Transplant Day 77 and Thursday

Tomorrow, we’ll have been outpatient again for a week. This time the transition has been a bit easier, though there is still PLENTY to adjust to. Especially since I’m still “packing” the wound from Patrick’s ostomy takedown. (It’s almost healed. Just not quite. And the job takes 15 minutes twice a day.)

We actually have some things on our calendar these days. Christmas break if over, so Patrick has school 3 times a week. His teacher comes Monday, Wednesday and Friday for an hour in the afternoon and they work on reading and writing and math. I am required to be there, but sometimes wish I wasn’t so I don’t slip and get in the way. However, it does give me some direction for the mommy school we do on any day without morning appointments.

Tuesdays and Thursdays will be feeding therapy days. We had our first session today and I found it was more productive than I expected. We blew fluff balls through straws to help build oral motor muscle strength. Then, I pulled out my assortment of foods and we had snack time together. Patrick was a bit shy at first, but guacamole won out. And before I knew it, he’d also experimented with soynut butter and crackers and even, at the end, took a lick of hummus. He didn’t think he’d like it, but then he ended up dipping his finger in for more and pouting when I didn’t let him.

I was actually quite relieved that Patrick ate well today. I was really quite afraid that he was getting sick or something was going wrong because I was changing diapers every 2 hour yesterday from afternoon till the middle of the night. It appears, however, that it maybe was just something he ate. Specifically, I tried some Avocado Ranch guacamole with him, which claimed to be non-dairy and vegan. But something in it didn’t sit quite right, I think.

In the end, though, no serious harm done. His labs looked ok today and his appetite was back and he essentially ate from 10 a.m. till almost 2 p.m., then also had a great dinner.

Monday and Thursday are lab draw days. This is the only day we have to get up on time. I kind of hate knowing that I let us sleep till 8 or later most days. However, Patrick’s evening care schedule keeps him up till about 9:30 most nights and since we decided that he doesn’t nap most days so he can sleep, he needs to sleep in the morning as long as he can stand.

This morning, the nurse was running late. That threw me a bit. Meds are due immediately after she leaves so that meant that I was late giving meds. It did give me a chance to get Patrick’s bed stripped down and laundry started. (I thought we’d be past that post-transplant, but he gets so much fluid at night that even 3 diapers isn’t enough to keep the bed dry. If he were potty trained, he’d never sleep.)

But I think that even with the shift in routine today, I got everything done that needed doing.

Thursdays are clinic days. The doctors on call rotate through clinic and so how clinic goes kind of varies by doctor. Today’s doctor was Dr. Vargas. He tends to be the conservative one on the team. So the plan this week is to stay the course. Increase Patrick’s feeds slightly so that he can have 2 more hours off of feeds each day and then increase them again in a few more days and he’ll be down to just 18 hours a day of tube feeding.

If Patrick hadn’t had a crazy upset belly scare last night, I might have been frustrated by a slow and steady approach, but right now with him simultaneously trying to learn to eat, this really does seem like the right plan. The good news is that everything, and I mean absolutely everything, else has stayed stable. That puts us closer to the criteria that will get us home. He needs to not need constant monitoring to keep his medication and diet steady and it’s really good news to prove that he could have an upset belly and not need to make big adjustments.

It was a beautiful day today. Well above freezing during the day. We barely even needed our coats. So after clinic, we went to the park to let Patrick play on the playground for a bit. There was still snow on the ground, though, and Patrick’s wet feet were slippery. He slipped and skinned his knee and needed a bandaid. And honestly, that made me happy. A normal childhood injury from doing a normal childhood thing.

It did, however, cut short Patrick’s play time. After that, he was done today. So, we ran to the store to pick up some things to take to dinner. (We were invited to eat with a friend from church).

I meant to let Patrick come back and take a short rest, but a 5 year old girl moved into the house this week and she and Patrick have become fast friends. She was in the kitchen, so they needed to play together. And that was fine. We were a little hurried getting set up for bedtime.. but nothing to really make us late.

Dinner was fun. They have 2 little kids just under Patrick’s age and they enjoy playing together. Even if Patrick was a bit loopy from being tired. (He has asked for naps 3 days in a row now that I didn’t have time for.) They missionaries were also there, which was an especial treat. Patrick loves the missionaries. I do, too. The spirit that is there when they teach, and they always bring a spiritual message when they come for dinner.

Amazingly, Patrick went to sleep fairly quickly. And I’ll be honest, I’m fighting to keep my eyes open. But I also think that Thursdays probably need to come with blog entries because those are the days we hear one more week of care plans from the clinic.

I’m looking forward to a Friday, though. We only have school tomorrow. And cleaning up the house so daddy can come back again. (And then we’ll see how the routine holds up.)

Transplant Day 75 and eating

If I had to pick a word to describe the current focus of our days it would be: food. Patrick has always enjoyed food, but also seemed to know that it didn’t sit right with him to eat much, and so he always reigned himself in pretty well. But now that he has his “new belly,” Patrick has a renewed and kind of voracious interest in food.

Yesterday, we started our outpatient time with morning appointments. We got up early to be ready for Patrick’s morning nurse visit and blood draw. (We do this twice a week to check his nutrition and medication levels.) This is a pretty big feat right now. Instead of being able to put Patrick in a tub while I get things ready, right now he needs a sponge bath and the dressing on his ostomy incision changed.

We had an 11 a.m. appointment with an occupational therapist who also does feeding therapy. I needed to call to confirm that the plan really was to see her, because of some confusion as we went out the door on Friday.. and when that call was done, our time was pretty short. Patrick likes to start his day by sitting down and chewing up a couple of slices of ham. He eats for about an hour. And we didn’t have an hour.

So I tried to sweeten the deal. I promised him we could eat out. I’d take him to McDonalds for pancakes. (Note: this was previously one of our favorite mommy/son dates.) Nope. Patrick threw what I think was the first all-out tantrum I’ve ever seen from him. He wanted his ham.

Once he calmed down, we went to McDonald’s anyway. I talked them into giving me some of the ham from the McMuffin sandwich in place of the sausage in the Big Breakfast. He had both ham and pancakes, plus some powerade (which was a splurge).. and he forgave me.

The appointment was interesting. He was all over the place which made it kind of hard to work with him. She did some testing of his fine motor and attention skills, then we talked about food. She explained that she uses a sensory program designed to help kids become brave enough to touch, taste, smell and otherwise explore food. I told her we might already be past that. But we decided to give it a try to see if it would help. And we set up bi-weekly appointments for the next month. (This is terrifying to me. It will burn through Patrick’s therapy visits in no time at all.)

Anyway – once the appoint was done, we came back to the Ronald McDonald House for lunch. This time, soup. Chicken broth is one of Patrick’s biggest go-to foods. He eats at least a cup a day. And he dips at least 4 rolls of slices of bread in it while he eats it. This also can take up to an hour.

Patrick happily came back to the room to play for a little bit in the afternoon, giving me time to get a few phone calls made. (Working on setting up some respite care that we have qualified for once we get home… I’m going to need to hire someone to do this and finding the right person seems like a very intimidating idea. But we’ll get there.)

Then, it was time for school. Patrick did great this time! Would you believe that his teacher can tell him specific letters to write and, although sloppy, Patrick is making the right shapes for them? They also worked on reading a book and some counting and sorting activities. I think it was our best school day here yet.

After school, we had snack time. Thinking that Patrick needs to go back a little bit in food demands and start where babies start learning to eat, I’ve been trying out different big-kid flavored purees. I introduced him to guacamole and he actually really loved it, so we have some for snack every day. And when we ran out and he still wanted to eat, I grabbed the next in the “new foods” category and pulled out a jar of SoyNut butter.

Patrick’s allergic to peanuts and therefore peanut butter, but insisted this week that all kids need peanut butter. So when we found a good allergy-safe department at a grocery store this week I picked up a jar of low-sugar soynut butter. That sounds pretty unappetizing, but I actually liked it better than the Sunbutter (sunflower seed butter) that we tried last week. The taste is pretty similar. And he really liked it.

In fact, after exploring dipping teddy grahams in it for a while, I mentioned that my family has always liked peanut butter filled celery. Well, Patrick wanted to try and I happened to have some celery. Not only did he enjoy licking the soynut butter out of the celery, but then decided to try out taking bites of the celery and chewing it up, too. This is kind of huge from an oral motor skills standpoint.

We ended snack as the dinner group started to arrive to cook dinner. Patrick loves being the welcoming committee for the house and made friends quickly. But we didn’t stay in their way too long. One of the women from church who came and sat with Patrick last week came again last night to play with him. I was feeling caught up enough to stay and get to know her a bit while we played. She brought walkie talkies, which Patrick loved. (And it kind of helped because when he’d sneak away, I could ask him where he was or call him back. I kind of found myself wishing I still had them again today.) Patrick laughed for the whole hour she was here. He really needed that. So did I. And we were excited to find we share a love of hockey. And then she left and we went to dinner.

For dinner, we are a bit at the mercy of what the dinner groups choose to make for us. I’ll make Patrick alternatives but am trying to teach him to try different things that are served to him. Well, last night he just wanted the ham that I’d shorted him for breakfast. After much negotiation, we agreed that if he’d try the spaghetti they’d made, I’d let him have ham. He took two bites and then settled in with his ham.

But of course, just as we started clearing up plates, he asked for spaghetti again and sat down and licked the sauce off of a whole bowl.

We stayed up a little late last night talking to Daddy because it had been too many days and we really missed talking. We didn’t have committments this morning so I figured we could afford to sleep in.

I accidentally woke Patrick sneaking away to go to the potty this morning instead of snuggling with him. So we got up anyway. He really kind of needed a bath anyway, so I went and set up his sponge bath.

But, just as I got him naked, even taking the dressing off of his incision, the fire alarm rang. Talk about bad timing. There we were trying to get a dressing and diaper and clothes while they were banging doors telling everyone they really did need to get out.

By the time we got downstairs, I could see a group that was maybe from the house being led away somewhere far across the parking lot. But I was in PJ’s and Patrick was in an assortment of fleece I’d thrown on him and we were wrapped in blankets and if I was wrong about them, then I’d be crossing the parking lot carrying him (it was so loud he couldn’t settle down to walk) in the cold for nothing. I had grabbed my cell phone, but not my keys so we couldn’t get in the car. I looked up and saw a fire truck approaching and decided that was the better place to go wait.

We walked around front and the firemen came over and brought Patrick stickers and offered him the chance to look in their fire trucks. (He said thanks, but no thanks.) And then, once they had cleared the building, they let us go wait inside. It turned out that some water had leaked and set off the alarm somehow. I really hope they found and fixed it so we don’t have to evacuate every time that room showers. But if we do, I learned a little more about what to bring along and where to go.

The morning schedule was all thrown off. I gave the really time-sensitive medicines, but left some of the others for later. I properly changed Patrick’s surgical dressing and his central line dressing, too. I showered and we got dressed. And then today, because right now 80% of the families staying here have someone staying at the hospital and the house was quieter than usual, we did a laundry morning. We washed the dirty clothes plus most of the linens.

We came back to the room and used some index cards to make a letter and word wall. As Patrick is introduced to new sight words, we’ll add them to the wall under the corresponding first letter. He loves going over and reading me his wall.

Then, Patrick needed out of the house, so I decided we’d take an outing to the dollar store. He carefully considered all the things he could buy and chose a jumbo calculator. I picked up some new scissors for him and some bingo daubers to use in place of do-a-dot markers in some mommy school work.

Then, we decided to go check out the grocery store in the same parking lot. (We actually drove a ways to go to the dollar store.) The store was a big win. They had kid-sized shopping carts which is one of Patrick’s favorite activities. They also had all of his biggest needs.. ham and chicken broth and single serve guacamole and rolls.

The late night and early morning left Patrick in need of a nap. (Because otherwise, he was just being naughty… especially in that he kept sneaking away from me and going to visit people on other floors of the house.) He slept till 6, when I woke up for dinner where he ate his first choice, chicken broth, and then some guacamole (also known as mokily-mokily) because he “loves it so much”. And now we are staying up late watching Blues Clues because going to bed on time is pointless when he naps late.

Tomorrow, I hope that we will actually succeed in sleeping in. And then we’ll eat some more old favorites and new foods and have a little bit of school, too.

Transplant Day 72 and Discharge Again

I just tucked Patrick into his bed at the Ronald McDonald House. Tonight, at least for part of the night, I will sleep in a bed by myself. The spot on my arm where Patrick likes to snuggle all night that is beginning to be deeply bruised is very grateful for this development.

It’s been a busy couple of days. Yesterday, I got up early and started begging often for them to find a volunteer to come sit with Patrick so I could fix the battery problem with my car. It took till afternoon, though, to find someone. So I was a nervous wreck all morning.

Finally, I explained to Patrick why I was acting frustrated and suggested maybe I should pray to calm down. Well, the next thing I knew, Patrick folded his arms, bowed his head, and said a little prayer that a “vodateer” (volunteer) would come so I could fix my battery. Not 10 minutes later, one walked in.

So then I made a mad rush to get it done. I called my insurance policy’s roadside assistance. (Thanks to my mom for pointing out that I might have that service on my policy.) They sent “Rescue Rangers” to come give me a jump start. Because I was in a parking garage, the guy showed up in just a regular sedan. (Tow trucks don’t fit in this garage.) And when he hopped out with a jump starter, I was pretty doubtful. But his was better than mine and the car started right away.

I drove to AutoZone and told them I thought my battery needed replacing. He grabbed his tester, but one look at the battery told him that it was gone. (I kind of knew that.) So he sold me a new one, then installed it, cleaned up all the corrosion, oiled my screws, and checked my other fluids. I expected the help putting in the battery, but not to that level.

With the car now happily starting despite frigid temperatures, I drove back to the Ronald McDonald House to get Patrick’s feeding pump so he’d be ready for discharge.

He had a pretty good night, as far as hospital nights go. And this morning, we slept in and laid around in bed being lazy. But eventually they came to clean his room and check his vitals and look him over.

Rounds were a little bit late. That actually helped a bit because it made the rest of the day seem to go faster. They confirmed our plan from yesterday that he could leave the hospital today.

A couple of hours later, they had a problem with Patrick’s feeding bag and I suggested that we just switch to his home pump. From that point forward, I couldn’t get him to stop running and running away. He was so happy to be free. (And feeling so much better.)

While they worked on getting orders, Patrick and I went for walks, ate soup, played in the playroom. It got late enough in the day that I called Patrick’s school teacher to tell him we wouldn’t make it back to the Ronald McDonald House and ask him to come to the hospital instead. And just as we were wrapping up with school, they came to say they were ready for discharge.

We left the hospital about 3:30 and stopped at Jimmy John’s so we’d have some food for dinner. (Patrick loves Jimmy John’s bread and with his new appetite, happily dipped and entire 2 foot long day old loaf in bread and sucked the broth out of it.)

Getting settled here again was more work than I wanted. It takes time to unpack, do laundry, put away a month of medical supplies, etc. But eventually, I got it all done and we wandered downstairs for a late dinner. Patrick is so happy to get to walk away from me a bit and to visit with his friends here. That felt really REALLY nice.

The new formula is easier to make, which I’m especially happy about. Doing meds again was much more second nature. And we even managed to change the dressing on Patrick’s incision with minimal fuss. I got him into bed by 10 and asleep before 10:30.

I’ll admit, it was kind of sad to come back here. When we were here last, we were still in that post-Christmas happy state. Brian was here. It was lonely coming back and knowing we need to put away Christmas is kind of hard. I’d leave it up, but really this room is tiny and with all the new toys, I need to get the Christmas decorations out of here.

Here are some pictures from this hospital stay. I wasn’t really great about uploading them so they cover a few days.

Transplant Day 70 and real-life angels

God does notice us, and he watches over us. But it is usually through another person that he meets our needs. – Spencer W. Kimball

Brian flew home Monday. I was kind of worried how this would play out as the last time he left while Patrick was still inpatient, I found myself feeling in well over my head trying to juggle caring for Patrick and trying to piece together little things for myself like food and clothing and bathing.

However, instead, I’ve found the last couple of days almost relaxing. An important lesson I’m learning here is to let people help me with little things so I can be free for the bigger things. For example, Monday morning a hospital volunteer knocked on the door just as I finished dressing Patrick to ask if I needed a break.  So, she came in and played with Patrick while I took a shower, did my makeup (a rare luxury), made the bed, and cleaned up the room.

This week has been full of volunteer angels. From church, I find women I barely know (have met a few times or not at all) providing meals or coming and sitting with Patrick so that I can go back to the Ronald McDonald House to eat or shower or do other things. There is an after-holiday lull in charitable donations and so fewer meals are offered at the beginning of January than throughout the rest of the year. So, one evening while a lady from the Relief Society (church women’s organization) was introducing Patrick to the joys of a fart machine, I hurried back and made up a week’s worth of taco meat so I’d be ready for days I either couldn’t get away or nights where dinner wouldn’t be waiting.

This has been a blessing I can’t put into words. I am not unhappy that in our first month here, we ate such carefully portioned meals, a-la Hormel no refrigeration required microwave dinners, that I lost several pounds. But sometimes it was hard to be patient with Patrick and happy with this 24/7 mom/caregiver role I’m living because I was hungry. But right now, I am anything but hungry. I have to think to not end up being fed dinner twice. I haven’t even touched the supply of meals I bought right before Brian left because there has always been another one there someone has made for me.

But beyond food, this has given me the chance to keep up on laundry (with a little bit of help from a friend willing to fold and slip into my room my clothes if I can just get them to the dryer) and to stay showered and in fresh clothes (which I find goes a VERY long way to my general sense of well-being), and sane. I get an hour or two here and there and in it I try to be as productive as possible. I probably look like a mad-woman flying through the Ronald McDonald House when I go there.

Patrick is happier with this help, too. Someone appears offering help and he shoos me away to “the House’ so he can play. Patrick needs people. He loves when someone comes and he has someone new to play with.  He really loves the volunteers who come help Child Life with activities. We had an awesome time the other day flying airplanes with the ROTC. Right now, Patrick is one of just a handful of kids old enough to play with, so they are especially excited to see him, too.

It helps so much to have people. Tonight, I got a call from a woman from church who is quickly growing on me, saying that she had some time and could she come play with Patrick so I can get out. I almost felt like I was taking advantage because I’ve been so well taken care of, but I’ve sworn to myself to accept help when offered. So she came and I almost didn’t even leave because it’s -3 with a wind chill of some other horrid number and everything is closed here as a result. But I remembered that Patrick’s been running a touch low on diaper cream and I had one more jar of his preferred kind at the house, so I went to go.

But, when I got to my car, it just wouldn’t start. I’d turn the key and it sounded almost like it was sighing. I had a jump starter in the trunk, but even that didn’t help. It just showed me my battery’s power dropping from 60% to 40% to unreadable.

So I came back in and I bought diaper cream at the outpatient pharmacy instead. Then I called Brian and I called my dad to assess the symptoms. And then i came back to the room feeling a bit beyond alone and helpless. Only I wasn’t alone. There was this sweet angel from the ward making playdough P’s with Patrick on the floor. And she listened to me talk through my problem and she offered all the help she could think of. And then she just talked for a while which is something I am REALLY missing here… talking to grownups and especially friends of my own faith.

And things felt lighter going to bed. In fact, Patrick and I stayed awake and giggled and talked for a while. Sometimes, he and I get playing a little more like it’s a sleepover. And last night he told me that when he grows up he wants to be a firefighter and put water on things. And that when I grow up I want to be a doctor… not like the ones in the hospital, but like the toy one in his Duplo block set that he got yesterday.

Which reminds me of another super nice thing that strangers did for us. Right before Brian left town, he discovered a couple of Christmas presents hidden under the bed that we’d overlooked on Christmas morning. Well, they couldn’t have been more perfectly planned if we’d done it on purpose.

When we got married in December, I was really sad that the wedding and honeymoon took up most of the Christmas season for us. So we decided to extend our family’s Christmas holiday like they do in Europe. There, the 12 days of Christmas actually start on Christmas day and are counted forward until January 6th, also known as Epiphany. Or, in Italy where Brian was a missionary, it’s called Befana.

So, we have celebrated Befana. We leave out our shoes and a good witch fills them with little gifts. After Patrick went to sleep Monday night, I snuck down to the C store and picked up some treats for my shoes, then I put the newly found presents and some chips and a book into Patrick’s. And when he woke in the morning, we had our own little holiday. And he got a couple of fleece sweaters that have been perfect for these bitter cold days. And he got some duplo blocks that have proven to be great entertainment, too.

General Patrick update.. Tonight, they turned off his TPN again, hanging some IV fluids to keep him hydrated. He will reach full enteral (through the belly) feeds on Elecare Jr. tomorrow late afternoon. They will check some labwork in the morning and we’ll start talking about discharge again. (Which means that I will also be making some phone calls in the morning to see if my insurance’s emergency roadside service can help me fix the battery issue so we have a way to leave here.)

Patrick feels great. I’ve learned to change the dressing on his surgical incision and will need to still do that for a few weeks. He is not a big fan of the job, but has gotten so he doesn’t cry the whole time.

We spend our days mostly playing. Today, they got the playroom ready for patients to play in. It is still missing locks on the toy cabinets, so you have to have help and permission to play there and have to keep the door closed while there. But that just meant that Patrick had to have 3 hours straight playing there instead today. And the room all to himself.

While he played, I downloaded more of his homeschool materials and the hospital teacher helped me print some readers. A “cold day” made it so Patrick missed his post-holiday return to school this week.. again. He’s only had 4 actual “school days” since we got here. I just learned a couple of the ladies from church homeschool and I am getting ready to pounce and pick their brains to figure out how to make my mommy school efforts even better.

We’ve been working on just one more goal here. A few days ago, Patrick was complaining that his left leg and ankle hurt. This isn’t the first he’s complained of it, so I asked for a physical therapy consult. She came seeming ready to assure me my concerns were over something normal that would pass. She watched him walk and stand on tiptoes and squat. And as we worked, she shifted from telling me that his hip looked weak but would get better to a genuine concern about what she was seeing. This is somehow maybe related to his cerebral palsy and we don’t know if it’s really a new problem or just one made worse by recovery.

She gave me some exercises to try to get Patrick to do.. lifting his legs to the side and walking on his heels. Because of his dyspraxia (motor planning troubles), this seems really, really hard for him as he’s never tried to move that way before. At first, he just wouldn’t. But I’ve figured out that I can turn it into a game of silly walking mother-may-I or a “can you do this?” challenge and he’ll play along.

Nevertheless, my plan of doing occupational and feeding therapy only with my limited visits while he’s outpatient is kind of disintegrating. If this problem doesn’t go away before we leave here, we’ll need to do some follow-up therapy. And I really need to find the number and call and get that scheduled.

I think Patrick feels more in control of himself here at the hospital. Maybe because the rules and routine are more predictable. Maybe because he’s spent more time here. Maybe just because his medication levels have been steady while he is here. Maybe because it’s not Christmas anymore. Maybe it’s because he can order ham and chicken broth for every meal. Or because my attention is less divided and all of the ways he acts out are him trying to have my undivided attention. I don’t know for sure, but I’ve also been using the extra time I have with helpers here trying to pull together some picture schedule and behavior reminder resources so going back to the Ronald McDonald House can maybe feel less chaotic.

Regardless, I can see that our time here is special and important. And I am beyond grateful for the helpers who have let me use this time well instead of just trying to survive each day.

 

Transplant Day 65 and things are moving

IMG_20150102_092113

It is amazing, when dealing with problems of the intestine, how often we have prayed for bowel movements. We are ecstatic to announce that Patrick’s gut woke up yesterday afternoon. It seems that things are working very well so far. Patrick’s immediate reaction was to ask me if it meant he could have a bowl of soup. After a nap (giving us time to call the nurse practitioner for approval) we consented.

Life is easier with Patrick able to eat. He was really heartbroken without food so we were eating out in the hall. Now, as long as he has his bowl of soup first so his belly isn’t empty, Patrick is content letting us eat in front of him.

The plan moving forward is this. Today, they took the drain tube off of his g-tube (stomach) to see if he could make it the day without feeling sick. They also allowed him clear liquids all day. We are lucky Patrick is loving chicken broth. Tomorrow, they’ll restart his tube feeds and start weaning him back off of TPN.

It’s been a month since his lungs needed drained because of his formula, so it’s time to try the other formula, elecare, again. He needs more balanced nutrition. This could mean he needs to go slower starting feeds so that we are being really careful about not repeating that performance again. I’d guess we still have a few days here.

Sadly, though, that means that Brian will be leaving us in the hospital again. He flies home on Monday morning. I can’t believe that much time has passed. But at least he’s leaving us with things moving forward.

Today’s been a quiet day. Patrick has been kind of grumpy and contrary feeling all day. I’m not sure exactly why. I suspect it is that we have tried to go light on his pain medicine. He’s only getting tylenol right now. The other medicine controls pain well, but also slows down the gut. Patrick’s also been quite tired. Hopefully we can succeed in getting him a good night’s sleep tonight. He’s been kind of restless and jumpy and sleeps so glued to me that I can’t move all night.

2014 Year in Review

Sometimes I’m a resilient, flexible hospital mom who is great at making hospital stays homey and fun. Other times, I struggle more, thinking of what we’re missing and feeling stretched beyond my limits making up the difference. Unfortunately, I’ve let myself fall into that the past couple of days. When Patrick didn’t nap on New Years’ Eve and I knew there was no way any of us was making it till midnight, I let it get to me. The limited staff, limited entertainment, limited food choices hospital environment just fed that feeling. And so sorry, I didn’t blog.

But today, I’m resolving to do better. And so I thought I’d pick up a previous New Year’s tradition. The 2014 year in review. (Counting blessings is a good way to fend off bad feelings.) So let’s look back at what 2014 meant for our family.

January – Patrick was in preschool. We were diving in trying to make a plan to solve the struggles he was having there. We started seeing a psychologist and had a meeting with the school staff to come up with a behavior plan.  I started to volunteer almost weekly in the classroom, which I really enjoyed as it was a chance for me to use all of my talents and training in the same place and get to share in and understand Patrick’s days. I also made some very good friends with the school staff that year.

February – Patrick caught a cold and ran a high fever that landed him in the hospital for several days. But after that he managed to stay healthy. Sometime between January and February one side of Patrick’s central line clotted and the transplant team opted not to replace it. We celebrated the 5th anniversary of day we were sealed as a forever family in the temple by going out to dinner at Brick Oven Pizza buffet, an odd choice for a kid who can’t eat cheese on his pizza, but Patrick was going through a breadstick phase and so we all enjoyed the meal. The we snuck over to walk the Jordan River temple grounds, the first time health and schedules allowed us to do so on our family forever day.

March – We started working with Palliative Care at Primary Children’s somewhere early in this year. It’s a team that specialized in keeping patients with chronic or terminal conditions comfortable and helping caregivers to plan ahead and then be able to make difficult choices as medical care gets more complex. One of their top priorities: get Patrick a wish. So, in March we started working with Make-a-Wish. We visited the Utah Headquarters and Patrick got to use his special key to enter the wishing room and send his key to the wishing wizard. Patrick wished to go to DisneyWorld. We made wishes, too. Several grandparents wished he’d receive his transplant. In the back of my mind I thought, “Yeah, but that may not happen in time.” My wish was that he get all he hoped out of life.

April – This spring, my baby sister decided to get married. And she asked if she could hold the wedding in our back yard. So most of April was spent whipping the yard into shape. We have never planted so many flowers, laid down so much mulch, fertilized so often. Brian had a busy month of work. Their development team from the Ukraine came to visit for a week. And then, not much later, he left to attend a conference in San Diego. I got a flyer about mommy and me classes at the YMCA and Patrick and I started attending. We were often the only family there, besides the teacher, but we really enjoyed the time together and made some very dear friends. We also decided that wedding was the perfect excuse to remodel our cramped, outdated, and slightly rotting kitchen. On Easter weekend, the kitchen was gutted.

May –   We turned the basement wet bar into a makeshift kitchen. I learned tricks with a rice maker and a crock pot and a microwave and a grill that I’d never learned before. Between the yard and the kitchen, we made so many trips to Home Depot that Google’s cell phone tracking on my phone decided I must work there. Patrick had to spend some time out of school sick and so we also spent a lot of time snuggling on the beanbag chair in the basement. At the end of May, Brian went to New York to attend a “hack day.” In other words, a programming competition of sorts.

June – Patrick graduated from preschool. Our kitchen was finished. The wedding came out better than I’d dreamed and we welcomed Tedd into the family. Patrick immediately fell in love with him. I’d taken such good care of my garden that I harvested lettuce and spinach successfully for the first time. I started summer Mommy School, a weekly home school curriculum. We also started attending “lunch park” at the elementary school next door with some encouragement from our friends at the YMCA. Patrick was allergic to most of the food served there, but the chance to go sit on the lawn and eat with the other kids in the neighborhood, to let him make some friends. That was priceless.

July – Brian bought a book of Utah hiking trails and we started spending as many weekends as possible hiking as a family. In the hard stretches, this meant Brian carrying Patrick on his shoulders while I huffed and puffed my overweight asthmatic self behind them. But it was wonderful to be out in the mountains together.  Patrick and I also frequented libraries and parks. I got free museum passes and we visited all the museums in Salt Lake City at least once.  We full-filled a lifelong wish for Patrick and bought him a ride on car that we spent the rest of the year following him around in. He also mastered riding a tricycle.

August – I talked to Patrick’s transplant team about scheduling his annual checkup since it would be a year since our last visit in September. Patrick’s clotted line had developed a hole and needed repaired so they decided it would be best to replace the line at this visit. Not wanting to interfere with school, I asked them to schedule us early and we headed out to Nebraska a couple of weeks later. They were able to replace Patrick’s line without problems. We opted to turn the trip into a family vacation and drove to Nauvoo, Illinois, a very important historic site for members of the Church of Jesus Christ of Latter-Day Saints. (The site of a very large early Mormon city.. the last they lived in before mobs forced them to move west to Utah.) I crossed an item off my bucket list. Patrick weathered well a nice long roadtrip across Iowa with the company of his imaginary friends, Daniel Tiger and Prince Wednesday.

The rest of August was a crazy busy. Brian spent a week in Georgia learning how to create android apps (and ziplining). Meanwhile, I made a mad scramble to get everything pulled together for Patrick to be ready to start school.

September – Patrick started kindergarten. Thanks to years of preschool and the extra cramming of summer mommy school, he started at level with his peers. He was blessed with amazing school staff who adapted their teaching to help him continue to progress. They also worked to teach his classmates to be accepting of him and, one step further, Patrick made several friends in his class. We started the month by taking Patrick camping for the first time, in a cabin. Unfortunately, a g-tube leak in the middle of the night led to an infection that landed him in the hospital and he had to miss the second week of school.  Patrick also had testing that confirmed all his same allergies. He started attending group therapy to work on social skills. And he became the proud owner of an adaptive stroller/wheelchair.

In mid-September, Make-a-Wish threw Patrick a surprise party to let him know his wish was finally being granted. They invited all of his friends and family and hired an ice cream truck. We left on our wish trip at the end of September.We stayed at Give Kids the World. They gave us tickets to Universal Studios and SeaWorld as well as DisneyWorld. We played from the moment we woke up till the moment we fell asleep. It was magical.

October – Because of district budget, Patrick got a new teacher at school. She was also amazing, too. To help the transition, and because it’s my dream job anyway, I got to start volunteering in the classroom at school. I was invited to attend a research planning conference in Washington DC in mid-october as a parent advocate to talk about how research could help solve the problem of lost central line access. It was the first I’ve left Patrick overnight (except when he was in the hospital.) It was strange but good to get out and be myself and a grown up for a few days. We attended some early halloween parties and I helped throw a halloween party in Patrick’s class.And then, on the 30th of October, we got a call that they had found a donor for Patrick. He received his transplant on his birthday, October 31st.

November – November was devoted to recovery. Patrick flew through the usual post-transplant obstacles. He made it out of the PICU and off of IV feeding in record time. However, right before Thanksgiving, that early progress backfired as his lymphatic system was leaky and he got a type of fat leaking around his lungs. He had to have an emergency chest tube as his lungs were collapsing. He was doing better until his stoma healed too tightly and had to be revised. But, with a change in formula and a quick revision surgery, he sailed through recovery again.

December – Brian had to go back to Utah to work and he spent the month trying to catch up work and to get Christmas ready. Meanwhile, Patrick was discharged from the hospital on December 8th. We moved into the Ronald McDonald House where we enjoyed a Christmas season full of gifts and cards from home and watching the generosity of others but without the bustle of other Christmas preparations. We learned a new medical care routine. We tried adjusting to the side effects of Patrick’s new medication. We made Christmas crafts with friends. Brian and I celebrated our 11th anniversary apart. But, a week later he came back and we celebrated together. We enjoyed a different but amazing Christmas where we were showered with love by friends and strangers.

And then, right at the end of December, Patrick’s stoma prolapsed and landed him back in the hospital. Offered the chance to take it down, we did. And therefore, we spent New Years’ Eve this year in the hospital. Patrick and I passed out in exhaustion right around 11 p.m. Brian waited up and rang in the new year.

 

Transplant Day 62 and recovery is hard

I didn’t update yesterday because hands were full and because there wasn’t too much to say. The first 2 or 3 days after any intestinal surgery are kind of miserable. Bellies hurt when you mess with them. So this time around, Patrick’s nurses have been pretty good about staying on top of pain medicine. His pain has been better with that help. The morphine makes him itchy and sleepy. The other medicine, called Roxy, seems to work very well and when it’s in his system he rests. But it’s not IV so you have to hope his belly can handle it when you give it. Mostly, he just slept yesterday.

In order to reduce infection, they didn’t entirely close Patrick’s incision from his stoma. The muscle wall is stitched closed, but the skin layer is “packed.” That means it’s stuffed with sterile saline soaked gauze and has a gauze over the top. The gauze has to be changed twice a day. Patrick pulls his shirt up over their head so he doesn’t see while they do this. The is definitely the more painful route. But it has proved better healing overall.

Brian held him most of the morning yesterday. Then he moved to the bed and I snuggled him all afternoon while Brian worked. I caught up a bit on my missed episodes in Hulu. And i started listening to an ebook with my new bluetooth headphones. (Love that my Christmas presents are making this hospital stay feel a little more comfortable. With my new backpack and winter clothes I feel much less like a vagrant wandering through the hospital.)

Patrick woke up feeling a bit better and played on the bed for most of the evening. It took till 11 for him to finally fall asleep again.

Today hasn’t been as comfortable. It takes days for the bowel to wake after surgery. Especially with pain medicines in the system. So, without anywhere else to go, his belly juices started to back up and he started throwing up this morning. They finally put his g-tube to suction this morning and he seems to be feeling much better now.

The good news is that his gut is gurgling from time to time and so far it seems like his body is on the road to healing well. It’s just hard for the first few days.

Hopefully we can keep the status quo today. Maybe even get Patrick back to sleep as being tired and being on steroids really does make him not feel like himself. I’m going to be an optimist and post this update now hoping that there won’t be any more big news today.

Tomorrow is a new day and a new year.

 

Transplant Day 60 and A Farewell to Louie

I’m blogging from the surgery waiting room and hoping that I can finish this before the surgeon comes out as it appears that they are closing right now.

It’s been an exciting 18 hours. First of all, let’s do a review lesson.

Patrick had an ostomy created at transplant. “Ostomy” means “outward thingy” in layman’s terms. In Patrick’s case, it means that they pulled a little bit of his new intestine out through his abdominal wall and put a couple of small holes in it. The purpose of this was to make it easier to do biopsies. Rather than needing to sedate him to look into his intestine with a scope, since there are no pain nerves in the intestine, they could take off the pouch covering the ostomy, insert a small camera and look at the intestine.. then they could take a small biopsy and screen for rejection. Patrick has had this done 3 times since transplant. So far there are no signs of rejection.

I read in some article while Patrick was recovering a suggestion to name your child’s ostomy. It makes it more approachable. It gives you a kind of code-word to talk about it in public. After much debate, we named Patrick’s ostomy Louie.

Well, Louie had a problem last night. I’m not sure exactly when or how. Probably sometime around dinner Patrick started to guard the way he was moving. Not bending over. Not wanting to sit. And I, in all my brilliance, didn’t think to check and see why. I assumed Louie’s bag was getting full.

Well, at 8:45 I went to give Patrick his medications and get him ready for bed. I asked him to get undressed and he really struggled. He particularly couldn’t get the cover off of his ostomy pouch. So I knelt down to help him and thought, “Gee. That looks funny.” I looked forward and Patrick’s ostomy had “prolapsed” or, in other words, slipped out.

That doesn’t mean all of Patrick’s intestines came out. What it means is that an ostomy is a surgically created hernia.. only somehow Patrick’s had made his hernia herniate and so more of it was out that was surgically intended.

But it was new and still looked good. So I called the on call nurse coordinator. When I told her why I was calling I could hear surprise and concern in her voice. She asked me a few questions and then asked if I could come bring him in.

They have a short term treatment center here that they have their transplant patients come to for minor emergencies. Kind of nice to not have to go through the ER.  They checked us in and then called the surgery resident to come have a look. The transplant team was all in a kidney transplant so it took a minute for her to arrive.

When she came, though, she had a look and Louie was seeming a little upset. Swollen and kind of dark colored. So she said we should spend the night and decide what to do in the morning. Then not long afterwards, the surgical attending came in. He tried to push Louie back inside, but without success. He said we should sleep on the problem, too.. But suggested that, as this was the second problem with Louie in the 2 months since transplant, and since Patrick isn’t needing regularly biopsies right now, maybe it was time to consider taking down the ostomy.

So Patrick and I spent the night last night. We went to bed about 2. He mostly got to sleep until just before 10. It was a cuddly, nice night. And nice to have a break from being the one keeping the medical care going during the night. And in the morning, Louie was slowly going back in.. but not quite enough and a revision was looking necessary.

So we talked with the surgeon this morning. Ultimately, we decided that Patrick is a very active child who was going to continue to have problems with this unless something more was done. And it didn’t make sense to put him through a surgery to maintain an ostomy that is rarely being used for the reason it was created.

**Picking up this post at 9 p.m. Patrick’s surgery went well. They were able to take down his ostomy.. The intestine was already connected, so they just needed to close things back up. Nevertheless, this did leave him with good inch-long incision that will need to heal. It isn’t stitched closed. They are packing it with gauze to heal as they have found that this provides better healing, even if it also means a bigger scar.

He has had a hard day. He is sad and he is sore and he is itchy. He wants to eat and drink. He doesn’t understand why this happened so suddenly or why. The pain medicines have made it so he’s slept most of the day, thankfully, as long as Brian or I lay with him. That is probably the hardest thing from our perspective. Getting up to eat or go to the bathroom or really do anything upsets him. So we just try to lay still. There are 2 TV’s in the room so one can play his shows and one can be tuned in to one of ours.

Hopefully this first day or two will be all that is hard. As soon as his gut wakes up and starts moving things through, he can start clear liquids again and then they’ll restart feeds. It will probably be at least a week.

I’m grateful Brian is here to give me breaks and to go back to the Ronald McDonald House for clothing and food. I’m sorry, though, that we are spending the last week of his visit here this way.

Hopefully it will be just a short setback that adds up to a better quality of life for him long-term.

Transplant Day 56 and Christmas Day

We had a very unique, but very amazing Christmas day this year.

It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.

Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.

Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.

I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.

We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.

But when he did see them, that’s all he wanted.

We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.

I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.

Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and  gifts donated through the hospital and  the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.

A phrase from a verse in Malachi kept running through my head.  Malachi 3:10:

“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”

Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.

After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.

Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular.  I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.

And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.

We ate well and then had to reign ourselves in because we knew we had other plans.

In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.

Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.

While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.

BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.

But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.

And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.

I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.

And we, through the ordinary people, have seen the hand of the Lord this Christmas.

Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.

Transplant Day 55 and Christmas Eve

Oh what a difference a good night’s sleep makes. Patrick slept 10 hours last night. Which means I got a good 8 hours with only my routine fill-the-feeding-bag interruptions. We all felt so much better.

We’d have slept longer, but today was lab day. That’s ok. We needed to get up and get moving to fit in all we hoped to do.

One of our favorite Christmas traditions since before we had kids is to visit the zoo on Christmas Eve. People don’t think of the zoo on this day. They have other things to do. Therefore, it’s quiet and uncrowded. You can take all the time you want. Animals behave differently when it’s a little cold, too.. so you get to see a different side of the exhibits in many cases.

And guess what? Omaha is home to one of the world’s best zoos: the Henry Doorly Zoo. And so of course, as soon as we finished the morning meds and formula mixing (complete with me forgetting to vent my bottle after shaking it so the baking soda made it explode all over the kitchen) we headed off the zoo.

Well, with a stop at Taco Bell for breakfast. Patrick willingly took bites of an entire hash brown this morning. That is a HUGE deal.

Anyway – we got to the zoo and discovered it was bitter cold. Thank goodness this zoo was also designed by people who live here in Nebraska where the humidity makes all weather feel extreme. Most of the exhibits are indoors. So we hurried into the Lied Jungle where we warmed up in a rainforest climate. Patrick had a great time running around here and elsewhere in the zoo.. but he would get tired and try to get us to carry him and then we were grateful for his stroller/wheelchair. He’s still got a ways to go recovering.

We had a lot of fun this morning. There are lots of babies at the zoo right now and we got to get up close views of several of them. Patrick and Brian had a great time playing with one of the gorillas. We saw an extremely rare white lion cub. And then, we were tired. So we headed out… but not before acting on the idea to turn one of the very generous cash gifts we received this week into a membership to the zoo so Patrick can come back as often as he wants while we are here. The zoo in off-peak hours is an approved immune-suppressed activity.

Anyway – after the zoo we came back for lunch and some quiet time in the room. Then Brian and Patrick started some laundry while I went to the store for a few last-minute things.  (Including stocking stuffers. I opted not to get stockings after some filled ones showed up in a package from DDM. But then Patrick got another stocking from a friend that he was allowed to have early. He told me yesterday Santa was going to fill it back up again… On a sidenote, I’m glad Patrick knows now what stockings are for as the first few times he saw them, he asked if he could wear them.) Then, Brian took Patrick off for a walk to let me wrap the last couple of presents in the room.

Dinner tonight was catered pasta. An amazing family took the time off this evening to arrange that on a night that Ronald McDonald House doesn’t always see people willing to give up the time to provide us a meal.

We spent the evening working on crafts with the rest of the house. Wendy and Kate went all-out with clay ornaments and ice-cream-cone Christmas trees tonight. It was a lot of fun to see everyone’s families arriving tonight to spend the holiday with them. The mood of the house was pretty light and happy today.

Patrick, for the first time I can remember, is genuinely excited for Santa to come. He just kept showing me that only the white ring was left on his advent chain. And then he’d skip and run down the halls.

We followed some other traditions tonight: opened Christmas presents. He was so excited by the minion pajamas Grandma sent that he decided to go into the bathroom and dress himself. (We asked him why in the bathroom. He said “A dunno” (a common phrase right now) and away he went. Then he stayed and drew on the mirror with the dry erase markers I use to chart fluids there for another 15 minutes.

We opened another traditional package – a Christmas book that we share with his birth parents. This year I picked “How the Grinch Stole Christmas” which seemed a bit over his head, but I thought appropriate for the year.

Except the no presents thing. Patrick had a little trouble setting down to sleep at first, but when he was sleep he was out cold. So Brian got out the presents that were hidden under the bed. This room is overflowing with presents from the hospital, from family, from friends, from co-workers. And I know there are more outside of this room, too.

And so, that was our Christmas eve. Different. Simpler. Uncluttered. Very few last-minute preparations. No hours spent on a fancy meal. A later bedtime than I’d usually allow. And lots of new friends.

Thanks to the kindness and generosity of others – this year is different, but not nearly as hard as I thought it would be as I laid awake in the hospital worrying about it a month ago.

Right now, my biggest worries are where we are going to put all these gifts once they are opened.. and how to convince Patrick to take a bath and put on clean pajamas (yes, that’s a short gut Christmas tradition) before diving into the pile of presents that are in the room he’s waking up in.