I’ll Take It!


Boy… time flies! There I was planning on writing a post to update our progress at the hospital on Wednesday and now it’s Sunday and I haven’t posted a thing. Let’s just say it was a busy week. I took Tuesday off work so I could be there for Megan’s surgery, but then I worked the rest of the week which made for some long days. Pete and I stayed at home and went to Preschool and work while Leslie and Megan rounded out the week at Children’s Hospital. Unfortunately for me, while I’d love to be there the entire time she’s in the hospital, Megan will have these treatments for 3 days straight every 2 months. Between those 18 days and her regular doctors visits it just adds up to more time off than this guy has, especially when you tack it on top of the 13 days in the NICU that we’ve already had this year. While all of that adds up to disappointment for me, it spells extra hard work for Super-Mom Leslie. Not only does she have Megan alone in the hospital while she receives these treatments and navigates the labyrinth that is Megan’s care, but she also gets to come home to the chaos of what two unsupervised guys can do to a house during the course of a week. That’s not to mention that she was hardly able to sleep on the little fold out bed in Megan’s room at the hospital. On Tuesday the nurse had told us that it was the most comfortable bed in the world to which Leslie had skeptically replied, “Really? ” The nurse then said, nope it’s terrible. I guess honesty is the best policy… sort of.

On the home front, Pete and I did as well as we possibly could considering the circumstances, but the whole operation just runs smoother when the Momma of this outfit is around. We did have some difficulties to deal with though. I’ll go ahead and get my whining out of the way while it still has a chance to elicit some sympathy (before I get to the hospital side of things). Pete and I woke up on Wednesday without any power as there had been some pretty nasty windstorms that night. We made it through that only to wake up early on Thursday morning with Pete falling out of the bed onto the wood floor. He had climbed into bed with me sometime in the middle of the night, so it wasn’t just from toddler bed height. Both of these were compounded by the fact that we were going to hospital every night to spend some time there which meant that Pete was getting to bed about 2 hours late each night. An overly tired 3-year-old isn’t good for anybody! That’s it… a whiny 3-year-old is all I’ve got. What’s that you say… no sympathy? Ok, fine then, but know that it was kind of tough.

Now falling out of bed and dealing with a power outage would have a been a cakewalk for the hospital going Nichols duo. I wish I could report that everything had been super smooth for those two brave souls after my last post, but that wasn’t how it happened. First they had to finish dealing with the insurance issues. They had mistakenly been assigned to the purple team instead of the green team. Let me translate… they had been assigned to the non-Kaiser doctors, so all of their orders from the purple team were denied by Kaiser. Once they were able to get reassigned to the Kaiser team they had to be evaluated and start the orders all over again. After the orders got moving and the drugs were being prepared in the pharmacy they had to try and draw some blood from the PICC line to establish the baseline calcium and potassium levels in the blood. That’s when they realized that they couldn’t get the PICC line to draw. Remember how I had said in the last post that the PICC line had a loop in it, but if it ain’t broke don’t fix it? Well, it turns out they should have fixed it. The line had become kinked which was presenting some problems. They discovered that it was kinked after doing a chest x-ray and getting it evaluated by the PICC line nurses and doctors. They were able to get the line to push medicine in, but not to draw anything out. They began to wonder if they should just get the blood they needed from elsewhere and only give the medicine via the PICC line. They tried hard, but absolutely couldn’t find a vein to use without putting a tourniqet on Megan, which is a definite no-no on a little girl as fragile as Megan. They talked for a while about trying to draw blood from some of the vessels on the side of her head, but then decided that they wouldn’t be able to get enough blood out that way (Phew, that would have been creepy). Then they asked the nurses to do a heel stick to get the necessary blood but the nurses banded together and flat-out refused saying that they know how hard they have to squeeze the foot to get the quantity of blood needed and they weren’t about do that. It was then suggested that the PICC line nurses might be able to back the line out enough to remove the kink, but they said absolutely not. They were rapidly running out of options. The last-ditch effort before going back to the drawing board was to try a power flush of the line to try to straighten out the kink from inside. Luckily that worked and they were back in business. In the middle of the afternoon on Wednesday they were able to start the treatment about 26 hours after we thought that we would be able to. That meant that instead of a 3 day stay Megan got a 4 day stay. I guess all in all that’s not so bad.

Once they got the medicine flowing things smoothed out quite a bit. She didn’t have a very adverse reaction to the medicine like they had suggested might be the case. Thank goodness! She may have been a little uncomfortable and achy, but she seemed to cope just fine. Aside from the regular sort of hospital glitches everything went well from that point. After a few nights and poor sleep and some bad hospital food they were ready to head home. They did hold Megan for an extra few hours on Friday afternoon because her blood calcium had dropped too low after her last infusion, but it was only a short 3 or 4 hour delay. They were home in time for dinner on Friday night, which was good because Pete and I were definitely ready to have them back.

Now that we’ve cleared the hurdle of the first infusion we have a clearer picture of what we have in front of us. We did learn that Pete won’t be able to visit Megan during the next couple of infusions because non-patient kids aren’t allowed on the floor during flu season, but we’ll cross that bridge in December (one day at a time). Knowing what some of the pitfalls are, we’ll also have a better idea of the questions to ask in the future. The next time we’re in they’ll be able to install the medi-port, which should hopefully be our last surgery for a while. After that we’ll be able to go right up for the treatments which will take away the scary general anesthesia part of the ordeal. Anyway, we’re off the races. I did unfortunately break Megan’s finger this weekend, but on the bright side last weekend it was a leg so I’m getting better (I doubt Megan misses me while I’m at work). We’re really hoping that the Pamidronate will get in there and do what it’s supposed to so we can slow down all of these fractures.

Finally, we got the good/bad news that Megan will probably qualify for a medicaid waiver that will pay for a lot of the things that our insurance isn’t covering right now (like some of the prescription cost, her oxygen, and the pulse-ox meter that we were denied). That’s the good part. The bad part is that the waiver is a life limiting illness waiver for kids who are not likely to survive to adulthood and she will more than likely qualify. It’s wonderful because the financial help for some of the medical expenses would be greatly appreciated, but it’s also like a kick in the gut. It’s not easy to look into a pair of big blue eyes and imagine watching them close for the last time. It’s not a thought on which I enjoy dwelling. I don’t know how any of this will turn out, but I do know that we had a fun weekend full of smiles and laughs. I’ll take it!


3 responses »

  1. My thoughts are with you during this trying time. I have met children and young adults with OI at the annual LPA convention, and have found them to be full of spirit. My son, now 28, has a form of dwarfism and I remember those first months of doctor appts, surgeries, and sleeping at the hospital. He is now a college graduate, working full time with children with special needs. Best of luck to you and Megan.

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