Muscle Spasticity – Patrick Hoopes

April and some Easter reflections

Happy April! Don’t you just love April? It is teeming with new life. The trees are in blossom. The tulips opened this weekend. There are little green shoots poking up out of the soil in all of the gardens around my yard. There are birds nesting in the eaves of my house. (No, that’s not necessarily a good thing.)

April and spring also bring us Easter. A celebration of Christ’s victory over death. And spring surrounds us with reminders of the Lord’s power to bring forth life. To turn what appears dead and gone into glorious beauty. It as if all of nature is shouting the promise of renewed life.

April is also national Donate Life month. This year, with our family’s transplant journey fresh in my mind, I can’t help but see lessons about Easter and Christ’s atonement in it. I thought perhaps I would share some of those thoughts with you.

Restoration

In the Book of Mormon, a prophet named Alma describes the resurrection in these terms.

The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame. – Book of Mormon, Alma 40:23

I used to say that I looked forward to the resurrection because Patrick and I were going to have a week-long feast. With a perfect body, I want him to be able to taste every wonderful thing that he has missed experiencing in this life. I never imagined that to be even remotely possible in this life.

And yet, since transplant, Patrick is getting to do just that. He is finally able to begin to experience some of those things. It is incomplete. Allergies and diet restrictions and motor deficits from his brain injury still limit him. And we will still need to have our feast.

Transplant is not a perfect restoration. In fact, an x-ray or ultrasound of Patrick’s belly would reveal an anatomy that looks more like a jury-rigged mess. But it is the closest approximation that I know of in this life. Transplant takes what is broken or missing and puts things back to their “proper” frame.

And seeing what a transformation this human attempt at restoration can bring, I look forward with joyful anticipation to a day when not even a hair is missing, let alone major organs. When everything is made right. When little eyes can focus to read without effort. When words don’t get stuck in formation. When little legs can run without weakness. When everything is made whole and perfect again.

Resurrection

There is one part of transplant that I have a hard time understanding. When Patrick was 9 months old, his heart stopped. In essence, he died in my arms. For 2 weeks afterwards, we came back to our house every night not knowing if he would survive. I was destroyed. I had not understood until that time the literal physical ache of grief that accompanies the loss of a child.

Yet somehow, in the midst of that grief, another family found in the midst of that grief the compassion to give the gift of life to mine. Before transplant, Patrick was terminal. We didn’t talk about how very real that possibility was because we didn’t want it to get in the way of his living the life he had. But we knew. We had made plans and were preparing to one day have to let him go.

With transplant came something different. A hope of a full and long life. A gift that rose out of the grief of loss and death. And, in a very real way, Patrick’s donor also lives on in him.

Again, from the prophet Alma:

And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. – Book of Mormon, Alma 7:12

Our Savior voluntarily laid down his life. He suffered pain and sorrow so great he bled from every pore. He hung and he suffered and he died. For us. His mother and his friends wept as they watched him die. They laid him in a tomb and they went home mourning. They wondered how and if they would be able to go on. And all of it. For us.

And on the third day, the returned to find the tomb empty. Because Jesus had risen. For us. He overcame death. And because he rose, we will rise. And death is not forever. Loss and sorrow and separation need not last forever. Because of Him.

I see in transplant a whisper of this promise. It is possible to conquer death. And I know that Christ has conquered death and that my son, if he dies, will live again. And so will his donor.

O death, where is thy sting? O grave, where is thy victory? – 1 Corinthians 15:55

Weakness

If you are a medical nerd like me with an interest in transplant, I highly recommend that you sometime read the autobiography of Thomas Starzl, the inventor of transplant. It is called The Puzzle People and it is fascinating to read the journey, the determination, the trial and constant failure that led to this amazing medical breakthrough. It was an amazing confirmation to me that God inspires science and discovery and he leads human beings to be able to master the eternal laws that govern the world we live in.

I’ve learned that in science there are also important eternal lessons. And in transplant, there is an important lesson taught about weakness.

You see, in his early experiments, Dr. Starzl found that he had mastered the surgical technique of transplantation. And yet he struggled as recipients rejected the life-saving organs because they were foreign and seen by the immune system as a threat.

Transplantation did not move from the realm of science fiction into medical science until Dr. Starzl discovered how to use immunosuppression to weaken the body’s defenses enough to accept the transplanted organ. Transplant of larger, more complex organs wasn’t possible until the discovery of a drug called FK506, better known as Prograf, that could weaken the body’s natural immune response enough to protect the transplanted graft. The reason that intestinal transplant is so new and so rare is that the intestine is so large and so intertwined with the body’s immune system that it took such a high degree of immunosuppressive therapy.

In layman’s terms, in order for the body to accept a change as large as transplant, it first had to be made weak. Weak enough to be susceptible to infection and illness.

For the week following transplant, Patrick stayed in the ICU so that he could be given a drug that completely wiped out his immune system. It removed it so completely that they then prescribed him a year of antibiotics, antivirals, and isolation in order to try to protect him. All of his defenses were removed. Because that is the only way to prevent his body from immediately rejecting the gift he had been given.

The apostle Paul wrote about an unnamed affliction that plagued him for years. He frequently prayed and asked for this “thorn in his side” to be removed. And yet, it never was. After much time and certainly much struggle, he recorded the Lord’s response to his pleas.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. – 2 Corinthians 12:9-10

Sometimes, the Lord gives us strength through weakness. Sometimes he leaves us with a thorn in our side, with prayers that seem unanswered, with trials that seem neverending. He does it because sometimes the only way for us to be prepared to receive His gifts.

But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

All we like sheep have gone astray; we have turned every one to his own way; and the Lord hath laid on him the iniquity of us all. – Isaiah 53:5-6

Christ atoned for the sins of the world, taking upon him every sin and sorrow and transgression. But what good is that gift if we, thinking our own defenses are strong enough, reject His grace. Sometimes, it takes weakness first for God to work the change in us that will make us strong. Not all healing is painless.

I am so grateful for Jesus Christ. For His resurrection. For His atonement. For His grace and for His love. I know He lives.

I see reminders of His gifts and His promise of life all around me. In the tulips and the tree blossoms. In tender shoots in garden beds. In the sparrows. And especially in my son.

We are doing well. Patrick’s responded well to the antibiotics he was started on last week. His liver numbers are normal again. We are still giving IV antibiotics. Therefore we are sleepy. But we are happy. And we are healthy. We had a great Easter full of bunnies and feasting and magnificent sermons. This life is not always easy, but it is good. We are blessed.

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.

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?

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.

Baby steps

I mentioned a while back that we were taking Patrick to see a doctor who specialized in rehabilitation and development. It’s about time I write about it.

The appointment went a lot more positively than I’d expected. I went in half expecting for her to see the muscle tone in Patrick’s foot and decide it was time for dramatic action. Patrick’s physical therapist had suggested botox injections and casting, and I was afraid that that was the next step.

I was so nervous, in fact, that I had Brian come along with me. That wasn’t the sort of decision I wanted to make alone. And he was kind enough to take the whole day off, which was an extra special treat.

They make you feel out a history every time you go into this office, including a list of everything that’s changed in the last 6 months since you were seen. This can be quite the task to list everything and I often just write blanket statements like “typical to short gut” so I don’t have to fill in all the hospitalizations, diet changes, etc.

The good thing about this form, though, is that it gives the doctor an idea of where to start, so she came in and right away said, “So why do you think he’s having problems with his foot?” We stripped Patrick down so she could see his muscles as he walked and then we had him walk back and forth between us. We also talked about the developmental lag I’ve seen on his right side versus his left. She watched the way he hold his hands when relaxed. She stretched his muscles to see how they move.

In the end, we didn’t decide anything new… but she confirmed a lot of things I’ve suspected. Basically, it looks as though there was some degree of brain damage caused by Patrick’s cardiac arrest. This isn’t a surprise. They did CPR for 15 minutes, which means that for 15 minutes, he didn’t have a good supply of oxygen to his brain. In fact, everyone’s always amazed at just how well he IS doing in spite of that.

This doctor, even telling me that there seems to have been damage, still calls him a miracle and says that he is far, far healthier than his medical history would predict.

The official diagnosis she gave is “dystonia”… which basically means “irregular muscle tone.” In layman’s terms, it means that his brain sends the message to move the muscle, but the message gets garbled somewhere along the way. The message the foot get tells the muscles to flex harder than they should or in the wrong direction. The faster he tries to go, the more the signal gets confused and the more unpredictable the movements.

She said to just keep working with him. She said that these muscle tone issues could vary in how much they affect him as he grows and the muscles relax or get tighter. In the future, they might still recommend injections of botox into the muscles to weaken them so he can have better control of them. But that’s not for now.

For now, we’ll continue to do what we’ve been doing. We’ll keep a brace on his foot and we’ll do stretches every morning and night. We’ll keep encouraging him to walk wherever he goes and we’ll hope that, like the rest of his right side movements, he’ll get better with practice so that you don’t even notice a difference unless you know what you’re watching for.

It’s a relief to have my suspicions confirmed and plan of action approved. For the past year I’ve been telling therapists that I suspected something was wrong. It’s only been since we started working on walking with his newest PT that it’s been clear that something actually was wrong.

It’s discouraging, though, too to know that he’s going to have this battle ahead of him. He’s young enough that his brain is very “plastic”, very adaptable and it is possible for him to overcome most of the effects of this… But it’s going to require a lot more effort from him and from me to learn to do those basic things.

Still, he’s making amazing progress with his “boot”. He spent 15 minutes yesterday walking 6 feet between his therapist and myself. Then, he spent most of the evening walking across my mother’s living room. He lets go when he’s playing next to furniture. He refuses to have two hands held while he walks. He is getting faster and steadier and braver. He’ll be walking in no time.

This Boot is Made for Walkin’

It’s been a few weeks now since Patrick got his brace, or as we call it, his “boot.” His therapist used this word the day she fitted him, and Patrick took to it. He sees me with his brace in hand and starts reaching and begging, “boo, boo, boo!”

It was hard getting used to the brace. For the first week, even an hour of wear had him grumpy, tired, and irritable. Daily stretches were the worst, as they worked the muscles that were already sore. I just kept pushing through knowing that things were supposed to get better with time.

The other awkward new adjustment was shoes. Patrick currently wears a size 5 1/2 .But, the brace measures a 7 1/2 in length, and when you allow for the bulky straps on the side, it takes an 8 to get over the brace. Obviously a size 8 shoe is too long for his foot and this difference made him seem a bit lopsided while he was getting used to it.

I really want to get over to Nordstrom, who have a “mismatched shoes” program and employees who are actually trained to help fit shoes, instead of just measure feet. Shopping for a spare shoe at Payless the day we picked up Patrick’s brace was frustrating and traumatic. I’ll forever pity the poor teenage associate tasked to wait on us.

But I digress.

Patrick has since made a wonderful adjustment to the brace. He even knows how to help me more easily get it on, if he’s not distracted with something else.

It helps. No longer does his little foot betray him at random, popping up or turning in and making him fall. He doesn’t veer into the wall every 5th step while walking halls in therapy any more. (It takes more like 40 steps.)

He’s getting brave enough to walk more and more. He takes several steps between his daddy and me (or other adults he trusts.) He forgets sometimes that he doesn’t want me to see him stand, and lets go to play with a toy. I’ve even caught him walking along the edge of the couch without holding on – just reaching out and touching every few steps to assure he’s got his balance.

http://www.facebook.com/v/1414060071041

There is still improvement to be made. At least once an hour his heel still pops up inside the brace – quite a feat, considering how much there is holding it down. Only then it gets stuck. I’ve learned that if he’s crying and begging for my help, it’s probably his foot.

His foot does still turn in a bit, too.. or I should say that his leg does from the hip.

We’re meeting with his rehabilitationalist today to talk about whether or not we need to take more action than just the brace.

But for now, my little munchkin is happily practicing walking. We walk everywhere. I’ve learned to allow extra time for such adventures. For example, we spent an hour picking up 3 items in the grocery store so that he could push the cart. We arrive, when possible, 15 minutes or more early to appointments so that he can hold my hand and walk inside. And we take walks around the yard and neighborhood.

These last take the most time because for the first time, Patrick can explore the things he’s been looking at for 2 years on his walks so we have to stop often to let him touch the fences and flowers and rocks along the way. I don’t mind. He’s earned it.

Therapy update

Just a quick update, for those who want to know. We saw Patrick’s physical therapist this morning. I was hoping she’d be pleased by what she saw, and she was. This is good news. It means he doesn’t need a brace quite yet.

After a week of twice daily stretches, Patrick is beginning to put his right heel down when he walks. When he’s going slowly and deliberately, he can do it almost every time. When he tries to go fast, it’s back up onto his toe and he starts to trip and veer to the left.

The therapist says this means that it’s almost certainly a matter of tone. For whatever reason, the muscles in that foot are pulled tight. When he thinks and controls it, he’s able to get them to stretch into ways that allow him to walk. When he goes fast, he can’t control it and the foot is pulled up and in.

So for the forseeable future, we’ll keep doing exercises to stretch out the muscles so that he doesn’t have to fight as hard to control them. Kinda like how you stretch out a balloon before you blow into it. The more we stretch, the more flexible the muscles will be.

He still loves walking, though! All day long I wander around putting walking toys in positions so that he can find them and push them across the room. Last night, we went out for a walk around the sidewalks in front of our house. For the first time, I didn’t take a harness to hold on to and he tripped and fell a few times, but most of the time got up and kept walking. Now we’ll just hope he’ll keep trusting me.

And when he does start walking, I’ll probably be sorry that I pushed so hard for this. After all, right now I spend all my time following him around and putting things back that he pulled down or out. Walking just means he’ll be quicker in his path of destruction.

Walking . . . Well, almost

When I started Patrick in heavy duty physical therapy 3 months ago, he was crawling like a wounded soldier.. on his belly with one leg dragging. The goal we set then was for him to be able to stand and walk. Last week, it’s like the little lightbulb flicked on and he’s brave enough to be putting some serious effort into learning to walk.

It started when he found a toddler walker (the medical kind) in the physical therapy office. His therapist pulled it out so he could play with it. Before we knew it, he’d made a successful lap around the hallway in the clinic. When we got home, all he wanted to do was stand and walk around the furniture.

The next day, I weighed down his little cart from Ikea with 10 lbs of flour and away he went.. Walking the cart across the room with me holding onto him by his harness to keep him from falling. Before long, I decided the space was too small, so we went outside. He pushed his little Ikea cart with me holding onto him for balance all the way from my house to the school parking lot behind us.. We sat down and rested after a couple of laps in the parking lot. I thought he’d quit when he saw our house, but no.. he kept going 3 houses the other direction before sitting down to rest, then getting up and trying to take the cart back home. It was at least half an hour of walking and about half a block.

The next night, he saw his cart standing there again, climbed up and pushed it across the room all on his own. The first several tries he leaned too far into it and had to basically run to keep up, but with some practice, he was soon able to control his speed a bit.

He still has a ways to go. His little cart tends to veer to the left and Brian pointed out that he seemed not to be taking as good of steps with his right leg. He walks on his toe and kind of turns his foot inward to take a step.

I pointed this out to his physical therapist yesterday. We talked about some of the possible causes. (Effects of the cardiac arrest, sensory issues, or the scar tissue). I remembered kind of out of the blue being told that the deep wound caused by an IV infiltrating the vein in his ankle when he was a month old could cause problems with walking. (This kind of out-of-the-blue-but-makes-sense memory I sometimes think is the Lord pointing us in the right direction.) In the end, the therapist explained that knowing the cause doesn’t change the treatment.

She did some evaluation exercises and found that he has limited range of motion in the foot, leg and hip. Now I have exercises to do with him at least twice a day to help stretch the muscles. We hope that this will improve things, but if not, she may order a brace for him to wear while he’s learning to walk to help correct the position.

Knowing this as he first starts walking is a HUGE blessing! We can make a minor adjustment now that will help him down the road. This is exactly why I have him in so much therapy right now.. So that we catch these little things that are results of his illness while they’re easy to correct.

This was a good reminder to get this week as I added occupational and music therapy this week and am trying to decide if I proceed with a feeding therapist as well. As if I weren’t already busy. The occupational therapy has made a difference, though, after just one visit. See, we think Patrick might be “sensory seeking”. In other words, he craves big physical input. The therapist has taught me some techniques to use to fulfill that craving, leaving his brain and body free to focus on other things.. Like walking or looking at books or learning new ways to play with toys.

It’s a little thing, but I think I’ve seen improvements. He sat next to me on the bench in church on Sunday and just looked at a book for a good 15 minutes. This is remarkably unwiggly for him.

And so, we keep plugging along.. doing all we can to keep Patrick learning and growing now with every moment he feels well enough to do so. I’d really like him to be walking before his transplant. I think that if he’s not walking when he goes in, that it will take him a long time to get well and strong enough to get back to where he is now. So if we have to walk to the school and back every day to accomplish that goal, that’s what we’ll do. He doesn’t mind the walk, especially now that school’s out so he can walk to the playground and slide on the slide.