physical therapy – Patrick Hoopes

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 46 and Physical Therapy

Today was a busy day. I knew we’d need to be up early to start out with labs, but last night was another night where Patrick didn’t make it to sleep till midnight. So when he snuggled up next to me and fell back asleep this morning, I didn’t really have the heart to wake him.

At 8, as my alarm was going off after the 3^rd snooze, I decided we were going to have to bite the bullet and get up. I could tell that sometime during the night Patrick’s ostomy bag had come loose. Thank goodness I’ve got a good drain system set up so it didn’t make a mess that woke us earlier. But it did mean that we had to start off with a bag change right away.

Patrick wasn’t so sure of me when I put him in the tub without waterproofing his bag.. But it actually worked very well to make it come off quite easily and changing the bag went very smoothly. But we were really pressed for time so when the phone rang to tell me they were showing his nurse up, he was still quite naked and wrapped in bath towels.

We hurried to get a diaper on and wrapped him up in a blanket and the nurse was able to draw his labs. Meanwhile, my phone rang and it was the pharmacy. It’s been one week since discharge. Time for a new shipment of supplies.

When we got through all of that, it was already 9 a.m. I begged Patrick to stay on the bed and watch Blues Clues and let me run downstairs for his medicines alone so it could be faster. He agreed and we were able to get all of his medicines given on time. But in the meantime, he was a lot happier in the room watching TV than he usually is trying to entertain himself while I do up meds in the morning. In fact, he happily stayed and played and watched TV for another hour and a half.

That gave me time to clean up the room a bit and to set up the printer that my mom and dad bought me for my birthday. (I knew I’d want to do Mommy School here so that was one of my first wishes.)

Finally, I was hungry and he needed formula made so it would have time to chill before starting the new batch running and we had to give in and leave the room. Besides, Patrick needed me to buy him new socks. So we went downstairs and got ready and went to Target.

Let me tell you about why Patrick needed new socks as it brings you to the next part of our day. If you are new to our story, you may not know that Patrick has an anoxic brain injury and cerebral palsy. When he was 8 months old, his heart stopped because of an infection and some medication they were using to treat it. It took over 15 minutes of CPR to revive him. The result is that the ends of all of the blood vessels in his brain were deprived of some oxygen. That accounts for a lot of his behaviors and most of his developmental delays and learning disabilities.

When you hear the phrase “cerebral palsy” you probably imagine someone with a very severe case whose body is contorted with muscle spasms: someone who can’t eat, can’t talk, can’t walk, etc. That is what you imagine because that is the presentation that you can’t ignore so you ask about it. But what cerebral palsy really means is that at birth or shortly thereafter, the brain was starved for oxygen, leaving the patient with a “palsy” or lack of control of the muscles of the arms or legs or more. The signal from the brain to these limbs gets confused or altered somewhere along the way causing unexpected movements, often causing the muscles to spasm.

Well, over the past week, I have seen Patrick’s hip and foot of his right foot turning inward. He is becoming more clumsy and having a harder time controlling those muscles. I started making him wear his walking brace for half to all of the day. (Enter the need for new, longer socks that would prevent rubbing from the brace against his leg.) We’ve been doing stretching, too, and those muscles are much tighter than they have been in years.

Today after shopping and a short nap, I took Patrick for a physical therapy evaluation in the hospital’s outpatient clinic. I wanted to evaluate his recovery and I was especially worried about this problem with his gait.

The news was good. First of all, Patrick is a “rockstar” from the physical therapy standpoint. His incision is better healed, his movement is better, his pain level is less, and his energy is more than most patients at this point. He is really doing remarkably well.

The therapist said that she thinks that the spasticity in his leg is likely a combination of problems: the trauma of transplant, the effect of new medications, the exhaustion of recovery. In other words, she said that it’s probably something that he’s feeling all over, we just are seeing it more in his leg because that is where he is weakest. She said that for every 1 day in the hospital, we should expect 2 days for his body to recover. Considering that he spent 39 days in the hospital, it will be a few months before he is back to full strength.

The prescription is simple. Keep doing all of the exercises we were working on at home for leg strengthening like climbing stairs, squatting and tiptoes, bike riding, jumping. But, for the next little while, have him wear his brace so that while his nerves and muscles are relearning and recovering, we are training his body to move the right way. Patrick is not amused by this prescription. He keeps asking me to let him take his boot off because he feels like it’s in his way.

The therapist said that she is seeing such progress in the area of gross motor skills that, given our insurance policy’s very limited therapy visits, that she feels like physical therapy would not be her focus right now. She recommended instead that we take advantage of the opportunity to work with an occupational therapist who specializes in feeding in kids post-transplant while we are here.

She also said to allow him lots of rest. And I think that I realized today that doing so may require a little more keeping him in our room. When we hit our room, all of the sensory overload caused by the rest of the house melts away. He is happy watching TV and doing crafts. Tonight it finally clicked for him that the tote in the corner is a toybox and that he is allowed to go get those toys out and play with them.

I don’t know for sure. We’ll need to find a balance so he gets social time, too. We both need it. But we both were much happier with some quiet, one-on-one free play time in the room.

We had another special treat tonight. One of the men from our church who helps bring the sacrament has talked for a while about inviting us over for dinner. Well, tonight, we got the chance. That was really such a treat! Patrick had a great time playing with their two little ones (ages 3 and almost 5). I spend some time with some other adults about my age whom I have a lot in common with. And just take a break from all of this medical stuff for a while. But also, without a ton of explanation. He has been visiting for a while now. He was also the anesthesiologist on Patrick’s case the night of transplant. So they know the story and some of the things they should expect. It was good to just be normal for a little while.

We were both sad to see the evening come to a close. But it was bedtime and we needed to unwind to go to sleep here, too. Setting up my printer meant I also set up a place my laptop can sit next to the TV, so we were able to turn on one of the new DVD’s that Brian’s parents sent him. We watched Curious George’s Christmas while I cleaned up the room, prepared feeds, drew up medications, and got Patrick into his pajamas.

He made it to sleep by 10:30 tonight which isn’t the greatest, but is better than midnight. He also is starting to prefer to go to sleep in his bed on his own. He won’t admit that. He would love for me to lay with him. But he has started to do his usual putting himself to sleep routine if I’ll just lay with him for a bit, then tell him it’s time for met o kiss him goodnight. I kiss him and go lay in my bed until he falls asleep. Then I get up and try to get done whatever was waiting for him to rest.

Tonight while I waited, I decided to poke around Pinterest for kindergarten homeschooling ideas as Patrick’s teacher was still sick today and an hour a week of school is certainly not getting him the education he needs or that his little mind is craving. I am thrilled to say that I stumbled across a curriculum that looks like it will pick up exactly where he left off at school and that really fits his learning style. It even has little printable readers. (I’m trying to decide if I print them or see if it’s possible to throw them into an e-reader format to save on printing). I’m excited to grab a little bit of playroom time tomorrow morning so I can get it downloaded and start working on it.

One last bit of news, then I have to post this and get to bed. My eyes are drooping. Patrick’s transplant coordinator called this afternoon. The great news is that his prograf level is finally in range. Just barely, but it’s there. That’s the first time in a week. That means no medication adjustment. It also means that we get to switch to twice weekly labs. And THAT means that we can sleep in in the morning if we’re tired. At least till meds are due at 9.

However.. you probably wont’ get to read this until then because I am just plain too sleepy to go hunt down an internet connection until morning.

Transplant Day 37 and Saturday is a special day

Well, despite the rough night last night, we have done our best to make today a better day. It still started out iffy. I woke up with a tremendous headache and a backache, too, because Patrick found the button that turns off the auto adjusting mattress. I thought this would be better because it wouldn’t keep sinking on my side every time I moved. However, without that extra inflation, sleeping pressed into the corner of the bed with Patrick on my arm just made my back hurt.

But, at 9 I managed to sneak out of the bed with him still asleep and take some pain medicine and have the morning conversations with the doctors and nurses without waking him for a little. I also got on Amazon and used our Prime account to order a few of the supplies that we desperately need for discharge that I just don’t see how I’m going to make it to a store to buy. (If you don’t know this about my faith.. we don’t shop on Sundays. Goes back to the 8th commandment where it says not to make your servants work on the Sabbath.) Sure hospitals are 24/7 and medical emergencies force my hand from time to time, but we try REALLY hard to stick by this principle and not many any more people work for us than necessary on Sundays. So shopping had to be done today or it won’t be done. But back to the story..

The team rounded early. That was nice because it meant I wasn’t stuck here. There were no changes in the plan. Just trying to get the right medication dose. Alas, at 4 p.m. we learned that the morning dose had been low still. That means that tomorrow and Monday’s levels have to both be in the target range because we need back to back good values before he’ll be ready to go.

I did get one thing right, though, in my advocating for his care. I asked the nurse to give him his zofran an hour before the time he usually wakes up. And, for the first time in 2 weeks, Patrick got up without being nauseous. That made a HUGE difference for how the day went. Getting him ready was so much easier because he felt good enough to sit up to get dressed and for his bath. I think that’s going to be a daily change for a while.

At 11, Patrick’s nurse managed to round up a volunteer for me. There may be only one who comes on Saturday, so this was a bit of a miracle. I hurried off to the Ronald McDonald house to try to address the very serious problem that I was out of clean clothes. I ran into another transplant mom I know there. She offered to help get my laundry dry and to my room which was a HUGE blessing. The washing machines at the RMH are slow and you just can’t really finish laundry in the 2 hour window a volunteer can stay. So I got the clothes in the washer and then collected the day’s delivery of packages. (I wonder if they hate me, we have so much come mail order.)

Today’s shipment was an assortment of medical supplies and a set of small plastic food storage containers. The latter made me very happy as it made it much easier to raid the leftovers from last night’s dinner at the Ronald McDonald House and bring them here for lunch.

I even managed to get back to the room on time.

Patrick and I had a good afternoon. We had lunch and then attempted a nap. (But failed attempts at sleep can sometimes make sleep times for the next several attempts harder. He didn’t nap. And just now, bedtime was harder than usual.. though he did make it so sleep pretty quickly once I told him I was going to go blog so I wasn’t a distraction.)

We are running into some sure signs that Patrick is feeling like himself again. He doesn’t want to sleep away from home. It’s getting hard to get a good blood pressure reading because he won’t hold still. The room is cluttered with bits and pieces of his toys and crafts. I am spending most of my time just watching trying to keep him safe.

We did make it to play in the playroom a bit this afternoon. We ordered up dinner from room service. Patrick has been excited to try their roasted potatoes and did as good of a job tasting them as he ever does. I am hopeful we’ll make more progress once we get outpatient and I can cook for him.

Then, this evening I decided to double our evening walk. Last night as we walked to the cafeteria, we saw that they had put Christmas lights in one of the outdoor gardens. So today we walked down to that garden to see the lights. He only got tired and asked to be carried once. (Goodness is he heavy with these weak muscles!) He didn’t last long outside, but he made it all the way back after just a short break and was even kind of skipping/jumping along the way. I have good intentions to bat my eyes and see if I can’t get a nurse to let me “practice” with his portable feeding pump in a backpack tomorrow and see how far he can go if the pump battery doesn’t die and bring us back.) One nice thing about the hospital being dead on the weekends is that it doesn’t seem as dangerous to go play in the halls.

We read some books using the Readeo account his Uncle Mark bought him, and then put him to bed. Like I said, he tried to play and stay awake. This is also typical, feeling-himself Patrick behavior. But his little body needed rest and he was out within 5 minutes of me biting the bullet and saying I couldn’t lay with him because he was trying to play with me.

Transplant day 36 and almost

A Christmas tree appeared in the playroom yesterday. Patrick had a great time exploring its ornaments.

Well, Patrick had another spectacularly good day. We started with the goal of him getting out of bed by himself, since he’d climbed in by himself the day before. This was harder than expected, given his morning nausea.. But that information was helpful because I haven’t been able to tell if he actually needed zofran in the morning. We think he does and we made a plan to give it every day for a while. Hoping he starts his days off better…

Because once he’s up, he’s up. He had a great day yesterday. He’s up and around the room now. Physical therapy came by and we checked the fit of his walking brace that we had repaired. It was a bit shocking to me to see just how ill-fitted it is now. His muscles have diminished so much over the past month of bed rest. But wearing it as needed shouldn’t do him harm. And the goal now is to build those muscles back up.

So she got him up and we walked to the playroom and played with magnet letters for a while. Then when he was good and tired, we came back and took a nap.

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Overall, the day was chaos. Patrick is doing well enough to meet the criteria to be discharged from the hospital. Unfortunately, the levels of prograf (anti-rejection medicine) in his system have been either too high or too low. Until those levels stabilize, he needs to stay inpatient. The lab results were late coming back so for the morning, we got ready for discharge just in case. And in the afternoon, even though the level came back too low, we were still getting visits to discuss discharge planning. (I wish I could say this was more exciting, but we have been having discharge planning conversations off and on for a couple of weeks now.) It meant, though, that we had people in and out of the room and a lot of chaos all afternoon.

It also meant that I couldn’t leave the room to go do any shopping or laundry or other preparations for the weekend. I think this was the hardest part of an almost discharge. Being here alone means that I get very little time to get out of the room and to take care of those basic living needs for me. Once, maybe twice a day, a volunteer will come by for 1-2 hours. For the past several days, the team has had me spending those precious got-a-volunteer hours preparing for discharge. But that means that the other things haven’t gotten done and there aren’t other opportunities later to make up the difference.

So, since evenings are when there are no volunteers and the nursing staff is busy starting a new shift, I gave Patrick a choice of ideas for dinner. We decided it would be good to take him for a walk. Now remember that he has been riding in a wagon anytime he goes outside of the unit. Yesterday’s walk was about 6 times farther than he’s used to going. He was extremely winded by the time we got to the cafeteria. But he was a great sport about it. He even kept his mask on and washed his hands with hand sanitizer and let me clorox wipe his chair before he sat down.

We bought him some chips and me some sushi. In the end, he was too tired to eat, though.

We came back to the room and I was sure he was going to crash. We did his advent ornament craft while waiting for the nurse, then decided she wasn’t coming before evening meds. We video called daddy, then got ready to sleep.

But wouldn’t you know it, that’s when Patrick’s nurse came in. And I made the mistake of telling her that I hoped to make up for not getting away for laundry and/or shopping by going after Patrick went to sleep.

I’m not sure entirely that it was that.. it could have been the stuffy nose that the dry hospital air is causing.. or that Patrick could sense my growing anxiety. But last night, Patrick decided not to sleep. I tried everything I could think of. Finally, about 11 I gave up on my plans and just tried going to bed. A little before midnight, Patrick went to sleep.

I didn’t sleep great. I woke up several times trying to figure out how to get laundry done before we completely ran out of clean clothes and some things purchased that we’ll absolutely need by Monday. I’ll blog again later today and you’ll see I found a couple of temporary solutions today. But I’m going to have to find a better way to balance time and a better or different way to use helpers. Because this method isn’t working and it appears that sneaking off in the middle of the night to make up the difference like some other moms do is not going to be an option.

Transplant Day 21 and baby steps

Today was a relatively quiet day. In fact, by the end of it, I think we all were feeling more than a little stir crazy from being in the same room together doing the same things day in and day out. But quiet is good.

Patrick definitely had a better day. Between the slight reduction in feeds and me finding a way to be super sneaky and unsmelly in emptying his ostomy bag, he didn’t spend the day feeling sick. That left him free to try other things.

Like walking, for example. The physical therapist came by and encouraged us to let go of his hand and try walking. He was a touch unsteady and there certainly moments where he moved the wrong way and it hurt. But he did it. And it gave me the idea for a game that kept him motivated to walk several more times. Because Patrick loves Blues Clues, I drew some pawprints on slips of paper and I hid them in strategic places that he would have to bed or reach a little to get. Then we’d go play Blues Clues and find the pawprints. He actually was really upset when I wouldn’t play anymore tonight.

And speaking of pawprints, we decided to go check out pet therapy today. They have several specially trained dogs that visit the hospital. Very sweet and obedient. Patrick was more fearful of them than I expected.. perhaps because he’s still sore and was afraid they might jump on him. But it gave us someplace to go to today, at least.

The other big news is that Patrick’s biopsy results came back. Amazingly, today’s rejection score was a 0. No rejection at this point.

That leaves us with a few goals to work on. 1) Get Patrick’s feeds back up that 5 cc’s more to 95 without making him sick. 2) Switch him over from IV replacement fluid to replacing lost fluids through his g-tube. As long as he has an ostomy (which will be over a year), he’ll need a little bit of extra hydration. 3) Get a plan of how to pay for Patrick’s Valcyte. It turns out that they missed checking a box on the patient assistance application and are now having to reprocess it.

I’m spending tonight at the Ronald McDonald House. It is strange to be here. It is strange to know they are there. I also have gotten quite used to going to bed with Patrick so staying up late to finish the laundry has me quite tired. And that is making me appreciate my husband because he has been doing this for us every few nights for the past several weeks.

I also appreciate the flexibility of the people he works for and with. I have been trying to find a way to give him more time to catch up on work. And in the end, he just keeps setting aside what he’s doing to come in and save me.. to make sure Patrick is up and walking, to make sure I get a chance to eat and shower and change my clothes, to snuggle with Patrick so he can nap.

Before long, we are going to have to let him go.. and I can tell you I am going to miss having him here. Patrick will too. Which is part of why, despite Patrick’s protests about my leaving, I am here and they are there tonight. At least, in my mind it is.

Transplant day 8 and a new room

Patrick woke up happy and friendly this morning at 6 a.m. During the night, he’d managed to work himself into a position where his head was resting on my shoulder, which made him as happy as can be. (He has an IV in his neck right now that makes it impossible for us to comfortably have him rest his head on my arm.) So, we found his tooth fairy money and we layed in bed and snuggled and talked. Then, the morning excitement came.

They don’t love sleep in the PICU. As soon as he was awake, they wanted to weigh him. I insisted they at least give him pain medicine first. But weighing is one of Patrick’s least favorite activities as it requires that he stand entirely on his own. Today, he managed to be weighed, but when I wouldn’t pick him up and carry him back to bed, he curled up on his knees on the floor and refused to move. It took some effort to come up with a way to coax him back to bed, but we eventually got here.

Physical therapy stopped by earlier today and asked about taking him to walk. We crafted a couple of plans that we thought might help motivate him. One of them included me offering him a wagon. But still, when it was time to get up, Patrick didn’t want to have any of it. Eventually, we just took him anyway. Once he got to the wagon, he’d earned a ride around the unit which brightened his mood and, with the wagon’s removable side, I was able to coax him to walk from wagon to bed a couple of other times during the day. Getting him out of bed 4 times in a day is a record.

Out for a wagon ride as a reward for a long walk this morning.

There weren’t many medical changes today. Patrick’s hemoglobin was low following yesterday’s biopsies, so they gave him a transfusion. I hadn’t realized how pale he was until I saw him with color again. That meant an awful lot of monitoring by his nurses, though, which meant very little time for sleep.

I finally gave up and just sat out of sight at 2:30 and he fell right asleep. But he only slept a half hour before they came to finish up the last of the medications that had to be given in the PICU. They gave me a cart to pack all of our things on. (Would you believe this kid came here with just a suitcase that is still sitting back in my room? All of this has been accumulated in his week here!)

All but one bag on this cart represents things acquired by Patrick in our time here. Some are borrowed. Others are gifts

Then, they made a big fuss about getting Patrick ready to go and out of bed into his wagon. So I moved him to his wagon.. and then we waited, and we waited, and we waited because the nurse on the floor was too busy.

Finally, at 5, Brian texted to say that he had arrived back in Omaha and just a little while later, appeared in the room. Goodness, it was a relief to have him back.

Not long afterwards, they finally came to move us out of the PICU and onto the Pediatric Floor. This is probably going to be our home for a while… But they gave us one of their bigger rooms which is going to be a whole lot more comfortable, assuming they leave us here instead of playing the hospital shuffle. I think this is one of the largest hospital rooms we’ve ever stayed in, complete with sleeper couches and a closet and a fridge.

It’s strange to have so little going on after such a busy week. Nurses pop in and out from time to time, but mostly we’ve been left alone.

I think we are all exhausted and looking forward to what will hopefully be a better night’s sleep. Now that Patrick has had his moving day, Brian and I will have ours. I understand there is a carload to get situated. Then we’ll see about settling into what we hope will be our home away from home routine for the next few weeks.

For anyone still looking to send mail, our room number is now: 6229. Mail time is currently our favorite part of the day.

Patrick picked this pose: sleeping in the wagon.

Transplant Day 7 and the tooth fairy

This picture kind of tells most of the big news of the day. Look closely and you’ll see a few things.

1) Patrick was able to wean off of oxygen to room air during the night last night. That means no more nasal cannula.

2) They decided that his g-tube was providing sufficient drainage for his belly. He’s still having bleeding, but no apparent side effects. They have been trying to clamp his belly periodically throughout the day. If things continue going well, they’ll start feeds through his belly soon.

3) Patrick lost his first tooth. We noticed a loose tooth a week ago as Patrick was leaving his class Halloween party. When he went to the OR, the anethesiologist said he’d pull it so it wasn’t a choking risk. Then the report came back that it wasn’t loose enough yet. Well, today it was quite wiggly. And tonight, as I was putting Patrick to bed I noticed it was missing.

He was terrified. He thought something really bad had happened and insisted we needed to press the nurse call to take care of this big emergency. It took a while to calm him down. Then his nurse came in and helped me make a big deal about it. We called some other family so he could tell them and after a little bit of celebration, was proud and not scared. We’ve told him the tooth fairy will take care of finding it in his bed and he’s excited about finding some coins there.

Other big moments of the day: Patrick had his first scope. This is the entire reason that Patrick has an ostomy right now.. so they can easily look inside and check his intestine for rejection. They brought the scope right to the bedside. Patrick was pretty worried, especially as this happened first thing in the morning. But the doctors did a great job of putting him at ease, showing off the equipment, etc. Because there aren’t pain nerves in the intestine, they can just do the scope right at the bedside… Just slip in the scope, look around, take a biopsy and done. The longest amount of time was spent taking off Patrick’s ostomy bag so they could easily reach where they needed to.

He was downright adorable the whole time.. and when they sent a puff of air in to open the intestine (they said this might be uncomfortable), Patrick just giggled and said it tickled. Whew! We are doing those at least weekly for the next month and then very regularly for up to a year.. and so it was a huge relief that he wasn’t scared by it.

Really, our only scary moment today was walking. Physical therapy came and because we’d had all the excitement of a scope, a bath, two tubes and lots of adhesive removed all in the wee hours of the morning, Patrick was just plain tired. Also, with all of that going on, I don’t think they had been very consistent with pain medicine. Anyway, he made it out to the goal they’d set and was doing so well, they decided to push for a few more feet. Only, he was hurting and didn’t want to go 2 more feet. He just sat down on the floor and cried. (This is a problem on so many levels when it comes to protecting an incision and protecting an immune system.) It took a good 10 minutes to coax him into walking back to the room and then, only with me hugging him the whole way.

We’ll try again tomorrow.

Really, it was a pretty good day overall. He napped for almost 3 hours on my lap after his walk.. then I took a break and went back to my room for my own nap. We’ve played all evening and are just getting ready for bed.

One more thought, though.. Mail time is quickly becoming our best time of day. Patrick loves opening all of his birthday cards.. Some of the messages and other gifts leave me in tears. We should be moving out of the ICU soon and plan to plaster the walls with them. I’m not sure there will be even an inch of spare space.

I can’t believe that a week ago at this time, Patrick’s team was getting a call that Patrick had been matched with a donor for a long-anticipated transplant. It breaks my heart to consider what the donor family was going through at that moment while we, completely unaware, were putting the finishing touches on Patrick’s birthday present and plans. How quickly life can change.

I’ve shared it before, but this song and video have been in my thoughts often this week as I consider the selfless sacrifice in the midst of devastating loss. https://www.youtube.com/watch?v=J44vAOp1BmM&feature=share

Summer vacation

Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.

Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.

Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.

A practical life mommy school lesson on how to sweep.

And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.

Teddy Bears — B is for Bears, and a teddy bear picnic.

The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall. — Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.

In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond. — Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.

The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page. — I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.

Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.

So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.

Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.

So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.

Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.

Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.

And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time — I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.

Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.” Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?

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

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

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

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

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

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

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

And we’ve all been feeling much better.

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

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

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

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

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

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

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

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

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

Not again!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just like every summer.

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

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

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