Emotional Rollercoaster

Tonight I was talking to Chris about our frustrations with the medical team and how everything with Joaquin and his healing is going along very smoothly, it's dealing with the medical team that makes me feel like I'm on an emotional rollercoaster. I had always thought that it would be the other way around.

Today we went in for a blood draw and eventhough there wasn't technically a clinic appointment today, we stopped by the clinic so that Amy, our transplant nurse, could check out Joaquin's incision sight. It's been a little red towards the bottom of the incision where it goes beneath the diaper since he's peeing so much it's hard to keep the area dry. We were given an antibacterial ointment to put on it yesterday and today it was looking better. While we were talking with Amy I reminded her that I need two meds refilled and we needed to know when Joaquin's appointment to remove the super-pubic catheter would be. So Amy gets on the phone right in front of us and calls Cathy since there is no time written in her notes, just the date when the procedure should be done. I can tell by what Amy is saying to Cathy and what Cathy is saying to Amy that there is no appointment made for tomorrow. Amy says that she will call us when she finds out the time.

Later in the afternoon we receive the call from Amy telling us that they were not able to fit us in - again - and that we were bumped out until Friday. This news makes me very upset, very. We've come to believe that Cathy failed to make the appointment for Joaquin and when she tried to do it today, she was naturally unable to because surgeons are usually busy people. Had she made the appointment last week when she said we had an appointment on Wednesday after she had bumped us from Monday, perhaps we would have actually had an appointment for tomorrow like we were told that we would. The catheter was supposed to be removed two weeks after transplant, Friday will be close to three weeks. When Chris spoke to her she skirted around the question of whether or not she had actually made the appointment for Wednesday and implied that Amy was in charge of our care now, not her anymore.

This just makes me feel like we are not a priority to them when we by all means should be because as long as Joaquin still has that super-pubic catheter in he is at risk for infection, at risk for having the tubed pulled on or, in worst case scenario, pulled out - and then where would we be? I know that they are busy with their patients, but we are patients too! All the way up to transplant I have felt like we are not a priority to Cathy. It's a scarey time and a huge thing that we are going through and to have someone make you feel like you are not important and that you can wait and just be pushed aside is not a good feeling.

I mentioned before that I wanted to let Cathy know how we feel but after all of this, I don't think that I really owe her that anymore. Instead, I plan on speaking with our social worker, Meg, and finding out who are I should be writing letters to about this. If she's doing this to us, then you can bet that she's done this to other families. What baffles me is how she has been able to get away with this for the 15 years she says she's been doing this job for. Why has she been allowed to treat people this way? I just wish for that a little while she could walk in our shoes and she could know what it's like. I don't think that she has any children, but I would bet that if someone was doing this to her or her kids, she wouldn't put up with it.

On a more positive note, Joaquin is thriving. He wants to be so much more active than he is able to be with the catheter in place. He wants to roll and crawl and practice standing and walking and we have to be really restrictive with all of that because of the catheter. He is much more interested in food. Before the transplant, he would hold foods and taste them but when he would bite off chunks of food he would just push them back out. Now he's actually biting things off and swallowing them and taking bigger bites.

Another change we've noticed is that he doesn't throw up numerous times a day like he used to. Before, he would gag and throw up every single day. No more of that - now we just deal with very wet diapers. We can handle that. He likes to copy the words we say. He's using more words like "bye" and "walk." I'll have to make a list of all the words he has now. Overall, he's getting so rambunctious and active, you just know that he's feeling better and that the kidney is doing him justice.

I think that once we're at the point where we are coming down for clinic once and month (and eventually once every three months) life will be so much better mainly because we won't have to deal with the medical teams on a daily basis. It's scarey to have people like Cathy in charge of your child's care or random nurses who don't seem to know much more than you do about how to do things. We work so hard to keep Joaquin healthy and somebody could just come along and mess it all up with one little mistake. Or by putting something off for just a little while longer. In the end, all I hope is that one day Cathy can look back and reflect on how she's treated her patients and realize just how inconsiderate and uncompassionate she was to us and to however many other patients that came before us or after.

Here are some pictures of Joaquin snacking on a nectarine after dinner tonight (and waving bye-bye):