I consider it very good news to share that today was supremely, well.. lazy. Patrick is talkative and happy today.
Things didn’t start out that way. First of all, one anti-rejection medication requires vital signs, including blood pressure, to be checked very 30 minutes and so Patrick already wasn’t sleeping well. During the night, he kept rubbing at the staples around his belly button until he made the incision weep and we had a steroid fueled tantrum about 4 a.m. over whether or not I was a mean mommy for not allowing this.
Perhaps it was this or perhaps it was the effect of waking up sore and in the hospital again once more, but he was just plain sad getting up today. Respiratory therapy came in to do his morning breathing treatment, which Patrick has generally liked. But today it was a new person and he didn’t want anything to do with her. The nurse that was with her asked Patrick if the balloon in the room meant it had been his birthday. Patrick just broke down in tears. Yeah, someday he’ll get it. But right now, that added up to one very sucky birthday. It’s the first time he’s let go and cried about all he’s going through.
I think it was healing. Eventually, we got him to settle down enough for the breathing treatment and managed to change the tube on his nose, too. And then, he was ok. In fact, he was pretty darn happy. He sat up in his bed and played with toys all morning. He made friends with everyone who came into the room. He had a really good day.
We really were lazy all day. Patrick had some bleeding from his drains, which isn’t necessarily concerning.. just means that the suture lines from the transplant might still be healing. But I decided that it meant he should rest. So I let him just play on the bed and took an extra long time getting dressed and eating lunch myself. Occasionally, as a treat, I dip some mouth sponges in water for him. That’s about the maximum level of our excitement.
After lunch, Patrick had a package from our Primary (children’s sunday school) full of gifts and pictures colored by his friends at church in the mail. Included in the package were several chap sticks that I’d been told were specifically intended to be used as a motivator in therapy.. so I told Patrick to earn one, he’d need to get out of bed. He walked to the chair, we sat there all day watching TV, then walked him back to bed.
The effort of walking back and then a diaper change left Patrick’s little body trembling, so we called that good enough for the day. And now here we are, being lazy till bedtime.
A few milestones today: Patrick has weaned off of oxygen support. If he makes it through the night and has a clear x-ray, he’ll probably be done with respiratory therapy. He also got to get rid of a catheter now, which means we’ll need to remember to check diapers.
But that’s all the news, so in the absence of news, a few observations about life here. It’s different being here at yet another hospital. Grown up hospitals are different in so many ways from children’s hospitals. Some good, some bad. Here just a few things that have stood out:
1. Adults are so much more serious about illness that the mood of the whole hospital is just much more serious, professional, and somber.
2. Because adult visitors go home at night, the cafeterias here don’t operate at full capacity at dinner time. We were getting really tired of sandwiches, grill, and chinese food. I finally remembered to eat there at lunch and use my packed lunch for dinner. Eating a real meal (fried chicken and mashed potatoes) made me indescribably happy.
3. Also, because visitors go home at night, they like to shut down other parts of the hospital. Like half of the elevators and escalators. At first, when I was barely functioning, this really bugged me. Now, I welcome the excuse to take the stairs. After all, I have sat in a chair all day.
4. The PICU here is tiny. There are fewer than 12 beds. That means that it’s not hard to get to know the staff. Yes, the team rounding is still huge.. but it’s the same people, so I’m not having to constantly learn new names. It also means that I get to sleep here in the room if I want, (read: if Patrick wants.) And it’s really, REALLY quiet. Unlike the rest of the hospital, not sad and serious most days.
5. Being one of very few children in the hospital also means that Patrick is being spoiled out of his mind. You would not believe the pile of gifts and activities this kid is collecting! We were very well taken care of at Primary Children’s. Spoiled even. But this, this is almost gluttony. There are worse places to be planning to spend our holidays.
5. Finally, this hospital is huge. I spend most of my time floating around this tiny little corner of it. But probably this weekend, we’ll move out of the hospital’s family housing and a few blocks away into the Ronald McDonald house. I am trying to figure out how to make that work smoothly, given how long it takes to either walk to the Ronald McDonald house or to drive to a parking garage, park and walk through the building (without its escalators running.) This is going to break my hospital routine. Of course, not having Brian here to run all my errands and bring me food and clothes is going to do that anyway.
**Disclaimer: I know you all want to read about our much bigger news. However, I had this post all but written before I got busy with Halloween and birthday planning last week. So, I figured I might as well finish it up and hit post. I promise I am following tonight with other news, too.
Our family did something that, for us, was completely upside down last week. I went on a trip. And I left Patrick home with his Dad. I recognize that this is not unusual in the world we live in. However, it is incredibly unusual for the primary caregiver of a home infusion patient to travel without them is very unusual.
Let’s start by saying that we survived. In fact, I think it was good for all of us.
A few months ago, I was invited to attend a research panel on the subject of lost Central Line Access. This came through a doctor who I had e-mailed a few times because of my support group and later because of the troubles we have had in placing a line in Patrick.
At first, the idea seemed a bit crazy. But the more I thought about it, the more important it sounded. Here a group of experts was gathering to help try to figure out how to research and solve the exact problem that is putting my son’s life in jeopardy. Why wouldn’t I take the chance to go meet them and contribute to the discussion.
Well, why, except that we’d have to pay my way and have Brian take time off to fill in with me while I was away. As we discussed it, we decided it was a really good idea for me to try to go. (Brian also thought the break would be good for me.)
So, last Sunday I snuck out of church early and headed to the airport. I got picked for expedited screening at the airport and made it to my gate in under 30 minutes. Then I looked around and thought “Well, how what am I supposed to do with myself?” Remember that usually when I fly, we spend something around half an hour in security alone, and then we have to repack bags, change a diaper, gate check our stroller, and make arrangements for early boarding. Oh, entertain a very active child while keeping his IV tubing safe.
That Sunday was one of the longest and quietest in my memory. I read books, watched movies, played video games, sent e-mails, checked on Facebook, worked on a birthday video and still had time to spare. I finally made it to my room, called home, and then went to bed a little after midnight.
Morning seemed to come too early, but without anyone else to get ready, I was still dressed and ready with time to kill.
The panel itself was amazing. I tried taking notes, decided writing was too slow, switched to a computer and filled 12 pages. I learned so much about what might cause patients to lose central line access. I am itching for this panel to bring forth fruit in the form of better understanding of how to keep patients from losing central line access quickly the way that Patrick did. I can’t go into details about the research plan that was decided upon.. but I can say that it is a huge but simple step that could lead to so much better understanding, and with better understanding comes better care.
It was also an amazing experience to be in a room filled with these brilliant medical minds. I got to sit with and get to know better many of the people responsible for designing and manufacturing central lines. I came home with a stack of business cards and am already working on hopefully becoming a little bit more of a patient advocate in this area.
And then, when the conference ended, I took a cab into Washington D.C. I spent the evening and morning playing tourist. (Only getting myself lost a couple of times and never irreversibly) before time to come home.
On the flight home, I sat next to a talkative man who had been all over the world. We compared travels and experiences and opinions. When we landed, another man asked me what my career was that allowed me to be so well traveled. When I told him I was a stay at home mom of a special needs child his jaw about hit the floor. For some reason, that gave me a bit of an ego boost. I think I sometimes feel like I disappear a bit in this important but unlauded role.
Being away from Patrick and Brian was an eye opening experience. I think it was for them as well. I think we all like our roles. (Though, I’ll admit, it was hard to come back home and dive right in.) I think we can go several more years before sending Mom away on another big trip. But it was really fun to stretch my wings and remember what it’s like to be just me for a while.
Let’s start by saying how happy I am that my wonderful husband was willing to blog about Patrick’s Make-a-Wish trip. (Vacations usually require so much time that I’m helping Patrick to sleep that I don’t get a lot of in-room type that I could type.. and besides, it’s nice to hear Dad’s perspective.)
But – this is a big, busy time for Patrick so I am going to jump in and blog, too, about some of the other important things that have been happening in our lives. One of the biggest of which is… Kindergarten.
Can you believe that? Patrick is in Kindergarten! We NEVER imagined or dreamed this when we adopted him, when he was in and out of the hospital all his first year, when his heart stopped, when he started to lose central line access. Age 5 wasn’t in our plans.
For 3 years, I have driven Patrick to school and lined up next to those great big Kindergarteners who lined up without their parents and who talked and played together. I’ve watched them play on the shared playground. I’ve watched the teachers come to lead them into the school and heard them chant, “Eyes forward! Feet forward! Hands to yourself, and voices OFF!” then fold their arms and file into class.
And until the end of last fall, I didn’t imagine Patrick among them.
And then, when it started to dawn on me that that’s where he was headed, I panicked. And I went on a crazy rampage to get him help because learning to read and write was so far out of the realm of what I imagined Patrick doing that I was afraid he was going to become thoroughly discouraged and give up.
I mean – do you remember the year he had last year in preschool? From the moment the special education teacher came out to ask me what could possibly have gone wrong in Patrick’s life to make him start acting out in class when he’d always done well before, I’ve been struggling to help him rediscover his confidence in school.
And yet, the ball was rolling and Patrick was headed into Kindergarten, whether I was ready or not. Last fall, we had a “kindergarten transition meeting” where we met with the nurse, Patrick’s preschool team and the upcoming kindergarten team to tell them all that they needed to know about Patrick’s needs. And it took an hour and the resource teacher, Ms. Kerkman, seemed to grow increasingly wide eyed and worried and grumpy sounding as the meeting went on. But, in the end, they promised him placement in a typical classroom with lots of help, including a one-on-one aide.
And then, August rolled around and we hadn’t heard any more and I started to worry and sent of an e-mail reminding the principal and anyone else I could cc what we’d been promised.
And you know what? They followed through! I got a call a couple of weeks before school started inviting me to come in and meet the teacher and Patrick’s new aide and the rest of the team who’d be caring for Patrick.
It came on the heels of the trip to Omaha (which I promise gets a blog post soon) and so I made a mad scramble to pull useful information together. The first meeting was to go over needs again and I drafted a new “About Me” document. I was very proud that I kept it to 5 pages. About me is found here, if you want to read it.
That meeting was good, but also frustrating, as the hour I was given didn’t even let me scratch the surface of what I thought they should know that would help him. But I reminded myself that there was a reason I’d written it all down. And we went on.
2 days later, we came back again, this time to meet Patrick’s aide and give her specific training on what he needed. They didn’t give me a location for the meeting, and so we got a late start. Again, there was barely time to scratch the surface. I had time to teach how to take care of medical needs, but nothing about behavior or sensory processing techniques before Ms. Kerkman came in and declared it time to go home.
Patrick and his class headed into an assembly. Ms. Kim, his aide, is helping him inside.
And then, feeling completely unprepared, before we knew it, it was the first day of school.
Patrick was so excited! Dad came along to drop him off. How could he possibly miss such a big day? We waited, playing on the playground. Then the teachers came and taught the kids how to line up. I greeted Patrick’s aide and asked if she had any questions. Then away they went. Patrick came out at the end of the day beaming. I picked up Jimmy John’s and took him to the park so he could unwind and we could recap the day. He was so happy.
In his backpack that night was a folder of homework. And, as I looked through it, I was amazed.. He could DO all of this! It was on his level. Sure, it took a summer of hard work in Mommy School to get him to the point where it was possible, but even the reading and writing stuff? He could DO it!
The next day, I was invited to school. The goal: teach Patrick’s classmates about him. So I pulled together some pictures on my tablet and brought along Patrick’s little mini-me doll named Tubes.
The conversation went kind of like this. I showed the kids a picture of a group of kids and talked about how we are all different. Then, I showed the kids a picture of a kid wearing glasses and asked what they were for. (To help you see if your eyes don’t work right.) Then braces. (To help your teeth if they’re crooked.) Then a wheelchair. (To help you get around if your legs can’t walk.) We’re not sad about these things because they help us. Everyone is different and we all need different help.
Then I showed them a picture of a belly and we talked about what bellies do. They turn food into energy so you can play and grow. And if your belly didn’t work right? You wouldn’t be able to grow and play. So what can help? I showed them Tubes. I told them that Patrick needs to get his food right in his blood, since his belly doesn’t work. (Them:”Ew! Blood!!”.. Me: “Wait. Is blood gross? What is blood for?” One little boy: “It keeps us alive.” Me: “Right. Because it carries our energy from food.” Them: “Oh!”) We talked about what’s inside the backpack and how to keep the tubes safe. (Mainly, don’t play jumprope in them.) I told them to be careful they don’t get pulled because they go into his body. (At that moment, Patrick got up and walked away, stretching his tubes and the kids all gasped. So, I could explain that he knows how to not hurt his own tubes.)
Then I explained a little about food allergies and how they hide in foods that look safe. Then I told them about the brace he sometimes wear on his leg and how that doesn’t mean he’s hurt. (Which led into a 2 minute tangent about all the owies they have ever had.)
I wrapped up by telling them that Patrick has spent a lot of time in hospitals because he gets sick easy. I explained that meant he hadn’t had as much time as them to learn other things like talking and writing and rules for playing so he might seem to not know how to do those things, but that he was learning. I told them how excited he was to be as school with them and how much he wanted to make friends. This was met by a chorus of “I’ll be his friend,” and “Can he be friends with me?”
And you know what? Because kids accept difference so much better than grown-ups, they’ve kept their word. Patrick has friends. He is greeted by name and with hugs when he comes to school. He is happy and accepted there. Which is the best thing a mom could ask for.
Things were rolling along better than I could have ever dreamed. Patrick was actually making friends. We were getting a homework routine down, and would you believe it, after just a couple of weeks, Patrick’s reading sight words and tracing some numbers.
Sometimes when we’re exceptionally late or exceptionally early, we stop for breakfast on the way to school. A favorite is McDonald’s pancakes.
I’d requested a meeting with the district adaptive technology team. These are the people in charge of making “accommodations” for kids who have trouble with written or spoken language. With Patrick’s fine motor skills being very delayed, I’ve been worried that he might get frustrated with the task of writing or spelling. There were 8 people in the meeting, which was much more than I expected. Occupational and speech therapists, teachers, and me.
But the meeting went well. In fact, the meeting went wonderfully. Patrick’s teacher gushed about how much she loved him in her class and then told us that Patrick is about on level with his peers right now. I’ve never left a meeting so happy. We decided that this team will follow him throughout school in case writing becomes an obstacle down the road. And I knew Patrick was in the best of hands with a teacher who loved him and only saw potential in him.
And then, the next week, I went to pick Patrick up from school and one of the little girls in Patrick’s class ran right up to me and said, “Ms. Gough is going to go away and we will have a new teacher!” Then she bee-bopped away while I stood there wondering if I’d heard correctly.
But yes, the note in Patrick’s backpack confirmed it. The school had fewer kindergarteners enroll than they had planned on and the district decided that they had to cut one of their afternoon classes. Patrick goes to school in the morning, but since losing the afternoon class meant his teacher would otherwise be going part-time, Patrick was losing his teacher. Her last day would be the next day and then they’d have the substitute until they could hire someone new.
Yeah, I shed a few tears. And I played out several horrible scenarios in my head over the next few days. And I considered writing letters or protesting or pulling Patrick out of school. Especially when the next week I heard that they had no applicants and no long-term substitute lined up. But then I reminded myself that I’ve learned that fighting against the system and getting emotional don’t solve problems.
Thankfully, we had somewhere else to go for the week. Patrick’s make-a-wish trip meant that he could miss some time with a substitute. And I could figure out where to spend my momma bear energy when we got back.
But, a few days into our trip I got a voicemail saying that they’d hired a teacher and inviting us to a parent/teacher conference. Patrick’s new teacher, Mrs. Hunt, started the day we returned from Orlando. We sat down with her yesterday to discuss his needs. After a few minutes of me explaining medical terms for her, she stopped me and told me that she’d recently worked in the infant unit at Primary Children’s Hospital and, therefore, I didn’t need to translate for her. Not only did that make the meeting a whole lot faster and smoother, but it gave me some peace of mind as well.
Today was Patrick’s first day back to school since our trip and he seems to have done ok despite the interruption in routine and the new teacher. We’ll see what lies ahead.
Overall, though, this start to Kindergarten has gone much better than we’d have imagined. Patrick’s classmates were so excited to see him come back today. They wanted to hear all about his trip. One favorite friend immediately held onto his backpack handle and walked with him, comparing Disney experiences.
Patrick’s aide , Ms. Kim, has done such a good job taking care of him. And that is translating to him doing better in class and with his peers. She and Ms. Gough have built a great foundation for him to start with and I hope that he’ll continue to do well with this new teacher, as well.
But I still step back a bit in awe sometimes. It’s October. Patrick’s in Kindergarten. He’s learning to read. What an amazing place to be in!
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?
I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.
So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.
Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.
It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.
I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.
As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.
But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.
My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.
In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.
Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.
Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.
But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.
Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.
And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.
At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.
Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.
But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.
I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.
Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.
I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.
I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.
And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days.. She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.
She calls the project The Orange Rhino challenge.
And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.
But I just couldn’t seem to get there.
And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.
That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.
And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.
I stuck a sheet of foil star stickers in my pocket and away we went.
It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.
I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.
So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.
My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.
In the midst of all of this madness, Patrick went back to preschool.He was excited, for sure, but talk about a crazy time to send your little boy back to school! He attended his first week. We picked him up from school on Thursday afternoon, flew to Omaha, got a new line put in, came home Sunday, and sent him back to school.
On the one hand, it was nice to have somewhere fun, comfortable, and safe for him to go while I tried to get everything taken care of medically. On the other hand, it’s really hard to have your world turned upside down and come back to a brand new routine.
I think we’re getting there, though. Finally.
Patrick is super excited to be back in his familiar classroom and we’re both very happy that he still has his great preschool teacher, Miss Catherine. She is great about being aware of all of his needs, but still letting him be a kid.
Both of the classroom aides that he knew and all of his therapists have changed. That has been disturbing to him. Thankfully, one of the aides worked with him in his other classroom last year so he already feels safe with her and she is comfortable with him.
It’s different for Patrick to be one of the bigger kids in the class. For one thing, I can tell that he’s really kind of annoyed at all the little kids who don’t know their names yet and hang their coats in the wrong places and steal the other kids’ name collars. Kinda makes me smile.
He was worried that his best friend from last year isn’t in his class again. Thankfully, we still see Fred before school because he’s in kindergarten and they line up right next to us. I was actually really excited when Fred recognized Patrick and climbed right up into the car next to him to talk to him the first day. These two little boys are really kindred spirits and I’m so happy that friendship survived a summer apart.
Patrick’s also making new friends in his class. He has a little boy in the class named Angel who is in a wheelchair. Last year, Patrick really fell in love with a little boy named Conner in his class who was wheelchair-bound. Since then, when Patrick sees a child in a wheelchair instead of seeing the wheels (which is his natural tendency)… he looks for a friend there. Angel is no exception. Patrick adores Angel. He goes right to him to talk to him while all of the other kids gather in the mornings. At first I worried that he was making him uncomfortable, but I can tell now that Angel is happy that someone comes to him, since he can’t easily go to them.
I had a chance to volunteer at the school after just a few days. I actually had a really great time. It was wonderful to be somewhere where my education in teaching, Spanish and sign language met up with all of the special needs training I’ve picked up over the past 5 years with Patrick. It was awesome to play with all of the kids and I think that knowing them has made it a lot easier for me to help Patrick learn to interact with them in line in the mornings. I can’t wait to go back and help more. But for the next couple of weeks, it seemed that I should probably give Patrick some space. Having mommy in class was fun, but also kind of cramped his style.
Starting the school year in chaos has been hard for Patrick. The transition to busy structured days has been tricky, too. With school most mornings, all of his doctor and therapy appointments fall in the afternoon. After the first couple of weeks, we were both irritable about the new, more demanding schedule.
Finally, this weekend I decided it was time to stop trying to accomplish so much. We took a total lazy day Friday. It took till 10 a.m. before we were dressed and left the house. It was a perfect break and I can tell he’s feeling better already.
Hopefully that will translate into him doing a little bit better in school this week. I hope he’ll feel more at home as he gets to know the new staff and classmates, too.
Patrick loves school and is so excited to be back. And I’m enjoying a little more peace and get-things-done time than I’ve ever experienced before.
And I hope in a few more weeks that we’ll hit our stride and it will feel natural again.
Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.
First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.
We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.
Loving his warm blankets in pre-op
Then we got the meet the doctor and go over the plan.
The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.
What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.
Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.
As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)
He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.
He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.
Whew!
And by the end of the day, Patrick was back active on the transplant list.
The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.
At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.
Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)
Patrick making his teddy bear play tablet while on forced, sedated bed rest
About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.
2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.
The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.
And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.
And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.
Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.
So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.
The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.
Playing pioneer at the Mormon Trail Center
After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.
Yesterday when we were checking into the Ronald McDonald house, our host asked where we were from. When we said Utah, he said, “Oh! Mormon country!”… Then after a pause told us he’d just come back from Utah after helping to settle some kids who’d been through a really rough time. “Mormons really take care of their own.”
We can testify from our own experience that that is true. And yet, our amazing friends, family, and congregation are always asking what more they can do. One of the questions we hear most during these long difficult stretches is “How can I help?”
So, in tribute to all of you, and in answer to the dozens of people who have asked for ways to help over the past few weeks, I thought I’d pass our waiting room time bragging about some of the ways we’ve been helped over the years.
1. Visits.. It doesn’t matter if we’re at home or in the hospital. A new person always lightens and lifts the mood. For example, last hospital stay one of our friends was brought to the hospital for work and found herself with some extra time. She texted and asked if it was a good time to stop by. She came and, because Patrick needed out of the room, we walked down to the playroom. That’s when we discovered his line had broken and we turned around and headed back to the room. She walked with us, and as nurses swarmed the room to help the problem, noticed that the breakfast cart had come. So she went and picked up a muffin and milk for me.
I share this story for two reasons. First, it shows that you might just dive into chaos and wonder if you’re in the way. The truth is that Patrick talks about who visited all day long, whether the visit was at a “good time” or not, whether we actually had time to chat and play or not.
When we got home, another friend came to visit and brought a few new toys and a balloon. (New distractions are always a big help). Patrick’s talking about that visit a week later.
We get lonely. We get sick of each other. We need our days broken up. We may not be great hosts, but just your presence helps.
2. Food. In the Mormon world, bringing food is something we’re exceptional at. And believe it or not, it really helps. On the return from one hospital stay, a friend showed up with a pan of uncooked enchiladas. It was a few days later when we got to cooking them, but it was so nice to have a prepared meal in the fridge. Once we returned home from a trip to find a pizza on the porch. And you may remember when we charged a cookie entrance fee to visit Patrick in the PICU. Those cookies were needed sugar during time when we rarely wanted to leave Patrick’s side, and a lot of fun to share with nurses and other hospital staff and patients as we had so many of them that we couldn’t eat them all.
In the hospital, lunches are especially challenging for me. I often can’t get out of the room to get something to eat. Once, I picked up the phone to order room service to the ER 10 times in an hour and never could stay on the phone long enough to place an order. I often just skip lunch when Patrick is hospitalized. But I’m a grumpy bear when I’m hungry. Food helps me be a better mom.
If you really want to make my day when we’re in the hospital, show up with a sandwich or some snacks. (Do you know there was once when Patrick ran a fever and wanted me to lay in bed with him for 48 hours and the only food I ate were the snacks friends delivered?)
I love our family who faithfully pack Sunday picnic lunches to eat on the patio? Even though the medflight helicopters blow all of the food away when they take off and land? And I love my mom who often things to bring along things like fresh fruit and vegetables.
3. Play time. You’d have to not be looking to miss that Patrick is a VERY active and playful little boy. He wants to be doing something every moment and if he gets bored can stumble into trouble very quickly. One of the biggest helps for me is when someone will come to play.
For this entire summer, my next door neighbor’s youngest daughter has been coming over to play with Patrick. She has so much more energy than me and is more than happy to push him all around the backyard in his stroller to make him laugh, or to read books, or to do crafts. We’ve even taken a couple of field trips to a nearby splash pad. Because Patrick’s an only child, having another child to play with is an amazing gift for him. And for me? It gives me a short break from being the one who thinks of fun things to do.
Playdates are an amazing help. The patient practice Patrick gets playing with other kids. Often they come at moments where you may wonder why we’re crazy enough to go out, but it offers just the break and distraction we needed.
I’ve had teenagers come to play while I did dishes and another friend come bring the most amazing craft and science projects. I’ve even had friends ride along to doctor’s appointments to play with Patrick in the waiting room. Patrick is so happy to have the company.. And any opportunity to wipe down counters, fold some laundry, load a dishwasher without little helping hands helps me.
4. Help with the chores. That brings me to my next topic. Chores. I always have more things on my to do list than I have done. Especially since conversations with doctors, appointments, hands-on medical care, and quality time with Patrick trump household duties quite often.
My little sister is awesome about this. She often comes by in the afternoon after school or work and helps me put the toys back in the toybox, sweep, prep dinner, iron, etc. If Patrick wakes up while we’re working, she takes him to play and lets me finish.
When Patrick was coming home from the NICU, a “cleaning crew” from our church came and sanitized the house. And one sweet lady took about a dozen shirts from me, ironed them, and brought them back to put away. I’ve had people take home our laundry, wash, and return it. We’ve had neighbors water and mow our lawn, pick up our mail, bring in our garbage cans. And on and on.
It makes a home feel so peaceful when it is clean. And often, helping me clean is easier than helping with Patrick.
5. Help in medical moments. I have to give a special shout out to friends, neighbors, and family who have stepped up and learned to do things they never imagined they’d need. You have prepped TPN, given meds through a g-tube, changed countless central line dressings, restrained Patrick so I could change a button, clamped off broken lines, treated allergic reactions, caught vomit, changed diapers with our crazy diaper cream regimen, sat with a febrile little boy so I could pack a hospital bag, and on and on. And, in what is the one of the smallest and biggest things you do, you have carried Patrick’s backpack while he explored so we could sit down.
We are a part of a very, very lucky and small minority of special-needs, and especially short gut, parents who have not just one but several people we can call on in these moments. Because of you, we still make it to the temple sometimes, catch a hockey game, see a movie, and go on dates. You make it so he can go to Primary at church with the other children. You get me to the dentist. You let me nap.
5. Listen. You read my blog. You follow us on facebook. You help us troubleshoot. (Like the onesie pattern that Brian’s mom and I developed over the years to keep his line and button safe at night… or the countless little issues solved by brainstorming with other short gut families online.) You chat. You call. You stop and give me a hug and let me cry without saying anything at all.
6. Prayer. And, when you can do nothing more, you pray for us. I have felt us lifted up by your prayers. I have felt the peace of your prayers. And I have seen countless medical miracles because of your prayers. Thank you for thinking of us, praying for us, and keeping our names on prayer rolls and in prayer groups and flickering in the flame of sacred candles.
Thank you. Thank you. Thank you! How would we have made it this far without you?
And thank you for continuing to offer your help. I hope this brag list helps answer your question of how you can (or already do) help.
I probably have this idea in my head because we watched a Mission Impossible movie a couple of nights ago. But I swear that today, as I ran from one major problem to another and felt myself being powered by pure adrenaline, that my life is no less demanding than a Mission Impossible mission. Maybe a little more dull and much more sedentary.
Here’s why today had me thinking that. I stayed up till a little after 11 last night finishing off Patrick’s care notebooks, a 30 page medical history and emergency plan for Patrick’s school staff. I was woken 4 times during the night, twice by IV pumps alarming. Twice by Patrick’s mylar balloon drifting into the ceiling fan in the kitchen.
At 7:30, Patrick woke up and I tried really hard to explain that we had a busy morning and needed to get ready quickly. After a summer of lazy, he did his best but we were definitely out of practice.
We finally made it downstairs and I scrambled to put finishing touches on school supplies. That doesn’t mean pencils and papers for Patrick. It means putting together a medical supply emergency kits, diaper changing kits (with instructive labels on each bottle of cream), care notebooks, first aid response cards (miniature and laminated to fit in Patrick’s backpack), and allergy safe labels on boxes and bags of snacks.
Patrick’s school open house started at 9:30 and we got there a little after 10. I felt really bad for coming so late.
BUT we had a chance to meet some other parents and kids and explore the classroom a bit. As we were nearing the end of the open house, I had a chance to meet the speech therapist and special education teacher who’ll be working with Patrick this year. I kind of tried to make a mad scramble in my tired brain to remember the relevant information I wanted to discuss with them about his goals. I think we covered the main points and I was impressed that they seemed to be on the same page as me. Then I went over with the teacher and classroom aides a refresher course on his medical care and diaper care and what ADHD and sensory processing disorder mean for him. And, of course, how and who to reach in an emergency.
I left the classroom half an hour after the open house was due to end. We walked Patrick’s medical supplies down to the school nurses’ office, along with a copy of the emergency plan, and briefly went over their questions.
Then I pulled out my phone and noticed that I had missed phone calls. Lots and lots of phone calls.
On the drive to the school, I’d called Patrick’s dietitian to tell her that we can’t get blood to draw off of his new line right now and ask if she really needed any labwork done today. (A nurse visit popped up in the schedule yesterday.)
That call prompted her to call Patrick’s GI, Dr. Jackson, who’d spent the morning bringing himself up to speed on Patrick’s new line and being put on hold for transplant. And he was quite concerned.
Oh, and I’d missed the call back from the transplant nurse in Nebraska.
So, when I got in the car, I called back Dr. Jackson. He apparently spent the morning going over operative notes and talking to the radiologists and other surgeons. And he’d learned something about Patrick’s new line that was alarming.
We had misunderstood what we’d been told about the placement of the line. The azygus vein is not a central vein. That means, it doesn’t directly connect to the heart. The tip of the new line is in a dilated part of that vein. But, after the tip there are some collateral (spiderlike veins that grow around a clot to reroute bloodflow like the little streams that form around the sides of a river if it is partially blocked.) And it is those that are connecting to the main veins and to the heart.
And since those veins are small and could infiltrate just like a peripheral IV vein, (or swell and close off that access, too) Dr. Jackson wanted Patrick off of his TPN ASAP.
Because of Patrick’s low lipid protocol, there is a lot of sugar in his TPN. It’s a very high osmolarity formula that kind of rips up small veins. So tonight we got a shipment of a lower osmolarity, lower sugar formula to run until we get a resolution.
Dr. Jackson also contacted the nurses and doctors in Nebraska on our behalf.
Anyway, I spent the drive home talking to him, then brought Brian up to speed, grabbed a quick lunch then called back the Nebraska Medical Center. They asked me to fedex them a CD of all of the imaging done of Patrick’s vein in the recent past and e-mail them all the radiology reports I had.
By then, Patrick was pretty tired and pretty tired of me on the phone, so I tried to rock him to sleep for his nap. But the phone rang. A homecare nurse seeing if I needed my TPN pump reprogrammed. Then it rang again. The homecare pharmacist setting up a shipment of the new formula fluid.
By this point, I texted my sister. I could tell I was in over my head and needed more time than I had.
She drove over while I got Patrick down for a nap, then stayed with him while he slept. Meanwhile, I scanned all my radiology reports. Then I drove to the hospital to pick up the CD of radiology images that Dr. Jackson had requested on my behalf, stop in medical records for accompanying reports, and then down to the pharmacy for a prescription for ranitidine to replace the IV form Patrick usually gets in his TPN. Of course, on the drive up talking to the homecare pharmacy to order tubing and other supplies to go with the IV fluid. And, in the waiting room, e-mailing the nurse in Nebraska to decide that they wanted their own venogram done anyway and that they could schedule Patrick’s procedure without me sending a CD after all.
By now it was 3 p.m. and I was feeling a bit like my mind was doing stunts Tom Cruise could only dream of. I was exhausted with trying to change gears and think of entirely new life-critical details. Fortunately, 3 p.m. is 4 p.m. in Nebraska and close of business for the intestinal transplant office.
So, when I got home, I just had to make dinner and clean up a little bit until evening.
Dr. Jackson called this evening and we had a good conversation about where Patrick is and where things are going. The best phrase of the conversation was when he told me that he thought that the doctors in Nebraska are just smart and daring enough to be able to “Macgyver something” to keep Patrick listed if possible.
But we also had a good talk about where else central lines can go and how to reduce and treat clotting in veins and genetic predispositions and a whole bunch of other crazy things, kind of like Dr. Jackson and I like to do. Is it strange that he and I kind of enjoy talking over medical problems together?
The encouraging thing to me is that, although he called our situation “sobering”, I could hear in his voice that he has a lot of hope still.
And that he’s pushing to get things done, and quickly. I think he said he’d e-mailed the surgeon twice and had sent a copy of all of the radiology reports that he was able to send by e-mail to his nurse.
This evening, we received the delivery of new fluid and got it started. (The sad thing about this change is that, with fewer calories, Patrick can’t afford a tubes-free time every day. The good thing is, the bags are split into two per day so they weigh less and he’ll be able to wear his pack.).. After connecting his fluids for the night, we picked out clothes for school, put on PJ’s, and tucked Patrick into bed.
I’m hoping for a little more calm tomorrow. I’m happy Patrick doesn’t miss the first day back at preschool. And that, amazingly, we pulled that all together in the midst of all of the rest of this madness.
And maybe I can get phone calls done while he’s at school. Maybe even a plan for how to get out to Omaha. Maybe.
Or maybe, if they’re not ready for me yet, I’ll just go sit on the lawn at the park next door and read a book and delight in the knowledge that at 10:15 every Monday-Thursday, Patrick gets to go visit the sensory room. And all his favorite aides from his old class get to come into his new class for morning circle time. And some of his familiar friends are still there.
I think I had enough adrenaline for one day today. Heck, I’ve had enough this month to get me by for a year.
Patrick Hoopes 