Take A Deep Breath

It's been a few days of uneventful bliss. Joaquin has been making up for rest he needed and lost while in the hospital. Cathy had told us that we shouldn't go into any enclosed area like supermarkets, restaurants, malls, etc but that outdoor places are fine. So once he gets the catheter out I'd like to make a trip to the ocean again. He still has his super-pubic catheter in so we are still trying to take it easy - but thankfully that comes out on Wednesday. We all seem to agree that it's time for the catheter to come out, the doctors included. He been getting his old strength back and wanting to move around a lot more but is constricted because of the catheter. He can't sit up because it's uncomfortable, but he can stand, so he's been working more on that.

Today we had our first clinic appointment. Transplant clinics are every Monday and Thursday, but once we're a few more months out of transplant we'll only be seeing them once a month like we were doing with dialysis clinic. But for now we are going twice a week. It started out as an early morning because we needed to be at clinic before 9 o'clock so that we could have blood drawn before we gave him his Prograf. Prograf needs to be given on an empty stomach so that his body can absorb the full effect of the drug. They want us to get blood drawn before we give him his Prograf, which is at 9 o'clock. Keep in mind that Cathy told us that it was to be given promptly at 9 o'clock, not any sooner or any later.

We arrive to cinic at about twenty to nine. We get signed in and we are waiting and it is quickly approaching 9 o'clock and I remind the receptionist twice that the medicine needs to be given by 9 o'clock so we need to have the blood drawn. Cathy gave us specific instructions to go to the clinic instead of the day hospital to get blood drawn, otherwise we would have gone there first before coming to clinic. Nine o'clock comes and goes and we finally get in a room, but the nurse wants to weigh him and take his blood pressure. It's fifteen minutes after nine o'clock and I finally ask to talk to the doctor about this because I'm getting a little worried. I'm informed by the nurse who talked to the doctor that he'll be fine waiting while another nurse comes to draw him blood. Finally, at ten to ten, his blood gets drawn and we can give him his Prograf. This just proves to me that apparently it does not matter if the medicine is given a little after nine o'clock, although I will always give it on time.

We meet our new transplant nurse who will replacing the dialysis nurses that we have been working with up until transplant. She's very nice, but she's asking me questions which me question whether or not she's actually a nurse and/or how long she's been on the job for. This in combination with the frustration of the whole delay this morning has made me a little irritable. I finally explain to the nurse, Amy, why I'm so frustrated and upset. It's very important to us that he's given his medicine on time, so it's a little frustrating and scarey that it's not that important to them. We are told one thing by the transplant coordinator and then shown another thing by the renal doctor and nurses. The whole morning felt like a whole bunch of dawdling on behalf of the renal team.

The next thing on our agenda for the day is to go and get a zenopax infusion - which is another anti-rejection medicine that he'll receive a certain number of treatments of over the course of 9 weeks. The first one was the night before transplant and the second the second week post transplant and so on. We were told that this would take an hour. Our appointment is for 11:30am - we arrive a little before. The nurse needs to get vitals, again. She tries to get his blood pressure with a machine "that's just doesn't work to well on babies." I said something how it's funny how they should have a machine that doesn't work well on babies when they are a hospital for children, which includes babies. She said something like they don't have many babies down in the day hospitals, which I find hard to believe.

Around noon the nurse is still dawdling around doing "vitals" when I ask if we are going to get started soon. So we start. At some point after the blood draw in the morning from the PIC line, a little blood oozed from his PIC line site. The nurse becomes aware of this after the treatment is over and so she wants to call the home pharmacy team to find out if they want to re-dress the site. It's close to one o'clock at this point and we are ready for our day to be over. Fifteen minutes go by and she comes in and says she's going to try calling a different number for the home pharmacy team because she dialed the wrong one. Of course, home pharmacy wants to re-dress it. So the two nurses come in to do the job and apparently a nurse up on 3 West who thought she could re-dress PIC lines didn't do it right. She did it wrong and it caused the nurses to pull his PIC line part way out. So, now after all of that they want to do a chest x-ray on Joaquin to see where the line is at. It's now right around two o'clock. The nurse tells us that we are going to have to go get the chest x-ray and then wait a"few hours" for the results. By this time I had reached my breaking point.

Sometimes I feel like hospital staff forget that patients are humans too. That although we come to them to help us heal ourselves or treat our illnesses, we also have lives outside the hospital. Would they like to spend their whole day in a hospital? I don't think so. There was no reason for us to stay await the results from the chest x-ray, none. There's nothing they would do about it anyway because the PIC line is in. I didn't think we needed to stay. We live practically right across the street from the hospital and we are coming back tomorrow. If I hadn't said anything we would have had to wait at the hospital for the results for no reason for who knows how long. And some people would do that and not question it.

I know that doctors and nurses have more medical knowledge that I do, but sometimes I walk away from appointments feeling like I have more common sense. They may do the research, read the books, see the patients, but they don't live our lives. They are not in it. They are on the outside looking in. And they are human, therefore they are prone to error. I know Chris and I watch the nurses and doctors who take care of Joaquin carefully. We have worked so hard to keep Joaquin healthy because it's our lives that will be disrupted by an illness or complication; we have more at stake than them. It's a job no matter what way you look at it. They don't have the same invested in it as we do. And we know our children. I was talking to a mother who lives at the Ronald McDonald House whose little boy is in the hospital currently recuperating from heart surgery and she was giving the nurses suggestions and teaching them certain tecniques that she had learned from another hospital. Sometimes I feel like we know more about certain things because we are living it day in and day out. There is no break, it is a 24/7 job for us. And we love our children fiercely.

Today was very stressful and frustrating for us. I was so angry at times. I needed to remind myself to take a deep breath. The thing is I don't want to bring any more negative energy into the world than there already is. When you're feeling bad and you unleash that on someone else, chances are that will make them feel bad and they'll go take it out on someone else. And a wave of negativity is created. But at the same time I also don't want to sit and take it.

If I've learned one thing from having Joaquin in my life, dealing with hospitals, and just being a mother, it's that you can't take no crap from no one. As a parent, I am my child's voice and advocate - if I see something they're doing wrong, it's my responsibility to say something. Sometimes it's hard to find that balance between being a parent involved in their child's care and being non-compliant and just difficult. I don't want to be mean to anyone, but I also don't want anyone to think that we don't expect anything less than the absolute best care and treatment for our child. No one should expect anything less than the best, but unfortunately that's not the case all the time.