Saturday March 31

It's been 10 days since the last update, and we've packed lots in to them. On Monday, Julian went in to have 4 cavities filled. Sounds like no big deal, right? But being so little, the surgery has to be on an out-patient basis with general anesthesia at Children's Hospital! So, at 5:30 a.m. we packed him into the car with us and our coffee (I love coffee!) and headed out. It's an hour's drive to the hospital, so we got there around 6:30, checked him in, and his surgery was at 8:30. It was pushed until 9:00 because of the special formula IV he needed to have, one without potassium in it. When all was said and done, he had 7 cavities filled. You heard me. 7 cavities. No teeth pulled, however, and a thorough cleaning. His teeth are bright and shiny now, and SEALED! Unfortunately he doesn't have 3 of his molars yet...or they could have sealed those too.

He should be good to go for a year or so! It was necessary that we get all his dental work done prior to him being listed on the Kidney Recipient list. He has one more test and I have to complete a social evaluation with a social worker and that all happens next Thursday. He will then be on the list officially.

He won't be able to receive a transplant for another few weeks, however, because of the live vaccine MMR-V we gave him a week and a half ago. You need to wait 1 month after a live vaccine before giving anyone immune-suppressant drugs, otherwise they may develop the disease that they were vaccinated against because they were just exposed to a live version of it in the vaccine.

On another note, my mom is not doing well at all, and so we are all going to Phoenix for Easter. Julian and I will stay for a week, and Dave will stay just for Easter weekend. Since Julian will have no more tests, and be unable to receive a kidney anyway for a couple more weeks, we can travel with him. Technically they say you can travel anyway, even when you are actively on the list, but we don't want to do that because what happens if we are in Phoenix and a perfect match comes in for him? We have to either fly back within a couple hours, which is not always possible, or have the transplant in Phoenix. And since the surgical transplant team we want to use is in Denver, that seals the deal for us. We stay in Colorado until he gets his kidney.

My mom has cancer, metastatic breast cancer which spread to her bones and her brain. So far, after the re-diagnosis (she had breast cancer and was "clear" for a couple years...not really, actually, but they thought she was!) she has been on different regimens of Chemotherapy to manage the growth. This last Chemotherapy really took a toll on her body, and she is now not strong enough to continue the regimen. She has missed the last two weeks worth, which means the cancer has the opportunity to grow again and will. She has been in the hospital twice in the last 2 weeks, and is just not doing very well.

Thanks for your thoughts and prayers.

Wow! Busy Week Ahead

Hello all, this is Stacy. Julian has a busy week ahead. First of all, yesterday I received a call from his kidney nurse at the Children's Hospital, it looks like they want us in asap to talk about dialysis again. Seems that because Dave is not a match they are thinking Julian will be on the transplant list the better part of a year (or longer) and so they'd like to start him on Dialysis. We have more questions, and we can ask the Doctor when we go in a week from Thursday. Julian has been stable with his kidney function for about a year now, fluctuating from 14% down to 12.5%, where he is right now. But all of his other numbers look good (besides creatinine and BUN), and he is responding to the Epogen shots which is an anti-anemia drug that increased red blood cell production. So I guess I'm not understanding why we can't wait a few more months and give the transplant list a chance!

Dave and I agree that if Julian would be better off on Dialysis, ie his lifespan would be extended if he were on dialysis for the next few months to a year, as opposed to not being on Dialysis, we are all for it. That is the question I have for the doc on Thursday. We want to do what is best for Julian, that is for sure. If we can spare him invasive surgery and dialysis every night we would like to do that, so long as his kidneys hold up like they are. Currently we have one more potential donor (you know who you are! Thanks!) going through the process of being tested. If he is not a match, then we will have to wait for a "cadaveric kidney" which could take up to a year or longer to come through.

Yes! So pray that the donor is a match! Thank you!

Now, on to the busy week. Firstly, he has 4 vaccinations tomorrow. He's up to date, but because of his impaired kidney function a couple of the previous vaccines need to be repeated. They test his blood to see what antibodies he has developed, and he's got the mumps antibody but not rubella. So, he gets an MMR tomorrow, as well as a Hepatitis B, a Hepatitis A, a Pneumovax, and a TB test. I'll also take his Epogen shot up there so we don't have to give it to him this week. (Poor guy!) Then on Friday we go up for a psychological evaluation (all of us) which is included in the Transplant evaluation. Then on Monday Julian has mouth surgery at Children's to fill 3 cavities. They'll also take X-rays to see if there are any other cavities not seen in the visual exam that they can fill then as well. This is all in preparation to be put on the list. While Julian is in surgery, I will be attending a socialogical evaluation at the hospital. Once the vaccines, surgery, and evaluations are complete, Julian will be placed on the National Organ Recipient List.

After that happens, we wait. How long we wait is up to the Lord. Could be the next day, although they tell us that is highly unlikely. But God knows. If He wants to give Julian a kidney the next day, he can do it! It won't make sense, it will be a miracle, but He can do it.

So thank you for praying.

Testing, Testing...

Today was a big day for the little guy, the next steps along the road toward a kidney transplant.

We started in Cardiology for an EKG. Stickers all over and leads connected to the stickers and hoooolllld still now... jussst a few seconds more... Got it! Whew! Then, on to Radiology for a pair of chest x-rays. More holding still while the big machine overhead buzzes and snaps. Done? OK, off to the lab, where they drew 20ml, the max for someone his size. There's a battery of blood testing to be done, and if all goes well, they got all they needed today.

Trauma trauma trauma! And on top of it all, he missed his nap.

So, no actual appointments today - just lots of poking and prodding. We're optimistic (as always) that everything will run smoothly from here on out, and that Julian will be on "the list" in a few weeks. After that, it's a matter of organ availability.

Thanks to those of you who have expressed even a passing interest in donating a kidney. Seriously, that's huge! And we want you to know how much it means to us, even if you don't end up being "the one."

That's it for now. Enjoy the new pic of Julian at the top of this post. Stacy took it. She's been great at taking portraits of him as he grows and changes. It's amazing to look back at the old photos and see how much he's grown already. Hard to believe.

Lyrics to "I Will Lift My Eyes" by Bebo Norman

God, my God, I cry out
Your beloved needs You now
God, be near, calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me

‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now

If Anyone is Interested in Being a Donor...Read This. Thanks!

Hi there everyone! Stacy here! We are moving ahead full steam on getting Julian's Transplant Evaluation completed. This Friday is his EKG and his Ultrasound, as well as more labs! They've got to take 40 ml of blood in total for the tests, so we are trying to space it out so he has 3 or 4 draws over a month and a half or so, since he's still such a little guy and borderline-anemic. We resumed giving him Epogen shots once a week a few weeks ago, and boy does that break my heart! We have to do it ourselves. He is so confused after it's over, that we could stick him like that! I don't know who cries more, him or us! The Epogen is to try to increase his red blood cell production, as he needs to be "tanked up" for the transplant.

Several of you have inquired about what being a kidney donor looks like, so I wanted to post the information on the Blog incase you are interested in looking into it further. Especially any of you with O+ blood!

First off, let me say we would be humbly grateful to any of you who decided to be tested. Once you have decided you would like to be a potential donor, which is an intensely private decision and should be decided by your whole family, the next step is for you to call the Transplant Coordinator at Denver Children's Hospital. You must initiate the first call, and then she will work with you every step of the way. The first test is a simple blood/tissue typing test I believe, which would either give you a green light (ie you are a match) or would rule you out. The Transplant Coordinator's name is Diane Dovel, and her direct phone number is (303)764-8463.

Next, I looked in our manual we were given last week and it contains the following information, verbatim:

"Living donor kidney donation is when a living person donates a kidney to the potential transplant recipient. Live donors must be healthy individuals that have been evaluated and identified as capable of undergoing surgery safely and living a healthy life with only one kidney. These donors are usually genetically related, such as a parent, an adult sibling or child, aunt or uncle, young grandparent, or other close relative (*sidenote from Stacy---they do not NEED to be related they just need to be a perfect match).

Potential live donors will undergo a complete evaluation before a final decision is made. Only those persons who are compatible and have no contraindications will be considered as potential donors. Sometimes people who are interested in being a living donor are not approved because of certain medical and/or psycholosocial circumstances.
Contraindications include (*meaning you'd probably be ruled out if you had the following):

*Significant health history (history of cancer, childhood diseases or other medical problems)
*Surgical history (abdominal surgery scar tissue may complicate nephrectomy)
*Current medical problems (high blood pressure, obesity, diabetes)
*Age (18 years to 55 years)
*Infectious diseases (hepatitis, HIV)
*Anatomy of kidneys (single kidney, multiple arteries)
*Social circumstances (single parent without significant support or extended family)
*Mental health illness (would require current mental health care provider evaluation)
*Alcohol or drug use (significant history of substance abuse)

The transplant team wants to ensure that the kidney donation is a safe and uncomplicated procedure for the donor and the best option for your child. If there is any concern about the safety of the donor, the procedure cannot be done. Being a kidney donor requires a great deal of commitment and responsibility to follow through with the many tests and examinations. The Living Donor Information Section has complete details of the evaluation, surgery and recovery.

The kidney donor must be healthy, and free of kidney disease or any other illness. The evaluation begins when the donor comes to the transplant team and has made the decision to become a live donor. Blood typing is one of the first tests performed to confirm their compatibility with the recipient. If the donor's blood type is compatible with your child's, the donor will then have a complete history physical examination.

It is important that the primary physician is involved when possible, because they are the most familiar with the donor's history and health. During this exam, several tests are performed that involve drawing blood, collecting urine and stool samples and an EKG and chest X-ray are performed. Most of the initial tests are part of the potential donor's annual physical exam. The next phase, and each consecutive phase, is taken only if nothing contraindicated is discovered that can eliminate the individual as a potential donor. When the evaluation is completed, the potential donor will have been screened for any infections, diseases and anypathology of the kidney that would eliminate them as a potential kidney donor.

Once an individual has been accepted as a live donor, the surgery can be scheduled and final preparations are made. The operations are done at the same time at The Children's Hospital. Two perating rooms are reserved and two to three transplant surgeons are scheduled for the day of surgery. The operation to remove the healthy kidney from the donor is called a nephrectomy. It is major surgery, and the surgical technique to remove the kidney and the risks involved will be discussed in detail with the donor prior to the operation. Post-operative
recovery occurs at The Children's Hospital and hospitalization can be up to five days, depending on the type of nephrectomy. Pain management is important allowing the patient to recover more comfortably. Following discharge, an additional 2 to 6 weeks may be necessary for a full recovery.

Your child's insurance, or Medicare, covers surgery expenses and may cover some of the donor evaluation. It is important that the potential donor's insurance company is notified of the indiviual's desire to donate. Any benefits or policies regarding insurance coverage need to
be discussed and understood before the evaluation. Written financial approval and generated referrals in compliance with their insurance policy are the donor's responsibility. Time off from work and cost of living expenses that may occur during the recovery time are the responsibility of the donor and you family. The transplant program is committed to helping your family utilize available resources that can help when addressing these issues.

In summary, the benefits of receiving a kidney from a live donor are
many, and include:

*Scheduling surgery at a convenient time for the donor and recipient
*Improved compatibility with genetically related donor (for example,
increased number of matching antigens with parents and siblings)
*Improved health of the kidney (no trauma related to the cause of
death)
*Decreased ischemia (time kidney is on ice)
*Decreased episodes of acute rejection
*Immediate recovery of kidney function

Disadvantages to live donor transplant are mainly related to the risks of requiring a healthy individual to undergo a medically unnecessary surgical procedure. Any surgical procedure has risks that include anesthesia, risk of bleeding or blood clot formation, wound infection, and the experience of pain."

Update

Stacy and I were at a party last night with a bunch of old friends and co-workers, some of which I hadn't seen in a couple of years. Everyone was asking about Julian, and it occurred to me that we haven't posted an update in a while. So here goes.

We had an appointment with Julian's kidney doctors a couple of weeks ago, and everyone is in agreement now that Julian is big enough for a transplant. There are several ways to do it, and some of the doctors had concerns about limiting future modes of treatment if the transplant was performed a certain way. That hurdle has now been cleared, so we're officially on to the next step.

Now we're in the process of getting Julian on "the list." That process involves a considerable amount of testing and paperwork involving us, the hospital, Julian's PCP, and the insurance company - yikes! Getting all these people to talk to each other sometimes seems like a Herculean task, so we've got our hands full. Stacy especially is busy chasing everybody around, making sure everything gets filed and scheduled appropriately.

Julian is waking up from his nap, and Stacy is at the grocery store, so it sounds like it's playtime!