Tag Archives: teachers

Kindergarten Take 2

Yesterday, Patrick went back to school. As I said before, to help protect him and ease the transition, he’s only going to attend school part-time for the rest of this school year.

So, yesterday we headed out about 10 a.m. We stopped at the grocery store on our way to get snacks for the classroom. (Since they are instructed not to feed him anything not parent-provided or approved.) Then, since we’d had a little mishap with Patrick’s g-tube coming disconnected during the night and feeding his stuffed animals instead of him, we swung by McDonalds to get him some french fries to tide him over.

Finally, it was time to go into school. We checked in at the office. Because he’ll arrive late every day, we will check in every day. And then we headed over to the resource classroom.

His special education teacher had a little Patrick height banner in the door welcoming him back to school. It was fairly adorable and made him feel really special. While he worked with her, I sat down with his new aide to give her a little crash course on his needs.

Then, we headed over to the classroom. As we walked down the hall, a little voice shouted out, “That’s Patrick!” Followed by a little chorus of excited friends announcing “Patrick’s back!’

We were a touch earlier to Patrick’s class than he’d been expected and so we waited at the door while they cleaned up centers. All the while, little friends would sneak away to come hug him and welcome him back. Patrick was dying to go help clean up, but was obedient and waited.

Finally, they gathered at the rug and I sat down to tell them about where Patrick had been. I explained that the doctors had found a new belly for Patrick. That he’d had a transplant, which means that they took the old belly out and put in a new one. One voice chimed in, “I bet that hurt!” And I answered honestly that it did hurt. A lot! Then, I explained that Patrick doesn’t need his IV tubes anymore and is learning to eat and he told them how excited he is to be back at school with them.

We talked about washing hands and being careful about germs. Patrick’s best friend asked if having a cough meant they couldn’t sit together. So we talked about catching your coughs in your elbow.

The feeling in the room was pure excitement. I am so glad that Patrick was able to go back to this class that has so willingly accepted him and embraced him for who he is.

I left Patrick and went to talk to the school nurses and to clean out the supplies that Patrick doesn’t need anymore. And then, before I knew it, it was time to go. And hour is going to go very quickly.

Patrick’s first preschool teacher was waiting to greet him as he came out of school.

This is going to be a different phase for us. Patrick was so excited when he got home that it took a long time to get him settled to nap. When he got up, there was barely time to get dinner made. ¬†And then, because he napped late and because he was excited, he didn’t sleep again until almost midnight last night.

Short school days at a school far from home means that it doesn’t make sense for me to come home while he’s in class. I’m planning to use that time to start walking and hopefully get myself in shape a little bit.

But, it also means a minimum of an hour and a half of what used to be my most productive time of day that I don’t have anymore. And it’s going to take some adjustment for all of us to learn to get things done with this new schedule.

Tuesday especially are going to be difficult. My own version of Monday. Because they start with a nurse visit, then school, the Patrick’s home hospital teacher will still come in the afternoon.

But we’ll get there. It’s only a month of school and I can tell you, by the joy in Patrick’s face when he got up this morning, that it is worth trying to make it work. At least, if we can keep him healthy enough.

Back to school

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.

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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.

Hooray for preschool!!

 

Mission Impossible

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.