Day by Day

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

Thursday, September 28, 2006

Giving Thanks

I've thanked everyone for praying for us and keeping us in your thoughts and prayers, but there's more going behind the scenes of the Kidneybeanboy productions. Currently a group of our close friends are putting together a campaign through an organization called COTA - Children's Organ Transplant Association ( It provides fundraising assistance for children and young adults needing life-saving transplant and promotes organ, marrow, and tissue donation. You can visit their site to learn more about them and if you click on "patient campaigns," and find Joaquin's campaign. We only recently got our campaign up and (not completely) running, but I feel so blessed to have the great team members who have graciously given their time and energy into raising money for transplant related costs for Joaquin. Meredith Richmond is the campain coordinator, Bob Beaudoin is the trustee, and Brooke Noel is the media coordinator. Many of our close friends are also involved - you know who you are. Right now they are working on throwing a raffle and a concert to raise money that is scheduled to happen October 15th.

So I wanted to take this opporunity to thank everyone who is involved in the campaign and thank them from the bottom of my heart for everything you've doing and everything that you're doing. It's humbling to ask for help from people but always know that we would and will do the same for them.

And my Mother, who has also been here to help both Joaquin and myself through transplant and even before transplant, when Joaquin was born. She's taken off the time from school to be out here with us, as well as travelling well over a thousand miles - which means she's that far away from my Dad, her Mom, and her friends. Thanks Mom. We really appreciate all you've done for us.

Today it has been one month since Joaquin's transplant. It feels like it's been a lot longer. At times I have to remind myself that we are done with dialysis. Like my Mom has said, it's like I'm disappointed that I don't miss dialysis more. It's not that I don't miss it, I guess I was just expecting this huge change or difference. I think once I've returned home to Reno then maybe I'll notice. We had a fire alarm go off Wednesday morning around 7 a.m. - someone's waffles got a little too hot and so everyone in the RMH was evacuated into the surrouning parking lots in their finest nighttime attire. I remember thinking at one point that had this happened a month ago or when we were here last year what would I have done because he would have been hooked up to the dialysis machine. I had always been prepared in the back of my mind for if something happened during the night while Joaquin was on dialysis - what would be our escape plan as far as getting him off the machine without risking infection. But thankfully that never happened.

Tuesday, September 26, 2006

Revival of the Purple Sling

Early Monday morning we woke up to get ready to go to the hospital for blood draws and clinic appointment. The walk over to the hospital in the morning is always very nice because the weather is cool and I always feel like a brisk walk is a nice way to start my day.

The appointment was fine; nothing new, just a few medicine changes. He is on Lasiks, which helps him pee - and by the weight and swiftness with which he wets those diapers, he doesn't need much help. His creatinine has gone up a little bit, but they think it's because of the Lasiks. Every time we go in they back down on the number of times we give it a day. When we were first released from the hospital it was every six hours, then it was every eight hours, then it was every twelve hours, and now it is one time a day.

Monday we also had another xenopax infusion (the anti-rejection med that he's given over 9 different treatments in the day hospital). I don't know if you remember the last time we did the infusion - it was a nightmare. Well, this time they said that the infusion would take 15 minutes and then he would have to be observed for 30 minutes. I was a little shocked as I had prepared myself for the infusion itself being around an hour and I asked the nurse if this time was different and she looked like she didn't have any idea of what I was talking about. She said it's usually always like that. I don't know what was up with the nurse we had that day, but Mom said that she remember looking at the machine that was dispensing the medicine and that it would say that it had about 10 minutes left, the nurse would come in and mess with it and when Mom would look at it again it said 15 or 20 minutes left. We think she didn't know what she was doing.

Joaquin also had to have his PICC line redressed because it was just down right nasty looking. I walked into the room after talking with Chris for a long time and saw someone redressing it and I was about to remind them to please be very careful when I noticed that it was the nurse who had actually taught us how to care for the PICC line and I instantly felt at ease. And the thing is, she did it by herself when every other time I've seen it redressed there are two nurses there, one to change the dressing and one to hold Joaquin down. She did such a great job - she definitely knew what she was doing. Finally! We get someone who knows what they're doing!!

We are still riding the Prograf rollercoaster, though. His Prograf level has been steadily increasing and today it was way too high - 19.5 when they want it between 10-12. He was on 4mLs and I think that is too much. I'm betting that they'll settle right around 3mLs. Part of me wants to say that I feel like it will be 3mLs, but really what do I know? I have to figure they have a method to their madness.

Today I was talking with a mama who is staying here at the RMH with her teenage son who had a kidney transplant on September 11th. Looking at her son walking around I would have never guessed that it had happened so recently. She said that they were just going about their business on Sunday the 10th and that night they received the phone call from the hospital saying that they needed to pack for two months and leave in an hour. The next morning, Monday, he was taken into surgery. I talked to him a little bit about it and asked how he was feeling. He shrugged him shoulders and said he felt "good," and I asked if he felt better than before and he said he definitely did. Every day he is required to drink 4 liters of water over the course of 14 hours. She said the kidney he received came from a 220 pound man who was 6 feet 5 inches tall and that when he is standing up you can see the outline of the kidney through the skin on his abdomen. He's a pretty skinny kid, though, from a restricted renal diet. It was interesting to compare our experience with the mama of the teenage boy - similar except the age difference.

Every day it seems like Joaquin is eating more and more. Before transplant he would try things, but he would just push it back out. Now he eats and then swallows it! We are so proud of him. Last night he ate almost a whole polenta patty by himself and when we made burritos later he snacked on some refried beans and loved them! He was bouncing up and down in his high chair and pointing to the beans. He's also a big fan of Veggie Booty, Snapeas, crackers, bread, fruits, steamed broccoli... Pretty much anything. Whenever I go to the kitchen to grab something to snack on, he's gotta have something too.

Another minor milestone for us is that I've been feeling good enough to carry Joaquin in the purple sling. And I love it. The way that he sits on my hip and wraps his little arm around my arm seriously makes my heart melt. Tonight he was sleepy pretty early because he didn't nap too long this afternoon and he fell asleep in the sling. Even though he was getting heavy, I didn't want to put him down because it felt so nice to have him sleeping in the sling and to just have him that close to me again.

Saturday, September 23, 2006


We finally made it out to the ocean and it was beautiful and relaxing. It was only about sixty degrees there and it was overcast, as you can see in the pictures, but it was great. Joaquin saw the ocean, pointed, and said, "wawa." Yup, that's right, that's a lot of water, Joaquin. There were birds flying around and some were perched on the rocks. Joaquin pointed to those and we practiced saying "bird." As we drove back through the valley in between the hills that separate the coast from the metropolitan areas there was an actual place where the fog stopped and it was bright and sunny. Looking back I could see the fog hanging over the hills and tapering out to where it met the warm air.

Although the post will probably say that this was written yesterday, I'm actually writing on Sunday night. This morning was the first time that we didn't have to go in and have Joaquin's blood drawn because his Prograf levels were right in the targeted range of 10-12. If they see two days or more of the Prograf at the levels they like, then we have a "holiday" from blood draws. So we all got to sleep in this morning. It was a nice break and a pattern I'm hoping to see stay this way.

Last Thursday at clinic I was asking Amy when she thought we'd get to the point where the Prograf level would remain consistent and we wouldn't have to be doing blood draws daily and she said that with babies they fluctuate and in older children they see them level out sooner. They're not really sure why, but that just seems to happen that way. In Joaquin's transplant manual it states that we would only have to be doing daily blood draws for the first 2-3 weeks post transplant, but we have passed that time. It's not like it's a big deal. Usually we just get up around eight o'clock, get ready, start walking over to the day hospital at nine o'clock, get about ten or fifteen minutes later - it's a nice morning walk. Joaquin still has the PICC line in his arm, or the line that is in his veins through which they can draw the blood without having to use a needle. It's almost a luxury.

Every week the dressing must be changed. The dressing consists of a little foam disk about the size of a quarter that goes over the place where the line is inserted into his arm. Over that there is a big piece of plastic to keep every from being exposed from the elements of babyhood. Every time they change it, because we are not able to, they end up pulling a little more of the PICC line out of his arm. Once it's pulled it can not be pushed back in like you would think because it's been exposed to germs and to push it back in could cause an infection. I'm hoping that it will last a little longer or that his blood draws will lessen. I'm not sure what they would do if it came out - if they would put it in, which requires him to be sedated to remain absolutely still, or leave it out and obtain blood draws using a needle. Right now it's nice because it's quick and simple and no needles are involved.

Joaquin's appetite has been great. He's eating more and more. They backed off of his fluids by 240mL recently and since he's not getting formula anymore I think he's actually experiencing hunger. Plus, I've been told that people who are on dialysis and whose creatinine is high because their kidneys are not working (remember Joaquin's creatinine was around 4 before surgery) do no have much of an appetite - food just doesn't taste as good. The more that he eats, the more nutrients he is getting and the sooner we can work towards our goal of having the NG tube gone.

Right now the NG tube (NG stands for nasogastric which means it goes through his nose into his tummy) is supplying him with constant hydration. Since he got my whole kidney he needs to receive enough fluids to maintain optimum kidney function. As his body adjusts to the kidney and he eats and drinks more, he will need the NG tube less and less. So, he's going to have to have it for a little while longer, but it's important to his health and the well-being of his new kidney. He had the NG tube when he was on dialysis because the whole process of dialysis can dehydrate him, especially babies. Before surgery he was on constant hydration over the course of the night and had a few bolous feeds (where he received around 100mL over the course of 15-20 minutes). He was also drinking lots of water. He doesn't drink so much water right now because the constant hydration he receiving right now does not leave him feeling too thirsty.

This week ahead looks as though it is going to be a mellow one as well. We have clinic tomorrow and again on Thursday. Depending on what his labs look like, we might have another "holiday."

Thursday, September 21, 2006

The Common Thread

Yesterday I attended a Solid Organ Transplant Support group that meets every Wednesday at four o'clock. There were three mothers and Meg, the social worker. One mother's daughter has had a heart transplant about a year and a half ago when she was one year old. The other mother had a four year old daughter who was diagnosed with some sort of kidney problem when she was around Joaquin's age. They were followed by a nephrologist in their home town of Fresno and it was around the beginning of June that she went in for a tonselectomy and ended up having her kidneys and kidneys fail. She was in a coma for most of June and only recently has been feeling better and telling her mama that she was "feeling better and was ready to go home." They're hoping that they can go home next week, but going home means being transferred back to their hospital in Fresno and then hopefully going home some time after that. Zaria is the little girl's name and her parents knew that in the future she would need a kidney transplant, but the tonselectomy seemed to bring the time faster. First Zaria needs to heal and be in a little better health before she can undergo the transplant. They are hoping that her father is a match and can donate his kidney.

About half way through this meeting two parents came into the room whom I had never seen around the House. All of the parents and families in the RMH recognize each other even if we have never formally introduced ourselves. Some choose to keep to themselves, some get acquainted with everyone if anything just to have a friend because they are in the House all alone without any family. The parents who came into the meeting were from Michigan and their little girl had some sort of long-named medical condition which I could remember if I wanted to and they had come to Stanford to see a doctor who is one of the best in the country and had agreed to meet her and see if he could perform a surgery. They went through the testing and it was decided before going into surgery that there was nothing they could do. So the parent's two choices were: 1) put her on the list for a heart and lung transplant, or 2) take her home and let her live out the rest of her life. Finding a heart/lung donor is hard and their little girl says that she doesn't want to do any more surgeries and just wants to go home to be with her two older brothers. All of this was dropped on them yesterday and they wanted to come to a organ transplant group to hear our stories and experiences. They are having a hard time deciding whether they should try for the heart/lung transplant or just let her, in essence, die. The little girl doesn't want any more surgeries, but is she capable of making that decision for herself? I've always thought while they may not have the same understanding that we do, they are wise little people.

So much of what her parents were talking about hit home for me. I remembered being in that position where I waned what was best for Joaquin - but what did that mean? Joaquin's situation is a little different. A kidney transplant is relatively easier than a heart/lung transplant, but making that decision for him was hard for me. So many times I wished that I could have asked him what he wanted to do. I did ask him a few times. The decision never felt like a very clear one for me and I feel like that is what they are feeling right now. Do they respect their child's wishes and take her home or do they go through with more surgeries when the transplant does not guarantee a better life for her? I told them that while it may seem like a hard decision now and a very unclear and confusing one, that the path would unfold in front of them. That's how I feel it worked out for us. The whole process of transplant didn't feel like trying to swim upstream, it felt like I was being floated down.

I walked away from the meeting feeling good that I had met other parents who are going through situations that I can relate to. It's like a buoy in the ocean sometimes. I realized yesterday too that no one is going to have the same exact story as Joaquin's - each child is different and each one's condition is unique. But to know that we all have this common thread of having a child who is not "normal" - whatever normal means and then who defines normal? I think that is why the RMH is comforting on some level, because we are all dealing with a "sick" child (I don't even like using that word because Joaquin is not sick in my eyes) and we can relate to each other and complain about the hospital and bad nurses or just give each other coping tips. Some of the people that I have met here are the strongest people I've ever known. It's amazing what an experience like this will bring out in a person - the good, the bad, the ugly, and the beauty of life and living.

Joaquin finally fell asleep when he couldn't go any farther.

Wednesday, September 20, 2006

Before and After

I was thinking just today after looking at some pictures of Joaquin that now our lives will be defined by "before and after" transplant. I look at pictures of him when he was a wee babe and think how he had a dialysis catheter in his side and each night we hooked him up to his dialysis machine and that was our lives. Sometimes I feel like I didn't get to fully enjoy Joaquin's babyhood because it wasn't as simple as just being a baby for him - or for us. I know that soon I will be looking back on that time of when he was on dialysis and think, how did we do that for a year?! I guess we just did it.

The past few days have only consisted of walking over to the day hospital at around nine in the morning for blood draws and that's all. We have clinic appointments every Monday and Thursday and those will take up a little more of our time but we are basically done with all of that by noon. Today I was even feeling bored. But I thought to myself, better to be bored than to be stressed, right? I think I over-exerted myself yesterday and so I'm just trying to rest up today. Since I've been feeling better I've been wanting to get out and do things. We usually just walk somewhere like downtown Palo Alto or Menlo Park. Yesterday we walked to Menlo Park, which is a good distance from the Ronald McDonald House and by the time we started walking back I was feeling a little tired. Sometimes I forget that I had major surgery and my body is still healing.

Joaquin has been playing outside in the little red car - which he loves. He's been eating more and more and we think that the two teeth next to his top two front teeth are starting to come in. He's also getting a little too sassy for his own good - but that fine cause I know that when he's sassy he's feeling good. Another two words that he's been trying out are: ball and door.

So as you can tell, things are pretty uneventful as of lately and that's just fine with us. I'm not sure how much longer we will have to continue on with the daily blood draws. What they are mainly monitoring with those blood draws are his creatinine levels and his Prograf levels. They ideally want to see the Prograf level between 10 and 12. I would like to know when they expect that to clear up because on our release forms from the hospital it said that we could expect daily blood draws for the first 2-3 weeks post-transplant and I know that hospital people never like to be generous with their estimations. They'd rather tell you the time to expect and then double that time. Joaquin's Prograf levels are still fluctuating, as to be expected, but we've been told that they're not fluctuating as much as other babies. So we'll see...

Monday, September 18, 2006

Bouncing Back

Today was a pretty mellow day. We had to have blood drawn at before transplant clinic and before we give him his Prograf. We didn't get to the day hospital to have blood drawn until a little after nine o'clock and for some reason they didn't have the orders for the blood draw so we waited around an hour to finally have the blood drawn. It's usually best to get to clinic early before many of the other patients arrive so that you can be seen and get out quickly. Otherwise, if you get there when it's busy, you have a long wait ahead of you. So I thought that by the time we got there it would be busy but I noticed how strangely quiet it was and when I mentioned it to the nurse she put her finger to her lips and said, "Shhhh." She didn't want me to jinx it for them. In the end, we just visited with the transplant nurse, Amy - Dr Sarwal didn't even want/need to see him. Which I'm taking as a good sign.

After our speedier than normal clinic appointment we had an appointment for another ultrasound of Joaquin's kidney. That went well also - not any better, not any worse. The little "blockage" was still there but just by looking at it you can tell that it's not a solid mass. And it floats around a little. Whatever it is it's not harming anything because he's still urinating plenty and his creatinine has gone down more. So they will probably just keep an eye on it. Supposedly the normally occurring enzymes in urine break down particles so they think it will just go away eventually.

As promised, I waned to share some of Joaquin's words with you all. Here are some in no particular order or preference: bye, book, cheese, juice, keys, dada, mama, baby, mine, pank, walk, water, banana, box, and today he was trying out the word "spider" which sounds more like "pi-der"

He also enjoying his freedom from his catheter and also enjoying many different foods. He's acting like he feels really good. He's very active and talkative. I'm sometimes amazed that he bounced back so fast, but at the same time, it's what I expected of him.

Sunday, September 17, 2006

It Comes Out, We Go In

On Friday morning we woke up at six to get ready to go to the hospital to have Joaquin's supra pubic (that's the correct spelling I finally figured out) taken out. The scheduled surgery time was 8:30am, but it end up starting until around 9:30am - busy doctors, I guess. The removal went off with a hitch and he stayed in the recovery room for around an hour - enough time to wake up from the anestesia and show the nurses that he was urinating enough. We were then scheduled for an ultrasound at 3:30 to get good view of the kidney and see how it was doing. After that we were to wait for Dr. Sarwal to call us back and us the word on whether or not we could go home.

After waiting for quite a while, Dr Sarwal asked to speak to me on the phone after she had looked at the ultrasound images and consulted with the other doctors. I could tell by the tone of her voice that it wasn't good news. I wasn't worried that anything was wrong necessarily because Joaquin seemed like he was feeling good - while we were waiting he was crawling around on the floor and pulling himself to standing on some little people chairs in the ultrasound room. Dr Sarwal said that he had a bit of hydronephrosis, which is dilation of the branches and pelvic cavity of the kidney, caused by an accumulation of urine resulting from obstruction of normal outflow. Or in simpler terms: his kidney was a bit swollen and had a little more fluid in it then they woud like to see. Now, this is not too much cause for concern because the kidney had a bit of hydronephrosis before it even came out of me. See, when a woman is pregnant, her uterus tends to tip to the right and sometimes that right kidney is a little damaged because the uterus will lean on the ureter (the tube connecting the kidney to the bladder) and kidney and compromise the flow of urine and blood in the vessels. We had told Dr Concepcion ahead of time that we woul like to have more children down the road and so they take the right kidney because I would need the left kidney because that one is not compromised by a growing, heavy uterus. And they also didn't want to leave the donor with a kidney that was compromised in any way - they would never want to put a donor at risk.

What they also saw on the ultrasound was a little blockage in the ureter where the ureter attaches to the kidney. It wasn't there before, so they were thinking that it came to be there when they pulled the catheter out - some debris that was hanging around near the end of the catheter. The normal enzymes in urine generally breaks these kinds of things up. They were a little worried that at some point during the night he might stop peeing, so to be on the safe side, they decided to admit Joaquin to the hospital on Friday night. I was a little upset, more at the prospect of having to be in the hospital, because I understood why they wanted to hospitalize him. I wasn't too worried because he had been peeing well all day.

So we get comfy in the hospital on Friday and Joaquin went to sleep pretty early. He wasn't even really hooked up to any machines. They just wanted to simulate Joaquin's home care so the nurse only came in once every two hours to change his diaper and make sure he was peeing.

Saturday morning comes and Dr Wong comes in and says that his creatinine is still where they want to see it and he is still peeing so it means that there might be a little blockage, but it didn't seem to be doing any harm. She wanted to consult with Dr Concepcion and then they would get back to me. I asked her if it meant that we would be staying another night, but she said that we were past the point of the blockage causing any harm - it would have done it already if it was going to.

A little while later Dr Concepcion came literally dancing through the door. He was very pleased that his creatinine was low, had actually gone down a little more since the previous day, and he was peeing like a champ. He tried to give Joaquin a high-five, but Joaquin just stared at him. He said that he hadn't slept well the night before because he was so worried that the blockage meant they would have to go back in and put a stent, or a little tube, in the ureter to make sure it stayed open. He said that he was thinking about Joaquin all during his 5 am surgery as well. You know things are good when your giant, lead surgeon comes dancing through the door.

And so we were discharged around 1 o'clock in the afternoon.

Now they will just continue on with the daily blood draws and will have a clinic appointment tomorrow and a follow up ultrasound next week some time. Joaquin is doing so well, though. I wasn't ever really worried about him because he acted just like his normal self and he was peeing plenty, but still... We've got expect that these little things will happen and because of the LPCH's track record with kidney transplants (100% success rates in the first year) that they're going to err on the side of caution. As a parent, no matter if it was in my control or not, I always feel like a bit of a failure whenever we get hospitalized. I was so proud of not getting hospitalized during his whole year of dialysis - but now we're in new territories in regards to his kidney. They've always told me that this first year had the likelihood of being a little rocky. I just hope that since we did so well on dialysis that we can continue to do as well with his new kidney.

Thursday, September 14, 2006


Today was a much better day for us - I didn't feel like writing yesterday because I was feeling so negative and I felt like the last two entries were negative enough. We had a clinic appointment today and while I don't dread going to them, I'm certainly not excited about them. I don't know why but clinic appointments have always upset me, just ask Chris. Rarely was there an appointment when we were doing dialysis where I wasn't emotional all the way down and back. But I'm an emotional person as it is on top of the fact that I was so sure that his kidney was going to work and we weren't going to need to do dialysis anymore or go through with the transplant. So every time we went down and there was no change and his kidneys still weren't working... well, it was very hard on me. I think that if Joaquin's one kidney wasn't working at all or if he was urinating at all - then I wouldn't have had such a hard time with everything and with the decision to transplant.

But as the saying goes: hindsight is 20/20 and even two and a half weeks post transplant I'm beginning to see that Joaquin's kidney may have been doing something, but it more more close to nothing than anything. Thankfully it did something, though, because he peed so he could drink all the water he wanted and his body is used to urinating. Some of the mothers who have kidney kids that I have spoke always ask what it was like to have a wet diaper to change since their babies never peed.

Back to the appointment today - Dr. Sarwal, yet another of the rotating renal doctors that we deal with but one who I am beginning to like more and more, started telling us today that she thought it would be best for us to wait to have the catheter removed until Monday. Her reasoning for this was that it was a Friday and most of the renal doctors and team members are off on the weekends and in the unlikely event that something should not go as planned with the procedure tomorrow, we would be dealing with an on-call doctor, or "skeleton crew" as she put it. She would be off tomorrow, Cathy would be off, as well as Dr. Concepcion. Thankfully the appointment was made for 8:30 in the morning so that most of the renal team with be there until at least 5:00pm.

Now, I could have really gotten upset and I felt myself going there but I understand her reasoning for wanting to hold off until Monday. I was very calm about it for some reason. I want what it best for Joaquin - but, they also need to consider the fact that every minute, hour, day that the catheter is left in place is more opportunity for it to become infected, pulled on, pulled out... As I was telling her, I don't feel like it's purely my selfish reasonings for wanting it out, there are legitimate reasons why we don't want it to remain in. There's also a stent in his ureter that they will remove at the same time. But we've always been told that his catheter was to be pulled two week post transplant and if we held out until Monday it would be three weeks post transplant. Dr. Sarwal said that it was likely that nothing would go wrong and everything would go smoothly, but that it's her job to warn us of the risks.

She also asked us why it hadn't been taken out on Monday like it was had originally been planned to and I explained that the hospital was full that day and that "someone" had said that it was to come out Wednesday and that we felt as though "someone" forgot to make the appointment and so it got bumped out until Friday. Dr. Sarwal said that it's never a good idea to do a procedure that will involve monitoring on a Friday since everyone is off for the weekend and that she will have to speak to the team about scheduling appointments for that day. Amy, the transplant nurse, said, "Cathy was in charge of making the appointments." So I feel like while I didn't name any names, Cathy will probably receive some sort of indirect reprimand and that just makes me smile on the inside.

So we are scheduled to be at the PACU (not sure what that stands for) at 7:00 in the morning - an hour and a half before the appointment. Joaquin will receive anestesia that will put him under for around 5 minutes, the sutures will be snipped, the tube will be pulled and then they will flush it three time with an antibiotic solution and the third will be left in the bladder so that it will be urinated out through the penis thereby flushing out any little bugs that might be hanging around. Then they will just need to monitor him for about three hours to make sure that he's peeing enough. After that we will be free to go for lunch or just leave the hospital for a while, then we will come back for an ultrasound at 3:30pm to make sure the kidney is still doing good, have some more blood drawn and wait around for a doctor to view it and get the okay to leave from him/her. And then we are free to go. So it will be a full day, but well worth it.

As for me, I am doing much better. We have been going on daily walks and every day I can go a little farther and not tire out. I'm able to sleep on my tummy and on my side that does not have the incision. I'm feeling like I'm getting back to where I was before the surgery. I'm including a picture of the incision as per requested by my Dad. Please don't mind the belly - my muscles haven't fully healed so I can't suck in my gut!!

Tuesday, September 12, 2006

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):

Monday, September 11, 2006

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.

Friday, September 08, 2006


A little after two o'clock Chris carried Joaquin out of room 3241 on 3 West and met me at the car in from of Lucile Packard Children's Hospital. Mom said something to the effect of, "Is it okay that we just walk out with him?" And to which Chris replied, "I think so."

Cathy met with up around noon to go over a few more things before discharge. We went over medicines, what time to give them, who to call if we had any questions or emergencies, our schedule for the next week. We will be coming back daily to the hospital for about 2-3 week for blood draws. This is the normal protocol for transplant patients - the blood draw needs to happen to make sure that enough anti-rejection medicine is being given. So now for us it's time for slipping into a routine. I'm not the type of person who needs a routine to feel at peace, but they are nice when you have a little one.

At the moment, Joaquin is sleeping soundly next to me on the bed with no beeping monitors, no nurses coming in and out every 15 minutes... just home with his family and feeling at peace. Mom and I went for a walk near the Ronald McDonald House in the new stroller and Joaquin seemed so happy. When we got in the car to leave the hospital his eyes were big and he was looking around at everything and pointing. We are both just slowly healing in a fast way. To just go outside and on a walk is one of the nicest things to do after being couped up in hospital. And I was right about thinking that this hospital stay wouldn't be as bad as the first. It's hard to believe that it's been less than two weeks since we had surgery. I'm feeling much better and Joaquin seems to be coming back into the boy that we knew.

More and more lately I've been getting excited about what's to come - know that we're through the transplant we can focus on Joaquin growing and not worrying about whether or not his kidneys work and if he's growing adequately. We didn't know and now we do. Our life isn't waiting to move forward, we are now moving forward. We are released from the uncertainty the future would bring. We are released from the dialysis machine. We are free to look forward and know that Joaquin will grow and not be shortchanged by his kidneys.

Thank you for all your prayers. Please keep them coming and know that they work. That although we've been through so much we really have been guided through without any major bumps in the road and we pray that it will continue to be this way.

Thursday, September 07, 2006


Before the transplant, we were told that we had the option to view Joaquin's kidneys after they were removed. For many parents, viewing the kidneys helps to bring peace to their decision and a sense of closure. I wasn't sure how I would feel about it, but today Meg rounded up Chris, Mom and I to go down to the pathology department to see Joaquin's kidneys. I was feeling a little hesitant yet excited to see what we had been up against. We get to the pathology department and are taken to a back room - I fel like I was visiting a morgue. After turning a couple corners we find ourselves in front of a stainless steel rolling cart with a green cloth covering what I'm guessing is Joaquin's kidneys. The pathologists look at us as if to see if we're ready and then, as if it were all in slow motion, they pulled back the cloth. There they were - Joaquin's kidney beans. Now, I'm not grossed out by many things but my stomach definetly did a flip when I saw how they looked. The one that was multicystic looked like something crusteacous pulled from the depths of the ocean. The other kidney was fairly normal looking, maybe a little on the small side with a few cysts on it. I remember Mom saying, "Oh, Meghan, you did a wonderful thing." We were able to put on purple latex gloves and pick up the kidneys. Chris jokingly asked if he could taste them. I had to fight off the disgusted look on my face.

In the end, we decided that we would like to keep part of them thinking that perhaps one day Joaquin would like to see them and maybe take them in for show and tell. They had already been sliced in half and so we got half of each kidney. And here they are - the picture doesn't do them true justice, so if you want to ever see them in the flesh, just ask.

Pretty gnarly, huh? The one on the left doesn't even look like a kidney and you can sort of make out the kidney shape of the one on the right. I'm still kind of grossed out by the thought that we are now the proud owners of Joaquin's kidneys and that they are sitting in a manilla folder in our room.

Do I feel a sense of closure? A little bit. I think in the back of my mind I will always wonder if the right kidney would have worked because he was peeing the whole time which means that the kidney was working. But who knows if the cysts would have grown bigger and caused problems. It was time. Seeing them definetly made me feel better about my choice, though.

Still on schedule for release tomorrow. We were informed today that there is no room for him in the day hospital Monday to have his super-pubic catheter removed, so it's been pushed back until Wednesday, which I'm not happy about but Chris says he's fine with it - he wants to make sure that kidney and ureter are all healed and ready to go. A man with an ultrasound machine came into the room today to view the kidney and so I got to view my, I mean our, kidney again. Looking good!

I also wanted to include a few more photos from today:

Wednesday, September 06, 2006

Signs and Times, Seasons and Reasons

It is sooner than we expected, but if everything continues to go smoothly as it has been this whole time, Joaquin will be released Friday. Today Cathy came in and sprang a pop quiz on Chris and I to see if we knew the 5 signs of kidney rejection and various questions pertaining to the transplant binder that we received in the middle of August. She said that she was very happy with how much we knew. She quizzed us on the medicines that we would be going home with, they are: 2 are anti-rejection medicines, 1 anti-viral, 1 anti-bacteria, asprin to prevent clotting which could cause problems with the blood flow to the kidney while it continues to heal, pepcid to help his tummy with all the strong medicines, and one more to keep his blood pressure up until he is at a point where the foodshe eats beyond formula they give him sustain it. We will give 2 at 8 am, 5 at 9am and then 2 at 8pm, 5 at 9pm. Pretty easy. She says it might be a good idea for us to prepare the meds ahead of time and then just bring them with us when we leave for the day just to be on the safe side. The prograf and the cellcept must be taken at 8pm sharp. Not at 7:55pm or 8:05pm because the levels must remain consistent so the body does not start going into rejection.

Rejection is always the biggest risk with transplant. Since a foreign object is placed into the body, it is the body's natural response to fight and attack the foreign object. The only case in which a person would not need to take anti-rejection medicines would be if they received a kidney from their identical twin. I feel good about being the donor because in a way it makes sense that an organ should come from the mama since the baby came from the mama. And I've read a study that suggests babies who were breastfed and received a renal transplant from their mama had a lower risk of rejection.

All arrows seemed to be pointing to me to be the donor, though. Around the beginning of July, when the doctors started talking more and more about transplant, the decision felt so heavy to me. I was confused because for so long I had held out hope for that kidney. After we hit the year mark I began to lose hope because I had felt that if that kidney was going to work it would have been within the first year of life. I don't really know why, I just think that the first year the baby is so new and itsbody is able to heal itself. And I think that everything was just starting to sink in about the fact that his kidneys never really worked to begin with. And we had been doing dialysis for a year - too long. Joaquin was hitting an age where his body didn't not depend mostly on nutrition for growth - it was looking to the kidneys to do their part. Some children who have what Joaquin does or whose kidneys do not work, they are behind developmentally. I feel we lucked out. Joaquin is not that behind, if at all. And he's a smart little guy too.

Another thing that point to me being the donor was that I was a stay at home mama. If Chris would have been the donor he would have had to take time off work - up to six weeks - and we cannot afford that. And then right around the time that we were moving forward with the transplant he started having some health issues (that have cleared up for the most part). When that happened I felt like it was even more of a sign; had Chris been going through donor work up and then had those problems there was no way would they have let him go through with it.

What also felt right about it was the season change. Falls a time for school to start and summer to end. We shift down and slow down. I find that I'm not as active or do as many things in fall/winter time - it's like I'm hunkering down and preparing for the long winter, hibernating. By the time we come home people will be in full on hiberation mode and we don't seem to be as social as we are during the summer - which is good for Joaquin because that means less germs. By the time cold season starts his immune system will be almost fully healed - as much as it can be from the immunosuppresants.

There were a few other little things that made it all seem like the right time as well. The social worker, Meg, that we had gotten to know when Joaquin had just been born and all the mayhem had started, returned from maternity leave on August 28th. My Mom's school started just a little bit before the surgery, so she didn't have to start the year and then take the time off. And... it just felt right. The psychic I went to consult when I was trying to make my decision said that July was not a good time for surgery because Mercury was in retrograde, which could cause little complications to arise. The surgery had originally been scheduled for July 31st and then it was bumped back by the renal team - which I took as a sign for it not to be the right time. She said I would just know when it was the right time - that we would be given a few little signs and we got them. She had also told me that she did not see the kidneys working again. It was like I knew that at that point, but I had been so against the surgery for my own personal reasons that it took her telling me that for my vision to be cleared.

A person's intuition is a very telling thing, a mama's is even more telling and powerful. Sometimes it can be hard to hear what your heart is telling you, but perhaps it's not so much listening as it is being aware and open to the signs.

Tuesday, September 05, 2006

Moving Along

Today Cathy, she's the transplant coordinator, came into the room not too long after I arrived to Joaquin's room. She put up a chart on the wall the listed all of the medicines that I will be learning about and giving Joaquin. There are about seven, maybe a few more. Sounds like a lot, but they are given in the morning and at night, so not too many. Before transplant we were giving him around seven medications; the nice thing about these is that by around six months we will be down to only two. That will be nice. The remaining two medicines are prograf, the anti-rejection medicine, and cellcept, the immunosuppresent medicine and those will always be a part of Joaquin life.

This coming Monday Joaquin's super-pubic catheter will be removed as well. And Cathy said that we would have to come back to have it removed - if we are discharged. Yup, you read it right, we could be discharged as early as this week! I had never thought it would be so early, but in the back of my mind I knew it could be a possiblity. Why keep a kid in the hospital whose mama can do all the work the nurses do and where there's lots of sick people? They know that the hospital is not the best place for him once he's stable enough. They want him out as fast as we do and now that his urine is clear, there's really not much more. Plus, we'll be in the Palo Alto area for around 100 days, so they can keep an eye on us. This is all going to go so fast, like I had hoped.

Tonight I arrived back at the room after I went back to the Ronald McDonald House to make a stew for Chris and as I entered the door there was a sign that said: "Contact Isolation." What? I entered the room and asked Chris if he knew what the sign meant. He didn't even know it was on the door. I stepped out of the room and asked his nurse what it was all about and she said that she would come explain it to us in a moment. Turns out that Joaquin's stools have been a little runny and they want to rule out the rotavirus (not sure if I'm spelling that right.) There's no medcine to be given for it, it will just have to run it's course. They don't know if he has it, they have to run a culture that will be back in 24 hours. What kind of irks me about the whole thing is that we were never informed of any of this. Why wouldn't the doctor who ordered this to be done come in and chat with us about what it meant and what might happen? I consider myself and Chris to be a part of his care team and I feel like renal team should do the same. I don't know if we're different than other parents, but we want to be informed and kept in the loop. I mentioned to the nurse perhaps his stool are runny because of everything that has been going on over the last week and all the new medicines and liquids and whatnot. And it sounded like that was something she was going to pass along to the doctors as a consideration. Now that I think about it, I wish I would have requested to speak to the doctor who ordered it. Tomorrow I plan to look into it more and address the issue.

On a good note, Joaquin's urine output has been beautifully clear. No pink tinge or anything! The prayers, healing energy and good thoughts are working! And Joaquin is getting more and more back to his old self that we love. He's playing and trying to sit up and pull himself up. I even went over to the bed and held him in my arms because so many of his lines and tubes are gone now. It's like we are moving ahead so quickly to discharge time. Today Mom and I went shopping for a little while and I bought him a new stroller - just a simple umbrella stroller but since we are going to be doing so much walking I figured we needed to invest. Thanks to Ma and Pa Ruiz for helping us with that purchase!

I've been feeling so much better as well. My side is a little stiff still and I have moment when it's a little bit painful, but today I went all day without taking any pain medicines. I even slept through the night last night without waking up to walk out my stiff, sore side. Sometimes it seemed like while my body was trying to adjust to this major surgery and all the anestesia and pain medicines being pumped through it, all of that was slowing down the healing process. Now that I've been able to significantly reduce my pain meds I feel like I am actually healing faster. It's a great feeling.

Monday, September 04, 2006

One Week

So one thing that has been a little bit of an issue with Joaquin is that his urine output has been a little red - meaning that there is blood in there. That is not uncommon, in fact it is expected with kidney transplant patients (not sure about other types of transplants). It is expected to clear out within the week of transplant, but today Joaquin still had some red outflow. He has had a few times where it wasn't very red, but usually it is red. The doctors are not worried about it, but they wonder what could be causing it: could it be the stitches healing or something else? Well, today one of the pediatricians on the floor came in a talked to us about it and addressed that as being the only real issue with Joaquin at this time because all of his labs have been coming back "great," in her words. I asked her if this is something that could clear up tomorrow or when? And she said that it was something that could clear up in an hour, in a few hours, tomorrow, the next day, in a week... you get the idea. So, I did a little touch therapy on him after this news.

My friend Bobbi taught me a little bit about touch therapy last year when Joaquin was born. I knew that she had studied and knew different types of healing therapies and so when Joaquin was born and I saw what was happening I called her and asked her to come down and visit Joaquin. She saw him and did a little touch therapy on him and taught me how to do it on him myself. It involves envisioning a white healing light around Joaquin and think positive, healing, loving thoughts. Then concentrate on the area in which his kidneys were and using your fingers do circular motions over the kidneys. Do this for around 15 seconds thinking positivity and love and healing. And then afterward, using your hand, sweep your hand over the person just an inch or less above like your are smoothing the energy.

As I was doing this touch therapy on Joaquin, I put a little prayer out there for the bleeding to stop and for the kidney to heal and stay strong. Within the next hour the outflow started clearing up. When I left tonight it was still pretty clear, a little pink tinged, but clear. The nephrology (kidney) doctor who came in near the evening time was very pleased and said that they had just put a call in to the head urologist, Dr. Salvatierra, as to what he thought the problem might be. Go figure, she said. So please pray for that outflow to stay clear and for a healthy, healing kidney.

Chris and I went out to lunch today while Grandma Johnsen (my mama) stayed and played with Joaquin. It was nice to just get away for a little while. We had a chance to talk a little bit about it all. I get emotional when talking about all of this because sometimes it seems to huge and I can't believe that it's happening. It's really hard to wrap your head around the fact that one day, one minute, you had two kidneys, and the next only one. I went to sleep with two kidneys and woke up with one and that one is in my son. Wow. I told him how I sometimes didn't know why I had chosen to do this when everything was going so well. And he made me feel better by just reminding me that while things were good in a sense, but he was still on dialysis and our lives were restricted to a certain degree by this. He talked about how next summer we would be able to go camping and festivals and just travel! Just us and all our stuff - minus the machines.

It made me think about how much our mind set has changed about all of this. When Joaquin was born is was so very hard for me to adjust to the idea of having to give medicines dailyand being on diaylsis every single night, but we adjusted and it became routine And the thought of doing a transplant - well, it just wouldn't happen. I did not want to be giving meds daily for the rest of his life! And now, well, it's not so bad. It's like we have to compromise a little to live more freely. Compromise is not an easy thing to do, adjusting your lifestyle is not easy, and it sure isn't easy when you're on the out looking in. But you just live your life and you do what you have to do. We compromise a life of dialysis and doctors for medicines and doctors. But with a transplant we are not compromising his health anymore by being on dialysis.

Can you believe it's been one week since Joaquin's been off dialysis? It's like August 28th is his second birth - a new life.

Sunday, September 03, 2006

Reminiscing the Purple Sling

This morning Grandpa Johnsen called to inform us that Joaquin had been moved from the PICU up to 3 West like we had all hoped. Today was uneventful in regards to Joaquin's health because he's only just healing and waiting to get to the point of being discharged. I was able to spend most of the day there with him because now that he has his own room, there is a long bench that also doubles as a bed for the weary parents or guardians. And I can lay down and rest when I need to. Now Chris doesn't have to sleep in the recliner and he doesn't have to leave Joaquin when he wants to go to sleep.

I was having moments today of wondering why I had chosen to do this to us. Everything was going along just fine before the hospitalization and transplant. I was healthy and feeling good and vibrant and now my body feels all out of whack. I hate it. I cannot wait to be months beyond this and feeling back to normal. And Joaquin was so happy - well, as happy as a kid who is cutting his top two teeth can be - working on standing and walking and now he's all laid out in the hospital bed and wheezing a little from all the stuff that goes along with surgery and healing. Sometimes he feels so uncomfortable and I feel so helpless because he's reaching out to me and I can't pick him up because of all of the tubes and machines. I miss carrying him around on my hip or in our purple sling - it's where we both liked to be. I ask myself many times and sometimes a few times a day why I chose to do this to myself and Joaquin. I tell myself it's for the best and soon it will be over. But somehow that seems to go against living in the now - which I try to do. I try and listen to and practice what my friend tells me about just trying to be at peace in the moment and not think about the past and not think about the future. But that's so hard when the present is so uncomfortable. I try and see the lessons that I'm learning from all of this. Sometimes it all just seems so unfair. And I still think that I could handle more if God gave it to me. But I sure hope s/he doesn't decide to.

For Your Viewing Pleasure

Just wanted to share a few photos with you:

We called these his "metal boobies." This was day before surgery.

Day before surgery

A few hours after surgery

A few hours after surgery



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