Blowing Raspberries and Wasting Time

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It’s been a very slow day today! We’re only half way to where we thought we’d be at this point. First off, we got to the hospital as scheduled at 6:00 am without too much drama, although Les had let her car run so low on gas that it was sputtering and the check engine light came on before she could get to a gas station (We had to spice it up a little). After a couple of gallons to keep us moving we made it to Children’s Hospital. The check-in process was smooth and before you knew it we were in the surgery wing in a pre-op room going through the same ten questions over and over again. They just have to triple and quadruple check to make sure that they don’t accidentally amputate a leg when you only came in to take care of a rock in your kid’s ear (We actually saw a kid in for surgery today because of a rock in his ear). Anyway, once we told them that we thought that Megan’s right femur might be broken (compliments of yours truly), red flags went up and the whole process came to a screeching halt. Apparently, while Pamidronate does a great job keeping the bones from breaking, it also can keep severely broken bones from healing. Before we did anything they wanted to make sure that her leg fracture wasn’t so severe that we shouldn’t get the infusion since putting in the PICC line to be able to receive the medicine was the whole point of the operation. So we took a break and went down to Radiology for x-rays and though we got some mixed results depending on who you talk to, it seems like there was indeed a small fracture in her femur (broken bone #17 or maybe #19… of the stuff that we know about). Anyway, whatever number broken bone it was didn’t matter because it wasn’t severe enough to keep us from doing the first infusion. Great! We were back in business.

From that point it went pretty quickly and within an hour or so the surgeon was coming out to tell us everything was an overall success. She said that Megan didn’t seem to like the anesthesia terribly well and there was a very fine line between her waking up and going too far under. Also, there’s a loop at the end of her PICC line, which isn’t great, but the thing seems to be working. They really like to get the PICC line running perfectly straight and stopping just above the heart, but they decided if it ain’t broke, don’t fix it. Her little skin biopsy was on her stomach near her belly button and that piece went swimmingly. We then went back with her to the recovery room, which was a short stay of only a half an hour. Then we headed up to her room (with a view) where she’ll be staying for the next few days.

That’s where things hit a wall. There wasn’t any one major item, but we just weren’t making any progress. It took 2 hours for a doctor to come by and clear Megan to eat again. It was well after 1:00 pm by the time we got that news and she had last eaten at 4:00 am. If she had been like Pete she would have gnawed her own foot off for necessary sustenance, but she seemed pretty laid back about it all. Once we got to feeding her again the next step was to start the infusion. It took forever to actually get the infusion ordered, although I’m not sure why as we’ve known that we were going to be doing this for a month and a half now. I guess that’s just the way it goes in hospital land sometimes. We finally got the order for the infusion, but now there’s a snag with Kaiser. Children’s isn’t a Kaiser hospital so this sort of thing happens often. We have a case manager who is actually very helpful and who’s always aware of what’s happening before we get there, but somehow that never seems to make a difference. I’m sure one of these days we’ll get all of that stuff ironed out and everything will start operating more smoothly.

While I’d love to offer a conclusion at this point, I just don’t have one. The infusion still hasn’t started though hopefully it will soon. Pete and I came home for the night so it’s just Les and Megan at the hospital. With any luck I’ll get a call soon that everything is moving forward. Perhaps tomorrow I can offer another installment of the saga of Megan’s Pamidronate Infusion #1 without nearly as much drama as this one seems to contain.

Today, like many of the days in the last few weeks, we’ve continued our life schooling and character refinement.  We’re learning lots about patience. We’re learning even more about having faith and walking one day at a time. We’re also learning some more unique lessons like if you blow a raspberry on the stomach of a baby with a bunch of broken ribs your wife will yell at you. While that last one is not as broadly applicable as patience and faith it’s still a good one to make note of in case you ever find yourself in that situation. Contrary to how this post may make it sound, we’re really still having a good time here in Denver. We had an especially fun scavenger hunt this past weekend and I’ll have to share some photos from that outing when I get a chance. Keep the prayers coming and I’ll do my best to keep everyone posted.

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2 responses »

  1. I recognize that roof top view! I remember reading the beginning of your story on another blog, and she recently posted a link to your blog, so I’ll be following along. My daughter is 3 and has Down syndrome. We live in CO, but not in Denver, so we travel to Children’s for PT and the Ds Clinic.

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