Day by Day

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

Wednesday, January 28, 2009

The Follow Up

Within the week after we returned from Las Vegas I opened a letter from the renal clinic and our nurse saying that they wanted him down in Palo Alto on February 12th for the VCUG reflux study. We had been expecting that but the more I think about it, the more I feel uncomfortable with it. I don't think that my uneasy feelings about it weigh very much to the other people involved in his care, including Chris. I would like to believe that they wouldn't do anything to him that wasn't absolutely necessary so we will probably do this study. The study included catheritizing him, or placing some sort of tube up his penis. That is what makes me so uncomfortable. He already has a problem with his "plumbing" and urinary tract infections, I would think that pushing something up someplace that should only have things going out could pose problems in the future. I worry that it will push up all those bugs and other germs that are not meant to enter. But, really, what do I know?

The other part of the letter from the clinic was indicating when our follow up biopsy would take place: February 27th. At some point we were told we would need one and that it would probably take place 6 weeks after the original biopsy. This time it appears that it will be an outpatient thing instead of inpatient would mean that we would not be admitted to the hospital at all. I'm going to stay positive that the biopsy and VCUG will be complication-free so that we can just go back to our life as quickly as possible.

At first I was a little upset by this. Part of me feels like the doctors are taking advantage of the fact that we allowed the biopsy at all, but I recognize that as most likely being an irrational thought and not at all the doctor's intentions. Another part of me feels a little irritated that they are scheduling this two things in February and so close together since it will require Chris taking off more work. I'm sure that I could go down and handle it myself along with another adult to help with Sage but I know that Chris wants to be there too. I feel like it's a little inconsiderate of our family as a whole but at the same time, Joaquin is their concern, not us. So I guess I understand.

I am mostly okay with all of this. I wish we didn't have to go through it again but it wasn't as horrible as I had anticipated it to be. I'm hoping and praying that both procedures and quick, virtually pain-free, and complication-free so that we can return to our normal lives as quickly as possible.

Joaquin has been doing remarkable since the biopsy. It was like a blip on his radar. He recovered so quickly and has been doing so well since. Growing like a weed, eating like a horse, and chattering like little people tend to do. He can count to ten alone and today we counted to thirty together. He can count to five in Spanish and to three in French. He's recognizing his numbers better every day. He's saying the funniest and sweetest things.

Wednesday, January 21, 2009

The View From The Hospital

I was finally able to upload some pictures although blogger is not making it easy for me. These are from our time in Palo Alto at the children's hospital.

This is the boys playing in a playhouse on one of the decks.

Friday was the first full day in the hospital. They placed the IV on Thursday night when we were admitted and so all day Friday he had to wheel around with him. He was hooked up to the IV because he needed to be NPO (meaning nothing by mouth) for at least 12 hours before the biopsy.

Another one of the boys playing. They do have lots of fun stuff for little guys to play with there.

Joaquin was NPO for about 16 hours after the biopsy. He was grumpy and starving after his procedure and finally he was allowed a popsicle which he shared with little brother.

Obviously enjoying his first post-biopsy meal.

Sage and I tried to keep Joaquin occupied for the 8 hours he was supposed to be mostly immobile following his biopsy. That was hard but we got through it.

Chris talking on the phone while we spent time outside on the roof of the hospital.

Sage and Joaquin playing on the roof of the hospital. Note the wagon: we made good use out of it!

Sage checking out the train station set up on the first floor of the hospital. This was the morning we left for Reno after his last blood draw.

Monday, January 19, 2009

Not Going Down That Road

Sorry to have just left this blog hanging after I was posting so much. We arrived back in Reno on Wednesday afternoon and left Thursday night to come down to Las Vegas to visit Chris's family.
Tuesday before being discharged we made a plan with Dr. Alexander to stay overnight and do labs again in the morning. Joaquin's Prograf level was very high and he was on a very low dose of Prograf. The doctors were thinking that the steroids he was given may have artificially raised his levels, since that can happen. The lab that we go to in Reno is not able to do the Prograf levels for us and they fly it down to Las Vegas. So the turn around time is longer than at Stanford where they can receive same day results. On Wednesday his level was back in his "range" but they kept the dosage the same and so we had to do another test on Thursday morning. We won't know about the results until tomorrow.
So basically what we know and what Chris and I have been able to understand is that when looking at the preliminary results on Saturday from the biopsy on Friday the pathologist saw inflammation in the kidney which would lead them to think rejection and/or infection. Since he also tested positive for donor specific antibodies (DSA) they thought it would be one of two types of rejection: 1) cellular, or 2) humoral. Chris and I are thinking they thought it was humoral since that's the type that corresponds to a kidney transplant patient having the DSA's present. Dr. Grimm was still optimistic about it but I could tell that he wasn't totally optimistic just by his voice and face.
I really thought that it was humoral, unfortunately, since there were the DSA's present and they said he was having a case of rejection. We had to complete three days of steroids and 14 days of antibiotics. Monday he finished his last dose of the steroids and Dr. Alexander wanted us to stay in the hospital until we heard back on what type of rejection it was since if it was humoral rejection we would have had to do an IVIg. I guess you're supposed to wait a day between the steroids and the IVIg. So we would have started that on Wednesday and it would have taken 10 hours to complete the full treatment via IV, of course.
So in the late morning Dr. Alexander came into the room. Looking back on that I don't know if it was as he walked into the room or later after he had left that I noticed he was in a good mood. At the time it didn't really affect me because we were coming to peace with this whole rejection business. We start talking to Dr. Alexander and he said that there was no humoral rejection and gave us a big smile and thumbs up. I looked over at Chris and he looked at me. We were catching a break! He went on to say that upon closer look and more testing they were thinking that it wasn't rejection at all but infection. He also had a positive urine culture. Now, if y'all remember, back at the end of October Joaquin was sick and also had a urinary tract infection. Since then he had tested negative, but apparently Dr. Alexander did not know about that. The certain type of bug he had tested positive for is a tricky guy that is hard to get rid of. I remember Dr. Alexander said, "That's it!" when we put all the puzzle pieces together. In a sense it's both a good thing to have so many doctors and a bad thing since all the information about one patient sometimes does not get to all the doctors. But that's what we parents are for, right? We keep all the information straight.
Dr. Alexander was saying that there was no need to keep Joaquin in the hospital anymore. We are planning to go down to Stanford in another month for some more tests, specifically one to see if he's refluxing into the his kidney. Joaquin's always had "plumbing" issues - it was the whole reason for his kidney failure in the first place. Dr. Alexander said that no surgeon would ever admit that his plumbing didn't work but that it sometimes happened that way. The refluxing could be the reason that he's having so many UTI's. And since Joaquin did test positive for DSA's, there's a chance that we will most likely go down and do an IVIg. The reflux test and the IVIg can all be done in the same visit when we go down again.
This all just felt like a miracle to me. I didn't think once the words "rejection" were spoken they could ever be taken back. I thought we were going down that path, that we'd have a rejection under our belt. I just never thought that we could go back to not being in rejection. I was worried that even if he did have little to no scarring that once his body started trying to reject my kidney it would be a bumpy road. I couldn't believe that Joaquin's kidney was rebelling. Turns out it wasn't.
We are flying back to Reno tomorrow morning early and I imagine I'll have a lot of unpacking and resettling to do so I'm not sure when I will be able to update again. I plan on putting up some pictures of our time. The one I posted is from the night we were released from the hospital and we're all in our hotel room. Good times. Joaquin was so excited to be out of the hospital. We were too.
Thank you again for all your thoughts and prayers and for helping us get through this.

Tuesday, January 13, 2009

No Rejection?!

We have crazy news for you all. After seeing more of the biopsy results today the doctors are thinking that we are dealing with infection and not rejection!!!

Chris and I are in a bit of shock and I'm still processing the information and so I don't feel like I can put it down coherently right now but hopefully in the next few days I can. We are still waiting for a few more results but as of right now Dr. Alexander is thinking that it is most likely not rejection.

They want us to stay down here until tomorrow morning so we can have one more blood draw as his Prograf level is still very high and we aren't sure why. We plan on making a trip to the ocean today to celebrate and give thanks.

Thank you so much for your prayers and good thoughts, from the bottom of our hearts.

Monday, January 12, 2009

More Waiting

Today our day nurse came into the room and said something along the lines of us possibly being discharged. I was a little shocked since I'd been mentally preparing myself to be here until Wednesday and I'm not sure why. We were supposed to hear back more results from the biopsy today but we heard nothing. Around noon I thought the doctors were going to come into our room since they were rounding but we were skipped. Later our nurse explained that they were waiting for the blood work that had been drawn in the morning that had never been run. I still was not thinking we would be released today.

Around four, Joaquin and I went back to the hospital room. The Forever Young Zone (FYZ) is open almost every day from two to four and Joaquin has been waking up in the morning asking to go. Today he wanted to leave early because he was hungry. I thought he was a little tired too so we went back and I washed him up some grapes and he sat in his bed and snacked them. About half way through he patted his tummy and said, "That's what I needed." Not too much later the nurse came in and asked if we had spoken with his doctors today. When I replied no she said she would go and page a team member so we could know the plan. I got butteflies in my tummy again. I've been afrain that there's more bad news coming for some reason.

Close to an hour later a pediatrician came into the room. I thought she was just a floor pediatrician, not related to the renal team but Chris says that she is. I'm not sure. Anyway, she said that they were waiting for more results from the biopsy to come back and that they hadn't come back today. They would be in no later than Wednesday. What they're waiting to find out is what type of rejection is it. It could be two different kinds: 1) cellular - which they would have treated with this three day course of steriods; or 2) humoral - I don't know that I'm spelling that right but what it has to do with is the donor specific antibodies that were present in the blood test they ran earlier in December. If it is the 2nd possible thing then they would need to start the IVg (I don't know if I'm spelling that right, either) and then we would come back in a month to do another one. Today was the last day of steroids but Dr. Alexander wants to keep us around in the hospital until the test comes back.

So what that basically means is that we're just sitting here waiting. I was a teeny bit upset but then Chris put it into perspective for me that at least it wasn't "bad news" and that we were just waiting around versus something being wrong. He's right. We could hear the news tomorrow or we might have to wait until Wednesday. If it comes back as being the first we are done and out of here. The pediatric doctor or whoever she is told us she was sorry that we had to wait so long to hear of the plan and that she would talk to someone about talking to someone who could possibly speed things along in the lab.

Either way we're holding out okay. Joaquin is in good spirits although sometimes the IV bugs him because the bandaging gets too tight. He's really good about being careful with his IV too. Both the boys are getting a bit of cabin fever as we are all living out of this hospital room and the car. But there's lots to do around here and we try to get outside often.

So hopefully we will hear more tomorrow and maybe even be released but like I said, I'm mentally prepared to stay until Wednesday. Thanks for all the well-wishes, love, prayers, everything. It means a lot to us and gives us strength throughout this time.

Saturday, January 10, 2009

I Never Thought It Would Happen To Us

I think the hardest part of all of this for Joaquin was having to stay rather still in his hospital bed for 8 hours following his biopsy. It was important for him to do so because it would lower the risk of bleeding. We watched about three or four movies while Chris and Sage were out and about.

The other hard part was not having anything to eat or drink by mouth. He was on IV fluids so that he would not be dehydrated but it was still hard for a snacker like him. Not too long after he was situated back in his room the doctors okayed him having a popsicle. He was so excited and had about two and a half of them. He shared a little bit with brother too. After he demonstrated that he was able to hold down those they allowed him solid food. He made up for lost snacking time. Around eleven o'clock he was able to get out of bed and run around.

I woke up this morning feeling nervous complete with butterflies in my stomach. I didn't know what to expect. Things were definitely going on with his kidney but to what extent we were all uncertain. The waiting was hard. When I got to the hospital we all went outside on a little veranda to enjoy the sunshine and fresh air. Chris and I were just talking about the doctors when Dr. Grimm turned the corner (kind of an ironic name, huh?) along with one of the fellows. He came out onto veranda with us to deliver the news. His face wasn't very telling but he didn't seem ecstatic at all looking back on it.

Basically, he told us that an unbiased pathologist (he prefers not to know whose kidney he's looking at) said that the kidney tissue looking inflammed and that based on that he would say rejection was going on. My heart dropped. The news we did not want to hear. He said that the good news (yay! good news!) was that he did not see any scarring which means that the rejection happening was reversible.

I have to be honest, my initial thought was that all those prayers didn't do anything. I was crushed. I lost faith. I felt shaky and a little weak. But I didn't cry. I clung to the hope the good news offered. Soon after I had that thought, I thought to myself that the prayers did work because there was no scarring. His kidney was not going to be lost. His kidney was healthy and if it was not healthy it could be again. Chris told me that maybe prayers didn't work specifically, if that makes sense. I figure that God or the universe had it's plan or path for us and that it will all work out.

It's sad, and Chris would probably say that I'm feeling sorry for myself, but I've lost a little faith in my own motherly intuition. Motherly intuition does not readily lend itself to kidney transplants, I've decided. To me, motherly instinct and intuition are natural things. Kidney transplant are not natural things. Perhaps I shouldn't lose complete faith, and I haven't. My motherly intuition falls short in all things concerning his transplanted kidney which ironically is my kidney. I told the doctor that I felt a little hurt that he would my kidney would reject him to which he quickly corrected me that it was his body rejecting my kidney. He also said that it's just a warm up for the teenage years. He said there are lots of complicated emotions surrounding donating kidneys. I guess I had just hoped that we wouldn't have to face rejection.

Dr. Grimm said that this type of rejection happens to about 30% of patients so relatively not uncommon. I asked if it perhaps was the emergence-c that we had given him when he was sick. His numbers got weird right around the time he got sick at the end of October - that's when all of this started to happen. The first indication being that his creatinine raised. He said it was a possibility and that when the sickness happened his body could have gone into red alert and that while running around fighting the nasty bad guy viruses it stumbled across the kidney. We'll know more on Monday and I'm sure I'm leaving something out here but I feel like I got most of it down.

I'm really not that scared although I did hit a wall today. We are going to be here in Palo Alto until probably Wednesday. They're starting him on steroids and antibiotics for the inflammation. By Monday we'll have the full picture. I'm thankful to have a little bit of info, though. I'm glad that part of the wait is over.

I've been trying to get pictures up but the computer around the hospital are not making it easy for me so hopefully sometime soon I'll have some to share. Joaquin has been in great spirits throughout all of this. The doctor said one of the side effects of the steroids is that he may develop a "voracious" appetite. I thought to myself, I don't know how much more this kid could eat. He already eats so much! So we'll see.

Thank you for keeping us in your thought and prayers. We appreciate it.

Friday, January 09, 2009

So Far So Good

Well, I am relieved to say that the biopsy went off without a hitch. He was scheduled to go in about 3:30 p.m. but they said it could be sooner or later since they were fitting him in. Around 2:30 p.m. they came for him and it was a good thing cause he was a hungry little dude. He sat in my lap as we were wheel chaired down to the pre-operative room. Sage came with us and we all hung out waiting to see the anesthesiologist. Once she had visited with us, asked her mandatory questions, and filled out the appropriate paper work we left for the pseudo-operating room (it had an official name but I can't remember it now). Sage wasn't allowed in there and since he still has a preference for mama I was trying to take him out but before I did I needed to give Joaquin a kiss goodbye and tell him I loved him. He asked me to stay with him so I handed over Sage to Chris and stayed. I do not like seeing him go under anesthesia and so I had sort of envisioned Chris staying with him but since he asked I knew I had to stay no matter how it made me feel.

The care team was all really great and I stayed with him until they administered the drugs to make him go to sleep. His head slumped against my chest and it was time for me to go. The nurse thanked me and I slipped out into the waiting room with Sage and Chris. I cried just a little bit but it felt different this time watching him go under. I felt he was going to be okay.

The doctors had said that it would be about 30 minutes to prepare for the procedure and about 20 minutes before the actual biopsy the main doctor showed up and explained in a little more detail what would happen. After he left we sat around and said a prayer for Joaquin and his kidney. Chris decided he needed something from the hospital room so he left and Sage had fallen asleep. The doctor came out and showed me a little vial that had clear fluid in it. He showed me a couple of little pink strands in there and said that those were the pieces of his kidney. He said that Joaquin had done an excellent job and that everything had gone "perfect." He said that they were going to apply pressure to the puncture site for 5 minutes to make sure there was no bleeding but that the ultrasound had shown none along with no irritation to the vessels around the kidney. After the 5 minutes were up they would begin waking him up and then they would take him to recovery and that we could follow and wait in another waiting room. Patience is a virtue in the hospital!

Soon the door opened and we saw him being wheeled out. He was sleeping and we followed him to another part of the hospital. They said that he would wake up soon so except to be notified any time. We waited.... and waited. I began to get a little nervous since it was taking longer than I expected. The phone in the waiting area would ring whenever a patient was ready for his family. The lady at the front desk kept leaving and the phone would ring and ring. I felt it might be Joaquin because there was only one other family in the waiting room. I paced. I wanted to answer the phone so badly but I refrained. Finally we were notified he was ready for us.

More later... and pictures too.

Biopsy Day

We are currently at the hospital where everything is going smoothly. We checked in last night at about 9 pm after driving down from Reno. Our nurse was great and they were able to place an IV quickly. Joaquin didn't cry or get upset in the least. He is currently is in great spirits.

The biopsy is scheduled for 3:30 pm, which will mean another overnight stay since he needs to be monitored for 8 hours following the procedure. It will take about 1/2 hour to prepare for the procedure - making sure he is sound "asleep" and doign an ultrasound for precise location of where the needles will be placed. The actual biopsy - where they take a piece of the kidney - will only take about five minutes.

We should get preliminary results tomorrow (Sat.) and will get the whole picture by Tuesday or Wednesday. Depending on the preliminary results we will either go home tomorrow or Tuesday or Wednesday. Not sure yet, the results of the biospy will dictate that. The course of treatment will also be determined by the biopsy results as well.

Please keep us in your thoughts today. We could use a lot of strength and good, healthy kidney vibes. Thank you.

Wednesday, January 07, 2009

Sooner Than Expected

It was quicker then expected but Chris received a call from Amy today saying that they couldn't get us into the outpatient clinic until the 10th of February and so instead they wanted us to come down tomorrow (Thursday) and check him into the hospital overnight and then fit him in some time of Friday. There's no set time for the biopsy.

I wish we didn't have to be admitted to the hospital because this procedure is an outpatient one but it looks like this is what is going to have to happen. I'm not really too happy about how this has to all go down as it seems to make things much more difficult and stressful for our family.

I plan on bringing the laptop down to Palo Alto with us so hopefully I'll get to update. We're hoping to do the biopsy and then be released Friday from the hospital but there is a real chance that he might have to spend the night again. Please keep us in your thoughts on Friday. We could use a lot of strength and good, healthy kidney vibes. Thank you!

Tuesday, January 06, 2009

Silver Lining?

First, I wanted to thank everyone who sent us their love and support - we really needed it and most definitely felt it.

I don't really have to much to update on. We didn't even hear from anyone at Stanford until today and it was only after both Chris and I called multiple times. At first it irked me that they would call and give us news and information like that and then take over a week to get back to us (after we called them!) and while it still does irk me a little I'm also feeling like that meant it wasn't urgent. If it was something that needed to happen quickly then we would have been down there last weekend. No matter how flaky they can be, they are on top of the care of their patients for the most part and tend to always want to "play it safe" which I appreciate So that's good, I guess.

Finally today Chris got in touch with Amy. She's making it sound like it isn't urgent at all and that it may not even be that big of a deal. She told Chris that at their Joaquin conference (a conference they have for all of their transplant patients) there was no mention of the word "rejection." So that's good!!!! We are going to go ahead with the biopsy since he did have the antibodies and both Chris and I feel like it's time. Ever since that sickness at the end of October his numbers have just been all wonky - we'd like to make sure everything is okay and that we're not missing anything. The doctors have never had a biopsy on Joaquin and they would just like to see an very clear picture of how it's doing. When I talked to Dr. Wong she really made me worry but their actions (as far as not making it an urgent thing and taking over a week to get back to us) have made me wonder if she wasn't just making sure they got this biopsy. We've always told them that if there was ever cause for concern we wouldn't hesitate and they know that. They've tried a few different times to "talk us into" getting a biopsy but we never felt it was warranted. Well, now we're all on the same page.

A big concern with doing the biopsies and Joaquin is that he didn't do too good with anesthesia the last two times he's been given it. He's much bigger now than when he had his last incidences and we feel like they are well aware of how wary we are of using it. We've talked to Joaquin a little bit about what the doctors told him and asked him what he felt about it all and he says his kidney's good and that if he just eats more pears, apples and bananas then it will be even better. He's such a character.

So as of right now we're waiting on Amy to let us know when they can fit us in. Some time this month, but we're not sure when just yet. I turned to Chris the other night and said, what if we just prayed that he didn't have any antibodies at all! Miracles happen. I just pray for a healthy kidney, both Chris and I feel like he's doing really well and so is his kidney. So, he's not sick. He's a happy, healthy, extraordinary 3 1/2 year old kidlet!

Thank you for all the prayers and I have to request that you keep sending them. Our prayers and blessings are with all of you as well.

We love you.

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