December 29, 2008

Max will all of his presents!

Phew, that was a busy week! We hope everyone had a great Christmas and got everything that you asked for. Max got everything that he asked Santa for and mommy and daddy didn't do too bad either. Well I have a couple updates to share with everyone.

The first is for all of those that received a Baptism invitation with your Christmas card. We unfortunately have to cancel the baptism for right now do to a surgery that is scheduled a couple of days before. We will let you know when we reschedule it.

That leads me into my second update, and that is that Max is scheduled to undergo the first of two bladder surgeries on January 8th at 1:00pm. This surgery will involve closing his vesticostomy, placing the supra pubic tube, fixing the blockage that caused this mess, a scope to check for hernias/etc, and a scope of his airway as a follow up from his earlier surgery (cricoid split). He will spend anywhere from 2-5 days in the hospital after the surgery. Please keep him in your prayers that all goes well with this surgery.

Max also got evaluated for First Steps so that we can get him some therapy to get him caught up on his motor skills. The evaluator said that she feels he is close to being on track with his development skills and she feels that they will improve once he gets his motor skills worked on. So hopefully he will qualify and we will get him eating, sitting up and rolling over. Looking forward to this :o)

I think that is it from our end. I know it's not much, but that's how we like it :o) I will keep you all posted. Have a great new year!!!

December 22, 2008

Merry Christmas 2008

Merry Christmas from our family to yours. We hope that it's all that you dreamed it would be.

Love always.

December 19, 2008

Some of the best news we have heard...

in a very long time and a huge sigh of relief. Today at dialysis I got a phone call from the transplant nurse. She was calling to give me the results of the tissue typing that we did two weeks ago. She told me that I am a perfect match for Max's kidney transplant. She went on to say that this is very rare and that these are the best results that we could have gotten. So, it looks like Max is going to be getting his mommy's kidney!!!

The next step is to do a CT angiogram on me to look at the vessels and the kidneys themselves to be sure that everything is in tip top shape and where it's suppose to be. If I fail this test I am a no go and we move on with Tim (who is a half match). If I pass, we move forward with several more tests and exams. They will do a head to toe health check to be sure that I am healthy enough to sustain this type of surgery and to be able to live my life with only one kidney.

We are not in any hurry to get all of this finished since Max has to go through the other two surgeries first. It looks like we will start the testing at the first of the year.

I couldn't have asked for anything more for Christmas! YAH HOO!

Have a great weekend everyone!

December 18, 2008

Long update on Max

Okay, first of all I apologize for the extremely long delay in between updates. Fortunately life has been pretty quiet until this week with Max. We had a urology test done on Tuesday called a urodynamics test. This test was done by placing a catheter in his vesticostomy and blowing up the balloon to block the urine outflow. They thin stuck a small tube into his rear end and blew up that balloon. The goal was to block all holes so that they could measure how much pressure was in his bladder when they filled it up with water. Once they filled his bladder up, he peed through his penis (YAH!) So the good news is that Max peed when his bladder was full.

On Wednesday we had an appointment with the head of the urology department, Dr. Sheldon. The information that we got at this appointment was not what we were hoping for. We were told that Max's bladder was developed under high pressure, so it's very small and thick, which we knew. His ureters are also contorted and didn't develop how they were suppose to because of the high pressure that they developed under. Max also has grade 5 reflux (the worst it can be) into his kidneys. This means that the urine that is in Max's bladder refluxes back up into his kidneys. With all of that said, Dr. Sheldon told us that Max may never be able to pee on his own. It's possible that he may have to be catheterized for the rest of his life, but we won't know until we move forward.

With all of that said, here is the plan of action. Max has to undergo 2 very complicated surgeries. All of this has to take place BEFORE he has a kidney transplant. We have to fix his urology problems so that it doesn't damage his new kidney. Surgery #1 (taking place in early January) will consist of closing his vesticostomy, fixing the blockage, and placing a supra pubic tube (SP tube). This tube will be placed in his bladder and exit in his lower belly. The SP tube will allow us to do what is called bladder cycling. This will consist of us filling his bladder up with fluid in hopes that it will stretch out his bladder and make it bigger. They will then retest and see if we have made progress. If this doesn't work we move on to have a much more complicated surgery. Surgery #2 will consist of fixing the reflux. This will be done one of two ways. Reimplantation of the ureters (fix the ureters) or a nephrectomy (remove his kidneys). If the bladder cycling fails to make his bladder larger they will have to do a bladder augmentation. This would involve taking either stomach, ureter or intestine and enlarging his bladder that way. This is NOT what we want to happen. The chances of it happening are high, but Dr. Sheldon examined Max's vesticostomy by sticking his finger through it to check the capacity of his bladder. He found that the bladder capacity was better that what he had predicted. So we are keeping our fingers crossed and praying extra hard that the cycling will work and that we won't have to go down that road. With surgery #2 they will also put in what is called a mitrofanoff. This is a channel that will allow us to catheterize him several times a day without having to go through the penis. So yes, another tube in his belly. They will then retest to see where we stand.

Surgery #3 will (fingers crossed) be a kidney transplant. The nurse informed me though that she doesn't think this will take place in 6 months like we were hoping for. So that is a huge bummer, but we will take whatever is thrown at us.

This is two very big surgeries that Max has to face with a good possibility of lifelong complications. We knew this was going to be a long and hard road, so we are moving forward with our heads up and holding onto our faith that, once again, Max will pull through this. Max's nephrology fellow, Dr. Laskin, told me that they have several patients that are walking around living a normal life that have a mitrofanoff and that have to cath themselves rather than pee normally. I am still scared to death, but feeling a little better about the situation.

Alright, now that I have bombarded you with the not so great, but not the worse news we've heard... let's move on to something better. Max met Santa last Friday at the Nephrology/Dialysis Holiday Party. This is a get together that they have for all of the employee's families and the patients and their families. It was so nice to get to meet others that are going through what we are. We got to meet one little boy who has exactly what Max has. His is fortunately not as bad as Max's so he isn't on dialysis yet nor will he need a transplant until he is about 10 years old. We also met a little girl who was put on dialysis at 2 weeks old and had a kidney transplant at 14 months of age. She is now 3 years old and doing great! This was an encouraging family to get to talk to because they do know exactly what we are going through. It was very neat and we can't wait for Max to walk into next year's party with a new kidney and with a lot less tubes coming out of his belly.

We also went to the RCNIC after the Christmas party to see Max's night nurses. It was so great to see them again. We still talk about them to Max so that he doesn't forget them. We'll see you again soon ladies!!! We miss you!

Max made me cry last week. I put him in his jumperoo expecting him to do what he normally does and lean to the side and stare at the toys. But he didn't. He sat up straight and started bouncing and playing with all of the lights in front of him. I immediately started crying and jumping up and down with him. It was a very proud mommy moment.

I think that is it. If I forgot something I will repost :o) We hope everyone is doing well and finished with their Christmas shopping! Oh how fast the year has gone. We'll talk to you soon.

December 13, 2008

“Faithful” CD Fundraiser for Max

Choir members of St. Mary’s church in Alexandria, KY graciously donated a large quantity of CDs to sell for Max. The Faithful CD includes 13 Christian songs including: I Will Choose Christ, Find Us Faithful, How Can I Keep From Singing and more! For a sneak preview at some of the songs, click here.

The CD sells for $15, and all money collected will be placed in an account to help with Max’s ongoing medical expenses.

If you are interested in purchasing one of these CDs and/or making a donation, please contact Jessica Wells at

Thank you all in advance for your generosity.

December 9, 2008

Hello to all! I don't really have too much to report, but I thought I would let everyone know that Max is doing great. He is teething terribly and is a little on the fussy side. He isn't really suppose to have too much Tylenol because of his kidneys, but I broke down and gave him a dose this afternoon. He was miserable and he couldn't stay asleep during his nap because of it. Tim just got him down to bed, but I can still here him in there grunting and moaning a little. Poor guy.... I may have to break down and give him another dose to get him through the night. We'll see what happens.

We are very excited for this weekend to get here. The Nephrology and Dialysis Clinic are having a Christmas party on Friday for all of their patients. Santa will be there along with some UC basketball players. It should be great fun for all of the kids and it will be so nice to meet some of the families. FYI to the RCNIC night nurses: the party is from 6:30-8:30, so we are planning on stopping up to see you ladies. As long as Max isn't exhausted by this point, we will see you all then :o)

We have our first meeting with First Steps tomorrow night. This is an Early Intervention type company that sends therapists out to work with children who are delayed in motor and development skills. They do many things to get your child up to speed. We are looking forward to getting Max the therapy that he needs to get him caught up. So woohoo for that :o)

We have about another week or so before we find out the results of our tissue typing that we had done last week. Waiting patiently to see if either Tim or I is a match for the kidney transplant.

I think that is it. Max is fussing so I am off to give in for another dose of Tylenol. Talk to everyone soon!

December 1, 2008

Catheter Crisis

Well, Sunday morning Tim got up around 6:00am and started working around the house. He went in to check on Max around 7:30am and continued on with what he was doing. I got up around 8:30am and went to check on Max. I went in and Max was awake and happy. I was looking at him and realized that something was different. The mittens and mesh hat that we put on him to keep him from grabbing at his catheter were off. I frantically told Tim to turn on the light... what do you know.... Max's catheter is laying on his bed above his head. I immediately applied pressure and told Tim to get some gauze. I looked at the exit sight and it wasn't bleeding. His PJ's had a quarter sized spot of blood on the collar and there were a few splatter spots on his sheet. We were told that if this thing came out, he could bleed to death. The dear Lord was watching over Max. We were not there when he pulled it out and I don't even want to think about what could have happened had it bled like it was suppose to.

We called the nephrology fellow on call and told her that we were on our way to the ER. 4.5 hours later we were admitted and put on the add on surgery list to have a new one put in on Monday. I stayed all night at the hospital with him and sleep maybe 2 hours the entire night. Hospitals really need to think about getting better sleeper sofas for the families. The sofa and pillows are hard as rocks- great fun! Anyway, we got up around 7am Monday morning and Max was extremely fussy. He literally fussed nonstop until we got called down for sugery around 12:30pm. By this point I thought I was going to have a nervous break down.

So anyway, the surgery went great. Max came out of it doing well enough that they sent him home around 6:00 that evening. The cathether now comes out from his chest, so he can't get to it unless he is naked. We had to be back at the hospital at 6:30am for dialysis :o( Two sleepless nights in a row and a wake up call at 4:00am... not my cup of tea! Dialysis today didn't go so great. The first two hours were fine- Max slept for most of it. Going into the third hour, Max woke up very cranky. Within 5 minutes all color left his face. He turned green. They immediately unhooked him from the machine. He also started to breath a little faster, so they ordered a chest xray and a CBC to check his white blood count. We found out that the lower right lobe of Max's lung is slighty collapsed and that his CBC count had risen from yesterday pre surgery. So, the nephrologist put him on an antibiotic and told us to watch his breathing tonight. If his work of breathing increases we are to call her tonight. Otherwise, they will see us tomorrow.

Max and I get our tissue typing and other blood work to start the transplant testing tomorrow. I am a needle phobe so I am freaking out about it, but so stinking exciting to finally get that ball rolling. Max will also get a blood transfusion right after since they will be taking 16mL from him (a little over 5 ounces).

I guess that's it. Have a great rest of the week :o)