Day by Day

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

Tuesday, October 31, 2006

Happy Halloween

It's Joaquin's second Halloween and although he's still too young to really understand what's in it for him as far as trick-or-treating and candy, he does love all of the decorations that are around the RMH. He likes the jack-o-lanterns and bats - he likes to point out all the decorations that are hanging around the house too. We have to stop to touch and look at them. It gets pretty festive around here and there is trick-or-treating at the hospital. Some of the mothers at the house have decorated the play room to make it look like a haunted house. I think next year Joaquin will really understand and appreciate this fun holiday, but this year it still isn't too important to him.

We had blood labs and a clinic visit yesterday. Chris is down in Palo Alto for the week, so came with us. One thing that we were discussing with them was his biopsy that is scheduled for November 28th. A biopsy is where they put him under (again) and put a small needle through his belly and take a small sample of the kidney tissue to look at and test to make sure that rejection is not taking place. I am part of a group on yahoo for people who have had kidney transplants. Most of them are adults and a while ago there was a brief discussion about biopsies and many of them had never had one. At LPCH they have them scheduled for 3 months, 6 months, 1 year and 2 years post-transplant. Many of the people on the yahoo group feel like there is no reason to do a biopsy unless rejection is suspected because no biopsy is without its risks. They feel like why mess with a good functioning kidney. And with Joaquin, we all know what happened the last time he had to go under anesthesia.

Dr Wong assured me that all of the doctors would be there to make sure that didn't happen again and I asked, why did you let that happen in the first place when doctors know that anesthesia makes the blood pressure drop and that is not good for a kidney patient. She had no answer and I knew that it was worthless to ask at this point because it's said and done. But they feel like biopsies are important because with a baby and small children they have less muscle tone so rejection could be taking place and they would not see it from their blood work. For an adult, the reason that they generally don't do biopsies is because it usually is detected in blood work. We're still not sure whether or not we are going to go through with the biopsy because of the risks involved, but you do want what's best for your child - still, it's scary. Sometimes I don't understand why they are so willing to just put these children under anesthesia time and time again because with any kind of surgery, be it large or small, what also goes along with that is morphine and other drugs to "make the patient comfortable."

When Amy called yesterday with the lab results from the blood work she told us that his white cell count was a little low - which could make him more prone to infections. It's because they raised his Cell Cept dose - they lowered it yesterday, but now we have to be careful of crowded places and uncooked food for a few days. Also, his creatinine was a little higher than they would like it to be. But along with the creatinine being a little higher, his BUN was too. BUN stands for Blood Urea Nitrogen, a waste product normally excreted by the kidney. The BUN level is determined by your kidney function and your protein intake. It's a little less worrisome that his BUN and his creatinine were a little higher together because it means that he just needs a little more water. If it had just been his creatinine going up, that would be more cause for concern. So we just gave him some extra fluids yesterday and took him in for labs again today. Hopefully his creatinine will look better. I feel like it will.

Happy Halloween everyone!

Friday, October 27, 2006

And Then There Were Two

The time is quickly approaching when my Mom has to return home. Thankfully she was able to work it out with the school district so that she could be here for this long - I don't know what I would have done without her. I don't think that we would have spent so much time together in the last year and a half if Joaquin had not been born. And if he had been born with no health issues, we still would not have spent so much time together and she would not have been such a huge part of Joaquin's life because of the distances separating us. If something good could have come from Joaquin's health issues, it would have been the time she spent with us. It doesn't really help to make sense of why this happened to us, but it's comforting in some way.

I'm a little nervous when faced with the prospect of all of this one-on-one time with the baby beast, a.k.a. Joaquin. I stayed at home with him his first year, but if I had a rough day with him I could just pass him off to Chris at the end of the day and get a little break. Once she leaves, it will be just me and Joaquin. I know that we will work it out and be fine. I was nervous last year when we returned home and she had to leave because she had been so much help and then throughout the year Joaquin and I got into our groove and I always had Chris to help out in the evenings and weekends.

I don't think that we will be by ourselves down in Palo Alto for more than a couple weeks. We are at a point where we are seeing the nurse and having blood drawn once a week. Chris and I have talked about having Joaquin and me move home and just come down for the weekly visits - because that will not be a long term thing. It's something I would like to discuss with the doctors, obviously. To be honest, though, I'm also nervous about leaving the closeness of the hospital. But there is really nothing that could happen that we wouldn't be able to just jump in the car and be down here in four hours. I was so nervous last year about leaving Palo Alto when we took Joaquin home on dialysis and look how that turned out. No problems - although it is a little different having a kidney instead of a dialysis machine.

Joaquin is finally adjusting to the new formula and last night we all slept through the night without Joaquin waking up because his tummy hurt and he was gassy. He is thisclose to walking - today he stood unassisted, but he is still a little hesitant to make those first few steps by himself. He just needs to build his baby confidence.

Thankfully we have had a relatively uneventful post-transplant experience so far. I attribute that to all of the thoughts and prayers we have been receiving and Joaquin's resilience.

Monday, October 23, 2006

Once a Week

Whew. Everything went smoothly today.

This morning we got ready to go to the hospital and left the RMH by nine o'clock, give or take a couple of minutes. We arrived at the hospital and went through admissions to receive lab slips for the blood draw and then miraculously there were no people waiting to have their blood drawn. Sometimes it can get swamped, especially when all of the transplant kids come through in the morning before they take their Prograf.

We got his blood drawn quickly, no digging around for a good vein, they got it on the first try. And that's the way his veins will draw as long as they have a week in between draws. His little veins cannot support daily blood draws - we would run out of spots. That's why the PICC line was so important in the beginning, but it came with it's pitfalls. It's a double-edged sword, that PICC line.

We arrive at clinic a full half and a hour before our scheduled 10 am appointment. I figure this will give the nurse enough time to round up a team to place an IV, but I figured wrong. Also, they won't order the medicine until they have a line placed, so after we place the line we had to wait until the medicine came before we could actually begin the infusion.

The IV nurse came in and was eyeing his chubby little arms and his feet, but right away I mentioned how we had success on the first try with the IV in his temple. She wanted to do an arm or foot, but I convinced her otherwise and she placed the IV on the first try. It went beautifully except for the fact that Joaquin is a sweaty little beast and the sticky dressing that holds the IV in place did not want to stick, they even wrapped some bandage around it. I ended up having to actually hold it in place, which wasn't so bad because Joaquin was a little worn out from his screaming fit while they were placing the IV, and so he relaxed on my lap and watched some TLC with me. The infusion only lasts 15 minutes, but since they placed the IV in his head, they ran it at half the amount of time - so it ended up lasting about 30 minutes instead. Which was fine by me, I was just grateful that they had placed the IV so quickly - I just wanted to do the infusion and get out of there.

So even though we arrived at the day hospital at 9:30am, the infusion didn't actually start until around 11:30am and we weren't completely finished (because after the infusion is complete, they want to "monitor" him for another 30 minutes) until about 12:30pm. And you know what? I didn't even raise a stink when they were lagging and made us wait a long time. I think even though my hospital tolerance has gone down, my patience has gone up... Just a little. I'm still going to keep them on their toes - in a good way, of course.

After we finished the infusion we went straight over to transplant clinic, as is the usually norm for Mondays. We were running late and I had even received an "urgent" call from one of the receptionists wondering if we were coming to clinic today that scared me because I thought it was Amy calling to say that something was horribly wrong with Joaquin's lab results. I stressed all the way over to clinic with butterflies in my tummy and everything. I think the main reason why I was stressed is because I'm a little more responsible for making sure he receives the full 2 liters of fluid every day and now that we're not doing 24 constant hydration. I need to make sure that throughout the day he received the other 1 liter of fluids that weren't given overnight. But I had been doing a good job with it, so there was really no reason to worry, but I still did. Especially with all the rejections and threatened rejection going on around me. I need to remind myself on a daily basis that every child is different.

We saw the nurse Amy and Dr Alexander even made a guest appearance and had nothing but praise for Joaquin. And of course Joaquin hammed it up for Dr Alexander - giving him his cutest faces and his funniest noises. Amy still hadn't received the lab results, but I expressed my concerns and worries that I had been having and she seemed reassured that everything would be alright. She said she would call me later in the day with the results.

Around 4:30 and 5:00pm I still hadn't received work from her. I'm taking it as a good thing because if things were not right we would get a phone call immediately. Anyway, she called with the news that his creatinine looked wonderful - 0.24 - and his Prograf was not back yet but since we're going down to just once weekly blood draws it wasn't urgent that the doctor call us tonight so we could expect to hear from her tomorrow morning. I think I was finally able to breath after that.

I'm not sure when our next clinic appointment is - whether or not we see them on Thursday or Monday. It's a nice feeling to look forward to another week filled with doing thing we want to and just getting ourselves back to normal.

Joaquin's throwing a bath toy out of the tub cause it's what he likes to do best.

Sunday, October 22, 2006

8 Weeks

Our boring week has ended and after tomorrow hopefully we will have another boring week that follows. But tomorrow we have a few things going on and one of them is Joaquin's xenopax infusion. There is no reason to think that tomorrow will no go smoothly. We have no PICC line to deal with and so right away the nurse will arrange for someone to come down the day hospital (where he has the infusion done) to place an IV line. We are scheduled to be there at 10 am, but we need to have blood drawn before. The good thing is that it's taking place in the morning and so hopefully it won't be a long ordeal. And thankfully it's not too early in the morning cause I'm no early bird - and neither is Joaquin

I was thinking how having a week where there were no blood draws and no doctors and no hospitals makes me anxious for a little thing like tomorrow. It's like I was so steeled from the transplant, the hospitalization, the constant blood draws and nurses that when we finally got a break my tolerance for it all went back up. It could easily change to where we are in the hospital being monitored, but hopefully it won't.

Lately at the RMH there have been a few families dealing with organ rejection and that's scary for me but not an indication of how well Joaquin will or will not do. It's a very real possibility. Lots of families deal with rejection, and some don't. We were warned that these first 100 days, the first year even, has the potential to be rocky. I think the reason that it's been on my mind is because it's all I really see at the RMH. I only meet the families who are going through rejection, so it feels like everyone is going through rejection. And I know that there are plenty of organ transplanted kids out there doing just great... I just don't meet them.

The company who supplies Joaquin's formula finally delivered it on Thursday. Along with the formula they were supposed to also deliver some protein powder to add to it, but it didn't arrive. I called the company and they overlooked that on the prescription that I faxed them, so they had to send it out separate again. Friday night into Saturday was our first try at the new formula. The way they worked it out was that he would receive 1000mL during the night and then it was up to us to give him the other 1000mL during the day by either having him drink it or bolous it - meaning put it down the ng tube. The new formula upsets his tummy a little bit because he woke up Saturday morning and threw up and was a little gassy. This morning he work up a little upset and again threw up and farted a lot. I'm hoping that he's just adjusting to the new formula. During the day I make a mixture of water and juice - yesterday it was organic apple and grape juice and today it was an Odwalla Berries Go-Mega drink. I'm thinking about doing some fresh squeezed fruit juices or getting a drink that Trader Joe's carries called "Carrots and Greens." I feel now that since Joaquin is getting to an age where he is taking in more solid foods and not just the formula the doctors prescribe, I want to get as much whole foods in him, like lots of fruits and vegetables. My hope is that by starting him out with healthy, whole foods that it will be a life pattern and may help his kidney last longer and stay stronger.

This weekend we made a much needed trip to the beach. The weather was sunny and warm - people were wearing their bathing suits and I wished that I had brought mine so that I could have jumped in the ocean. Joaquin just wanted to walk up and down the beach. He liked when Chris would wait just a second before the tide was about to reach Joaquin and then pick him up. Joaquin liked the feel of the sand on his toes and his little feet smacking against the watery sand as he walked along was so cute. He is getting better and better at walking every day.

After the beach we went to a local fish restaurant where we pigged out on fresh fish as we sat ocean-side. The day had been clear and beautiful but just as night fell the fog came in from the horizon and blanketed the whole coast. Joaquin enjoyed the clam chowder and sourdough bread. It was a beautiful day followed by good food.

We are nearing the end of October - today we have been living in Palo Alto for two months. Tomorrow we are heading into the 8th week post-transplant - and soon we will be two months post- transplant. It's amazing how fast it's gone and how much we've gone through - and I don't mean that in a bad way - just how much we've done and what we've been through and where we are at now. I was thinking today about how just a little while ago we were doing daily labs. And now we are looking forward to going home.

Thursday, October 19, 2006

Home Stretch

This week we were busy being bored and doing nothing - and that is not a complaint. Joaquin has had a week full of no doctors, no nurses, no needles and no hospitals. He's been working on his new skills such as walking (with a little balancing help) and crawling and climbing. And he's also adding more words to his ever-expanding vocabulary.

While we were in Reno last weekend eating dinner with our friends who had a staircase, Joaquin discovered the the excitement of climbing stairs. We are on the third floor of the RHM and we usually take the stairs to our room not only because it's exercise, but also because the elevator is the slowest moving thing ever! Now Joaquin has to climb the last flight of stairs or else. He has also found how he can get himself off the bed without our help. He flips over to his belly and scoots to the end of the bed and then gently eases back until his feet hit the floor.

He also points out all of the artwork on the way up the stairs and likes to say, "up" as we go. The other day I pointed to the sky and said, "plane" as one passed overhead and a little while later he pointed up and said something that I know meant "plane" but might not be discernible to the untrained ear and only to those who are with him on a daily basis. Last night he was snacking on some penne noodles and tomato sauce during dinner and, as such is the case with most babies, he managed to get spaghetti sauce in his air, up his nose, and in his ears. It was plain to see that it was time for a bath.

We were never able to give Joaquin a true bonafide bath before because he had the dialysis catheter in his belly that could not be submerged. Usually we would just fill up the tub a little bit or bring him in the shower with one of us. After transplant he had his PICC line in and that could not get wet or it might get infected. Once the PICC line was removed we were able to really give him a good bath and let him play on the bathtub. We bought him some little sea creatures that he likes to toss out of the bath and onto the floor. He likes being on his belly splashing the water. He'll be playing contently in the bath and every once in a while say, "bath." Even when his little hands are wrinkly and cold, and his little jaw is chattering, he doesn't want to get out. But all good things must come to an end sometimes and that includes bath time.

Our next clinic is Monday, along with another xenopax infusion. I'm anxious about the infusion because now that he doesn't have his PICC line they have to put an IV in somewhere. I'm thinking about just having them put it in his head again because that seemed to be the easiest and the less traumatic for him. The clinic appointment will be a breeze because we are not seeing any physicians, just the nurse so that he can get weighed and have his blood pressure taken. Simple.

I'm hoping that we are in the home stretch and will receive the go-ahead to return to Reno. At this point everything is going very smoothly and as long as Joaquin continues to do so well, we are on our way.

p.s. ~ Anyone who is interested in finding out how to donate to Joaquin's fund can check out and go to Joaquin's patient campaign site. Thanks to all who have helped out!

Monday, October 16, 2006

Good Times, Great People

What could be better than spending a beautiful, sunny, slightly windy October Sunday afternoon with all of your closest friends and family? Not much more except hearing some great music, raising money for Joaquin and awareness for organ donation!

I'm almost at a loss of words (if you can believe that) as to how I can express my deep gratitude and appreciation to everyone who took the time to come down to the Great Basin Brewing Company to support us. Thanks to all of your donations we raised $3,434! Everyone is very pleased with how well everything went with it being the first fundraiser. And all of the credit goes to our fabulous friends and family: Meredith, Ryan, Aaron, Kelly, Mitchell, Bob, Bobbie, Jenn, Brooke and everyone else who helped in putting things together. Also, a thank you to the Great Basin Brewing Company for being so gracious in lending the space and the hospitality. And we can't forget the bands who made it out: Sol Jib, Native Root, Frame of Mind, and Anthony Postman!

We packed up Saturday morning and left after I dropped Grandpa Johnsen off at the airport. While I was doing that, Mom took Joaquin to the hospital to get his blood drawn. We arrived in Reno around three o'clock. One of the things I miss so much about being away from home is our family potluck-style dinner so of course I wanted to round everyone up to get together for dinner. We made lots of yummy food and there was lots of great conversation.

Sunday morning we slept in a little and after we got dressed we loaded into the car and drove down to the Great Basin. The festivities were supposed to start at two o'clock, but things didn't really pick up until around three, which was fine because the Great Basin didn't mind that we ran over the four hours that we had originally planned the event for. It was scheduled to run until six, but Frame of Mind didn't end until ten o'clock.

It was so wonderful to see all of my friends and family there supporting us and listening to the music. There was a couple there that had read about Joaquin from a flyer that was hung up somewhere in Truckee and came down to support us. It was hard to believe sometimes that this was all for Joaquin and it was humbling to see all of the love and support from everyone.

I am so ready to come home. And being home for that short amount of time really makes me realize how much I miss my home and my friends and my family. But I think it's great that I am able to spend so much quality time with my Mother and that is one very positive aspect about being down here for so long. We both have time together and he is able to spend time with and get to know her grandson.

So we had to leave very early this morning to make it back to Palo Alto for clinic. Although we didn't have a set appointment - which can be good for it's flexibility aspect but bad for the amount of waiting it sometimes involves - we still wanted to be there before noon. One of the question that I wanted to ask in clinic was when did they think that we would be going down to just one clinic appointment a week, which is usually what happens after one month post-transplant. Amy, the nurse, usually writes down the questions we have that she can't answer so that the doctors can respond to them during their (brief) visit.

Dr Sarwal was the physician among many physician on any given day and any given rotation that came to see us. She asked how much water or fluids would Joaquin drink. I told her that I wasn't too sure but that before the surgery he was drinking a fair amount. I said that I would know better once he wasn't on 24 hours hydration.

And apparently that's what she wants to find out as well. We are trying out a new formula to bring down the potassium until the Prograf dose is lowered and we are also just hydrating constantly over the course of about 12 hours or until he gets 1 liter of water and then it's up to us how he gets the other liter. He can have juice, water, milk, etc. We are so excited about not having to be on 24 hour hydration because he's getting to this point where he wants to start walking and he's really mastered his crawling skills and it's hard to follow him around with his feed pump - not to mention annoying because it pulls on his face. We had been told by Cathy that he would have to be on constant hydration for the first year after transplant but then she ended backing that down to three months. I think that she would just rather over-estimate the amount of time rather than tell us a shorter time, and that's understandable.

Also, our next blood draw isn't until next Monday! The last one he had was Saturday, so that's over a week of no pokes. Our next clinic appointment is next Monday and that will just be a nurse visit, no physician until the following Monday. While Dr Sarwal was telling us this, Mom and I are sneaking glances at each other and when she leaves the room and it's just us and Joaquin we start giggling and have group hug with Joaquin in the middle.

All of this was sprung on us so quickly but I love it! This is just leading us closer to home. Our exact date of expected "discharge" from the RMH is December 4th, but Mom has to report home to the resume her teaching duties in the middle of November and I've also (not so) secretly hoped that we might be able to move back to Reno by Thanksgiving. If we aren't allowed to leave at that time I think we would just make the trip up there, but that's only about a week or two until the scheduled date. It's mainly up to Joaquin and his continued healing - as long as he keeps doing as well as he's done we might get to come home early!

These are just a few of the many photos taken yesterday. If anyone has any more they want me to put up or link to just email me at - Thanks again to everyone for making it a memorable and wonderful weekend! We love you all!

Friday, October 13, 2006

Road Trip

This weekend we are making a trip to Reno to attend Joaquin's fundraiser. We got the okay from Dr Alexander today at clinic and he didn't seem reluctant or concerned about it at all. We will do our labs Saturday and then not have any until Tuesday. Two whole days without labs! But it won't be the first time because we don't have to do labs tomorrow and we didn't have to do any today - all we had was clinic.

Clinic was uneventful - which is always a good thing. They made a few changes in his formula mixture and are talking about changing the type of formula he is getting. His potassium is a little on the high side, which is something we've always struggled with pre-transplant and apparently now post-transplant, but the two are unrelated. And I was confused as to what it meant that he had high potassium post-transplant because it was my understanding that once he was transplanted we wouldn't have to worry about this stuff. Amy wasn't helpful in clearing up the matter when I asked her, but today in clinic Dr Alexander explained that this was caused by his Prograf.

In the beginning of post-transplant life, Joaquin's on higher doses of anti-rejection medicine. After a certain period of time they back off on how much anti-rejection medicine he receives and when they back down on that, his potassium issue should clear up. Apparently, the kidney does not know how to properly deal with potassium when it's simultaneously dealing with larger quantities of Prograf. I'm sure that will come in the next few months along with other changes. Around the 100 days mark, we stop giving other medicines as well such as the anti-viral medicine. I think that by around the six month mark he will be down to just two medicines that he will take the rest of his life.

This week we took my Dad to San Francisco to see the city and to let him indulge in seafood. I had originally enticed him with the clam chowder in a bread bowl but he also had some crab cakes and his favorite: fish and chips.

Today we drove out to Half Moon Bay to just visit the beach. I found the beach that we had frequented last summer but this time you couldn't walk down to the beach because apparently there were some seals that needed to not be disturbed. So we enjoyed the view from the top of the cliff until the clouds rolled in, covered the sun and chilled our bones.

Saturday I will be dropping my Dad off at the airport so that he can fly out by 10:30 a.m., meanwhile Mom will be taking Joaquin to get his labs done after which I will swing back through to pick them up and then we are on the road! And I'm pretty sure I can speak for Joaquin when I say that we are so excited to see everyone!

Monday, October 09, 2006

PICC Line Woes

I found myself wondering today why we couldn't just catch a break with all this PICC line troubles. Joaquin was scheduled to have his xenopax infusion at 7:30 a.m. and when I went to flush his PICC line last night before bed I noticed that fluid was seeping from underneath the dressing. No good. I was hoping and praying that it would work but knowing deep down inside that wouldn't be the case. I just knew that it had finally bitten the dust.

And I was right. We had one fleeting glimmer of hope that it was flushing properly with no fluids seeping out but then we saw it. The nurse called the PICC team to come down and look at it. It was the same nurse who had dressed it before we left the hospital after our last visit - her plan was to undress it and then try and pull it out a little. Her thought was that perhaps a little fibrin - which is the body's natural defense to foreign object and forms a coat over the object to make it more like the body - was causing the problem. She thought that by pulling out the PICC line a little bit (because we can't push it in for concern of contamination and infection) it would loosen the fibrin and allow the PICC line to work again. Or, the other problem could be that his vein is just shot. The later turned out to be the case. Around noon the PICC nurses came down to remove the PICC line and place an IV so that Joaquin could receive his xenopax infusion.

I didn't know that it would be so difficult. The tried twice to place it and both times they had no luck - his veins were just too small. They called Dr Wong to tell her and when she arrived we had to discuss the possibility of another surgery to place a better PICC line that would be performed by surgeons but would also involve anesthesia. Chris and I had discussed this before because they mentioned it while we were in the hospital last time. We had decided that we did not want to have the surgery. Joaquin only has about five or six more xenopax infusions. He's also at a point where his Prograf is remaining steady (yay!) - which means less blood draws. But the problem with placing an IV so that we could do his mandatory and very important xenopax infusions could mean we might have to consent to the surgery.

The nurses had been eyeing the veins in Joaquin's little head. They thought that they saw a good one along the side of his head. Dr Wong left and said that if they could place the IV today then it would be two weeks until the next infusion and then we could discuss our options again at that time or if it was not placed today then they would go ahead and start making the arrangements for the surgery.

After Dr Wong left the PICC nurses turned to me and asked what I wanted to do. I asked them if they felt confident in trying to place the IV in his head and if that was a good shot. They felt like it was although she said that she is never too confident placing IV lines in little guys like Joaquin. She said that parents just didn't usually like seeing their kid with an IV in their head! At that point I didn't care because the IV would be out in about an hour anyway so no one would even see him. I said that we would give it one more shot and if it didn't work we would be done. And we finally caught our break. They were able to place the IV line and he was able to receive his infusion. I wish I would have had my camera with me because they had to put a little mesh cap-looking thing that was open at the top which made his hair stand up. He looked so funny! If having an IV in Joaquin's head means no surgery, I think I can deal with the minor aesthetic aspects of it.

After he was well on his way to be infused, Dad and I left to go find some lunch. When we got back Mom said that Dr Alexander had been in and he asked about the PICC line and Mom said it was out and he said good. He felt like we would be able to get by without another PICC line as long as they could get an IV. Like I've said before, it good to hear Dr Alexander say that because he's one of the main doctors on the renal team, very experienced, and only has Joaquin's best interest at heart.

We arrived back to the RMH late in the afternoon feeling relieved that we had mad it through the day without having to schedule surgery. Now it was time to await the blood test results from this morning's labs. It's like I would love to relax and feel good about everything but we also had to see if his Prograf level okay. And it was... So we don't have to have labs drawn tomorrow!!

Tomorrow we plan on driving up to San Francisco and go to Fisherman's Wharf. Dad has never been there and Joaquin wants to go bark at the sea lions. I also enticed Dad with the prospect of clam chowder in a sour dough bread bowl. He's never been to Fisherman's Wharf or San Fran except to fly in and take a bus to Palo Alto last summer. And then Chris is driving down tomorrow with some friends to go to the Roger Water's concert at Shoreline Amphitheater in Mountain View, just a few miles down the road from Palo Alto. We received the tickets from a friend as a wedding gift and we are looking forward to it and spending some time during the week together. Grandma and Grandpa are looking forward to babysitting!

Joaquin's COTA fundraiser

Sunday, October 08, 2006

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.

Wednesday, October 04, 2006

Climbing the Mountain

At a distance a transplant can seem like such like such an overwhelming event especially when the outcome is not certain. I don't think that a person realizes how good life can be when your body's organs are all working and doing their part until they are on the other side of the figurative mountain. For me and my life experiences, when I saw something looming in the distance and I had to prepare for it - it was like, how is this going to work? Am I going to be able to do this? It was similar to preparing for a natural childbirth and comparing it to climbing a mountain. Standing at the bottom of the mountain looking up can look pretty daunting and one questions whether or not it is possible, and if so, how? But once you're are doing it or your in the midst of it, suddenly you look around and you're doing it. And before you know it, you've climbed the mountain and your looking down or looking back on what you've just done and you think, that wasn't so bad. Hindsight is 20/20. I always think about when we will be home and looking back on this time.

Yes, there are scary times throughout all of this - every little sniff or sneeze or cough I hear Joaquin make causes me to worry whether or not he's catching a cold and will have to hospitalized or worse. I have to admit that my severe resistance of the hospital has deminished and I think to myself that if we have to go back, we have to go back and we can do it. I'm not sure whether or not it's a good thing my hospital tolerance has gone up. Sometimes I feel like my strong repulsion was what kept us out of the hospital the whole year he was on dialysis, but I also realize that that sounds a little silly.

But throughout all of the what-ifs, rejection warnings and precautions from the transplant team, I have begun to see how good transplantation is for those who need it. For as much as I honor the cycles of life, such as death as a natural occurrence, I also have found a deep appreciation for what the medical institution can do for people who need a properly function organ.

There are two teenage boys staying at the RMH - one who has had a heart transplant and one who received a kidney transplant. The other day I was outside with Joaquin while he was playing in his little red car and my attention was caught by the two boys playing catch with the football near the back of the house in the play area. Two boys who before their transplants didn't feel good and probably couldn't have played football even if they wanted to, and now they're out running around. Despite the medicines and the doctors and the hospital, these people have a new lease on life and I am continually amazed at how well all of the children who have had transplants at the RMH are doing. I've always said that I wanted to be an organ donor if anything should happen to me, but I never really understood what that means to the people who really need that organ.

Tomorrow we are scheduled to have Joaquin's old PICC line taken out and another one placed at 8:30 a.m. in the PACU. I also have a donor follow up appointment with Dr. Concepcion whom I saw today while we were waiting to have Joaquin's blood drawn. He asked how Joaquin was doing and then asked how I was doing. I can honestly say that I'm feeling around 90% better now. I can lay on the side that the incision is on and I don't feel too much stiffness, although the area is still a little sore and numb. Dr Concepcion gave me an enthusiastic thumb up and proceeded on with his no doubt hectic day.

Here's a picture of Mom and Joaquin (yes, she really is here and not playing hookey from work and lounging poolside at some Club Med resort!). I just recently purchased this sling from another mama and Mom decided to take it Joaquin out for a spin in it. I swear that he's almost as big as her now.

Monday, October 02, 2006

The Waiting Game

Today started out like any other day for us. We woke up and got ourselves ready to go to the day hospital to have blood drawn and then a clinic appointment afterward (remember we're doing Monday/ Thursday clinics.) We get there and the nurse tries to draw blood from Joaquin's PICC line and nothing comes out. Keep in mind that this is the same PICC line we've had all along and it's just been progressively pulled out each time (with the exception of the last time) he has his dressing changed.

So the nurse decides to give him a medicine to try and unblock the line. Before she did this she called the Home Pharmacy people, who change PICC line dressings, to come an change him. She administers the drug and we wait for the HP people to come. And we wait. And we wait a little more. The nurse had wanted to let the medicine sit in his PICC line for a little while - around a half an hour, so she comes back out to check it and says that the HP person is on her way down, that she just had to run upstairs to grab something. And another half an hour rolls by. At this point we have been waiting in the germ-infested day hospital and all Joaquin wants to do is crawl all over and put every little germ-infested toy in his mouth.

Mom and I take turns putting Joaquin in the stroller and wheeling him around the main floor in hopes of distracting him just a little longer while we wait. Finally she shows up and we are ushered into a room in the day hospital. The nurse takes one look at the condition of Joaquin PICC line and how far it's been pulled out and says that it's probably no good, which I don't doubt. I feel like that PICC line has just been hanging in there for dear life for quite a while now. So they decide to redress it anyway and then call the doctors to find out what they want. Of course that involves... You guessed it, waiting. Waiting for the transplant nurse (because our transplant nurse has the day off) to answer the page, waiting for the nurse to talk to the doctor, and then waiting for the transplant nurse to get back to the day hospital nurse.

So by the time they decide they want to do the chest x-ray to determine where exactly that PICC line is located, we've been waiting for about 4 hours. I'm a little upset about having yet another x-ray done on Joaquin. He's had so many and who knows exactly how numerous x-rays affects a person. But it needs to be done so that they can see where the PICC line is at and if they can salvage it.

Long story short - they can't save it and so we are probably going to have to have another PICC line put in tomorrow. That involves Joaquin being put under (yet again) general anesthesia. I don't like watching him be put under at all. But it's time for a new one. And the sad thing is that this could have been avoided if that first nurse had known what she was doing when she was changing the dressing on the PICC line in the beginning.

This weekend our close friends came out to visit, Aaron and Kelly, and we all made a trip to the beach. The coast was a bit cold, but there was a little sunshine and not many clouds. We had another "holiday" on Sunday - no blood draw. We've been holding steady with a dose of 3.6 ml twice daily of Prograf, so this may be the start of fewer blood draws and fewer clinics, which of course means that we're that much closer to going home!

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