Well of course, NOTHING ever goes our damn way. Every time Max falls asleep his oxygen saturation drops into the mid to upper 80's and supposedly into the 70's at one point. So, the doctors are thinking that the finding of the new hernia is the culprit. They have stopped the peritoneal dialysis to see if he does it overnight, which I am pretty confident he will since he has been doing it all day while not on dialysis. It looks like we won't be getting discharged tomorrow morning like originally planned if this does happen.
They are also wanting him to see a pulmonologist and I am petrified of what he's going to say. My absolute BIGGEST fear that I live with in the back of my head every day is that he is outgrowing his lungs. It's times like this that make that fear come alive and haunt me until the problem is resolved. I just can't even stand to think about it.
There is discussion between Max's surgeons, urologist and nephrologist that they will probably be going in to fix the hernia so that it can start the healing process. I have heard that it will be months before they will be able to restart PD after the repair for the sake of it breaking through the stitches into his pleural cavity.
The positive thing is that we know he can tolerate PD. The bad thing is that we can't use it as a secondary dialysis until the hernia repair heals completely. So now we are on pins and needles that his hemo cath stays working.
I don't know what else to say besides that I am so freaking tired of this crap happening to him. I am emotionally and physically drained and don't know how much more I can take. I haven't slept in 3 days and there's no point in going home to sleep because I wouldn't be able to tolerate not knowing what's going on here. I wish we could fast forward to five years from now and have all of this behind us. Although I am starting to think that this will NEVER be behind us. I feel like we're being punished for something but will never know what it is. It's one thing after another. Will he ever be able to live his life without being hooked up to tubes and wires or have to be in and out of the hospital or count down the days to his next surgery? Will we have to celebrate his first birthday in the freaking hospital? How do you plan such a huge celebration that is 2 months away when you don't know what the heck is going to happen within the next 24 hours?
Thanks for letting me vent. I'll be better as soon as we get some more information tomorrow. I get like this every time we get more bad news. I then have to sit on it for a day and I think about the positives and then I get better. The one positive that we got out of this is that they found the hernia. We also wonder if he has been desating for awhile now and just never knew it. So that's another positive. We're so thankful that they found these things before it got REALLY bad, but so mad that they keep finding more things wrong with him. We also know that, so far, all of the findings are fixable, but at what point will he say enough is enough? We know that he is such a fighter and won't stop without a fight, but it's so hard to see your baby go through such horrible things. He is so much stronger than his mommy and daddy, that's for sure.
Please keep him in your prayers. Have a good week everyone.
March 8, 2009
March 7, 2009
Day one was a...
...SUCCESS! Dr. Dixon was doing "cartwheels" after he heard how last night went. Max handled everything very well and the chest xray showed NO fluid around his lungs, BUT it did show something. Max can never let anything just go fine and dandy, so he decided to push a piece of his bowel into his chest cavity. The surgeon said that he thinks it probably happened when the nissen was performed. As that hole was healing after the last PD run, somehow a loop of bowel got up in there and it healed that way. So, the doctors are going to continue with the PD trial, but be a little more cautious on the volumes that they put in there. Dr. Dixon said that it is something that will have to be fixed at some point, but as of right now it's not causing any trouble so they're going to leave it be. If they end up having to fix it now, we will have to stop PD for several months to let it heal. *sigh*
So, the plan for this evening is as follows:
We will be starting him on my most favorite piece of equipment tonight... the cycler. They will be filling him with 140mL's of dianeal fluid and we'll see how it goes. The plan is to start him on it at 8:00 this evening until sometime in the morning. Pray that this machine doesn't alarm at us ALL night long like it did the last time he was on it. Most importantly, please keep him in your prayers that everything continues to go "swimingly" and he doesn't spring any leaks.
I'll keep you all posted.
PS
Enjoy this 75 degree beautiful day and think of me while I am sitting in this extremely boring hospital room :o) Enjoy your weekend everyone!
So, the plan for this evening is as follows:
We will be starting him on my most favorite piece of equipment tonight... the cycler. They will be filling him with 140mL's of dianeal fluid and we'll see how it goes. The plan is to start him on it at 8:00 this evening until sometime in the morning. Pray that this machine doesn't alarm at us ALL night long like it did the last time he was on it. Most importantly, please keep him in your prayers that everything continues to go "swimingly" and he doesn't spring any leaks.
I'll keep you all posted.
PS
Enjoy this 75 degree beautiful day and think of me while I am sitting in this extremely boring hospital room :o) Enjoy your weekend everyone!
March 5, 2009
Max ate today!!!
Woo Hoo, I think I figured out how to post a video (Thanks Rick!) Don't mind my silly songs and high pitched voice. It's the only way to distract him from what's actually going on and it really works! Anyway, we are so very proud to announce that Max finally showed a lot of interest in eating today. I started him out with just cereal and then added carrots to it. He ended up eating the whole bowl and wanted more. He would grunt at me if I wasn't moving fast enough and then he would open his mouth wide when I went to give him a bite. He has never done this before. We are so proud of him! Yah Max!
"Oh mom and dad, I knew how to do it the whole time! Na na na na na na!" hehe
Test results are in...
...and things look good so far. The dye study that was done yesterday didn't show any evidence that the fluid went into his pleural cavity or his scrotum. So, this means that Max will be admitted to the hospital tomorrow (Friday) after his dialysis treatment. They will be starting his PD trials in the hospital so that they can monitor him to be sure that he is tolerating it well.
Dr. Dixon's plan is to start him out with 120mL's (4 ounces) of dianeal fluid with the manual setup. He is hoping to get him to 140mL's by Saturday night so that they can switch him over to the cycler. I am not too sure how long he will be in, but I assume if everything goes well, it will be less than a week. They said that they won't keep him in there just to go up on his volume. They will send him home and let us do that here.
Remember that this is primarily to stretch out his peritoneal cavity, but if we can get him to tolerate it as a dialysis option we will be in a much better situation. I also want to point out that the dye study doesn't mean that once we start adding volume to his belly that it won't pop that hernia back open. Of course, we are praying that this doesn't happen for obvious reasons. Also note, that he will continue to do the hemo dialysis while we move forward with this process. Max will technically be on two forms of dialysis, which isn't a bad thing. As Dr. Ben says, you can never have too much dialysis. I don't know if it's possible, but maybe this will help him along with his growing and developing as well.
Keep Max in your prayers that everything stays in it's place and doesn't go wandering around his little body. I'll have my computer with me at the hospital, so I will keep you all posted.
Dr. Dixon's plan is to start him out with 120mL's (4 ounces) of dianeal fluid with the manual setup. He is hoping to get him to 140mL's by Saturday night so that they can switch him over to the cycler. I am not too sure how long he will be in, but I assume if everything goes well, it will be less than a week. They said that they won't keep him in there just to go up on his volume. They will send him home and let us do that here.
Remember that this is primarily to stretch out his peritoneal cavity, but if we can get him to tolerate it as a dialysis option we will be in a much better situation. I also want to point out that the dye study doesn't mean that once we start adding volume to his belly that it won't pop that hernia back open. Of course, we are praying that this doesn't happen for obvious reasons. Also note, that he will continue to do the hemo dialysis while we move forward with this process. Max will technically be on two forms of dialysis, which isn't a bad thing. As Dr. Ben says, you can never have too much dialysis. I don't know if it's possible, but maybe this will help him along with his growing and developing as well.
Keep Max in your prayers that everything stays in it's place and doesn't go wandering around his little body. I'll have my computer with me at the hospital, so I will keep you all posted.
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!
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.
BEST CASE SCENARIO:
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.
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.
BEST CASE SCENARIO:
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!
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!
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