Half Way There

On Thursday we arise on a cool October morning in Palo Alto and drive ourselves over to the hospital. His procedure is scheduled for 8:30 a.m. and that means we need to be there at 7 a.m. We are on time and they take him in right around 8:30, after which Mom and I go find some coffee for Mom and hot water for my tea. I have an appointment with Dr Concepcion at 10 a.m. over at Stanford, which is connected to the children's hospital. I arrive a little early and am in my room waiting to see the doctor right at ten.

It's a good thing I brought some reading material with me because I ended up sitting in that room waiting to see Dr Concepcion for around two hours. One of his fellows came in and asked me a few routine questions like, how am I feeling? any pain?... Good. Not any pain. Fine. So he says that Dr Concepcion will be in shortly. Well, some how Dr Concepcion thought that I had already left. I don't know why I didn't go and find out if he was coming to see me sooner because I must say I felt a little foolish waiting for so long and not at least asking! Dr Concepcion came in apologizing and I couldn't help but accept it because he is a nice man and one of the doctors that I really like and respect.

I was thinking all the while that I was waiting on the doctor over at Stanford that Joaquin would be done by the time I got back. The anesthesiologist had told us that it could be as short as 45 minutes or as long as 2 hours. I'm thinking that he would be in and out quickly - but I was wrong. By the time I got back there it was close to noon and he was still unconscious from the drugs he was given to go to sleep for the procedure. I could tell right when I walked in that something was not right - I looked to my Mom for assurance and she said it was alright, but I didn't really feel like that. All of a sudden nurses were swooping in and around him - one was waving an oxygen mask in front of his face and that was making him very angry because he was disoriented as he was coming out of his sleep. He was very agitated and I kept wanting to hold him, but his oxygen saturation was going down and things were getting a little scary because the nurses are moving faster and Dr Alexander is hovering near the bed.

What had happened was that during the procedure, Joaquin's blood pressure dropped, which is completely normal for anyone who receives anesthesia but not a good thing for kidney patients because that means the kidney is not getting enough blood flow. So to bring his blood pressure up, they pump him full of fluids (around 750 mLs) which caused him to be fluid overloaded. It does not take long for the body to absorb fluid, but it takes longer for it to get rid of it. And when it gets the lungs, it can take even longer for it to be taken off the lungs. They had medicine that they give for the body to release the fluid. So, Joaquin's lungs had too much fluid on them and he was having a hard time absorbing air.

Joaquin is very mad and agitated at this point and so they want to give him morphine - which I am against. He's already been given drugs to be put to sleep and I just want his body to get rid of those drugs and for him to wake up and they want to put more in him! After a while it becomes apparent that they're not going to leave him alone and so he's not going to settle down and he gets the morphine along with another sedative. And that helps and he settles down, but he's still not saturating that air and so they give him a nasal canula - which is a little thing that goes in the entry of both nostrils and pushes air into his body. It doesn't bother him too much and his stats are looking better. But now he's out. After that I break down and a little and asked the nurses how scared I should be because I'm scared! Is he going to be okay? They assure me that he's going to be fine and that this not too uncommon to see - which makes me a little more at ease.

Dr Alexander was confident that he would bounce back and that we wouldn't have to be admitted to the hospital but that he wants him to stay in the PACU for a few hours longer even though the PACU likes to push it's patients out in around an hour - that's what it's designed for: to monitor that patients until they come out of their sedation. I felt good that Dr Alexander was okay to let him go home because he's a pretty conservative doctor and it doesn't matter what I want as far as being admitted to the hospital - he wants what's best for Joaquin and I couldn't agree more. Dr Alexander comes back a few hours later and Joaquin's still not able to keep his own saturation up without the oxygen and so we get the dreaded news: He's going to be admitted.

I call Chris and tell him the news and he's as upset as I am. The thing about all of it is that it could have been prevented had the nurse who put the dressing on incorrectly not have tried to do something that she clearly did not know how to do. Chris decides to take Friday off of work and to drive down to Palo Alto that night. Meanwhile we are waiting for our room on 3West but at the rate at which the hospital works I know we could be waiting in the PACU for hours - which we did.

Around 8:30 p.m. the nurse shut his oxygen off - he was doing fine by himself. They left us alone for the most part and we knew we would be released the next day. I ended up talking to the charge nurse about what happened and just explained to her that my purpose was not to be revengeful but that I just wanted to make sure that this didn't happen to anyone else - or us for that matter. Changing a PICC line dressing is too big of a deal to let just anyone or any nurse change it. I told the charge nurse that I would like to file an incident report. All of this would have never happened and shouldn't have happened.

Oh, and to top it all off, they were never able to place another PICC line. He will either have to have another surgery to place a different type of PICC line or he will have to be stuck with a needle. Luckily, Joaquin's Prograf levels have been steady for over a week now and generally the second month the patient goes down to two blood draws a week versus every day. So I feel like he's at that point. Plus, Chris and I are vehemently opposed to having surgery done because of what happened and what could easily happen again. So hopefully we will keep seeing steady Prograf levels! We are about half way through out 100 days - tomorrow is 6 weeks from the day of transplant!

Saturday Grandpa Johnsen arrived and we picked him up from the airport. He's been helping Mom change diapers. What about me helping with diapers, you ask? Well, when you donate a kidney then you don't have to change diapers either!! Mom and Dad bought Joaquin some very nice clothe diapers as well. We are going through a lot of wet diapers right now and so it's nice to have clothe diapers instead of buying them all the time.

Chris's parent arrived Friday shortly after we were released from the hospital with Grandma Joanne. We all ate a big roasted root vegetable dish with quinoa and salad made by the wonderful Chef Chris. They were taking Grandma Joanne up to see her sister in Antioch, California and so they stopped by again today to visit. So we've had lots of visitors this weekend, but we love it!

Joaquin's been coughing a lot, but not running a fever, and also has a runny nose. I talked with the doctors today but they don't seem worried as long as he doesn't have a fever. If he had a fever they would be worried that either his kidney was rejecting or that he would be dehydrated. We tend to think that it's because he's teething. He's got about six little teeth all threatening to pop out of his gums at once. He seems as though he's feeling good besides the coughing. We also think that it might be from all the water that was on his lungs. We are hoping to make it up to Reno this weekend for Joaquin's COTA benefit which all of our lovely friends and family are helping to put on.

This whole experience the last few days was hard and frustrating because it never should have happened. Another very frustrating aspect of it all was that everyone in the hospital that I spoke to about it didn't seem to be listening to me or didn't care. Only Dr Alexander asked if there had been an incident report filed. It's tough because I don't feel like I should have to divert my energy into an incident report because so much of it is used up by just this whole experience. I don't want the nurses on 3West to be angry with me because I don't want Joaquin's care to be anything less than exceptional. I just feel like this experience with the PICC line is very symbolic for how hospitals and western medicine handles health care: instead of taking the necessary steps to prevent, it only deals with the aftermath. Treat the symptoms instead of finding the root of the problem. Sometimes I felt like I should jut let it go because it's already happened and there's nothing I can do about it now. I guess I just feel like people should be held accountable and responsible for what they do, even if it just means that nurse realizes what she did wrong and hopefully she will know how to do it right the next time after being properly trained or just not doing it all.