February 27, 2009

A few questions answered

Of course, after I finally settled down after Wednesdays appointment I thought of a few questions that I should have asked before I even left the office. But my mind shut down half way through the conversation. So, I got to talk to Dr. Ben today and got our questions answered and I feel a lot better about the situation.

Our first question was if dialysis continues to work would we stop it and go ahead with the transplant. The answer is absolutely not. They are hoping that Max will be able to do dialysis for a very long time. They do not want to do the transplant anytime soon, so all of the precautions they are about to do is to prepare him for it if we should have to move forward with it. If they can keep him on dialysis for another year it is to his advantage and it will make things a little easier on the surgeons as well.

Our second question was if Max's current hemo cath went bad, would they replace it or consider hemo a lost cause. The answer again is absolutely not. Max's team is going to do EVERYTHING they can to NOT have to do this transplant anytime soon. So, they would manipulate or replace the catheter to buy us some more time. They are also going to be doing the PD for stretching his peritoneal cavity. This too will give him a little bit of dialysis as well. We are really hoping that a miracle will happen and Max will be able to receive dialysis through PD. This would give us a much bigger advantage for the simple fact that we would have two forms of dialysis if one were to fail. Right now, as far as we know, we only have one option which, of course, puts us at a higher risk.

So, to sum everything up. My post from Wednesday is the plan IF we lose Max's dialysis access and if he fails to get good clearance with PD. IF he continues to do well on dialysis we wait. The vesticostomy will probably still be open when we do the transplant so all of the risks from before are still there. If we can get Max to be a lot bigger than what he is now, we will be in a much better situation. We need another miracle is what I am saying. We need Max to be on dialysis for at least another year so that the risks will decrease a bit.

Everyone keeps asking me when we will know something. The answer to that is we won't. This is a situation that gets played out day by day. Every day that we leave that dialysis unit with a good run is a VERY good day. Needless to say, I sit on pins and needles for the entire 150 minutes that Max is hooked up to that machine. Every alarm that goes off, my heart sinks and I hold my breath that they can get it running again. When Tim takes him, I call every hour to see how things are going. We don't say if they are good because we may jinx it. His response is, "It's going." I live every Monday, Wednesday, Friday and Saturday in fear that his access is going to go out on us and we will only have one more chance at hemo, and that's if they can get a new line in. I keep being told that I can't live like that, but this determines my child's life. If his access goes out tomorrow and they can't replace it, that's it. We loose all that we have worked for. We loose the love of our life, just like that. I will live my life in fear until I see my little boy running around our yard with a new kidney. Still then, I will probably live my life in fear, but for good reasons.

When I was crying on Wednesday, one of his doctors asked me what my fears were and I told him that I was afraid that I was going to loose him. The doctor then told me, "You've done everything that you can for him, isn't that enough?" My answer was, "Not if he doesn't survive." If we lose him then I failed at my job as a parent. My job is to protect my child, and loosing him would mean I failed.

But, after talking to the doctors today and getting our questions answered I truly feel that we are going to beat this. Why would God have put us through all of this just to take our son away from us in the end. That would be cruel and God isn't cruel. So for now, we wait and pray that we can hold this off for a very long time.

The results of my CT scan are in. They aren't fantastic but not horrible either. I have an extra vessel coming off of my left kidney, which is the kidney that they like to use in a transplant. This could potentially be more challenging during transplant. One of the surgeons that could be doing my part of surgery said that everything should be fine. If need be they could take my right kidney. They have an email into Dr. Sheldon, who will be performing Max's part of the surgery, to see what his thoughts are about it. There was no word from him when I left the unit this evening. I was told that either way it goes, things should be fine and I should move forward with the testing. So, onto step #3. I will be going to University Hospital for these next tests in April. Lots of blood work, chest xray, another type of scan (I think), 24 hour urine collection, needles needles and more needles. It doesn't matter though. No matter how afraid I am of them... if means I can save my son's life, it's all worth it. He has been through so much worse than what I will go through and that is what gets me through this. He is my hero.

Have a great weekend everyone!

February 25, 2009

Things are not good folks

Max had his VCUG and urodynamics test yesterday and we had our follow up with Dr. Sheldon (urologist) this afternoon. Things didn't work in our favor, to say the least.

I will try to explain all of this information as best as I can so that all of you will understand it. It will get very confusing so bear with me. Here we go:

Max's bladder didn't get any larger with the cycling that we have been doing. This is bad bad bad news. So, Dr. Sheldon went on to say that he doesn't feel that he can do a bladder reconstruction at this point. It's just not safe for Max with him still being pretty little.

After lots of conversations between the urologists, nephrologists, and surgeons it has been determined that we need to restart peritoneal dialysis. They want to do this to stretch out Max's peritoneal cavity to prepare it for a transplant. So the plan is to do a hernia gram (I didn't make that word up). This is when they will put a dye into his PD catheter and watch where it goes by xray. Praying so hard that the dye stays in his peritoneal cavity and doesn't float into his lungs or scrotum like it did before. If this does happen they will do another type of dye study to pin point where the leak is. Obviously, if this does happen PD stretching cannot take place.

Okay, the next step is to reopen Max's vesticostomy so that he can urinate without the high pressures that his bladder creates along with the reflux into his kidneys.

We are in the worst case scenario we could be in as far as the bladder and transplant goes. We are at a very critical point for Max's survival. We are also down to only one option at this point. Remember that they don't want to put a new kidney into a body that doesn't have a good bladder because of rejection risks. Unfortunately, it looks like there is a chance that Max could be receiving his kidney much sooner than we would like. This is where it's going to get VERY confusing. Here we go:

Putting a kidney into a body with a vesticostomy increases the risk of failure for several reasons:

#1 Infection is increased because he has an opening from the outside in (directly
from the bladder into the new kidney)
#2 Rejection risk is increased
#3 blood vessel complications
#4 bladder complications
#5 obstructions (blood clots)

They will have to attach the kidney to the vena cava and the aorta rather than other vessels because of his size. This is very risky. Attaching the new kidney to the bladder will also be very risky because of scar tissue and having the vesticostomy in place.

When they put the kidney in they will have to clamp the vessels they are attaching it to until everything is in place and put together. When they unclamp those vessels A LOT of blood is going to rush to the new kidney. This could cause a metabolic and fluid shift. As soon as they unclamp it they will be pumping him full of fluids and possibly blood. This could also cause a tremendous amount of urine output which could potentially cause over or under hydration and electrolyte problems. They will be monitoring this very closely.

There are SEVERAL risks with this and like I said before this is NOT a good situation at all. Dr. Sheldon said that if Max looses his dialysis access and PD fails Max will not survive. We know that he can't live without the dialysis, but hearing it out loud is scary. This surgery could take place as soon as 8 weeks after his vesticostomy placement which is getting moved up (surgery originally planned for March 31st). I'll let you know when it's rescheduled for.

Max's hemo cath continues to work with the TPA dwells that we are doing.

Max doesn't have ANY leaks ANYWHERE throughout his body.

PD stretching works and shows good signs of being able to be used for dialysis as well as the stretching.

IF and that is a HUGE, big, fat, bold, italicized, red "IF" PD works it could buy us a lot of time to get Max big enough to do this transplant the right way. Reconstruction, healing time, transplant, healing time, new life.

Keep in mind that we also have to monitor Max's growth and development skills. If these are not increasing, we will need to move on with the transplant. So we have to keep an eye on three things: acceptable dialysis clearance, increased growth and improved development. If I understand all of this correctly, we can hold off on all of this if we have all three of these components.

Dr. Sheldon had an encouraging story of a little boy from New York who had to have this exact type of transplant. Although he ran into a major complication with an obstruction in the new kidney, Dr. Sheldon was able to remove it and later do an augmentation and he is now doing great.

I keep telling myself that we need to do all of this to prepare Max just in case we have to go down that not so friendly road. We are going to be praying extra hard that PD will or that hemo will continue to work and that maybe we can push this off awhile later. Dr. Sheldon isn't optimistic that PD will work for dialysis and that is why he is getting ready and planning for this. Since we are having access complications, he wants to be ready. I hope I am right about this. I keep doubting myself that this is what he said :o( I will confirm with Dr. Ben on Friday.

Please please please, I am on my hands and knees begging you to please pray that we don't have to do this anytime too soon.

On a much happier note: MAX GOT HIS FIRST TOOTH TODAY!!!!!!!! Those boogers have been trying to come through for 3 months now. A great way to end a terrible horrible no good very bad day.

Stay tuned for the results of my CT angiogram.

February 24, 2009

Big Week

Max's urologists for an unknown reason pushed his VCUG and urodynamics test up to today. I am still waiting on hearing a reason, but all I have gotten is "He just didn't want to wait any longer." Well why? Talking to urology is sometimes like talking to the wall. So I will let you know what we find out. These are the tests that will determine if he needs the bladder reconstruction or not. BIG TESTS! We're hoping and praying for great results.

Also today: Max has a pediatrician appointment to get his 9 month immunizations :o( Not looking forward to this one. He also has his High Risk Clinic follow up appointment. This one should be easy. We go in and discuss anything and everything. We are having problems with his g-tube leaking so this is our main concern for this visit. It's going to be a VERY long day.

My angiogram is tomorrow morning. This is the next step in the live donor transplant workup. I am petrified of the results of this test. The results will truly show us if I can be the donor or if we have to move on to the next possible candidate (Tim). Dr. Ben said that they will talk to urology after the test and give us a short-long term plan today at dialysis. Thanks Dr. Ben for getting some answers for us!

Thursday, Max has his speech and physical therapists coming to work with him.

Friday- dialysis

Saturday- dress shopping for my brothers wedding

Sunday- Max is finally getting baptized!

It's going to be a long week with a lot of questions answered. I will keep everyone posted on the results.

Have a good week!

February 19, 2009

Surgery was Cancelled

Let's start with anesthesia. They weren't happy that Max was breathing "fast." I kept stressing that he wasn't breathing fast and that this was his normal. Well my opinion didn't mean crap to him, because he still wouldn't listen. Max's sats were hanging out at 94 and he wasn't happy with that either. This too is Max's norm. By this point I was infuriated. The nurse also repeated every question she asked me 3 times so that was ticking me off even more. Let's move on...

...Dr. Tiao (the surgeon) came to see Max to evaluate his breathing. He too thought his lips looked a little blue and that his breathing was fast. Anyone that knows Max knows that his lips are EXTREMELY dry and have an extreme layer of dry skin on them which makes them look a lot paler than what they are, and his breathing was his normal! Don't get me wrong, we are happy that they were taking all precautions to keep Max safe, but when we see him EVERY day and we (his parents) tell you that he is not doing anything or looks any different than he does on a daily basis, then TRUST us. We wouldn't say he looks normal if he didn't. We too want what's best for him. Also, don't get us wrong, the surgeon is wonderful and we are really considering him to do the transplant. He is looked up to by many of our doctors. Let's move on...

...Dr. Tiao also brought up his concerns for the risks that this surgery had. If he got in there and wasn't able to use the same vein then he would have had to moved on with his subclavical vein (under the collar bone). This would cause a lot of trouble for future dialysis catheters if he (God forbid) would need it. So, since Max's catheter had two good runs this week he had another suggestion. He wanted us to consider going back to PD (peritoneal dialysis) to see if Max has grown enough to have a different outcome than last time. Remember: Max ended up with extreme pulmonary edema and a chest tube last time we did this. So, I voiced my concern and told him that I didn't want to go back to that unless we absolutely HAD to. He then called Max's nephrologist, Dr. Dixon. He came up and talked to us about his thoughts and let us voice our own concerns. Of course, since I have a very hard time keeping it together at times, I started crying and saying that I couldn't handle the stress that PD caused us and that I couldn't handle anymore chest tubes and respiratory problems. He then stated that Max would have to be admitted to the hospital to be monitored closely if we were to do this and that once he went home he would be on PD for a minimum of 16 hours. I can't tolerate that. I am sorry, but I would rather take him to the hospital 4 days a week for 4 hours than be a hermit in my own home for 16 hours a day. He would also be put back on the cycler and (RCNIC nurses will agree) that machine is the devil. Rewind to last Friday...

...Max's catheter has been giving us trouble for about 2 weeks. We would hook him up and would have to stop him mid dialysis to put TPA in his line to break up the clot so that we could get through the run. Max was loosing about 10mLs of blood every time we had to do this (that's a lot of a baby). So, as we were walking around the hospital for the 45 minute TPA dwell, I came up with an brilliant idea that we should come in an hour early, put the TPA in BEFORE we hooked him up to the machine, walk around for an hour then come back and start. I figured why not try it. So, the nurses and doctors agreed that it was worth a try. Monday and Wednesday were our first days of trying it and it worked! I am so brilliant :o) Fast forward to today...

...my idea is what cancelled the surgery today! I think I should get paid big bucks for my idea! (it was worth a try anyway) So the plan is to bring Max in early every day he has dialysis and do the TPA before he starts. We will see how much time this buys us. Dr. Dixon stated that he feels that if we end up having to replace his catheter he would still rather not go back to PD for the reasons stated above plus he wasn't getting good runs in with it. It wasn't clearing his numbers and we were always getting negative volumes back on his drains. So, now that we finally have everyone on the same page and understanding our concerns we are feeling much better about all of this. We understand that if they can't salvage the same vein that his line is in now, then he may face challenges down the road. Reality is that his new kidney isn't going to last a lifetime, but medicine changes every day, so who knows what will happen 20 years down the road when he may face going through this again. They will be growing kidneys in petri dishes at that point and he may not have to go on dialysis. Long shot I know :o) We can't focus on what 20 years down the road holds at this point. In our opinion, we need to focus on the now so that Max can see his 20th birthday. We will deal with the future when it gets here.

So, that's where we stand. I think I filled you in on how everything went this morning. The bright side is that Max didn't have to have another surgery, everyone is on the same page, Tim got the day off, and MY (mommy's) idea is what cancelled it! Can you tell I am a little proud of myself for coming up with such a simple idea!

Have a great weekend!

February 17, 2009

When you think you have it bad...

...you realize someone else has it so much worse. I ask that you all please pray for this family. They just lost their baby girl to cancer just over a week ago. If you have the time, read her story from the very beginning. She was a beautiful healthy little girl and within three weeks cancer took her from her family.


I ask that you PLEASE keep this family in your prayers that God gives them the strength to move forward with their lives without their sweet daughter, Cora. Also pray that they find peace that she is resting with our Heavenly Father.

Rest in Peace sweet baby girl.

Max is having surgery on Thursday

A dye study done yesterday determined that Max's dialysis catheter needs to be replaced. There is a piece of fibrin floating around on the outside of the catheter that won't dissolve with the heparin and TPA that has been tried. So, surgery #10 is sooner than we had hoped. So, Thursday morning at 10:30am Max will be back in surgery. I haven't heard any news yet, but it looks like it will be an outpatient procedure. They will keep him to observe and discharge him that evening. This is how they did it the last time, so I assume it will be the same. I will let you all know as soon as I get more details.

Again, keep him in your prayers that it's as simple as it should be and that he does well and recovers quickly.

Thanks everyone.

I cannot wait until his transplant :o(

February 13, 2009

Today is...

...Max's first first birthday!!! Have you figured that one out yet?

Today is the one year anniversary of the open fetal surgery that Max and I had last year. What a celebration to think that he and I both made it through it and are doing fantastic. I can't believe it's been a year and I never would have thought we would be where we are today.

We are truly blessed to have such a great hospital with great doctors right across the river from us. What a journey!

Happy First First Birthday to our little miracle! We love you Max!

Happy Valentine's Day to all of you. Have a great weekend.

Note: I am scheduled to have my CT angiogram on March, 25. This is a test where they will put an IV in my arm and inject a dye to make sure I have 2 kidneys and to check the blood supply that goes to each one. This test will determine if I truly am a good candidate for Max's transplant.

February 12, 2009

Max's Benefit

Just a note: I posted information about Max's Benefit in the sidebar to the right. If you have any questions let me know. You can email me at mommy2max08@yahoo.com.

We hope to see all of you there.

February 11, 2009

God is testing me

Well the dear Lord must have thought that we had our routine down and that things were getting to easy for us, because he testing my super mom strength this morning. Here's my story.

Max's feeding pump went off at 7:10 this morning, as it does every morning. I got out of bed while I was still half asleep, as I do every morning. But this morning was different. When I stepped out of bed I realized that my left foot was not working, it was asleep and it didn't want to move. I made myself put pressure on it and as I did so my ankle rolled and I heard a crack. Remember, I am still mostly asleep through all of this. I remember thinking, "wow, that didn't sound good." I continued on without any pain. I turned his pump off and then started to realize that my foot was actually kind of hurting so I went and got some ice and went back to bed. As I was laying in bed and started to wake up even more and realize that I was really in some pain. When I took my sock off and looked at my foot, there was a knot on the side of it. Of course the first thing I think of is that I broke it. I called Tim and told him, but I kept it on ice and fell back asleep. When I got up at 9:00 I couldn't put any weight on it and it was HUGE! I got up and hopped on one foot to the phone to call my mom. I think that conversation went something like this:

Me: "Hey mom, what are your plans for the day?
Mom: "Nothing, why?"
Me: "I think I broke my foot and I am going to need some help taking Max to dialysis
and then me to the ER for an xray."
Mom: "Oh Beth."

So needless to say, Tim was able to leave work to take Max to dialysis and my mom took me to St. Elizabeth for an xray. So as I hobbled around the house the more nauseous I got from the pain. We got to the hospital and got the xray. Sure enough I have a hairline fracture on the side of my foot. They have me in a partial cast and on crutches until I see the orthopedic tomorrow. He will then decide on what he wants to do with it. You got it folks. I am on crutches and have to somehow take care of my 9 month old while my husband is out trying to get everyone's power back on as we have another wind storm. FANTASTIC! Thank goodness for parents and inlaws.

My mom and I went to Children's to sit with Max so that Tim could go back to work and when we got there Tim told me that we were going back to radiology to get an xray of Max's hemo cath. It has been very temperamental and not wanting to work properly that past week. One day it works the next it totally shuts down. Well it ran perfectly for an hour today then stopped. The xray showed that the placement was fine. So, we have no idea what's causing it, but I am holding on to hope that it will last until his next surgery before we have to replace it. But, they have contacted the surgeon to see what he would like to do. There is also a cuff right under the skin on the catheter that is there to help hold it in. That cuff is now exposed. Some are thinking that it's possibly him growing but some aren't too convinced. We're not too sure yet, so we'll see.

On a positive note, the nephrologists and transplant nurse met with the urologist today and had a little pow wow about Max. The urologist told them that he wants the donor (me) to get moving on the further testing because he feels that even if he does need the bladder reconstruction that transplant can take place 3-4 months after this next surgery. So, that means that the transplant could happen as early as July or August. WOO HOO!!! So for me, the next step is the CT angiogram. The transplant nurse is going to try to get this scheduled for next Wednesday. This test will let them know whether not I have 2 kidneys and how much blood supply is going to them. This information will let them know whether I can truly give Max my kidney. There is a chance that they could find something that would enable to to do so. Say a prayer that all goes well with it and we get good results.

I think that's it. I am going to head off here and relax from the crazy day of xrays, broken bones, a cast and poor catheters. Phew, it's exhausting just thinking about it. Have a great evening everyone!

February 9, 2009

No News is Good News

Sorry it has been awhile since I have posted anything. Just wanted to let everyone know that all is well here on our end.

Max continues to do great and will finally be starting his therapies tomorrow. We are looking forward to having him progress with his motor and oral skills. The hope is to have him eating by mouth and to get him sitting up and mobile.

He is (WOO HOO) finally on the charts for his head circumference. He is almost on there for height. His nutritionist thinks the next time she measures him (end of February) he will be in the 3-10 percentile. He just doesn't seem that small to me, but that's what the charts say.

We have a tentative surgery date of March 31st, but I may have already told you all that. We are waiting to hit the maximum dose of Ditropan before we have his second test to see how the bladder cycling as been going. The medication is made to stop his bladder from having spasms which would make him urinate. This way his bladder fills up with urine to (hopefully) stretch it how we want it. He still urinates, just not as much compared to when he wasn't on the medicine. Fingers are still crossed that this will work.

Sorry, it's a boring post. No offense, but that's how we like it. Have a great rest of the week and I will talk with all of you soon.