Friday, July 20, 2012


The added element of this particular hospital stay is Miss Eve. Fortunately we have this amazing backup team of my family, but we still have to, you know, be parents. It's hard. Sophie's choice, as Tom says. Mainly, Tom stays nights with James and I stay nights with Eve, cause that's a little nicer to all involved. But it's hard. I'm used to being with them both all the time, and if I'm going to have to be away from my children, I want to be in Italy or the Caribbean with Tom with no worries. This sucks. Prior to this, I've never been away from Eve for more than a few hours and James for a night here and there, including when Eve was born. With James'...stuff, and living away from family, that is just our reality. And let's face it, I put our kids to bed at 7pm every night no matter what. So we make it work. Sometimes I tell James it's bedtime and it's only 6:30. That's just healthy. Anyway, no matter how you spin it, it's torture. And it's about to get worse. Tom will need to head home Monday to, you know, go to work. He'll fly back in a week or so for a few days, hopefully for my birthday. We have no idea what is in store at this point. We don't really want to be discharged until the diagnostics are done, because to do an endoscopy, for instance, outpatient, just seems inefficient and traumatic. We are in the hospital with an IV in and he's oddly comfortable. Might as well git r done. But before any of that can even happen, we have to continue to get current lab results and former. It is 2012. This just shouldn't be that hard. I mean, I have Genius Scan on my phone. I can scan in 20 pages in a few minutes and email them to anyone. But no. Hospitals still fax. It is for security. Never mind that a paper fax can be read by any A-hole who walks by, while an email can be encrypted. Coupled with the fact that I give a rat's ass who reads any of our medical records means the patience level is at an all time low. I have been calling all of Virginia tracking down records departments and reading the riot act to get everything here as quickly as possible. I even had a friend FedEx my copy of records from our house as a backup measure because each hospital and doctor's office, aside from UVA was being so slow. I am so sad to say that those records arrived before any others. A big thing we have been waiting on are the physical slides from the original endoscopy done when James was 7 months old. Pathology will look at these to determine was precisely was done, how well it was done, and what or if anything needs to be done again. Big deal. And Friday is now over. We were told yesterday that these would be mailed today; they (Dallas Children's) were waiting on something from their department. Live and learn, I didn't ask what. Just assumed it was vital. Today we found out that they couldn't find out their FedEx number. Tom and I both just about lost it. Actually, Tom completely lost it. You see, we own 2 businesses. And my dad has a business. We have FedEx numbers out the ying yang. And since we told them we would have records FedExed, they knew this. So leaving aside how absolutely ridiculous it is that in an entire, enormous, Dallas hospital, no one knew the FedEx number, we still could have gotten this done. Shoot, even if we didn't, we would have gone online and registered for a frigging FedEx number and gotten it done. Anyway, I was with Eve, so it fell on Tom to call the doctors out of a meeting, inform them this was running more inefficiently than the government (I'm sure that went over well), give them our FedEx number, and tell them to overnight the slides immediately. It's hard to even know how to respond to all that, but as they weren't aware of my scathing texts to Tom during those moments, for some reason they think I'm nicer. Funny. They'll learn. All that aside, sort of, James is doing better. His appetite is returning slowly, his poops are still super weird but not as traumatic, and he has not thrown up at all. He is still dehydrated, which is telling, and we are still waiting on other test results to come back. He is in really good humor as long as no one messes with him, just like his daddy. All the children within the hospital are amazing. You can tell the long termers versus the short termers. That's sad and kind of cute at the same time. And as parents, there should be ID for either one. Cause it really does make a difference on how you operate. We've just been in survival mode lately, and I, for one, have sort of been ignoring the fact that we are not in Virginia, we do own 2 businesses, and at some point, Tom will have to go home to operate them. That point is Monday. I'm terrified. I'm so sad to leave Eve who clings to me when I see her and I never want to be from James ever. It all really hit me today as I was leaving the hospital, and as I fully believe in crying privately in a bathroom or elevator, I looked a little tear stained driving back to take care of Eve. Some dude with no teeth in a truck pulled up next to me on Medical Center Drive and asked why I was sad. I was feeling pretty bitchy at this point so I said I was tired as my son was in the hospital. He asked his name and I said James. He said, "well I'll take his name and we'll all be praying for him at the Salvation Army." That's when I looked at his truck: a white Salvation Army vehicle. I was instantly humbled, thanked him profusely, rolled up my window, and cried the rest of the way home. I was reminded that we are not alone in this at all. There are bigger struggles out there and we are more fortunate than most. Way more. And I don't know what is going to happen, but someday, it is going to be okay, and so will we. FaceTime!! My girl, growing up, and playing with a urine specimen cup. Don't worry. It's unused. So it's completely sterile. Crawls into my lap every chance she gets!

1 comment:

  1. Clare, you and Tom are amazing parents and James and Eve are so lucky to have you! You are both so strong, and it's okay to cry and let it out sometimes...that's just plain healthy! I am sending so much love and prayers your way - I can't even imagine how difficult this all is. Praying that your week while Tom is away will be a smooth one and that your family and friends around will be the support and comfort you need. Love you!!!