A Tale of One Kidney

A week ago today, we were released from the hopsital.  Since that time, Max has been incredible.  I am continually astounded by his strength and ability to bounce back after major surgeries.  He stopped requiring any narcotic pain reliever 4 days after surgery and left the hospital not even requiring Tylenol!  We have been spending our days either playing at the park, reorganizing our house after months of neglect due to dialysis, or attending appointments at the hospital for Maximus.

Currently, he is on a pretty full medication schedule (10 + a twice monthly IV infusion).  However, over time many of these will taper off.  Max needs labs drawn twice a week and sees his doctors in clinic twice a week.  These will taper off over time, as well.

Right now, we are monitoring his immunosuppressant levels.  His dose seems to change after each lab draw.  We are also decreasing his dose of steroids weekly, which makes me happy.  They are wreaking havoc on him to the point where he is incredibly restless overnight and now goes from 0 to 60 in about 2 seconds.  Max used to throw temper tantrums, as any 2 year old will do.  However, now Max turns into demon child in the blink of an eye and I do mean demon child.  I will be glad once he is no longer on the steroids, but it will be a long, long time before that is the case.

We are also working on eating.  While Max has not really begun eating on his own, he is tasting all kinds of foods.  This is something he would never do in the past, so we are looking at this as great progress.  He is delighted by sitting in his high chair and being given finger foods.  If I could only get him to actually take a bite and swallow, everything would be perfect.  We are told over time this will happen, but it could take several months for him to get up to speed.

Thanks to everyone who kept Max in their thoughts throughout this whole process.  It seems amazing that it was only a little over two weeks ago that we got the call and now he is running around with a fully functioning kidney!

Maximus has had a huge day today.  We were able to unhook him from IVs, monitoring and his feeding tube and he played in the room.  This was his first time on his feet since last Monday.  I kept trying to explain to him that we could not go outside the room unless he put on a face mask.  I finally got him to do this and keep it on.  We then ventured out into the Uunit and then out into the hospital to run the halls.

He was so excited to be outside the room that he was calling out, "YEAAAA.. OOOOHHHH... OHHHH!!  WOWWWW"

We also found out today that discharge may be possible as early as Tuesday!  As of yesterday, his lab values for creatinine and BUN were as low as they could possibly be.  He is doing fabulously well!  We are so excited we can't contain ourselves....

I am pleased to announce that the transplant was extremely successful.  Maximus has a new kidney that appears to be functioning unbelievably well.  Within 12 hours post transplant, his lab values were all normal, something that took James and I completely by surprise.  I did not expect he would go from a 3.6+ creatinine level upon admittance to 0.5 in 12 hours.

Since that time it has gone down to 0.2 and is currently hovering around 0.3.  All of these values are completely normal.

His doctors are estatic.  We are estatic. 

Max, on the other hand, is pretty grumpy.  He has tubes coming out of him in every direction, including 3 IV's, a central line, cardiac and respiratory sensors, a foley catheter, a drain line from the surgery, a blood pressure cuff, and a pulse ox line.

He is currently in ICU and will probably remain here until Friday.  He is in ICU, not because he is so critically ill, but rather that he is requiring a tremendous amount of nursing care (monitoring, continual med doses, draining of surgical lines, monitoring his fluid output through the cathether and replacing it via saline infusions, etc). 

For the first time today, we have him sitting up in a special chair in bed and he seems a bit happier sitting upright, rather than reclining in bed constantly. 

The final cross matches came in today and they look great.  There was some question about what the final ones would show and they were a little worried that we could end up with a significant rejection issue.  However, that is not the case.  Instead, everything seems to be going exactly as they would like it to.  We are likely to be in the hospital for another week as they continue to monitor him and play around with immunosuppression levels.

I will try to keep this updated a little more regularly while we are in the hospital.  We would like to thank everyone for all the positive energy, prayers and thoughts and would also ask that you keep Max's donor's family in your thoughts.  It is an amazing thing for us that they decided to allow organ donation after their loved one's passing....

I received a call at 6am this morning.  We have another deceased donor.  This time the kidney is pristine.  I am currrently up at Doernbecher with Maximus.  He's had a chest x-ray, ekg and 25+ vials of blood drawn, as well as an IV placed.  I've talked to the surgeon, seen multiple doctors. This one is a go!

We expect he will be in surgery around 11am and that it will be 3-4 hours in length.

Please keep us in your thoughts.  I will update again once I know how things are going.

We just returned from our camping trip and Maximus had a grand time.  I am so pleased we were able to do this prior to a transplant surgery.  We took the dialysis on the road and managed quite well in the tent.  I even had to improvise with Max's feeding pump because we forgot the IV pole, which is generally necessary.  When I figured out how to set everything up, sans pole and using bungee cords and the sides of Max's pack n'play, I felt like McGyver!  The boys slept so well each of the two nights we were there, I found myself getting up to check and make sure they both were breathing several times. 

I guess that's what the great outdoors will do for two little boys. 

We had such a good time, but it was way too short.  Consequently, we already made reservations for a longer trip in mid-July.  These camping trips have done wonders for our well-being and have proved to us that there is life after dialysis, after all!

Again, my mother's tests are proceeding quite well.  The donor coordinator confirmed that my mother's creatinine and BUN levels are "stellar", two levels key to kidney function.  We shall see how things continue....

At 8:30pm on Thursday night we learned that although cross-matching was not an issue, the donor was declined.  We knew this was a possibility.  Though we were somewhat disappointed, we now know that Max has garnered enough points on the list to be at the top for his particular profile.  He will be offered any kidney that now matches his profile.  This is good news.  Up to this point, we had never gotten that far in the process.  We recently expanded the criteria for a match and within several weeks, there was a matching kidney.  We are now confident that expanding the criteria has helped and are hopeful that we will hear some good news soon.

We are looking at this experience as a "dry run", letting us know where we really were not prepared and we now have the time to get truly organized, so that the next call doesn't set off quite the flurry of activity we experienced this time.  I believe we had been waiting so long for a call that we had grown somewhat complacent.  In the back of our minds, I believe we didn't really believe that call was ever going to come and as such, our state of 'readiness' was not at the level it should be.

We now have a better understanding of what it will look like when we do get another call and we are beginning to develop plans on how to manage the initial admittance, packing, what to do with Max's brother, Rowan, etc.  My mother will be flying out to help, but we do not want her jumping on a plane until we know they have actually looked at the donor and have deemed the kidneys acceptable.  This experience allowed us to get a feel for what that process would look like, as well.  Now my mother also has some time to get herself prepared again and be in a state of 'readiness'.

All in all, it was a very positive experience.

We do have a camping trip planned.  We are leaving tomorrow to do our first real tent camping with the boys and with dialysis.  I must admit, I am glad we will still be able to do this trip.  I think it will be great for Max and for Rowan and I would really like the opportunity to have Max experience this now.  If a kidney is coming soon, he will need to be fairly isolated for a time and our summers are normally spent outdoors, at the parks in our area, etc.  I would like him to have as much fun as possible before he has to undergo such an immense surgery and recovery.

My mother's process as a potential donor is proceeding, though again, it is very iffy whether or not she will ultimately be deemed acceptable due to her age.  She is arriving on June 9th and will stay for three weeks, during which time she will undergo the remaining series of exams to make that determination.  So far, all results have been good for the exams she has done back in Chicago.

Please keep Max, my mother and our first donor, Michael in your thoughts...

As you might imagine, I haven't updated in quite some time simply because life has been hectic.  A great deal has happened in the last month or so.  From decisions to begin Max on growth hormones and then decisions to not start the growth hormones, to a lovely mini-vacation in a tiny cabin in the woods.  From a broken connector on the dialysis catheter necessitating an emergency call to our nurse and an evening trip to the dialysis center for repair, to Max holding his red blood cell count on this own, something he's never done on his own.

Our donor is working on the conditions set forth by the transplant team in order to be considered again for donation.  We wish him well as he progresses.

In the meantime, a second donor stepped forward and began the process several weeks ago.  We found out on Friday that she is also match and that second donor is my mother, Max's grandmother.  Age is a significant factor in this case.  However, after extensive discussions with Max's nephrologist, the decision was made to allow her through the process.  At the time, we didn't even know if she would be a match.

Now that we know she is, she must still undergo extensive testing, testing even more intense than our first donor, due to her age.  She will do a glucose test and urine catch on Tuesday and Wednesday of this next week.  If that goes well, she will undergo a stress test.

She will be coming out here from June 9th through the 30th and will undergo all further testing at OHSU, rather than in Illinois, where she lives.

Her offer is beautiful and gracious and we can not thank her enough.  Please keep her, Michael and Maximus in your thoughts.

Max has been working with a speech therapist weekly and I have been stepping up my efforts at sign language with him.  He is beginning to develop speech quite a bit faster with the therapist's help and I can't help but think the sign language is helping him, as well.

I've posted pictures from today, a gloriously sunny day, spent along the riverfront and up at Mt. Tabor.  Max and his brother, Rowan, had one amazing day!

The decision was made last week at dialysis clinic that growth hormones are now an imperative for Maximus.  The subject has come up many times over the last year.  However, we have always held off for varying reasons.  The most recent reason was because we were assuming the transplant was looming just on the horizon.  At March's clinic visit, Dr. A. told me if something fell through on the transplant front, Max would need to begin the hormones.

The process to get the treatment approved involves a great deal of paperwork and is somewhat lenthy.  The dialysis center began the work last week and today I took Max to get a bone-age completed.  This is an x-ray of the left hand.  The results from that are already in and they indicate what we already knew.  Max is significantly delayed in growth.  Chronologically, he is 27 months in age.  However, his bone age is only 18 months.  He would benefit from the hormones. 

In the words of one our healthcare workers, "We don't want a Gary Coleman...."  Gary Coleman suffers from chronic kidney disease and grew up in an era where growth hormones were not an option.

The treatment is a once daily shot, which I am not looking forward to in the slightest.  But, I do want Max to catch up where he can and if a shot is going to help, then I'll administer it happily.

We also received the official results from the Multnomah County Early Intervention Program assessment.  They are as follows:

1. Max is demonstrating significantly delayed adaptive skill when compared to other children his age as a result of his lack of taking foods orally.
2. Max is demonstrating signicantly delayed cognitive skill.
3. Max's social skills are within the typical range compared to other children his age.
4. Max's communication scores demonstrate a significant delay compared to other children his age, though his receptive language is a strength for him.  It should be noted that some of Max's receptive language score can be due to the priority of his health over teaching behaviours such as pointing to items in books, and do not fully reflect his understanding of certain words or concepts.  His mother reports he is very observant, and understands and predicts sequences of events related to his medical care as this has been part of his routine.
5. Test results indicate Max is overall demonstrating mildly delayed motor skills when compared to other children his age.

Most of this does not come as a surprise to us.  We have been aware for some time he is delayed. I didn't realize how far he actually was in some instances.  However, I am happy we now have someone coming in weekly to help us.

Since that assessment was done, we have been working on baby sign daily and as we progress, I am finding his frustration seems to be dropping some.  He can now sign the following words regularly:  Daddy, Mommy, baby, eat, kiss, ball, friend and sleep.  He has recently also begun signing "help" and "bath".  I know he knows how to do "more" and "please" but he rarely does them for me.  He also knows "water" but he would rather whine at me until I figure out what he wants than to actually sign for it.  This is just typical Max.

I have no news regarding transplant, other than that our donor is back in the running.  He needs to complete a couple things before he can be considered again and as far as I know, he is progressing along those lines.  There is no information on when or if a transplant could occur.

Dialysis seems to be settling down a bit.  I am getting more sleep and we found out last week that the therapy is within acceptable levels, doing what it needs to do.

We have plans as a family to go cabin/camping at Silver Falls May 3rd - 5th for our anniversary.  This will be the first trip where we will have to deal with dialysis and actually the first trip in exactly two years.  We are excited, though also a bit anxious about ensuring we have all possible supplies....

Wish us luck.... we desperately need a break, even if only for 3 days.