fact is that the ER doctor felt impressed to recommend an unconventional plan. The other doctors on call accepted that plan, even though it was out of the ordinary.  And we were given us peace of mind to trust the doctors and ourselves. That all of that was what was best for Patrick is surely no coincidence.

The result? One of the calmest line infection hospital stays we have ever experienced. Oh – and his transplant listing will be reactivated on Monday once the blood tests have had 3 full days to be finalized.

Our Heavenly Father really does love and watch over every important detail.

“Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.

“But the very hairs of your head are all numbered.

“Fear ye not, therefore, ye are of more value than many sparrows.” Matthew 10:29-31

I’m sorry for those of you who’ve waited so long for an update. Again, I let myself get so wrapped up the demands of mommy and nursing duties that I would pull out my computer in spare moments and just stare at it, too exhausted to type. Things are getting calmer finally so I’m devoting a piece of naptime to a quick blog entry.

When I last posted, Patrick was feeling like this:

We’d just found a way to stop him from itching, but he was still needing pretty high doses of pain medicine and was really out of it. He was, at least, though, trying to sit up and play as often as he could. Attempts at walking hadn’t gone very far.

Well, the next day his pain was a bit better and we decided to try two big things: getting dressed, and going for a walk.

Thankfully, he had a great nurse who listened to how to motivate him. So first, we made him have a bath and then offered to let him wear his Chicago Blackhawks sweater and a pair of “daddy shorts”.

Second, I told her that Patrick was most likely to walk with a wagon. So – she stashed one of the very most comfortable wagons for him. It was took about half an hour and lots of resting for him to walk 3 feet with the wagon. And then, as a reward, we put padded the wagon and let him play in it. (He looked a lot more steady that way, anyway).

He was sold and Patrick from then on tried to spend as much of his awake time as possible in the wagon. This was good as sometimes getting in and out was a bit painful. . . But with it only took one demonstration to convince him just how comfy it could be to lay back in a pile of pillows in the wagon to rest instead of getting in and out.

He made some other big strides, too. For one thing, his intestines finally woke up and he started pooping. Not just a little like he had been doing, but a lot like you’d expect from a kid with Short Gut Syndrome. I almost woke the entire pod when I found his first truly dirty diaper.

Once that happened, his doctor let us switch to g-tube downdrain and remove the tube from his nose. Patrick knew how to make it happen. He took the tape off his nose just as his surgeon came into the room and the doctor gave the ok to just leave it out.

We kept working on walking, too. In the surgical unit at our hospital they have fish on the floor every few feet. A few times a day, we’d leave the room and see how many fish he could walk on before he got tired. First it was to the second nurse’s desk. Then to the doors exiting the unit. And finally, one day he decided he’d like to go see spiderman. It took an hour to make the walk to spiderman and back, but it was well worth the effort.

We alternated walking with wagon rides. Besides spiderman, Patrick’s favorite destination was the patio. On the street below the patio is a trax train stop and several bus stops. So we’d watch and cheer for trains and busses and just enjoy being outside.

Patrick’s a little bit spoiled in the hospital. Not only do the nurses give him his way time and again, but Child Life takes very good care of him. During one visit from Child Life, Patrick sat up suddenly and then collapsed in pain. Seeing that he needed to rest a bit more, Megan from Child Life went and got permission for Patrick to use the Vecta machine for the weekend. This 5 foot tall machine is a combination of colored lights, bubbled, fiber optics, a projector and a button pad that lets you control the machine. Patrick loved this toy and it worked well to let him rest when he needed it.

Slowly, Patrick got feeling better and better. He had more interest in toys. He ate chicken soup and kept it down. He put himself to sleep in bed when he was tired. His fevers finally stopped, his blood cultures stayed negative and they stopped the antibiotics.

Then we started making plans to go home. They tried switching him to an oral pain medicine. However, the first one prescribed was a bit much and he fairly quickly threw it up and got really shaky.

That night, they switched him to lortab and he did much better with that. By the next morning, we weren’t using IV pain medicines anymore.

Too bad he also didn’t sleep hardly at all that night. Every time he fell asleep, he’d wake up gagging. So, naturally, he decided not to sleep. I ended up having to send him out to the nurse’s desk to play so that I could get some sleep.

The next morning, I was devastated. It seemed that the surgery had only made him throw up more easily and I felt like everything was out of control. I wanted to go home, but I didn’t know if I could handle that much need for care at home.

Patrick’s surgeon came by and told me that on paper Patrick met all the criteria for discharge and could go home whenever I thought he was ready. But he also told me that between the difficulty of pain control and the frequent nausea and vomiting and difficulty sleeping that he also met enough criteria to stay. I could stay as long as I felt I needed help.

Thank goodness for a good husband who pointed out that we’d all do better at home. And thank goodness for a good friend and mom of another short gut child who helped me muster up the courage to try it at home.

After lunch, I asked for him to be discharged. They worked quick and by 6, we were on our way home.

Patrick was happy to be home but very tired and very sore. He tried playing with his toybox, but ended up putting his toys on the floor and laying down to play. Daddy held him and tried letting him have a drink of water. Patrick immediately threw up all over him. I wondered what I’d gotten us into.

But, that night we gave him his pain meds and put him in bed and he slept through the night. I snuck in for his 2 a.m. dose and otherwise got a much better night’s rest.

The next day, my two goals were to get his pain and his nausea under control. I left his belly to downdrain all day, except when it needed to be closed so he could absorb his pain meds. I also was vigilant in giving the anti-nausea medicine they’d prescribed and I started him on one of his antibiotics for bacterial overgrowth.

Patrick spent most of his day in his own wagon reading books and watching Bob the Builder. But slowly, slowly he got better. He didn’t throw up once.

And that night, again, he slept all night again.

We’ve been home now for 5 days. It’s been an intense week to be Patrick’s mom. He has wanted to be with me every minute, even for naptimes. Trying to keep the right balance with every aspect of his care has my poor little brain constantly working.

But he’s getting better. His belly is still needing to be drained, but only a few times a day. He isn’t nauseous anymore. He’s doing ok with just ibuprofen for pain control during the day, using Lortab just to sleep at night. He’s even asking to eat again. And more than just water and soup.

It’s still a bit too early to say if the surgery was a success. I can say that his outputs have been lower. He’s stooling better.  And, though he threatens, it’s been a while since he threw up.

I’m hoping that as he gets away from the pain medicine and his body heals that we’ll see much more improvement.

Only time will tell.

Patrick is in the hospital trying to recover from surgery. This has been a very hard recovery so far… Patrick has gone through painful things before. But always he was so small that I could just hold him and comfort him all day. Or, he was sedated much longer.Or he was just younger and doing less and thus being kept down was easier.

This stay has been hard. The first day, Patrick was in constant pain. If the nurses didn’t press his pain button every 12 minutes, he couldn’t rest. And then on top of that his mouth was dry and he was queasy. To keep him from pulling the tube out of his nose, they put arm restraints or “no no’s” on him and these are the ultimate in misery for a two-year old. Especially as the crib they have him in isn’t quite wide enough to lay in with arms spread out.

Worst of all, he was scared and for the first 24 hours at least, either Brian or I pretty much just sat next to his bed and held his hand so he’d know he wasn’t alone.

By the end of the second day, his pain was better under control. We had finally convinced the nurses to use the pain button all that they were allowed. Child life brought a tall chair I could sit in next to Patrick’s bed and that afternoon he woke up enough to ask to hold my glasses. I took off his no-no’s and got him a bottle he could play with the lid on. Daddy got him to smile for the first time and he started to talk a little more.

Yesterday, he was supposed to get out of bed and start trying to walk. We decided to start slower than that and started with him laying in my lap and watching movies. That actually went pretty well until he was ready to sleep.

Then, after his nap, he woke and I sat up his bed so he could play. This actually was great for him! He was in much better spirits. However, one major side effect of the pain medicine he’s on is itchiness and it was so bad that he could barely stand it. If his hands were free, he’d sneak in scratching his nose until he made it bleed… even though it was only seconds that he’d have his hands free. His chest and eyes and hair were all just as itchy.

So, in addition to hand holding, my job came to also include rubbing his nose to help the itch.

We tried backing off the pain medication some to reduce the itching, but the result was just that he couldn’t fall asleep because of the pain.

Friends and family came to visit and that helped more than anything else in the day. It was good for him to have other people to talk to and new toys to play with.

But, by bedtime, all of the extra work of the day and the reduced pain medication and the itchiness had him completely worn out. We added one more anti-itch medicine and he finally seemed to settle down – until he started to try to fall asleep and kept being woken. Then he became hysterical and putting on the no nos only made it worse.

In the midst of this, the amazing nurse who had gotten us through two excrutiating nights came back for a third shift. He took a quick look at the situation and decided to help. He told me he thought I needed a good night’s sleep and so did Patrick. And so he made arrangements to be in the room for one-on-one nursing for the night. And finally convinced us that it was ok to leave.

Brian and the nurse gave Patrick a blessing of comfort as he slept, and then we left him and went home. I was asleep as soon as my head hit the pillow.

While we went home to rest, Nurse Dan stayed in the room to make sure that pain medications, anti-itch medicines, antibiotics and the rest were all given as often as possible so that he’d have a good night’s sleep.

Not only that, but he decorated the crib to make it more interesting and sat up and played with Patrick when he was awake.

It was amazing and by morning, Patrick was no longer having fevers and seemed well rested.

This morning, we told the doctors on the pain management service about the itching and they prescribed a drug called Narcan that takes away the itching from narcotic pain meds. It runs all day long along with the pain medicines.

But it took some time to get the orders through the pharmacy.

While we waited, the nursing assistant helped me to give Patrick a sponge bath and get him out of bed onto my lap. He was still really uncomfortable and didn’t move much. But I was determined to get him upright and kept sitting him up a little more and a little more as he watched Disney channel. I finally got brave enough to sit him all the way up for a second, and it was too hard and made him cry, so I told the team when they rounded that he wasn’t ready yet today.

Then the narcan came and right away he seemed to relax. And then, out of the blue, he started saying “up, up” and trying to sit up. So I helped him up to see what he wanted… he wanted me to show him how to raise and lower the crib rail next to us. And he was willing to sit up to do it.

He was really wobbly and kind of stiff needed a lot of support from me to do it, but he spent the next half hour sitting up playing on my lap. It was amazing!

He spotted my cell phone so we called daddy to tell him he was sitting. But, in playing with the phone, Patrick dropped it… and decided to go get it. He started trying to inch off my lap.

So, very slowly I set him down on the floor. He couldn’t quite find his feet. It was like standing on ice. But he stood for nearly a minute with a lot of support.

Then I picked him up and he played another 15 minutes on my lap before his nurse came in and I had her help me get him back into bed.

He was pretty tired by then and started trying to get to sleep. Of course, being in the hospital means that a pump alarmed and other things happened and it wasn’t quite happen. Patrick started to seem to resign himself to staying awake.. So I proposed something kind of big to Patrick.

I asked him if he wanted mommy to rub his hair or he wanted mommy to go bye-bye.

He chose bye-bye. And I went to lunch while he put himself to sleep for a nap.

And that’s where we are right now. It’s been one of the most difficult weeks we’ve experienced with Patrick. I can’t even figure out how it came to be Thursday already.

We’ll see how the weekend goes. Patrick’s got a long way to go before he’s ready to come home and I don’t know if he’ll make it home on Monday. But today he took some huge strides. With blood cultures negative and fevers gone they should be able to stop the antibiotics soon. And if he gets up and moving his bowels should start to do better, too.

Already, though, we are draining 1/4 of the volume from his gut. And that should only get better as he recovers. The color is already improving, a sign of improved health. So it appears that the surgery may have made a difference for him.

Keep those prayers coming! We feel their influence every day.

When we scheduled surgery for Patrick a month before the end of summer, we decided to try to make that remaining summer month as fun as possible. So, sure, we had to do responsible things like starting school and going to therapy and getting work done on the house and cleaning and shopping and that darn line infection that wasted a whole week for us… but whenever possible, we’ve been playing.

Here are a few of the highlights:

We took Papa to the zoo. I’m not sure which was more exciting, the animals or the company.

We went swimming at the area water park. We were the first ones through the doors on a Monday morning.

Patrick wasn’t really a fan of it, until I found a corner where the water was warm and we could sit on the stairs. I taught him to blow bubbles in the water and then it was ok.

We went to a baseball game. Patrick wasn’t so very interested in the baseball, but he liked being outside and he liked watching the other people and he liked the cup of ice water. Most impressively, he wasn’t scared by the crowd cheering.

We tried to have a day at the lake with my family. However, when the rules for our lake of choice prohibited canoing or wading, we went back to grandma and grandpa’s house instead. Grandpa filled his canoes with water and let the cousins play in them until they were all quite blue and exhausted from the effort. Then, Patrick got to eat some zucchini marinated in teriyaki sauce, his new favorite flavor.

We went to the aviary. Patrick was tired and not very impressed by this.

We spent a significant amount of time fighting over him wanting to push the stroller all by himself off of the sidewalks. When we didn’t let him, he threw a major fit, so we put him in his stroller and in retaliation, he took off his brand new shoes and tried to throw them in the pond.

But, we saw a cuckoo bird and he’s learned a cuckoo song in music group. And he recognized the flamingoes from one of his picture books. And there were a couple of places where you could go inside and he tried to pet the birds. So, yeah, he enjoyed the birds some, too.

We had family portraits taken. We bought Patrick his very first suit and we drove an hour and a half up to a ski resort and had some amazing pictures taken. I don’t have them to post here yet, but you can view them here. http://rltphotography.smugmug.com/Family-Sittings/Hoopes-Family-Snowbasin-2011/18948043_f8vx4k#1470664088_ftcqnVz

We went to the State Fair. Patrick was especially excited to see pigs this year, which is funny. And sad, of course, that I didn’t get a picture of him with the pigs. But here’s a cute picture with a goat.

They had a giant slide at the fair, too. And brave daddy took Patrick on it. Perhaps when I’m somewhere with a better internet connection I’ll share the video of it. Patrick was so excited going up the stairs to the slide that he about crawled out of Brian’s arms. He was laughing hysterically at the bottom.

I let him try frozen strawberry lemonade. (Do not try this at home. It is NOT recommended for kids with Short Gut AT ALL.) He liked the experience of something so cold and so sour. He’d make a horrible face, and then come right back for more. Then his face broke out in hives. Won’t do that again.

We went to Brian’s company party at the park. We played a bit on the playground and had some dinner and Brian won a camelbak backpack in a trivia contest that Patrick proudly wore the rest of the evening.

We went with HopeKids to Hollywood Connection for a private party – a rare opportunity to have the place open just for kids like Patrick who might need some extra accomodations. We golfed.

We rode the carousel over and over again.

We roller skated. (But the pictures of that didn’t turn out and it wasn’t all that exciting.)

But Patrick’s favorite ride was their “Crazy Bus” ride. This is a pink bus that goes around in a circle kind of like a fast ferris wheel that seats 30. This was his face the first time it moved.

And this is waiting in line to go again right away.

We took him out for dinner at his favorite japanese steakhouse. Patrick LOVES their onion soup. He ate an entire bowl, and we let him because things weren’t going to get much worse from doing it and we didn’t know how soon he’d feel like eating again.

We visited family. We got him to his preschool classes as often as we could. His speech therapist was so thrilled with his progress that she gave him the rest of the year off to work at home. We went to church and let him play in nursery. We played in the yard. We went for long walks. We went for bike rides. We read extra books. We watched the sun set.

We lived it up!

And then this morning, we kissed him goodbye and sent him away into the hands of a surgeon and GI who we know love him almost as much as we do.

After 3 and a half hours in surgery, his surgeon just came to talk to us and tell us that things went well – just as expected. His intestine was definitely too stretched before and was already squeezing as they finished the procedure.

Hopefully this will mean many more fun days to come.