Day by Day

A mama blogs the journey to transplant and beyond...

Friday, August 25, 2006

Life Changes

It's a go. After finally calling Cathy myself today around 11:30am I got word that my blood work came back fine exept for one little abnormality which didn't really mean much. The PTT was fine and Cathy said that she just needed to call Dr. Scandling and, "give me an hour and I'll call you back." I should have known better by now because after waiting for two hours, I called her. "Oh, I was just about to give you a call," she says. Sure you were. Anyway, Dr. Scandling said he didn't see any problems with anything.

Tomorrow we will call admitting around 9:30am to find out if they have a bed ready for Joaquin or when they will have a bed ready and when they want us to come in. Hopefully it won't be until later in the day, but who knows. Then I need to be there no later than 11:00am on Sunday morning. The surgery will take place Monday morning. I will go into surgery at 8:30am and Joaquin will go in at 10:00. Donor surgeries usually take about 3-4 hours and transplants around the the same time, but with an infant it will probably take a little longer.

I think by the time I finally heard that everything was fine and ready to go this afternoon, I was so annoyed and angry by the fact the Cathy does not ever call me back when she says she will that I didn't have the reaction I thought I would when we found out it was all good. Chris said he was a little emotional after I told him the news. I'm not sure what to feel at times. I feel excited sometimes, scared others. Which is all normal, I'm sure.

I was thinking this afternoon that life is about to change for us on August 28th. By this time next week Joaquin will have a good kidney and will still be in the hospital, but he will be done with dialysis. Got me thinking about how significant life changes happen to people daily - you could be in a car accident and suffer life altering injuries or you could be barely scraping by and win a $100 million dollar lottery. The difference for us is that we can see it coming - we know it's coming. Joaquin's birth and what we went through right afterward was life changing (like the birth of any child), but we had no idea what we were in store for - and somehow I feel like that made it easier for me to deal with it. But I also think it made it all go a lot slower. I'm hoping that since we know what is about to happen and we have a good idea about how long he'll be in the hospital for, it might make it go faster. And this time I'm able to approach being in the hospital differently. I don't like hospitals. I don't like nurses coming in every four hours to bug us (although I know it's their job.) I worry how Joaquin will react to the new environment, but it seems like everytime we go somewhere new I worry about how he'll react and he doesn't seem to notice - he takes it all in stride.

I also wanted to say that if there's anyone who you might think would like to keep up to date with all of our ongoings, then please pass this blog along to them. A few people have asked and I have no problem with it.

Thursday, August 24, 2006

Waiting here in limbo

Mom arrived in Reno on Sunday and we drove down to Palo Alto on Tuesday in the early morning hours only to find out that while Joaquin has been given the clearance and go-ahead for the transplant on Monday, I have not. It seems that all of my tests have come back "perfect" except for my PTT factor - a test that measures clotting time in plasma. It appears as though it's a little on the high side, the normal range being 29 and mine being 35 - which isn't too high, but the adult nephrology doctor, Dr. Scandling, is "conservative" and will not give me the clearance for the transplant. I've had this test done three times - the first it was high, the second normal, the third high, and now we are waiting for the fourth. So we were given two choices - 1) we could go ahead and act as though we are doing the transplant on Monday and wait for the blood work that they are redoing on me in the hopes that everything will clear but knowing that everything might not clear and that we might not hear back from the blood tests until most of the family has arrived and if everything does not clear then we will not be doing the transplant for another two weeks or 2) we could just postpone the transplant for two weeks until September 11th. At first we thought the blood work might not come back until Monday - the day of transplant - but then found out that it would be back today, Thursday.

So Mom and I decided to stay thinking we would hear from Cathy, the transplant coordinator, today. Unfortunately Cathy is not very good at getting back to us when she says she will. I find it very unprofessional and inconsiderate, to be honest. It makes me feel like she doesn't feel like I am part of this team. It would not be hard at all for her to just make a quick call to say that the bloodwork was back or wasn't... What I think is going is that they received the blood tests back and they are waiting on the adult nephrologist to see them. But still - she knows that we are waiting here for her to call. Our families are waiting, we are waiting. So I plan on addressing this issue of telling us she will call us and then not calling. And I also plan on either writing a letter to someone or explaining our frustrations in a patient satisfactory survey that we receive after our doctor and/or hospital visits.

Otherwise, I am feeling very ready for this to happen. I am ready. But we are waiting in limbo at the Ronald McDonald House in Palo Alto, waiting and waiting. Chris and I have talked about how if something were to come up and the transplant could not happen for whatever reason, it is meant to be and I will be fine if the transplant gets postponed - it's meant to be either way.

In other news, Joaquin is cutting his top two teeth and has been a wild animal the past two days. Coincidence? I think so.

Tuesday, August 15, 2006


We are quickly arriving at the day for Joaquin's transplant. It is a tough decision for us because we've always held out hope for that kidney to work... and like Joaquin jin shin jyistu healer, Kathleen, says: "Hope is one of the hardest things to lose."

It's also a tough decision beacuse Joaquin looks like he's doing so well, granted he is on dialysis. We've always wondered what it would be like to take him off all the meds, the machines, the nasty concoctions that we put down his ng tube. What if all of that is only exacerbating the condition?

My scepticism in the medical institution and the fact that it is common practice to only treat the body, the symptoms; not the root of the problem, the mind, also plays a rather large role in all of my thinking. Because I'm a big believer in the mind/body connection. I believe that many of the dis-eases that we humans deal with can be traced back to a "root" cause - like a traumatic childhood even that was buried deep within the psyche so much so that it manifests itself as a physical condition ailing the body so that the mind must finally acknowledge it and begin dealing with it and healing. Let the healing begin...

And so I've spoken with different healers who deal with the mind/body connection and work with the different energies in the body. What I wanted to hear from them was that they could perform a miracle for us, that they could give him an herbal remedy, a homeopathic cure, anything. Instead what I pretended I didn't hear was that Joaquin's kidney problems are something that started before birth. It's not like he was born with normal kidneys and then his ureters blocked and then his kidneys were damaged... they were damamged from the beginning. Didn't have a chance really. But I believe in miracles and hope is what kept us afloat this past year...

So then I began to realize that the "westernized" medical institution is a blessing in itself. Joaquin would more than likey not be here with out it - and so I give thanks for that. But I would still like to incorporate what I've learn and what I believe in as an important element in healing the body - the mind. And I'm not going to be giving up my homoeopathic, naturopathic, essential oil, herbal concoctions - instead I'm going to pair them together with western medicine. And don't forget about the power of prayer.

It comes down to the fact that we could wait on the transplant and see if in fact his kidneys decide to work. To be honest, I don't think they will and so that is my driving force in going through with the transplant. Joaquin needs and deserves a good kidney. The fact that he's in excellent health only means that the transplant will go that much better. And I need to remain positive in this direction we take because I also happen to believe in the power of positive thinking. Joaquin will be fine. He will be. He just has to be.

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