Tag: business trips

If you’re wondering why I’ve been acting a little crazy…

What an overwhelming two weeks I have had. If you’ve happened across me you may have found me forgetful, worried, tearful, distracted, jumpy, uncertain, self-consumed or any other manifestation of anxious. I live with anxiety. It’s been part of who I am for a long time. When we were undergoing fertility treatments, it kind of consumed me. Therapy helped teach me to live with it. And now? Well, it’s been a very stressful two weeks and anxiety has been thread running throughout all of it.

It is no surprise that this has been a hard stretch. I’ve been saying for a long time that my goal for August was just to survive.

Brian went to Europe (Ukraine and Poland) for work for 10 days. Wives were invited and I couldn’t go and that hit a lot harder as he got on a plane and left than it usually does when he has to travel. Also, this was one of those real long-haul trips. A long one. And a busy one so that most of our chances to talk to one another were stole little moments when one or the other of us should have been doing something else, like sleeping.  And there is no real cure for a linguist and lover of travel and culture to stay at home while her best friend sees the world without her.

It was also one of those really busy times here at home. As I mentioned in my last post, we have been working with Patrick’s allergist, GI, and dietitian to try to switch him to oral eating instead of enteral (through a g-tube) feeding. I kept a 3 day chart of Patrick’s diet and learned that he’s eating just under 1600 calories a day. The goal is 1800-2000 and therefore, a few more bites at each meal and he may just be there. The log showed that he needs to get more protein into his diet, which sounds challenging since he’s still struggling with typical meats. But I introduced him to fish while Brian was away. (Brian doesn’t like fish). And to fish sticks. And he loved them. And, out of the blue, Patrick started actually eating roast which gives me hope that if I can just get the meat tender enough, he might be able to eat it. Meanwhile, I we are supposed to be encouraging him to eat the proteins he likes like soy cheese and hummus and lunch meat. (I have taken to buying a few of those little buddig lunch meat packets and sometimes just handing one of those to him to snack on.) Knowing he’s a touch allergic to soy, I switched to sunbutter, which was received with lots of pleased “mmm” sounds.

But the mission that really turned me into a basket case this past little while has been trying to make plans for Patrick to go to school. I had the chance to talk to his classroom teacher and also to the school nurse. And the vibe I got from both was worrisome. They both seemed totally great at their jobs. And they both seemed to feel completely in over their heads with Patrick. In fact, both asked me why exactly Patrick wasn’t in the medical hub when it was obvious that he has such big medical needs.

I had long conversations and I wrote long e-mails and I did everything I could to make people talk and work behind the scenes. But I couldn’t do what was really the most needed until today.. I couldn’t meet with the school. I miscalculated. Brian offered to send me to visit one of my dearest friends, Lindy, who lives in Seattle. Her family housed us through I don’t know how many checkups at Seattle Children’s while Patrick was waiting for transplant there. And when we moved our listing to Nebraska, Seattle became too far to travel. I haven’t visited in 2 years. And so, since he was going to be away for a long time and since we didn’t swing a family vacation this year, he offered to send me out to visit.

I wasn’t sure as I was getting ready to go that this was a wise choice, this travelling alone with Patrick when my husband was gone and I had to pack and get us there on our own. It didn’t go well. The day before we left I was anxiety personified. And I went to bed wondering if I’d completely lost my mind.

Thank goodness it was a visit to a friend who helps me piece my sanity back together. It was good to catch up. And it deserves its own post. But as usual, Lindy helped me to talk and work through some of my struggles. And Patrick basked in the love of this amazing family.

And then we came back home and dived into madness again. I didn’t even get to unpack for like 36 hours, things were so busy.

Yesterday I tried to juggle back to school shopping and phone calls and e-mails with Patrick’s medical team and cleaning the house and unpacking and making quality time with my son who is about to leave me during the day. And there weren’t enough hours in the day. And Brian was going to be home in a couple of hours.

And then… Brian’s plane got delayed. And I kept working. And the flight kept getting pushed back. And I started to feel guilty because I started to wonder if my prayers for there to be enough hours in the day were resulting in airport delays. But I just kept at it and soon enough had been done. Patrick was in bed. And my amazing respite worker had come over on no notice to sit with him so that I could go bring Brian home.

And I’ve decided this post is getting too long and so I’m gonna wrap it up with just this thought because today deserves its own whole post too. But here’s the thing…

I’m recognizing that I’ve been just getting by for a very long time. Almost a year. And now that school is on the horizon, I’m trying to piece my life and sanity back together. I’ve started to go back to therapy. And I’ve started to recognize that to let go of this crushing anxiety I’ve been carrying, I have to stop just shoving it down deeper inside.

When you’re just surviving, that’s what you do. You put it down deep as far as you can so you don’t have to look at it and you just carry it with you while you move on. Like when you are at the store and they hand you a receipt and you don’t have really anywhere to put it so you tuck it into your purse. And before you know it your purse is all filled up with wadded up papers and wrappers and odds and ends of spilled things. And you just keep carrying them around because it takes effort to get things back out and look at them and figure out what to keep and what to throw out. That’s where I am. I’ve got all these things tucked down because I didn’t have anywhere to put them. And I’m hoping that I can get them back out and let some of them go.

So you might see me a little bit weaker for a while. It’s ok. That means I’m trying to work through some things. Anxiety is part of who I am. I’m pretty good at squaring my shoulders and pushing forward. But when I get a second to be myself, I’m going to need to work some things out. And it might look messy while I get through it.

Daddy in Norway

A couple of months ago, Brian came home and told me that the business associate that was visiting from Oslo had surprised him with an offer he didn’t think he could accept. Because the internet is a global enterprise, you shouldn’t be surprised (though you probably haven’t thought of it) to learn that web companies sometimes do business with other companies overseas. This particular one was holding a conference near their headquarters in Oslo, Norway. Brian was invited.

You may not know about me, because I live so deeply in the special needs mom world, that I was a student of linguistics in college. That I love other cultures. That I taught English as a Second Language. That until we became parents that we were travelling as often as occasion allowed. No. If my husband was invited to visit a new place in Europe, I wasn’t going to say no.

I did tell him that I couldn’t promise that I wouldn’t be jealous and/or that I wouldn’t have a hard time holding it together while he was away. But I did promise I would try.

So, last Tuesday as I was dealing with a fire at home, Brian hopped on a plane to Norway, with a connection in Amsterdam. He spent the first part of his week in the conference being shmoozed by the hosting company, with a little bit of touring Oslo in the meantime. Then, he headed off with the friend who’d invited him to a cabin in the Norwegian forest where he biked, boated, and even walked barefoot through a forest so moss-covered that it was as if the forest was carpeted.

I make it a policy to not stay home and sulk if I can help it. A great deal of time and energy was spent working on taking care of our little house fire.

Thank goodness reinforcements also came on time to help with that. With summer starting, the neighbor girl who is doing respite for me started. She worked 3 days last week and it was life-saving. As an added bonus, the neighbor’s 10 year old called and came over a couple of times during the week to play with Patrick. He adores her and it really helps me. Then there was the amazing friend of mine who came to my house after getting her own boys up and ready for the day to help me get Patrick and myself up and ready by 8 a.m. so that we were keeping in habit between Nebraska and the start of summer school. I swear I only showered that week because of her help.

Two other friends worked together to bring in a meal Tuesday night and that, combined with leftovers of a frozen lasagna and spaghetti I’d made Sunday, made up most of what Patrick and I ate that week. I think the most complicated other cooking I did was some vegan macaroni and cheese from a box.

I’ve become aware of a tendency between Patrick and myself to build upon each other’s negativity. If I am in a bad mood and criticize him, then he becomes more defiant and naughty, and I in turn get more strict. So I decided that, as we kicked of summer, we needed a way to encourage more positive speak. I’d read an idea of putting warm fuzzies in a jar when children are caught being good. But I didn’t have any pom poms. What I did have was a bag of rainbow colored foam popsicle sticks. Cut in half, they created a very durable, easy to handle “ticket”. Sunday night, while I was waiting for Brian to see why the internet was out, I slapped some labels on an old gelato jar and a formula can. One for me, one for him. And now, I carry a pocket full of tickets. When I catch Patrick doing something especially kind of helpful, when he obeys when he doesn’t want to, when he gets control of his temper when he is feeling out of control, etc. he gets a ticket. They easily move from my pocket to his. And once or twice a day we empty his pocket into the jar. When the jar gets full, he earns a reward. At first, I was offering kids meals. Now, we’ve opened that up to a dollar at the dollar store, too, since we are filling the jar more than once a week.

Anyway – this has helped the mood in our house. It also gave us a great excuse for an outing.

Wednesday is “library day” in our house. So, once the cable was fixed Wednesday, with Patrick’s jar full, I decided we had earned an outing. I checked out museum passes for the month of June. I thought we’d start with what had been his least favorite museum before, the Leonardo. And then we could go over and visit the city library.

Well, it turns out that the exhibits at the Leonardo have changed a bit and Patrick has grown up a lot. He is a little bit of an engineer at heart, taking after his father and grandfathers in wanting to know how things work. And he couldn’t get enough of the hands-on engineering exhibits at the Leonardo. He wasn’t as much in love with the arts side of things. But, when I thought he’d seen it all and suggested we go, he announced, “No! I love to be here!” And we went and did them all again. We arrived at 3:30. We stayed till 5. That is a long time at one thing for Patrick.

When we left the museum, I considered moving my car, since it was in 2 hour parking.. but instead let Patrick lead up up the stairs on the outside of the library. You can climb to the roof of the Salt Lake City Library by a long circular set of stairs on the outside. Of course, Patrick did. And then, after playing on the roof, we rode downstairs in the glass-walled elevators to the children’s section. Patrick was enchanted.

The children’s section has a hole fort-like reading corner. We picked out books and went to read. Then Patrick needed a diaper and I remembered my car, now 10 minutes past time to move it. We went outside with the intention of moving the car.. but getting outside reminded us both we were hungry and Patrick voted to go to dinner.

He’d chosen Arby’s for dinner and a downtown location felt just fancy enough. I knew we needed to do some grocery shopping, too, and while we were eating I remembered that the downtown Smith’s location as a fairly large allergy section that I’d never explored. So we went grocery shopping. Patrick was beat! But they had goldfish crackers on sale. (We’re using them to give him small amounts of dairy exposure to try to help reduce that allergy… plus he loves them.) And, as I went looking for vegan mayo, I discovered a new product called “Just Ranch” that happened to be on clearance. It was an entirely vegan ranch dressing. And next to it was “Just Coleslaw Dressing,” though they were out of “Just Mayo.” We picked up a few, headed to the car, and made it home, snacking on goldfish while we drove, just on time to go to get by 8.

Friday, we tried to meet some support group friends at the park. I’d picked an adaptive playground I love because I find them easier not just for wheelchairs, but also for kiddos with TPN or tube feeds in tow. Alas, we ended up there alone. Short gut means hectic schedules and I often end up planning get togethers that only I attend. But we stayed to play, anyway. We’d made up some chicken salad with the Just Coleslaw dressing and Patrick devoured it. (Yay!) Being an adaptive playground means it was full of special needs kids and their special moms. So when the phone rang and it was Patrick’s summer school teacher calling to learn about him before the next week, some sweet special moms just took him in with their own so I could talk.

Saturday, we decided to try out another museum pass. This time to the Museum of Natural History. I’d opted to spend the morning working in the yard before it got too hot. And it was crowded in the afternoon, which made it harder for Patrick to focus. But we still spent a couple of happy hours and I think he got a chance to explore and play with everything that suits his abilities.

Sunday, we attempted a little more church than usual. Patrick did really well in Sacrament meeting. He set up his toys on the floor and happily entertained himself past our goal of the first talk. It took effort me to stick to my resolution to not overload him and leave once we’d met the goal.

We went home, ate lunch, and talked to Daddy.

That afternoon, I took Patrick back for Primary. His first attempt since transplant. He was tired by then. And overwhelmed by the new place. He said the opening prayer, except he didn’t. They’d whisper ideas of things he might say in his ear, and he’s just say “no.” But he got to talk in the microphone, which made him happy.

Then, he ran wild around the room for the remainder of singing time. (Different to go observe instead of leading.) And then I took him home.

I’ll write more about Monday. Maybe tomorrow. The short version is that he started school, I started working with a district representative to talk about his 1st grade placement, and then we went and brought Daddy home from the airport. That night, I cooked my first real (not restaurant, frozen, boxes or reheated) meal in 2 weeks. And we were all ready to crash by 9.

Transplant Day 219, a fire and the cable guy

The Sunday after we got home from Nebraska was busy. Patrick was definitely still feeling stressed and sore. His primary (children’s sunday school) lesson at home was a total bust and ended abruptly with him getting out of control and then him asking his teacher to end early. He was so out of sorts that Brian just kept him home from church. And most of the rest of the day was spent just kind of trying to just help keep him calm and happy.

So, when Brian was away at church meetings in the evening and Patrick got restless, we went to visit family. And when I got home and the internet was out, I decided to just let it be till the expert got home to check it out. Usually, our server just needs rebooted.

This time, however, the problem was much bigger. Brian went looking for problems when the server and modem seemed ok. He didn’t expect to discover the cable box mounted on the house to be missing.

That’s right. Missing.

While Patrick and I were gone that evening, our cable box caught fire, fell off the house, and melted on the ground. It singed our siding. It melted a sprinkler. And then it burned out. Thank goodness.

cable-fire

I know now what happened, but that night couldn’t imagine how a cable signal box (a.k.a. pedestal) could simply self-ignite. There were burned cables hanging. And I was freaked.

I called Comcast, but got a call center who knows where. There is apparently nothing in the customer service script about what to do in the case of fire. And with the fire out and it being 10 at night, it didn’t seem right to call 911. So I made an appointment for the next day at 1. Then, I made an appeal for someone to come earlier and that somehow made them erase the appointment. Only they didn’t say so.

So the next day, I stayed home and waited for the cable company. When they didn’t come, I started calling. I called 4 times. They had a 12 year old phone number in their records. They kept failing to remove that number from their records. They were having a supervisor call me. Or a special ticket created. Or a field research supervisor. No one called back. No one came. Lesson learned – if you have a problem with a cable box fire, report your service is out. That is the fastest and most efficient way to get help. Don’t mention the fire. They don’t have a solution available for that.

IMG_20150608_104604

Anyway – meanwhile Brian was supposed to fly to Norway the next day for work. So here we were, trying to get ready for him to leave town. No phone (we use VoIP). No internet. No streaming video. (A problem for Patrick.) And me spending all day on the phone trying to get someone sent out.

Tuesday morning, I finally got the fire department to come and look at the damage. They explained that the fault was likely an ungrounded power meter. With our house not grounded, a surge of electricity had used the cable line as a ground.

And without any resolution, I put Brian on a plane to Europe.

That evening, I got an electrician here. He confirmed that our house had somehow lost its neutral and used the cable line as a ground, causing the box to overheat and burn. He also quoted me the cost of grounding the house. A day without power, a building permit and inspection.. and a hefty dollar price tag, too. I told him I’d get back to him when my husband landed so I could talk to him about the budget.

Wednesday, a friend who had previously worked for Comcast intervened on my behalf. I’d finally gotten a Friday appointment to come investigate the outage. My friend got someone to come out and fix the cable. He replaced the box and ran new cable from the pole, since the existing cable had been melted inside.

Thursday, I got a sprinkler guy here to replace the melted head so I could turn my sprinklers back on. With highs in the 90’s, I wasn’t keeping up with watering.

IMG_20150608_075919

And finally yesterday, we had the electrician come to replace the meter. The work went smoothly. There was a breakdown of communication between the building inspector and the power company and it was nearly bedtime before we got power back on.

It felt like an especially big burden to take on by myself while my husband was out of town. I am so grateful for friends and family who stepped in to help out with charging, shared wifi, advice, phone calls, referrals, keeping Patrick entertained and other help. I really did feel in over my head. Especially trying to keep Patrick safely away from the downed lines and the workmen all week and juggling his needs with the time required to make phone calls and get things fixed.

Patrick is still mad at me that I haven’t washed the scorch marks off the wall yet. But there are definitely more important things, and safer things, than getting up on a ladder with him “helping” to do that job.

1467361_10205782499015694_4394800754718421047_n

Meanwhile, you may have noticed that the blog was down. Sorry about that. When Comcast restored service, they reset our IP. They aren’t big fans of hosting your own websites on a home internet account. So it took getting the professional, Brian, back home to get things up and running again.

 

 

Getting ready for summer

It is disorienting to realize that next week is kindergarten’s last week of school. We only just started and it’s almost over again. I feel really bad to be just gearing up while teachers are working to try to take care of the mountain of things that need to be done for the end of the year, I’m here trying to squeeze every last drop out of the few weeks that we have available to us.

I am amazed at all that they ARE doing for him, though. For example, I noticed that Patrick’s class was at recess every day when we arrived. So I asked and they revised his IEP to allow him to go to recess with his friends every day. He is in HEAVEN getting that extra time with his friends. And I understand that he is doing better in class, too, as a result.

Also, I’ve been working all week with his special education teacher on getting the forms completed for him to be able to participate in Extended School Year (a.k.a. summer school). They hold 3-day weeks on 4 weeks during the summer. He’ll attend in the morning. The goal is to keep up the momentum that has just started again.

They did offer one amazing thing that I hadn’t even imagined as a possibility. There is a therapy pool at the school. And, because by the time summer school starts he won’t have a broviac line, Patrick’s doctors have given him the ok to work in the pool. It feels like this little piece of normal… my son being able to be in the pool during the summer. Even if it came about in the most abnormal possible way.

Speaking of doctors, we had a follow-up with Patrick’s GI this week. His dietitian came in, too. It’s the first time we’ve seen her since transplant. I wondered if she was amazed to watch him eat a kids meal while we talked. His growth charts look amazing. I think it’s the first time I’ve really looked at one post-transplant. He’s growing at a normal rate. He’s in the 50th percentile.

They ordered some labs to check to make sure that his vitamin levels and overall nutrition are still good as he’s learning to eat on his own, but doesn’t exactly have a traditional balanced diet yet.

Also this week, or maybe the end of last week, I talked to the team in Nebraska about Patrick’s next follow-up with them. We scheduled an appointment in June to replace his central line with a port. (This is why he’ll be allowed to swim, by the way. No more external central line.) We will be going out the first week of June and it will be an outpatient procedure.

I thought we’d have clinic, too, but it sounds like they feel we’re doing a great job communicating by phone and don’t need the extra visit.

So it sounds like we have a game plan for our summer. At least the start of it. Patrick’s last day of school is the last Friday in March. June 1, he’ll have end-of-year testing. June 3, we’ll meet with the school to make plans for next fall. That night, we’ll get on a plane and fly to Nebraska. The next morning, he gets his port and we come home that weekend.

The next week, Brian leaves on a business trip to Norway. And the week after that, Patrick will go to his first day of summer school. He’ll have two weeks on, then off for the July holidays. Then back again. Brian has a pioneer trek with the youth in July and another international business trip in August. And before we know it, it will be time to come back to school.

I’m trying to pull together some materials to keep working on mommy school in the down-days. I’ve let Patrick develop some lazy at-home habits this month but, really, we have a lot of ground to cover over the summer. Hoping that the extra respite time while he’s at school will give me a breath of energy to keep up with all the rest.

Little Heroes

You’ve gotta see this story!

http://www.abc4.com/content/news/top_stories/story/Donor-transplant-brings-two-Utah-families-together/_A0j2PcCfEOkr4N_XWaMmw.cspx.

As you know, Patrick attends a weekly play and music group for children with a variety of health problems. One of my heroes from this group is a little girl named London, or as those who know her call her, Lulu.

Lulu had a liver transplant a year ago. When she first came to our play group, her mom immediately recognized Patrick’s TPN, having been on it herself when she was at her sickest. Lulu is one of the most vibrant, outgoing little girls that I’ve ever met. She and Patrick seemed to have an instant draw to each other.

One other thing they have in common is that Lulu’s family, like ours, is trying to raise awareness of the need for organ donors. Both of us have been active in working with Yes Utah, our local organ donation awareness organization, and in sharing our stories to help encourage people to sign up as donors.

Last night, Lulu’s story was featured on the evening news. A transcript of the story has been published here. (Just in case you didn’t click on the link at the top of this page.)

Please read it, and share it. And if you aren’t already registered, please consider registering as an organ donor.. and make sure your family knows of your desire to be an organ donor.

On another note, we never got a call yesterday inviting us to come up to X-ray, so that test will probably happen sometime next week. I’ll admit, I didn’t mind much. Patrick and I were both burned out from the previous two days and it was a rare treat to get to spend the day at home. Chris, his developmental specialist came to play. Patrick adores this man and LOVES their visits. Then his cousins stopped by for a short play time. And then, after dinner, we curled up on the beanbag movie and watched Cars.

I suppose that that’s only a partially true statement. Patrick was all over the room, but he returned regularly to cuddle with me or to tickle or to blow zrbbts on my tummy. This is the first time Patrick’s seen the movie Cars and, as I had predicted, he loved it. He’d return often to just sit with me and watch a scene or two. He got especially excited whenever Mater appeared on the screen.

And then, after Patrick was in bed, Brian finally made it home from Chicago. There is so much comfort just in having him here. And it was so nice to have extra hands when Patrick pulled his usual trick of picking his central line dressing off during the night so we had to change it first thing in the morning.

Today I’m proudly sporting a new Giordano’s t-shirt that Brian brought back for me. In case you don’t know, Giordano’s is the best Chicago-style pizza chain on the planet. And if I can’t have the food (Howie’s trying not to rub in the fact that he had Chicago-style pizza not just once, but twice this week), at least I can wear the schwag.

When the cat’s away, the mice will….

…Well, the idea was to play. This is the 2nd and last night that Brian will be away on business and I thought that, other than a Wednesday full of appointments, I had a pretty laid back schedule. So far, this past few days have been anything but laid back.

Wednesday morning, right after kissing Brian goodbye, I went to set out Patrick’s morning fluids. They weren’t cold. This was especially concerning as I’d been setting the fridge to colder and colder settings all week and there was snow on the ground outside.

So, as Brian was finishing up his last work before heading the airport, I was scrambling to shop for a new fridge. Thankfully, Patrick’s morning therapy appointment was cancelled which gave me just enough time to hit a few stores before his nap.

After his nap, we went to his monthly appointment with his GI at the hospital. All the news is good. Patrick is growing at a good rate right now… he’s still 50th percentile for weight… just above the target weight for his height. His liver is healthy. He’s about as stable as can be.

The only change we discussed was a change to his antibiotic regimen. Patrick takes oral antibiotics to help keep bacteria from accumulating in his stomach and gut. Only lately, it seems that he’s had more and more problems that lead to stomach upset, vomiting, and diarrhea. So we switched around the medicines a little bit in the hopes that a new plan would make a difference, and then headed out.

We stopped at Sears on the way home to pick up the fridge that I’d picked out. You should have seen the look on the man’s face when I told him I wanted to put it in my car with my baby. Patrick wasn’t too excited about the idea either.

Still, we made it home and got the fridge up to his room and furniture and Patrick ready for bed.

We’d almost made it.. and then, as we were saying goodnight to Brian by video chat, Patrick stepped on the tube that was draining from his stomach and I heard a “pop”… and looked down to see that his button on the floor, the balloon that was supposed to hold it in still inflated.

Thankfully, my neighbor answered when I called and came quickly. It wasn’t easy, but we managed to get the button back in and Patrick comforted and into bed.

Thankfully, today was easier. Patrick and I managed to stay home the whole day with time to help my sister with a paper for school. But I got to talk to the GI clinic several times.

I started it. I called them to talk about how very difficult and painful placing buttons has been recently for Patrick. So first the nurse called back to find out more. Then Patrick’s dietitician called to talk to me about his TPN orders.

Apparently, as Patrick has had more and more stomach upset, and we’ve had to give more and more replacement fluids, his labs have been showing increased dehydration. They decided to try to make some changes to help him be more comfortable. They’re adding another half a liter of fluid to his TPN, plus some electrolytes so that we won’t have to give as much to catch up for what he loses.

Then, this evening, Patrick’s doctor called to talk. We reviewed the plan for hydration, and then he asked about the g-tube.

In the end of the conversation, we decided it was best to check to make sure that there isn’t a space between Patrick’s abdominal wall and his stomach making it hard to get a g-tube in. They’ll do that by taking out the tube, and then putting it back in filled with some contrast. This will let them see if there are any spaces or leaks to be concerned about.

We talked about doing this tomorrow, and if not tomorrow, then sometime next week. The good news in the plan is that they’ve offered to give him a little bit of sedative to help him calm down and not remember the discomfort.

That’s a lot of changes in just a couple of days. Thankfully, I’ve had all the right help come at all the right times. Thank goodness for good friends, visiting teachers and family who’ve been there to help. And I’m sorry for those who may have called and gotten a frazzled forgetful me who couldn’t even think through all the details of this, let alone speak them.

Most of all, thank goodness for a good-natured, patient, loving little boy who has been incredibly cooperative and given hugs at all the right moments.

Brian may rethink his next business trip.

Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.