It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.
I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.
Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.
BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.
Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.
Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.
So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.
The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.
And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.
I am exhausted and I hurt everywhere. And there is so much still to do.
That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?
I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.
Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.
And, well, one came back positive.
As it turns out, I have rheumatoid arthritis.
Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.
RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.
The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.
So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.
It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.
On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.
And I’m thankfully so very busy with the move that I can’t really think too much about it right now.
It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.
The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.
On the first day of March, I sat in the 3rd grade classroom where I volunteer and I listened to the teacher, Mrs. H., explain to the children that March is either lion or lamb. I had been thinking it, too. We all have heard it. “March comes in like a lion and goes out like a lamb.” We made crafts about it in school. Only Mrs. H. proposed a different idea. Whichever way comes March comes in, it goes out the opposite way. And that particular first day of March, despite a cold wind, was overall quite warm and sunny. She told the children to watch and see if March would go out like a lion.
I saw a lot of lions and lambs in the last few weeks of March this year. The spring equinox was early this year, and so also was Easter. For school schedules, that meant that spring break came earlier than usual this year, too. In some ways, it was just on time for our family.
March started out a little harder for Patrick. And very busy with work and other responsibilities for Brian. Our lemon of a Jeep misbehaved one too many times for our taste. Actually, its radiator literally blew up, revealing another potentially time-consuming and costly repair. And so we decided it was time to buy a new car. That’s great news. And a lot of fun.
Unless… you happen to have an uncontrollable obsession with cars. Shopping for, purchasing, and then adjusting to a new car proved exceptionally difficult for Patrick and led to him being unable to concentrate at home or even at school.
Brian’s work got especially busy right around that time, too. He crammed a business trip, some off-site planning meetings, and 3 middle of the night system upgrades into a period of about 2 weeks. All while fighting a monster of a cold.
Bike riding around Willow Pond
And so when spring break rolled around, I think we all found ourselves more than grateful for the opportunity to escape. Brian saw the long school break on the schedule and decided to treat our family to a vacation. And, as we really only know how to really relax in one place, off to Disneyland we went.
It was a great trip, honestly. With the newfound attention-span Patrick’s medications have given him, he’s started to enjoy feature-length movies of late. And his favorite of all is Cars. He recognizes scenes in the movie from his trips to Disneyland (instead of the other way around, which is priceless.) And so was extremely excited to get to visit Radiator Springs, eat in Flo’s Diner, dance with Luigi’s cousins, and meet all of his friends in person.
We crammed as many rides into our trip as possible. We splurged on a character dining dinner the night we arrived. Patrick loved having mac & cheese pizza, mashed potatoes, corn on the cob, an a bowl of M&M’s while being visited by his favorite characters. Pluto even let him feed him. As a bonus, we then skipped meeting characters this time around, allowing time for extra rides instead. We stayed in a hotel with a pool and went swimming as a family for the first time since Patrick had his line removed. We watched firework on our walk back to the hotel every night. We didn’t sleep enough at night, but enjoyed early mornings in the park. It was a fun trip.
We came home on Saturday afternoon to give ourselves time to get ready for Easter the next morning.
Oh, what a time for the message of Easter for me. While we were in Disneyland, two babies were born in my family. I have a new niece and nephew. Born just a day apart. So before Patrick returned to school, we went and met the new babies.
He doted on them. Patrick loves babies. He kept asking me if he could bring them home. He hugged them too tight. He kissed them. And he promised them he’d be their friend forever. Oh, how he made my heart ache to let there be a baby in our house.
And, oh how he reminded me that it is anything but possible right now. In all his loving attention, he has no idea how strong he is, how fragile they are. And he just can’t understand that they can’t get up and play or eat or talk the way other people can. So thank goodness for baby cousins right now. Because we need babies in our life, even when we can’t have them in our home.
So in the mornings, I kissed and cuddled babies. In stark contrast, in the evening, I said goodbye to a dear friend.
One of the wonderful things about my church is an organization called the Relief Society. Everwhere the church is, the women of the church are gathered together in this organization. And it doesn’t matter how different you may be in age, background, culture, or wealth.. you are sisters. The neighborhood I live in was built new just long ago that many of the people who built the homes originally are reaching the ends of their lives. And so you’d think I’d get used to having to say goodbye to these sisters from time to time.
But sometimes they work their way into your hearts a little more. This friend and I loved many of the same things, despite differences in age. She was a teacher and invited me to translate in her classroom. She was a musician and loved to invite me to sing, and then push my abilities with difficult songs. She was one of Patrick’s biggest fans. And although I’ve known for a couple of months that she had been diagnosed with a terminal illness and that her death was quite merciful, still I think this is one goodbye that will stick with me for a while.
Especially because of timing. In the week after Easter, I greeted two new babies and attended a funeral. In fact, the day of the funeral, I spent the afternoon with Patrick at the 10th birthday party of a classmate. What an interesting sampling of milestones. To see the bookends of life so close together has made me think about the volumes inbetween them.
When I was in high school, we had to memorize a soliloquy from Macbeth. With his castle under attack and everything falling around him, Macbeth receives word that his wife has died. And his reply:
“She should have died hereafter; There would have been a time for such a word.
To-morrow, and to-morrow, and to-morrow Creeps in this petty pace from day to day, To the last syllable of recorded time; And all our yesterdays have lighted fools the way to dusty death. Out, out, brief candle.”
I’m not sure exactly why this pessimistic eulogy has been in my mind. Except the knowledge that it is so wrong. Because life is brief, but so much more than “signifying nothing” as Macbeth lamented. In fact, a funeral reminds us that it is, in fact, all the little nothings, all the everyday things. all the tomorrow and yesterdays and todays full of mostly mundane things that add up to what matters.
Because death isn’t the end. It’s not a period. It’s a comma.
Easter celebrates that fact. Because Christ came. Because of his sacrifice. Because he died, and then after 3 days was resurrected, we all will live again.
There is something wonderful to hope for.
However, I feel that being a full-time caregiver is so perfectly captured, though, in the words “tomorrow, and tomorrow and tomorrow creeps forth in this petty pace from day to day.”
I’ve been struggling a bit this month. I have been feeling lost. Invisible. Mundane. I don’t have the hang of this new life. I have more time, but not complete freedom. I’m not fighting for survival every day, but there is still a lot of resistance in our lives.
Every day certain things must be done. I clean the house and do laundry and do the dishes. I sweep the crumbs of Patrick’s snacks. I put the toys back in the toybox. I shop and plan and make dinners. I prepare medications by measuring, cutting, crushing, and mixing, and then make sure they are given on schedule. I help with homework. I encourage reading. I dress and undress my son. I remind Patrick how to wash his hair. I bring in the mail. I clean off the kitchen table. Over and over again. Only to need to do it again the next day. Or the next hour. I’ve been kept just a little too busy to dare make time for myself but had just enough free time to fret over it.
I’m struggling to get the courage to take time for myself. I’m so used to abandoning what I need to do to take care of Patrick that even though I have a little bit of time, I am timid about branching out. I don’t trust that I’ll be able to finish what I start. And that then I’ll be upset. The problem is that this is kind of a lonely way to approach life. I’m trying to reach out and reestablish relationships that got pushed aside when I didn’t have time to do anything more than survive each day. But that takes courage, too. And although I may sometimes choose to be outgoing, deep down I’m pretty shy.
But, like you, like most of us, I know the best I can do is get up and try again each morning.
We often compared the life we led with Patrick before transplant to a rollercoaster. Thrilling highs and followed by quick plummets. I’d learned to live with that kind of thrill ride. You just hang on tight.
But in Disneyland this last trip, Patrick discovered a new favorite roller coaster: Goofy’s sky school. Instead of fast ups and downs, this ride is a much more gradual descent. Instead, of hills, it’s full of sharp turns that knock the breath out of you. The track is obscured so you don’t always see it coming. Sometimes that’s what this new version of life feels like. It’s been a year since Patrick’s last hospital admission. That is ASTOUNDING to me! It’s been a year since we had to drop everything because he was suddenly fighting to survive.
Let me tell you a bit about what the ride is like these days. It’s gentler, for sure, but it’s no “It’s a Small World” cruise.
Geared up for a snowshoeing field trip at school. Couldn’t ever get him to look at the camera with eyes open.
Patrick’s been struggling with behavior at home and at school. And every note home or call home has left me feeling helpless because, unlike problems with his health that had prescribed medical solutions, this isn’t straight forward. They turn to me for answers and I don’t have them.
He’s doing ok. We’ve been experimenting with changes in his medication and the changes are helping. He is doing better. But the transition has been tricky. And I don’t know if it’s been that, or illness, or hayfever, or growing, or something else but he has been tired and grumpy and not himself. Medicine is more practice than science and when it comes to brain injury, that’s especially frustrating.
We increased his dose of clonidine to see if we could help afternoons go better, and he started to need a nap every day. He hates naps. But he can’t function sometimes without one. I even had to check him out of school and bring him home to nap last week.
We’ve talked to his psychiatrist and adjusted that dosing and talked about trying some other things. It seems to be helping. But it still feels helpless.
With time to kill between doctor’s appointments, Patrick and I stopped in at the museum at Fort Douglas
We had a good scare right before spring break. Patrick was knocked off of the playground at school and landed flat on his stomach. It left a bruise where his g-tube hit and so I had to squeeze in an emergency visit with his GI to check to make sure that his graft wasn’t at risk. That’s a possibility with any injury to his abdomen.
Perhaps the most frustrating thing is that out of the blue, his oral aversions have gotten worse. He won’t take his vitamins anymore in the morning. I crush them and mix them in yogurt so they are easier to eat. He sticks his tongue out to block them going in. Or holds them in his mouth and doesn’t swallow. It’s miserable to watch. But they aren’t optional. They’re mandatory. And so we start many days with me pleading with him to do something that he thinks is torture.
He sprained his ankle at the birthday party. He tried climbing onto a bunkbed and fell off. Patrick’s never really had this kind of injury. With his cerebral palsy, he was especially unsteady limping. He also isn’t used to regular illnesses or injuries still, so he was extremely afraid. Asking him to do what little might help.. Elevation, ice, rest. That only scared him more. He needed extra help getting around, getting dressed, bathing, etc. Thank goodness it was conference weekend so it was ok for him to stay home. He’s spent a few days inside at recess at school. But thankfully he’s healing. He’s limping, but can jump and run and stomp while limping.
Breakfast in the waiting room at the Eccles Outpatient Building
I’m grateful to have had a couple of weeks of bookends. A couple of weeks of being shown things to make me think about what I’m putting inbetween. And a reminder that there are often many volumes in our life. We’re put away the one called “Ultra Short Bowel Syndrome” and are nearly done with another called “Transplant Recovery” but this latest volume of “First grade” has certainly had some unexpected plot twists.
I’m sometimes tempted to pen, like Shakespeare, that tomorrow and tomorrow and tomorrow just keep creeping at their petty pace. But that feeling is only a page in the story.
I heard a talk this weekend that’s helping my sentiments for tomorrow. It was shared in the semiannual general conference of the Church of Jesus Christ of Latter-Day Saints this weekend. The speaker was Elder Jeffrey R. Holland, an apostle and a gifted teacher. Here’s a brief summary.
First, he shared this image that kind of sums up how I sometimes feel when I’m headed to bed and thinking about what I need to do the next day.
Then, he gave this counsel about how to proceed.
“If in the days ahead you see not only limitations in those around you but also find elements in your own life that don’t yet measure up… please don’t be cast down in spirit and don’t give up….”
“Please remember tomorrow, and all the days after that, that the Lord blesses those who want to improve, who accept the need for commandments and try to keep them, who cherish Christlike virtues and strive to the best of their ability to acquire them. If you stumble in that pursuit, so does everyone; the Savior is there to help you keep going. . . ”
And then, in contrast to the pessimistic message of Macbeth, Elder Holland gave this beautiful description of the potential for tomorrow.
“If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children!”
Did you read that? Tomorrow=magnificent. Even if we don’t always recognize it as such.
I’ve got a long way to go. I have a lot to learn about patience. And a lot to learn about humility. I’m finding those lessons are taught in the long, flat, tedious prairies. Not on the peaks.
It snowed the last two days of March. I had to scrape ice off of my car on the last day of spring break. Mrs. H was right. March came in like a lamb and went out like a lion.
It wasn’t an easy month. And April has started out with it’s own measure of sound and fury. We have more milestones: another funeral and a wedding ahead this week. And will still start each and every day with a yucky vitamin.
Snow on spring break of course means a kids meal at Arby’s in your PJ’s
But I’m trying remember Elder Holland’s words:
“So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”
Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.
It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.
Back to school shopping – breakfast date a Dunkin Donuts
I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.
We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.
He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.
And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.
I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.
He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)
On Patrick’s 3rd day of school, some kids dropped a box labeled “bomb” on the front porch. The school put the kids in lockdown and the school was swarmed with emergency vehicles. Everyone was ok. I watched from across the street at my grandpa’s.
But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.
After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.
After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.
So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.
They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.
One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.
The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.
I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.
We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.
The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.
We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.
We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.
Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.
Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.
He doesn’t get much rest, but when he does, he crashes these days.
As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.
I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)
Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.
I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)
Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it. I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.
A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.
But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.
I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.
I think for the next little while, we’ll be building our normal week by week. Some things are routine. A lot is just made up. Most of the time, it feels like we’re flying by the seat of our pants, but every once in a while, we strike gold and I know that I got being a mom right that day. I wish more days were like that.
Patrick’s doing well back at school. Waiting to go in the morning is really hard. He gets up excited to go to school and then we try to fill the mornings. When we have our act together, we will do something before we leave. Work on homework. Visit the library. I’ve learned it helps to go early enough to let him get some wiggles out before school so we usually try to get 15 minutes to half an hour at the park that’s next to the school.
Where I spend the mornings when Patrick is in school
I’m enjoying a brief little bit of respite while Patrick is at school. One of this teachers pointed out a quiet little walking track near the school. So I drop Patrick off and then go walking. You know that mom who stays in her exercise clothes all day long? Shops in yoga pants? Picks up her kid with a messy ponytail and no makeup? Unshowered. Long into the afternoon? Yeah.. I’m that mom right now. But it is SO NICE to be able to exercise and this is the way I am doing it.
After walking, I’ll sit down in the far corner of this beautiful little grassy, shady park where i walk and read my scriptures. I love that the ladybugs are my study buddies.
An hour goes pretty quickly. But it is very nice to have this little bit of time for quiet reflection. Especially because, as happy as it makes him, going back to school has been hard for Patrick.
I was thinking that somehow transplant had magically relieved him of his sensory processing disorder. No. It turns out that it was just being able to be home and unstructured. Keeping it together enough to follow the rules and sit still and be attentive at school takes enough of Patrick’s energy that, even though it’s only one hour, when I pick him up he is wound up like you wouldn’t believe. It takes a good hour for him to settle down again.
His temper is hot again – fueled by steroids that I’d hoped might not be necessary in this high of doses by now. And we spend a lot more time trying to cool down when angry.
The days that are golden we manage to fit in something magical like an hour of practicing reading early reader books at the library or sitting down together to practice writing or have lunch at the park. Patrick’s quickly taking to the idea of kids meals and is trying just about any sandwich I deliver packaged in that form. He devoured an Arby’s roast beef sandwich, though at home he has sworn up and down to me that sliced roast beef is “too brown.”
At least once a week, we try to stay late after school at the park. One or more of the kids from class will stay after school to play. His classmates really do love him and try to include him. I heard one boy tell a friend, “I can’t leave Patrick to play with you. He has been away and is lonely. You can play with us. But I want to play with Patrick.” Big words and big heart from a kindergartener.
My mother’s day flowers
We have enjoyed a brief break from the rain and that’s had us spending afternoons outside. I asked Brian for flowers for the garden for mother’s day. He spoiled me by taking me to the greenhouse and letting me pick out flowers to my heart’s desire. So I’ve been planting all week. Patrick still struggles with this because he’s not supposed to garden in this first year and feels left out of an activity he loved. So we try to do it in small portions.
However, it did get him outside and, though he protested a lot the first day, after that he started asking me if I’d go plant flowers so he could play in the yard.
Speaking of Mother’s day.. I had such a peaceful day. Weekend, actually. Brian spoiled me all weekend, taking me out for breakfast and dinner at favorite restaurants on Saturday, and then cooking for me on Sunday. We opted to stay home, which made for a quiet and peaceful day.
I was invited to speak in church that day. That’s a nervewracking assignment for a woman who has a history of infertility and adoption and raising a child with chronic, terminal illness. Womanhood and motherhood have NOT gone the way I expected and I used to cry through and try to avoid church on mother’s day.
However, spending my walking time in the week before mother’s day studying messages about womanhood and motherhood and God’s love really can help to build up your sense of self-worth. After all that we have been through this past year, I’ve wiped away most of my expectations. Without expectations, it is hard to be disappointed. Instead, I spent most of the day just feeling grateful. Grateful for the lessons I’ve learned. Grateful for another year with Patrick. Grateful for relative peace.
I needed that little recharge. Because not every day is full of peace and gratitude. Not every day do I get motherhood golden. I’m still learning to juggle time and responsibility, fostering independence and giving loving attention.
The end of this week ended up tricky. Wednesday night, late, I got a message from Patrick’s teacher saying a stomach bug was working its way through the classroom. Brian and I talked about it and decided to give Patrick a choice of whether he wanted to wear a mask and gloves and go to class or check out early with me.
The first day, he opted to check out early. We had a golden mommy day that day where I made up for missed school time by working with him on reading.
The next day, he chose to wear his mask. That day didn’t go as smoothly. He came home riled up and didn’t want to nap and decided to avoid it by being extra naughty so I’d need to stop him and/or put him in time out. A rainstorm came in that night and I can’t help but wonder if the change in barometer hurts him and he just doesn’t know how to express it. I mean, I ache from tiny little injuries. He had his whole digestive system removed and replaced.
And so we go. Day by day. Week by week. Making this up as we go along.
I told a friend on Sunday that it feels somewhat as if my life was erased when Patrick got his transplant. We’re trying to piece it back together a little at a time. I’m trying to get the most important things back in first. There is a sort of peace in that simplicity. Some days I get the parts in wrong and the gears get jammed. Other days, they fit and we work like a well-oiled machine. Most days, a little of both happens.
Hope you’ve enjoyed pictures from one of our well-oiled days. We surprised Patrick with a trip to member’s night at the zoo. He’s been asking since Brian and I went on our last date if we’d take him on a playdate, too. When we pulled into the zoo parking lot, his face lit up. Bonus that the summer dinosaur display was already up.
Two weeks ago, my youngest brother got married. Brian and Patrick didn’t stay long, partly to protect Patrick’s immune system and partly because Patrick gets horribly bored at long wedding receptions. But I stayed behind at the reception. It was wonderful to catch up with family and friends that I only see when big events bring us together.
It was also a little strange to discover that so many of you read my blog, even though we haven’t talked in ages.
And there was something said to me by one of the women I’ve known and respected forever that’s been sitting a little funny with me that I’d like to address. She said how glad she was that we were home, especially as my blog had made it sound like we were living in “less desirable” circumstances.
This struck me funny because, although I really struggled with the loss of comforts of home at the Ronald McDonald House and the awkwardness of living in close quarters with other families day in and day out.. my memories of the Ronald McDonald House are overall very fond memories and I’m afraid I didn’t do the place and the people justice in what I wrote.
Patrick and Ronald last December
This week, a video was shared on Facebook of one of the families that we got to know while we were there who hold a very special place in my heart. They were there seeking the same miracle central line placement Patrick had needed to be listed for transplant and that mom and I bonded in a way few can over shared trauma. I don’t think to can understand how terrifying and desperate that end-of-the-road, hail mary, do or (literally) die situation really is. The video talked about how wonderful her son was doing and about how the Ronald McDonald House had helped her family. I thought it was good news and I wanted to rejoice.
The next day I learned that the video had, in fact, been shared in tribute. Instead of good news, the worst had happened. Lost central line access had put her son at the top of the transplant list. In the short time since we’d left the house, he’d received “the” call and gone for transplant. But something went wrong in surgery and he never woke up. He passed away this week.
We made a very calculated choice to stay at the Ronald McDonald House. Yes, there were financial benefits and proximity benefits. Yes, there were difficulties and uncomfortable parts, too. But we knew that being there meant the ability to share our journey with other people who’d get it.
I can’t describe the connection we have to the other families who lived long-term with us in that house. I learned how to be a transplant mom from them. We helped each other in every way we could. Cooking together. Doing each other’s laundry. Crying together. Celebrating together. They are part of my heart and having them now spread across the country facing these trials without being close to lean on each other for daily support is hard.
The truth is that doing this at home would have been much MUCH harder. During all those months away, the people who loved us back home would often say, “We wish you were here at home so we could take care of you.” It happened so often that I almost expected to have to set up a visitation schedule to slow the flow of friends and family through our front door.
But the reality is that coming home has been very lonely. Because we can’t go out, we probably see less of the people we love here at home than we ever did before. I don’t want to sound ungrateful. A lot of you have caught us in the halls at church to express your love and many of you have offered help in the way of meals or help cleaning. But it is easy to forget that left at home is a very social 6 year old. I often feel like Brian and I are his only friends. And finding the balance between taking care of my own responsibilities and making sure he has time every day where he is shown how very loved and important he is has proven to be a challenge.
Besides that, it is hard to imagine the kind of life we live unless you experience it. Everything we do has to take into consideration how and by whom Patrick will be taken care of. We don’t just go to work or to dinner or to church. We can’t just call up a friend and say “let’s get together.” We skip most extracurricular events. We don’t get to be apart for school. And when Brian travels this summer, I will be the only wife staying home.
When we DO catch you in the halls or on the street somewhere, we are having a conversation that we know is going to be very brief and so we know there is a choice between trying to take time to answer questions about Patrick and sharing our lives honestly and sincerely wanting to spend time hearing about and catching up with YOU. We don’t want every adult conversation we have to be consumed with medical updates, and so we may skim or skip over details. One friend accused me of trying to hide how I’m really struggling. I’m not trying to hide anything. I just don’t want to waste our conversation.
You won’t read as often about the things that made me cry on this blog right now. We have a different set of frustrations here at home. I don’t want to put in print the experiences where someone I love might have innocently hurt my feelings. I know that hurt feelings have much more blame in the person feeling them. I’ve learned over the years that people are trying to say things that are supportive and helpful and if I look between the lines I see and hear and feel love.
Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.
But there is one thing I have encountered a few times that I’d like to talk about because it is hurting and I don’t think you know.
I’d like to ask you to stop trying to find my silver linings and rainbows.
There was a marvelous sermon given in LDS General Conference a year ago. If you’re facing hard times, and let’s face it, who isn’t?, I highly recommend that you read this talk in its entirely. You’ll find it here. In it, President Dieter F. Uctdorf said:
We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?
It took me a lot of years of hard trials to learn that happiness is not something that comes to us after trials have passed. Happiness comes from learning to be grateful for our blessings right now. It comes from learning to see God’s hand in our lives. Right. Now.
That doesn’t mean that if you are struggling, if you are mourning, if you are going through hard times right now that you are ungrateful, unfaithful, or unhappy.
It has been a hard couple of weeks. We took a gamble and took Patrick out a little more than usual two weeks ago and he got sick. Being sick made him frustrated and moody. It meant even more limitations for him, which made him angry. We had a week of daily appointments.. appointments we shouldn’t miss and so we gloved and masked and we still went, which only made him feel worse. In the times inbetween, Patrick expressed his anger by acting out against the only people he had to vent to, his parents. Steroid fueled kindergarten anger is hard to deal with. Add to that the sleepiness caused by antihistimines and the insomnia caused by prograf and a stuffy nose? And monitoring his oxygen saturation periodically while he slept to be sure he was still doing ok. And, well.. you can imagine.
Thankfully, his prograf levels were accidentally low when he got sick and he was able to fight off the illness without needing medical intervention. But just as he got better, Brian caught the cold. He was down for the weekend, and then I got sick, too. Remember, we all spent the winter in fairly sterile settings and so none of us has immunity against this year’s viruses. Well, on the heels of a stressful week with Patrick, my body was fairly weak. I have spent the last few days fairly sick.
And it has rained most of the week. So we have been stuck inside more than usual. And, as Patrick has felt better, his body’s sensory system has been craving movement, so this was not a good week for that.
If you asked me this week how Patrick is doing, I probably would have told you about those things. Because that is what has happened this week and it helps me to talk about my struggles.
That’s the rain in our lives right now. And friends are there to talk about the rainy times, too, right?
However, right now when someone asks me how Patrick is and I mention that we’ve been stir crazy, missing school, easily sick, wondering why we are struggling to hard to set up playdates, lonely, etc., I can almost predict the response. The person I’m talking to will ask me how much longer things will be this way. They’ll point out that Patrick’s almost 6 months post transplant and wonder when his medications will change and his medical team will allow him back in public. They’ll try to show me the end in sight.
I know you mean this well. You don’t like to see us struggling and you hope that relief is coming soon. You want to point out that there’s a rainbow just around the corner or a silver lining in the clouds.
But right now, that isn’t what I need. I need someone to walk with me in the rain. I need you to help remember how much I love my raincoat and umbrella. I need us to look together at how rain makes the earth clean and helps the flowers grow.
In other words, I need you to listen to me about my struggles and maybe try to help me figure out how to get through what needs done this day and this week. And maybe to listen about the good things too.
Because a lot of good things happened in the past 2 weeks. We got set up with Primary Children’s liver transplant team so that now, we have a transplant coordinator who checks Patrick’s labwork and calls me to see how he’s doing and I don’t have to bug his very devoted doctor with every little question and play intermediary with the transplant team in Nebraska.
We also saw Patrick’s rehabilitationist and neurologist this week. They both assured me that, while Patrick’s cerebral palsy and other symptoms of his brain injury aren’t gone, it hasn’t been made worse by all he’s gone through lately. He doesn’t want to wear a brace right now and getting to physical therapy would be difficult. And they both assured me that, given all we have gone through recently, it’s ok for that to be on the back burner right now. They’ll keep watching for trouble. Someday we’ll get back to working on strengthening and stretching and improving his gait so he can run and climb. But for now, I shouldn’t feel guilty for not doing more about it.
Also this week, Patrick and I went to a teacher supply store and bought some math manipulatives. We managed to hold 1-2 hour study sessions every day without major tantrums. Patrick counted and added the new pattern blocks without getting upset with himself or me. And his teacher was really impressed when she came by the progress Patrick has made in reading, writing, and math.
I taught Patrick to ride his scooter. We laid in the grass and watched the clouds.
But I might not get to telling you about those good things that happened right now if you ask me about Patrick’s current struggles, and I answer honestly, and then we spend our brief conversation time talking about what things might be like when the rain stops. I promise, I may be wet and soggy and tired.. but I don’t so much mind the rain. And let’s face it, we’ve got a pretty rainy forecast ahead of us.
Our trials don’t mean that we need all of our responsibilities taken away. Yes, it may take more coordination for me to participate now than it was before I was a mother. But it is also healing to do normal things. I got to go to a youth activity and teach teenagers how to do data entry on vital records used for geneology this week. I had to get a babysitter, make special arrangements for dinner, and work around Patrick’s school schedule. But it felt good to be out among people and sharing my talents. It is nice to be included. I’d like to see you. I might have to suggest a less crowded venue for an outing or we might have our conversation interrupted two dozen times by my 6 year old. My life is messy right now. But I’d like to share it with my friends.
You might even learn something I haven’t posted in this blog. There is a lot I don’t write about.
Good things are on the horizon. Patrick’s 6 months transplant anniversary is coming up this week. A lot of things will hopefully change for the good. We are talking about when and how to go back to school and church. We also know that it isn’t going to be easy for Patrick, who has always struggled with routine and crowds and sitting still, to come back to them after such a long break. So we’ll need to take it slow and it might not seem to go well for a while.
I know that chronic disability is hard to wrap your mind around. Everyone likes happy endings. We like resolution. We pray for and believe in miracles. We don’t like people we love to struggle with hard things for years and decades and lifetimes. And I know that when you think of transplant you think of it as healing, a cure, and end to struggling. And so watching this be a long recovery and lifelong challenge goes against all of that. God promised joy in this life. But He didn’t promise us a life free of sorrow. Quite the opposite, in fact. He promised to refine us, and refining takes fire.
But I promise, it’s ok. We are ok with it. We can be happy in the rain. But rain is best when you’ve got someone to splash in the puddles and share an umbrella with us. I promise, I’ll listen about your storms, too.
I told my friend that there were hard things at the Ronald McDonald House that I sometimes miss it. I miss being surrounded by people who were all facing the same struggles and so able to mourn together. I miss those friends who made the best of hard times with me.
But I think I miss it most because I didn’t feel like I needed to sugar-coat my trials. Because often it isn’t until I say things out loud and see the look of pity on someone’s face that I even realize that it might be pitiable.
President Uchtdorf again:
We can choose to be grateful, no matter what.
This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer.
When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.
So I don’t have much of an update for today. Patrick’s gut is needing more time to recover so feeds are advancing only very slowly. He might make it back off of TPN tonight. We’ll be here till at least Sunday. We are stir crazy and sleepy, but getting by.
But, with all this extra time, I thought I’d take a minute to write one of those blog posts I’ve been meaning to write for a while. Today’s subject: education.
I have a friend who is a high school guidance counselor for at-risk kids. We had a long conversation the other day about how easy it is to give up when life gets hard and how she sees Patrick’s story as an example. Of not giving up. Of trying to stay positive.
I told her I hoped it also could be an example of the value of education. See, one could argue that I sit around in a hospital room or at home most of the day. I am a stay-at-home mom. What good did my expensive and time-consuming college degree in Spanish and Teaching English as a Second Language do me? Couldn’t it be said that bad luck or circumstance or whatever robbed me of opportunity? I’m not climbing any career ladders. In fact, my resume probably is pretty unimpressive right now.
Except, well, that that isn’t the case at all. The very best thing I could have done for my current situation was to get an education.
Today is my mom’s birthday. And I need to give credit to my mother. She taught me by example that an educated and involved stay-at-home mom was of great benefit to her children and to society in general.
I use my education every day. Small examples: yesterday I had the cramped crowded hospital room cleaned in extra detail because I have made friends with the woman who cleans it. We speak in Spanish. I have enough friends in similar circumstances to not take her for granted. And so when I told her I was feeling cramped and cluttered yesterday, she gave me some extra time.
But it’s more than that. Here are some reasons I am grateful for my education.
1. I learned how to learn. Can I tell you how important is to be able to study out a problem by myself? Patrick needs to start a PPI medication to help prevent future ulcers. (Think Pepcid.) When the prescription went to my pharmacy, they called and said the liquid medication wasn’t formulary. (That means in the list of covered prescriptions.) They also said that starting February 1st, no medications in that drug class would be formulary because they are available over the counter.
So, I went online and and I looked up my insurance company’s drug formulary. I found a list of all of the different types of medications that my insurance would cover. I read up on how each different variation might work differently. Then I called the insurance company and explained why the medicine was needed and why nothing in the approved drug formulary would work to treat the risk of ulcers for Patrick right now. I also explained how no over-the-counter options could work for him.
It worked. My case manager took the issue to the decision makers and by the end of the day they had approved coverage for him. Even in spite of the policy change.
The hospital pharmacist paid me a visit the next day, and also paid me a high compliment. She told her students, “She is really good at knowing her prescriptions and coverage. Don’t expect that from other patients.”
The thing is, I wrote a lot of research papers over the years. I learned how to study, understand a new subject, and then put what I learned into a useful argument. (I took a persuasive writing course that has been especially useful.)
2. I can communicate with doctors on their level. I know that doctors don’t mean to talk down to patients. But I can tell you that they do talk differently to patients and caregivers who have an education. If they don’t have to spend time building a really basic understanding, you will be given more opportunities.
Would you believe that they have patients who don’t know how to use measuring spoons? Have to be taught by a nurse. Or who can’t stick to a schedule enough to give certain frequent medications at home. If it seems that we “get away with” doing a lot of treatment at home, it isn’t by coincidence. I am starting with a more solid base.
3. I use my general education all the time. I was a language and humanities girl. I did well in math and science, but didn’t like them. Guess what? I use math and science all the time. I remember sitting in the PICU after Patrick’s cardiac arrest thinking, “Boy I wish I’d paid better attention in biology.” Now I am learning and paying attention to a lot of that. Can you tell me what dose in milligrams a medication is if you’re giving 2 mL of a 15 mg/mL solution? Yup. that’s algebra. Calculating a replacement fluid dose and rate? Multiplication tables in your head. Trying to figure out how much of which foods to give? Gotta understand osmolarity. This humanities major does a lot of math.
4. I know how to use language. Every industry has its jargon. If you talk the talk, you get more respect. You get less than 5 minutes with the doctors for rounds. In that time, they will read off a lot of medical information boiled down into language that makes it quick to communicate what is going on with a patient. Then, you can either spend your time having that translated to you… or, if you speak the language, you can use it to ask your questions and make requests.
I am asked all the time what my medical background is. Guess what? Just Patrick. But I have a good background in latin and greek roots so it doesn’t take long for me to learn words about anatomy or to learn from their roots what different medications do or are made of. I learned this jargon quickly and that means I know how to use it. I never feel like they are talking over my head. And that means I can be a part of the conversation.
What’s more, I’ve had to do a lot of learning how to reword my language to help Patrick’s behavior. Communicating with a child who has cognitive delays, language delays, and behavioral problems is challenging. It takes completely relearning how to use language to get your message across. It took a lot of time having therapists work with me to learn how, but it makes a HUGE difference for all of us.
5. I can teach my son. This last is probably the biggest for me right now. The version of “Free Appropriate Public Education” being offered through homebound education right now is laughable. Earlier this week, for whatever reason, Patrick’s teacher appeared, decided Patrick was unfocused and would like to be doing something else, and he left. If I didn’t know how to teach, Patrick would be completely behind. We spend time every day working on writing and reading and counting. It not only helps pass the time, but is filling in the huge gap left by our current situation. It means I can grab the moments when he is ready to learn and teach, even if that happens at some random hour in the middle of the night.
6. I can help others. Speaking spanish. Knowing how to cook and to sew. Playing the piano. Understanding doctors and short gut. Being able to research and know how an illness is spread and protect others. Knowing how children learn. Understanding computers. Having a strong scriptural foundation for my faith. All of these skills put me in a position to not just survive myself, but to help the people around me, too. No matter where I am.
I don’t mean to sound arrogant in any of this. What I’m trying to say is this… Education is never wasted. Whatever you learn, makes your life better. I am not working in the workforce.. but I use my education every day.
“If a person gains more knowledge and intelligence in this life through his diligence and obedience … , he will have so much the advantage in the world to come” (D&C 130:19).
So if you’re thinking that right now you’ve been dealt a rotten hand and you can’t do anything to make the situation better. If you’re wondering if it is worth trying to excel in the mandatory subjects at school that you just can’t imagine a real life application for. If you’re thinking it would be better to just give up and focus on surviving right now…
It is worth getting an education. I promise. It is.
Now back to the current application of my education… trying to understand how reaching 90 days post transplant and the end of our insurance company’s umbrella transplant pricing contract is going to change how services will be billed.
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.
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.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.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.
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
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?
Since Patrick came into our family, we’ve made several attempts at a vacation… and all in vain. For a while, I superstitiously didn’t even want to say the word, for fear that it would end up with another infection. It seemed that the bigger the plans, the bigger the catastrophe.
But.. several months ago, when Brian’s parents suggested a trip to Yellowstone with his family, we couldn’t resist the chance to make another attempt. We booked a room, cleaned our house, packed our bags. With each step closer, I just kept waiting for the hammer to drop.
On the 5th, Patrick’s line sprung a pinhole sized leak. It wasn’t even visible.. but the line pulled air when I tried to draw back and sprayed when we flushed it. So we ran up to the hospital to have it repaired. All went smoothly, especially for 5 p.m. on a holiday. We even made it to a family dinner, just a little late.
Patrick with line newly repaired modeling some of the sterile gear required.
The next day, just after I connected the TPN to the repaired side of the tubing, Patrick stepped on the tubing. The glue used to repair a central line takes 3 days to fully cure, and the tug from stepping on it was just enough to undo the repair. It set back my packing several hours, but we ran up to the hospital and got the repair done. We were still going to make it, darn it!
I stayed up late packing, then the next morning got up at 7 to drive Brian to work. All day long, I worked to get ready and was stunned to find myself actually loading up the car.
Patrick had an appointment with his GI in the afternoon. The plan was we’d go to the appointment, then pick Brian up from his office, and head north to Yellowstone. I was grinning ear to ear as I left the appointment, knowing we were on the road at last. I was so anxious to go that I even did Patrick’s TPN tubing change in the back seat as Brian drove so we’d get out of town before rush hour.
An hour and a half north of Salt Lake we stopped at a rest stop outside of Malad. Patrick needed a diaper change. As I was taking him out of his carseat, his tubing caught on the buckles. The repair came apart, again.
We had to decide what to do next. It was an hour and a half back to Primary Children’s. Or, it was a little more than that to the hospital in Idaho Falls. I’m not sure what possessed us, but we decided we didn’t want to turn back. We’d gone to great lengths to get a spare repair kit to bring with us, just in case. Surely the repair could be done at another hospital.
So, we made the quick but nervous drive to the hospital, arriving around 8 p.m. Eastern Idaho Regional Medical Center is one of the best hospitals in Idaho. But it is an adult hospital. Which meant an adult waiting room with scary things like chest pains and seizures, broken bones and more. They were kind and willing to help, but got slammed with these difficult cases all at once, so they asked if we’d mind waiting in the waiting room.
Around 10, they finally invited us back to a room. The doctor came in and we tried to explain what was wrong. He seemed a bit stumped about what we were trying to explain about one lumen of a double lumen line being broken. Finally, Brian spoke up and said, “We have a repair kit and know how to do the repair, but we need some supplies and a sterile environment.. and maybe some help.” The doctor agreed to let us do the repair.
The nurses did their best to gather up the extra supplies that we needed. they were a bit different than what I’d seen used, but I knew how to use them. They also offered a nurse to be my assistant as we worked.
The process of repairing a broken line is a simple one, but must be done just right. First, the people doing the work puts on full sterile gear, including mask, gown, and cap. The line is clamped off so it won’t bleed. Then, the line is sterilized. Using sterile scissors, the broken part of the line is cut off. This cut must be perfectly straight. The repair piece is then connected. It has a tiny metal tube inside you slide into the remaining original line. You test to make sure it flushes and draws without leaking, glue the two pieces together, cover the repair with a protective plastic sleeve, then fill that sleeve with a sterile glue to seal the work. It’s delicate, sterile work.. but not really complicated.
Or so I thought.
It was so strange to be gowning up to do this. I was nervous, but pretty confident. I’d seen this done at least a dozen times.. and twice already this week.
Once I started, though, I got scared. Because the line had been repaired (and trimmed) twice in the week already, it was too short to repair just one side. A double lumen line is made of two tubes encased in one that branch out a couple of inches past the insertion point. I had to cut the line where the two tubes were still one.. meaning we had to shut off the TPN for at least 4 hours from when I finished the repair. That added some pressure.
Repairing this section is harder, too, as there are two little metal tubes to fit into the two sides of the double lumen tube. The work was more delicate and the fit was more essential.
As I worked, I felt like a bumbling idiot. I was guiding the repair. The nurse assisting me had never worked on a line repair before, so she had to follow my instructions. Brian was talking me through it, but had to work to keep Patrick restrained. My first cut was a little crooked and leaked when flushed. The second cut fit. I slid the sleeve on and tried to fill it with glue, only to discover that the glue was slippery! I’d seen nurses struggle with this before, but never imagined that that was the problem. I’d insert the needle into the sleeve to fill it with glue and it would slip out of place. I probably spent 10 minutes or more trying to put the glue in.
Finally, it was done. We tested it, dressed it, taped it down as securly as possible, filled the line with heparin so it wouldn’t clot… And the reality sunk in.
My repair seemed really sloppy and if I’d screwed up, we were hundreds of miles from home or anywhere that knew how to fix my mistake. And Patrick’s TPN was shut off… couldn’t be restored until the line was fixed and the glue dried for at least 4 hours!
I kept my calmest face on as they did a quick discharge… then went to the car, buckled Patrick in, gave him a lollipop to keep his blood sugar up.. then sat down and cried as the impact of what I’d just done sank in.
We drove to Rexburg, arriving around midnight. Brian checked us in and we moved the luggage. Patrick loved the hotel room… a suite, so we’d have a fridge for the TPN. He stayed up playing till about 1, when I finally succeeded in singing him to sleep. Then I said some very urgent prayers for help that my feeble attempt would be good enough, and that I would regain a sense of peace and confidence. Then I fell asleep, too.
I dreamed all night of broken lines and taking lifeflight to Utah because I’d made a mistake. At 2:30 it was supposed to be safe to use the line again. I got up flushed it slowly… no leaks. Then I started the TPN. I sat up for the next half hour and checked again.. still no leaks.
In the morning, we all slept in.. exhausted. I’ve never been so grateful for room darkening curtains in my life! Patrick had slept soundly… no whimpering like he does when TPN isn’t running. I pretty well expected to find him soaked in leaked TPN when I got him up, but the dressing was still dry.
The repair held well and is still holding.
We ate breakfast, packed our bags, and got on the road again. I can’t describe the feeling of relief and joy as I watched a very happy, healthy Patrick walking along behind the luggage cart on the way out of the hotel.
We arrived in West Yellowstone early that afternoon. We’d made it!
I’m afraid the stories from the rest of our trip will have to wait for me to write them down in the morning. Needless to say, it was a wonderful week! I am so grateful to a Heavenly Father who understands the importance of small things like finally taking a family vacation and hears and answers prayers to the effect… who helps and guides and sends the Comforter when needed… Who helps to qualify a sometimes awkward, impulsive and anxious mother, with the help of a calm and constant father, to do unimaginable but necessary things – all for the good of her family and child.
Patrick is feeling much, much better now. The infection has been well treated with the medicines he’s getting. He’s stable, happy, and playing. Doesn’t need monitors. Doesn’t need much attention at all, except giving his medications on time. There’s only one thing keeping us here. . .
Because this is the 2nd time in a very short time that Patrick’s had a yeast infection, they wanted to make good and sure that the bug is dead before they put a new line back in. Right now, Patrick has a good “deep line” in his leg. This means that it is in deep enough that they can draw labwork out of it and give better nutrition through it. However, it doesn’t go all the way to his heart, which means that it’s not as likely to get infected – but it’s also not really the safest for taking him home with. He’ll get a new central line on Tuesday and go home as soon as possible afterwards.
So, we spent Mother’s day in the hospital. It was a good day, though very quiet. We got to visit with both Brian’s mother and mine today. Patrick got to get all dressed up and go to church. (Best dressed patient in the hospital today, I’d bet.)
Being here has been a good opportunity for me to reflect on how grateful I am for the many different types of mothers who play a part in our lives. Mothering Patrick is not the kind of job I could do all by myself.
I’m grateful for a mother and mother-in-law who’ve been willing to step up and step in to learn how to provide Patrick’s medical care so that Brian and I can get the occasional night out or so that when I’m exhausted and at my wits end I have somewhere to turn. You may not know what a rare priviledge that is that you have given to us.
We are grateful for our mothers. You prepared us to be Patrick’s parents and you help us each day to do it. I don’t think it’s possible to count the number of prayers, meals, phone calls, visits, crazy projects, and more that you have offered for our little family.
I’m grateful for sisters and a sister-in-law who are also there to help lighten my load when I need it, to fill the fun aunt roles. They are helping to raise some spectacular children, Patrick’s cousins, and him as well.
I’m grateful this week for nurses and CNA’s who have taught me how to do this job, who’ve sat rocking Patrick in the dark so I can catch a few hours’ sleep, who listen when I need to cry or share in small, although sometimes icky, triumphs and who make my day every time we see them because of how much they love my child.
I’m grateful for Patrick’s birthmother. I have no doubt that she loves and is proud of Patrick. I am impressed by her strength. I’m grateful to his birth grandmothers who trusted in their children and loved Patrick. It’s not easy to support a son or daughter considering adoption when you know it means a grandchild will be far away. We are grateful for the love and trust and support they’ve shown in us. We also owe thanks to Patrick’s aunts who helped offer comfort when needed and still are lovingly watching over him. What a blessing it is that he was born into a family who loved him so much.
This mother’s day, thank you to all of you mothers who are there for us. You come in all shapes and sizes.. friends, neighbors, family, and more. I couldn’t do this without you.
Patrick had his quarterly appointment at Seattle Children’s on Thursday. And it was a very good trip in every way.
Because Patrick’s morning med schedule is so complicated right now, I opted to fly out on Wednesday afternoon. Our flight left at about 2 p.m. As usual, it took some effort to get through security and I probably looked insane hauling Patrick, his duffel sized diaper bag, two suitcases, a carseat, and of course, him in his stroller around the airport. But we made the flight without incident. In fact, we landed early and had time to visit and exchange blogs with a very nice woman from the same flight while we waited for our ride.
We stayed with my friend Lindy, her husband Kelly, and her little girl, Lauren. Lauren is 4 months younger than Patrick. They have always gotten along really well and it was fun to let the two of them play. Most of the play consisted of stealing each other’s toys and pacifiers.. but they did spend some time dancing to YouTube videos and there was more than one hug exchanged.
Patrick and Lindy
Thursday were the appointments. It was kind of strange to actually be seen in clinic. This is the first time since Patrick’s evaluation a year ago that we’ve done this visit in clinic instead of inpatient.
They did the usual set of vitals: weight, length, blood pressure. As we finished, another little boy about Patrick’s size came in to be weighed. He had a Broviac line and TPN in a backpack, too. I think this is the first time that I’ve ever met another kid on home TPN. It was kind of strange for me to see.
Our first visit was with Patrick’s dietician. She walked in and her first words were, “This weight looks spectacular! I had to come see if it could be correct!” She remembered meeting a tiny, frail, jaundiced baby last year. To be met by a happy, chunky, energetic (almost to a fault) toddler was a surprise.
She looked at Patrick’s TPN, his labs, and his growth charts. We talked about his current diet and in the end, she said that she was nothing but pleased with what she was seeing. She even said that it’s time to back off a bit on his feeds so that we don’t make him overweight.
It’s been recommended recently by some doctors to try continuous feeds again so I asked her her opinion of it. She told me that it’s pretty common for kids with anatomy similar to Patrick’s to stop continuous feeds after this long. She said that focusing on oral feeding so that Patrick would have an easier time learning to eat after his transplant was her preferred goal.
She also explained that some kids who’ve had problems with hypoglycemia when tiny can outgrow the problem and tolerate breaks from TPN. She watched Patrick attempt a few head dives off the bench we were sitting on and said that she thought it might be good for him to have some untethered time. This is something I’ll discuss more in depth with Patrick’s GI and dietician here. We’ve always been a bit nervous, considering his history.
Looking at books in the waiting room
Next, Patrick’s transplant nurse came in and took copies of his labs and other medical history that I’d brought with me. Then Dr. Reyes, the transplant surgeon joined us.
Again, he was excited to see how much Patrick has grown. He asked me how well he was eating and pooping since his ostomy was taken down. I explained to him all the questions that had been raised last month about whether or not Patrick had an obstruction that needed to be fixed. Then I told him that some of the doctors wondered if he needed another surgery to try to correct the problem.
Dr. Reyes’ reaction was quite direct. He said “No. We’ll get him a transplant. That will fix the problem.” He didn’t think it was a good idea to mess with things when Patrick is otherwise stable and healthy… especially if that reduces the remaining pieces of intestine.
I asked how Patrick’s reaching 10 kilos in weight would affect his candidacy for a transplant. Dr. Reyes said that that was a really big deal for him. This size changes the rules a bit for what he needs in a donor. Before, we’d been told the donor needed to be the same size as him, preferably smaller. Now that he’s bigger, they can reduce the size of a larger donor, too. His donor could be up to 6 or even 8 years old. The result is that his chances of finding a match go up.
So I had to ask if they could estimate a wait time. The answer, for all who are wondering, is still no. Dr. Reyes was careful to explain to me that Patrick’s B positive blood type is a mixed blessing. It means that there will be fewer matches. However, it also means that there are fewer waiting children with his blood type, which means his priority is higher, even while he’s healthy. Dr. Reyes just kept saying “We’ll get this transplant done.”
Next we talked about liver health. Patrick’s biopsy in September showed some early scarring of his liver. However, doctors responded quickly with a low-lipid diet and for the past several months his bilirubin and liver enzymes and other measurable signs show that his liver is relatively healthy. The clarity of his eyes and skin are also proof of this fact.
I told Dr. Reyes that we’ve been worried that Patrick’s spleen reacts so severely to infection. He admitted that the scarring in the liver was probably contributing to problems with the spleen. Recurring infections don’t help either. However, he said that a large spleen wasn’t as much of a worry if the liver isn’t also large.
Transplants are scary in a patient with a failing liver because as the liver fails, the body stops clotting as well. Dr. Reyes said he’s not worried about that at all with Patrick. He feels safe doing the surgery. Then he said that if you fix the problems with the intestines, the liver can heal, and the spleen will get better. And he told me again, “We’ll get him transplanted.”
I asked one last question. Should we be keeping our bags packed? The answer was a resounding “Yes”. I really need to wrap my mind around that and get things in order so we’ll be ready to go quickly. The regular trips to Seattle and to the hospital here keep me practiced in packing and packing quickly – but still, it would be good to feel in some way prepared.
The mood of Patrick’s appointments was almost celebratory. His good health, his weight gain, and just the fact that we made it to a clinic visit without being admitted were all worthy of celebration.
We’ll go back again in July.
Roughousing with Lindy
The rest of the trip was pretty laid back. Lindy, who was kind enough to drive us half an hour to the appointments and then wait two hours for them to be done, took us back to her house. Patrick and Lauren crashed early. I was amazed that Patrick put himself to sleep there on just the second night.
And then, after a pretty amazing feat of getting three babies (Lindy was babysitting a 4 month old that day) into the car and off to the airport on time to catch our flight home… including all of Patrick’s medical care.. was impressive. Not the smoothest, but we accomplished it.
We got home Friday afternoon exhausted. Patrick and I both went to bed early. We all slept in. And today has been spent mostly in recovering from a pretty intense week.
I can’t really complain, though. It may be exhausting to chase after a one-year-old who crawls around the house emptying drawers and making monster noises… especially when I am the only thing standing between him and many broken lines. But I wouldn’t want to trade having him happy and wiggly and full of life – and best yet, at home – for anything in the world.
Patrick Hoopes 