It could be said that today was not my best day. It started out seemingly ok. Despite the fact that I’d been up several times during the night (once on purpose to switch bags of fluids for Patrick and a couple of other times because of very strange dreams), the day started out quite promising. Patrick woke up very happy. He managed to throw all of the toys out of his crib, unzip his backpack and get out both epi pens, and open the med port on his g-tube letting his stomach drain all over his bed – and all with a smile and before I got myself up and into his room.
Still, he was thrilled that the mess and the fact that he was wide awake meant that he got to go straight to the bath.
We were supposed to have our back door installed today. This “supposed to be” has been happening for weeks now and I thought for sure we’d made it today as the contractor called to confirm before I even had Patrick dry and dressed. Within the hour, though, he called back and cancelled for health problems. And I was ok with it – something I was quite proud of.
I woke up feeling pretty sure I was getting sick. So, with my day newly opened up, I decided to go see a doctor and get some antibiotics before the weekend so I wouldn’t be down sick trying to get into urgent care on the one Saturday that Brian was scheduled to work. Especially since Brian is already sick.
I called and got the last available appointment of the day. Then I called my sister who was available and willing to help. She met me and came out to Patrick’s music group so that I could leave early if it went long.
Well, I knew things were off when we walked into music group because they room was arranged all wrong. The teacher was sick and there was a sub. Still, the kids came and we had fun singing and dancing, anyway, and it ended on time for me to drop Patrick at home and still make my appointment.
The appointment was quick and easy, too, and I thought to myself that I was quite on top of things.
Well, when you give a mouse a cookie…. Or when you give me a successful feeling morning with my family around, I might think it would be fun to go to lunch. My mom came and met us at the closest fast food place with a playground. We ordered lunch and Patrick ate marvelously well, and then got down SO excited to play on the AAAIIIII!! (This is his current word for slide). He even got brave enough to crawl into some of the tubey things, but not through them.
Finally, I said “Ok, just one more time down the slide.” He wanted to go on his belly like the other kids and I thought that if I helped him do it up on his knees a bit, it wouldn’t hurt any of his tubes.
But, alas, before he got to the slide, the clave of his loose lumen (that’s medical talk for the the blue thing on the end of one of this tubes) got stuck in a hole in the playground floor and before I could stop his forward momentum, the line snapped in half.
I kept my cool though and, even with a playland full of watching parents, calmly got his dressing loose enough to clamp off his tubes without even getting any blood on his shirt.
As I went to leave for the hospital, my mom said “Well, you might as well at least let him go down the slide that one time.” Which got me thinking, “Well, why not just let him keep playing?” So, with the help of Grandma and Aunt Marcy, I left Patrick to play tube free while I ran the 5 minutes home to grab TPN, a few supplies, and Patrick’s Woogie (a.k.a. iPod touch).
Along the way, I called ahead to the Rapid Treatment Unit where lines are repaired to let them know we were coming. They informed me that, thanks to RSV season, every bed was full and that we’d have to go to the E.R.
So, after picking Patrick up, I started making calls to see if i could find another option. I’m too experienced of a hospital mom and I know that this week is the beginning of the peak of RSV season and that a standard trip through the emergency department would mean a serious risk of Patrick getting sick.
I tried to call the GI clinic, but they weren’t picking up. So then I tried the hospital operator who was very direct in telling me that until 5 p.m., only the GI receptionist could connect me with the GI on call.
So, after several more attempts, I finally got through to Patrick’s GI’s nurse. I asked if they’d let us come in for a clinic visit with ANY doctor or nurse in the GI clinic and have the line repaired there. She made a couple calls, and came back to tell me that the appropriate way would have to be to go through the E.R.
This kind of hurt my feelings as I wasn’t trying to be inappropriate.. but I did my best to take some deep breaths and refocus myself as I arrived at the hospital. (Yes, I’m confess that I made all these calls while driving into the hospital.)
As expected, the E.R. parking lot was full. So was the entire first level of the parking garage. I got a space only by luck. And I thought, this could spell disaster.
Thankfully, my calls ahead had resulted in the E.R. having a plan and a room ready for us. They admitted us as an outpatient instead of an emergency visit.. a choice I’m thankful for as the difference is a $75 co-pay. And we got to skip triage. They showed us to a room in the far corner of the old section… nice and far away from the contagious patients. I breathed a sigh of relief.
IV team came it was two of my favorite nurses, which helps a lot. The repair went quickly. Patrick was a champion for a kid who only got a brief nap in the car. He even stayed relatively calm when they cleaned his skin with the nasty cloraprep that he is partially allergic and very sensitive to. (We’ve had to start allowing this, as the alcohol swabsticks in all of the dressing change kits in our network of hospitals have been recalled. Yes, I’m working on this problem so we don’t have to keep torturing this kid. But that’s a whole other post.) While they worked, Patrick and I played games on his iPod, sang songs and played peek-a-boo behind the sterile drape that they put over his face.
And then, the line was fixed. The doctor came in to look Patrick over briefly and, of course, to be intrigued and amazed by his history. Then he gave his official seal of approval and sent us on our way.
We left the hospital at 4:30, the beginning of rush hour. But still, made it home safe and sound.
Patrick was exhausted and definitely feeling the effects of his TPN being off. Finally I decided that he needed a nap, even though it was close to bedtime. So I rocked him and sang some songs and tucked him into his crib.
Then I cleaned up the living room and got dinner warming. (Thankfully, when Brian got home from work last night feeling super sick, all he wanted was Taco Bell, so I’d just put the dinner I’d made in the fridge for today.)
Then, I woke Patrick and gave him a cup with a big drink of formula in it. By then, he was surely feeling starved and thirsty.
He sat and drank a day and a half’s normal amount of formula while I got new TPN tubing primed and ready to go. I finished with half an hour left before the glue had set long enough for the repaired line to be safe to use.
Patrick wanted me to connect his TPN and cried when I told him he’d have to wait. That’s a first. It broke my heart.
Thankfully, Brian called to say he was getting away from work at last.. and that distracted Patrick a bit.
At 7:30 daddy got home just as we reached the magic hour where I could run the TPN again.
And then, with my best friend finally home, the tired and sick and lonely and overwhelmed feelings hit all at once and I couldn’t help but cry. I was just plain discouraged by how the day had gone. My best laid plans and oh so productive morning had just snowballed into one of the most difficult jobs of being Patrick’s mom: trying to keep him comfortable and calm when he has to be off his TPN.
I’m lucky to have a good husband who listened and didn’t criticize and didn’t complain about his twice-roasted pot roast cooked to Patrick’s dietary standards (meaning some of the best parts were left out with good intentions of adding them in at the end of cooking, but then abandoned when my day went bad.)
Patrick went willingly to bed by 8:30 and I’ve had a little time to rest now.
I did pretty well continuing to feel sorry for myself.
But then I got to thinking. How do I measure the success of this day? If you measure against my plans for this day, then I am a complete and total failure.
However, if you measure it for Patrick, this was an ok day. He woke up happy and had a great bath. He got to go to music group and a couple of his best friends were there. He got to skip his nap, be spoiled by his aunt, eat french fries and hamburger buns with Grandma and play on the AAAAIIIII!!!. He got to see his favorite IV team friend and give bones to a whole bunch of new people. He got to watch Mater on his iPod and play some of his favorite apps. When he started to not feel well, he got to cuddle with his mom and nap a while in her arms. Then, he got a veritable feast of neverending formula, made special for him roast potatoes, and to top it off, potato chips. (Yup. I gave him a bag of potato chips while I cleared the table after dinner.) He got to be hungry and eat foods he liked to try to satisfy his hunger – something he rarely experiences. And, to top it all off, when he started to feel better, it was on time for daddy to come home. Daddy played with him and even wore a priority mail envelope as a hat just to make Patrick happy. Then, mommy let his choose his pajamas. She let him wear his blue underpants on top of his diaper to bed, just cuz she was tired enough and he was dehydrated enough for it not to matter much. And, at the end of the day, he was safe at home snuggled in his own bed with his blanket and his monkey.
Did I do what I wanted today? No. Did I do everything in my power to make what could have been a bad day for Patrick an at least moderately good one? Absolutely.
Sometimes, that’s the very best I can do.
Patrick Hoopes 