Catching A Break

It's late. I just got home from the hospital a little bit ago and decided before I went to bed I would update the blog since I haven't done so in a while.

Today we had clinic, which was uneventful. Joaquin's white cell count is down again and has been since Friday. On Friday night I receive a call from Dr. Su telling me that his white count is down and that they're going to need to give him a shot of GCFS to persuade his bone marrow to produce some more white cells. This medication is still pending with insurance, meaning that we're not quite sure what our prescription insurance is going to do about it. We need to send them more paper work because it seems as though they lost the prior authorization forms for this medication as well. The GCFS shot is not cheap if you're paying out of pocket like we have to: it's $279 per shot. So on Friday they told us that we would get labs in the morning on Saturday and then depending on what his white cell count was we had two options: 1) pay for the shot out of pocket - and more shots if needed, each running $279 or 2) admit Joaquin to the hospital so that our insurance would pay for them. As long as Joaquin is admitted to the hospital, insurance will pay for meds without prior authorizations. Now, don't ask me why they would rather have him hospitalized and pay thousands of dollars for being a patient when they could just make it easier on everyone by not making us jump through all these bureaucratic hoops. Chris and I checked our funds and made sure that we would be able to pay for the shots while awaiting either reimbursement from insurance or COTA and still afford our rent and other necessities. It was a tight one, but we decided that we would rather be (temporarily) out the $279 rather than admit him to the hospital. Dr Su said that usually when kids need these type of shots, they need more than just one - usually three (you do the math) and she knew that would be getting a little pricey but she ended up talking with the pharmacist and the dose that is in each shot is enough to cover two days worth of medication, so we were covered for the weekend and didn't have to go in to the hospital. Instead we had a lovely time with our good friends Aaron and Kelly.

I knew that Joaquin would probably need another shot, but I figured as long as we get through the weekend we'll figure out what to do on Monday, today. So at clinic, towards the end, I mention to Dr Wong how he still hadn't received his xenopax infusion that he was supposed to get last Monday but didn't because he was running the fever and had the UTI. She seemed a little alarmed and thanked us for reminding her. Amy, the nurse, came back in and said that the day hospital was completely booked up this week and that we would possibly have to be admitted to the hospital to have the xenopax administered. When we do it in the day hospital, it takes 15 minutes. Amy said how we could probably just go the hospital, get it administered and then leave. I knew better. That's not the way it works with the hospitals or the insurance companies - I knew we'd be spending the night. And we are.

The xenopax may only be a quicky little 15 minute deal, but it must be given via an IV. So that means trying to find one on Joaquin - which at this point is close to impossible. We've been doing finger pokes for blood draws because his little veins are shot. Luckily the finger pokes work and Joaquin seems more mesmorized by the bright red blood coming out of his finger than the fact that he's having his blood taken, so it all works out. So tonight by the time they get around to getting the orders from the doctors all set up, it's around 10 o'clock before they start coming around to do the IV. The first nurse we told right away that his veins are shot and that they've been having the best luck with putting the IV in his temple - but she didn't seem too comfortable with that. She tried twice and then they called in the OR anesthesiologist who gave about four or five half-assed attempts and gave up. We were about to give up and wait for the morning so that we could have the same nurse who put it in his temple that last two time do it and pray that she was even on tomorrow, but our nurse mentioned someone down in the PICU who did a good job. She came up and got it on the first try on the inside of his wrist. By this time it's a little after midnight and Joaquin is in good spirits in between pokes - this nurse comes in and just has this air of calmness around her - maybe it's confidence - and I just had a good feeling about her. We were all so relieved. I didn't want to wait until the morning because that would mean that much longer we'd have to stay in the hospital tomorrow. So hopefully we should be out in the late morning tomorrow.

I feel like lately we've been hitting all these little bumps in the road to going home. It's seems rough but then I realize that it's not like it's his kidney having problems, so I'm thankful for that. I just wonder sometimes why we were chosen to go through this - I try and make sense of it and it's really hard. I realize that I may never know. I try and see the lessons learned but sometimes it's hard to accept it all as lessons learned when it's my son's health and well-being that's at stake. How could a God be so cruel to make me learn some life lessons by way of making my son go through this? Or perhaps it's Joaquin's that he's got to work out and go through and I'm just along for the ride. He picked Chris and I to be his parents - he must have seen something in us.

But sometimes I just want to catch a break. I felt like tonight we did when the nurse finally placed the IV after almost 8 tries. It's these minor victories - placing an IV or getting a medication authorized at the last minute so that we can be released from the hospital - where I catch my breaks. Where I get a fleeting sense of excitement that maybe things will be alright and it's not all just uncertainty on my horizon. Where I feel like someone is watching out for me and making this go our way for once. Sometimes I have to step away and remember that it's not me with the health problems. I'm so caught up in Joaquin because he's so young and depends so heavily on me that it feels like I'm the one who was on dialysis, and had a transplant... I feel it all so acutely - probably because I'm a mother, too. Sometimes I just wish I could come up for air. It's hard to get perspective on a situation when you're in the middle of it. But I feel like someday we will catch our break and I will come up for air. I look forward to a time when we can look back on this and just barely remember what it was like to be going through all of this. But I hold no regrets about bringing Joaquin into our lives. I feel blessed to have been chosen by Joaquin to be his mama. It's all for a reason even if I never figure out what that reason is.

All this weekend Dr Su talked about us going home and today Dr Wong mentioned nothing of it until we brought it up. It's all an issue of having a pediatrician all lined up (which we do), a compounding pharmacy (working on it), and a lab to have blood drawn at (already have.) So now it's just a matter of getting everything in order back at home and soon we will be there. We only have a few more weeks to go.