Okay, so Max's phosphorus has come down from 25 to 9.7 but it's still high. So, Dr. Dixon and Dr. Ben talked to Dr. Bissler (another nephrologist). Dr. Bissler flat out said that he doesn't think that the phosphorus of 25 is correct. He said that if someone's was actually that high they would be showing severe signs of it being that high and Max is not. So, what he thinks is happening is this: Max has a sheath and/or "gunk" clotting the end of his hemo catheter. So every time we go in for a hemo dialysis treatment we have to put a clot breaker upper medication called TPA into his line to clear the clot so that his catheter will work for the treatment. Before we add the TPA, the nurse draws Max's labs. So what we HOPE is happening is that when the blood is being pulled past that sheath and/or "gunk" the blood cells are being broken open and that is what we are sending to the lab. A phosphorus INSIDE of a blood cell IS 25, so if this is in fact what is happening, then Max's phosphorus could actually be much lower than what the lab is telling us. The one thing that is concerning is that the lab can usually tell if the blood cells have been broken open (hemolized) and they haven't said that they have been. But I am holding onto hope that Dr. Bissler is a GENIUS and that he figured it out. If this is true, I will give him the biggest hug EVER!
With that said, Max is going to have to go through a needle stick on Monday to get a venous blood draw. They will then take another blood sample from his catheter before his dialysis treatment and compare the two. We are hoping to see two totally different phosphorus levels between the two. If this is what we see then Dr. Bissler is a GENIUS and he will receive the biggest hug EVER! If it isn't what we see then, DAMN IT!
For those of you that have been REALLY paying attention, Max's phosphorus is always higher on Mondays and lower on Fridays. My theory on this (I don't know if Ben brought this up or not, I was more focused on Dr. Bissler's GENIUS mind). Anyway, my theory is since Max goes the entire weekend without having TPA put into his line, the sheath and/or "gunk" is worse on Mondays. Therefore, the blood sample that is drawn on Mondays has more "gunk" to fight through, giving it a higher chance of breaking open the blood cells, giving us a MUCH higher phosphorus. Since Max gets TPA put into his line on Mondays, Wednesdays and Fridays, the blood draws that are done on Fridays don't have as much "gunk" to fight through, giving us a much lower phosphorus. Sounds logical right? Although the numbers that we get on Fridays (9.7 today) are still high, they are much more manageable and acceptable than the 20s that we are getting on Mondays.
We ask that you please continue to pray for Max and that Dr. Bissler's GENIUS theory is actually correct.
Phew. Dr. Dixon came to see Max today for his monthly visit and he is VERY happy with how things are going (aside from his "pesky phosphorus"). He told us to keep up the good work and that he will see us next month. I love short, sweet and to the point appointments with him. As much as we like seeing Dr. Dixon, if it's a long visit with him it means that things aren't going too well with Max. So today was a good visit.
Overall it was a good week. It will be a lot better if that GENIUS theory from above is actually correct. Please, please, please pray that it is.
Enjoy your weekend everyone!
July 31, 2009
July 29, 2009
Max's Phosphorus (and pictures)
Prayer Warriors: Max's phosphorus was very high (a whopping 24) again on Monday. The doctors have made another change to his medication and are continuing to increase the volume of his PD fluid. If the PD and medication continue to fail at keeping it at a normal level we are going to have to sit down and discuss the pros and cons of transplanting now rather than later.
They are going to recheck his labs on Friday to see where we stand. Please say a prayer that his levels look good and stay in the normal range so that we don't have to transplant before any of us, especially Max are ready.
To make things a little more clear, they are going to wait until he is fully established on PD. Meaning he will be totally off of hemo before they make any decisions about transplanting.
I personally think that it was elevated because of his good eating from over the weekend. With that said, I have been doing some research on phosphorus and it looks like pre-packaged foods (Gerber Baby Food) has higher phosphorus in it to help preserve it. So, Momma Max (as Dr. Ben calls me) is going to start experimenting with making my own baby food for Max, in my spare time that is. If anyone has and pointers, please pass them on.
Also, if you could pray for another dialysis patient who will be receiving their new kidney today. I don't know any specifics, but please keep them in your prayers.
On to some new pictures of the cutest little guy in the world:
Getting ready for dialysis
My new face everytime I see the camera
Drinking out of a water bottle for the first time
Proof that spit does exists
Daddy and Max watering the flowers
Chubba Bubba
The reason that Max can't go naked for very long
Max's first ride on the lawn mower
Happy Baby
Mommy and Max on my First Mother's Day
They are going to recheck his labs on Friday to see where we stand. Please say a prayer that his levels look good and stay in the normal range so that we don't have to transplant before any of us, especially Max are ready.
To make things a little more clear, they are going to wait until he is fully established on PD. Meaning he will be totally off of hemo before they make any decisions about transplanting.
I personally think that it was elevated because of his good eating from over the weekend. With that said, I have been doing some research on phosphorus and it looks like pre-packaged foods (Gerber Baby Food) has higher phosphorus in it to help preserve it. So, Momma Max (as Dr. Ben calls me) is going to start experimenting with making my own baby food for Max, in my spare time that is. If anyone has and pointers, please pass them on.
Also, if you could pray for another dialysis patient who will be receiving their new kidney today. I don't know any specifics, but please keep them in your prayers.
On to some new pictures of the cutest little guy in the world:
July 27, 2009
Congratulations Tony and Hillary!
My brother Tony got engaged this weekend to his girlfriend Hillary. We are very excited to be welcoming another sister-in-law into the family.
My parents will have wed all of their children off by the end of the year! Here's to more grandkids!!!
Update on Willie: He is doing FANTASTIC!!!!
Update on Max: He is doing FANTASTIC as well!!!
Have a great week everyone!
My parents will have wed all of their children off by the end of the year! Here's to more grandkids!!!
Update on Willie: He is doing FANTASTIC!!!!
Update on Max: He is doing FANTASTIC as well!!!
Have a great week everyone!
July 22, 2009
Prayer Request
Okay all of you prayer warriors, we need your assistance. One of Max's dialysis buddies came into the unit today for a treatment, but instead found out that he was getting his new kidney instead!!! His foster family had no idea. It was such an emotional experience for all us that were here to experience it. Willie is mentally handicap so he didn't have any idea what was going on or what was being said to him, but he knew something was different. He strolled out of the unit flashing his beautiful smile and blowing his much anticipated kisses to everyone.
Please keep Willie and his foster family in your prayers as he goes into the biggest surgery of his life this afternoon.
Please keep Willie and his foster family in your prayers as he goes into the biggest surgery of his life this afternoon.
July 19, 2009
Weekend Thoughts
What a fantastic weekend! Everything started on Friday when we got Max's lab results. They're beautiful! His hemo dialysis treatment went picture perfect! To top it all off, Tim and I put an offer on a lot last week, they counter offered, we counter offered again, and they accepted it on Friday! We went to dinner to celebrate the days events with my mom and dad.
Max's first evening on 270mL went pretty well. We had a couple O2 alarms, but nothing major. We still aren't convinced that they are Max actually desating. The equipment isn't the best according to the respiratory therapist.
Saturday- a beautiful day! Max and daddy spent most of it outside doing yard work, while I finally got a free day to run some errands.
Sunday- daddy got called into work at 1:00am and didn't get home until 3:00pm this afternoon. He got two hours of sleep before we headed to my brothers house for dinner.
Tim and I had a conversation about how blessed we are tonight. We talked about the fact that even though our son has a chronic illness we wouldn't trade our lives for anything. Sure we would love for Max to be healthy, but we wouldn't have met the wonderful people that were brought into our lives through his illness. We wouldn't trade the friendships that we formed with the RCNIC nurses that took care of Max in his first 6 months of life. The laughs, the tears, the encouragement, the strength and the wisdom that those ladies provided to us will always be remembered. As bad as it was to have to go to the hospital to see our son, we met the best group of ladies in the process. They will ALWAYS hold a special place in our hearts. We love you ladies!
The nephrology team: what do you say about a group of people that have saved our son's life? We were talking about how devastated we will be if Dr. Ben switched hospitals after his fellowship is up in 2 years. I don't know what we will do if he chooses to take a different path. He has been with Max since he was a month and a half old. My heart breaks to think about it. The relationship that we have between Dr. Ben and Dr. Dixon will be one that will last a lifetime, whether they are Max's doctors or not. The nurses that we spend 14+ hours a week with in the dialysis unit will also hold a special place in our hearts forever. We are actually getting pretty close to not seeing them 3 days a week. Once Max's catheter is out, we will only see them once a week for awhile and then only once a month. I honestly have no idea what I am going to do with my spare time. They are my adult interaction throughout the week. What am I going to do to keep myself from talking babble and singing nothing but Handy Manny and Playhouse Disney songs? It's another chapter in Max's novel that I will have to end and a new one that I will have to begin.
I'll keep you posted on how chapter 223 goes. With all of that said, I am asking you to please keep the McRae family in your prayers as they begin chapter 1 of their very long novel. They 5 year old little girl, Kate, has a very aggressive brain tumor. Read her story at www.prayforkate.com. She is having a test tomorrow to determine her kidney function and then will be starting her chemo treatments Tuesday or Wednesday. Please pray for this beautiful little girl. If you go to www.youtube.com and type in Kate McRae it shows three videos that her family has made asking for your prayers.
Have a great week everyone. I will let you know how Wednesday's dressing change goes with the stitches and catheter. Please continue sending up those prayers.
Max's first evening on 270mL went pretty well. We had a couple O2 alarms, but nothing major. We still aren't convinced that they are Max actually desating. The equipment isn't the best according to the respiratory therapist.
Saturday- a beautiful day! Max and daddy spent most of it outside doing yard work, while I finally got a free day to run some errands.
Sunday- daddy got called into work at 1:00am and didn't get home until 3:00pm this afternoon. He got two hours of sleep before we headed to my brothers house for dinner.
Tim and I had a conversation about how blessed we are tonight. We talked about the fact that even though our son has a chronic illness we wouldn't trade our lives for anything. Sure we would love for Max to be healthy, but we wouldn't have met the wonderful people that were brought into our lives through his illness. We wouldn't trade the friendships that we formed with the RCNIC nurses that took care of Max in his first 6 months of life. The laughs, the tears, the encouragement, the strength and the wisdom that those ladies provided to us will always be remembered. As bad as it was to have to go to the hospital to see our son, we met the best group of ladies in the process. They will ALWAYS hold a special place in our hearts. We love you ladies!
The nephrology team: what do you say about a group of people that have saved our son's life? We were talking about how devastated we will be if Dr. Ben switched hospitals after his fellowship is up in 2 years. I don't know what we will do if he chooses to take a different path. He has been with Max since he was a month and a half old. My heart breaks to think about it. The relationship that we have between Dr. Ben and Dr. Dixon will be one that will last a lifetime, whether they are Max's doctors or not. The nurses that we spend 14+ hours a week with in the dialysis unit will also hold a special place in our hearts forever. We are actually getting pretty close to not seeing them 3 days a week. Once Max's catheter is out, we will only see them once a week for awhile and then only once a month. I honestly have no idea what I am going to do with my spare time. They are my adult interaction throughout the week. What am I going to do to keep myself from talking babble and singing nothing but Handy Manny and Playhouse Disney songs? It's another chapter in Max's novel that I will have to end and a new one that I will have to begin.
I'll keep you posted on how chapter 223 goes. With all of that said, I am asking you to please keep the McRae family in your prayers as they begin chapter 1 of their very long novel. They 5 year old little girl, Kate, has a very aggressive brain tumor. Read her story at www.prayforkate.com. She is having a test tomorrow to determine her kidney function and then will be starting her chemo treatments Tuesday or Wednesday. Please pray for this beautiful little girl. If you go to www.youtube.com and type in Kate McRae it shows three videos that her family has made asking for your prayers.
Have a great week everyone. I will let you know how Wednesday's dressing change goes with the stitches and catheter. Please continue sending up those prayers.
July 16, 2009
Lots of Info Coming at You
Good afternoon everyone! It has been a busy week here in the Max household. I have a lot of information to share. I will start in the order that events happened. So, here we go:
We have a medication that we are trying called Renagel. This is a binder that we are putting into Max's formula to pull the phosphorus out. The only place that we can get this drug is from a pharmacy in Michigan. We noticed that for some reason we were going through the powder very quickly. So Dr. Dixon called to get it refilled and the pharmacy told them that we shouldn't be going through it that fast. After they looked at all of the info they realized that they (the pharmacy) MISLABELED the drug. We were OVERDOSING Max on Renagel!!! Guess what they're doing to make up for their mistake? They're sending us ONE free refill. What the hell? Luckily this medication is skimmed off of Max's milk, so it's not going into his system. But what if that was morphine or heparin or anything else for that matter? They could have KILLED my son. I am INFURIATED!!! Needless to say, so are Dr. Dixon and Dr. Ben. We'll see if we make anything else of it. Lesson learned: Check your prescription labels!
Anyway, Max's catheter has been working so far this week. We go packed every time we go in, just in case. It's working. Nurse Sara changed his dressing on Wednesday, and believe it or not, the catheter was actually pushed in a little bit. Rather than a 1/2 inch it's only out about a 1/4 inch beyond the cuff. With that said, it's still falling out, but we're safe for another week as long as Mr. Busy Hands doesn't take us all by surprise.
Pulmonolgy has cancelled his sleep study for next Tuesday. They didn't realize that Max's wasn't on his full dose of PD fluid. So they found it silly to proceed with the study. They will reschedule it once he gets to the 400 mark. They are going to do the saturation study next week. We think they are doing it on Tuesday. We are able to do this test at home, so they will bring the machine here to the house and we will connect him that night to monitor his oxygen saturation.
With that said, here is the PD plan. As Dr. Ben says, "we have to stay ahead of the catheter." So they are going to increase it volume from 250mL to 270mL on Friday (tomorrow). As long as that goes well they are going to make a jump to 300mL on Monday. If he continues to tolerate that, they will be working up to the 400mL mark over the next three weeks. From there they will do the sleep study to make sure he is breathing okay with it and that he is able to remove the carbon dioxide from his body.
I had my surgery consulation with Dr. Tiao yesterday. That went well, but he gave me some VERY bad news. Dr. Sheldon (Max's transplant surgeon and urologist) is very ill. I am not sure what is wrong with him, but Dr. Tiao said that it was going to put him out of work for a long time. He also said that since he is a little older, this could actually push him into early retirement. I am very upset about this. This guy is recognized across the world for his expertise in exactly what Max has. I don't want anyone else doing Max's two biggest surgeries. We want Dr. Sheldon and only Dr. Sheldon. We are so worried about him, so please pray with us that he gets well soon. Not only for Max, but for himself and for all of the other little ones that are his patients. This is a huge devastation to the urology, nephrology and surgery departments at Children's Hospital.
Okay, I think that is it. I feel like I am forgetting something, but I think that was enough for now. I will repost if I think of something else to say.
Enjoy your nice and cool weekend!
We have a medication that we are trying called Renagel. This is a binder that we are putting into Max's formula to pull the phosphorus out. The only place that we can get this drug is from a pharmacy in Michigan. We noticed that for some reason we were going through the powder very quickly. So Dr. Dixon called to get it refilled and the pharmacy told them that we shouldn't be going through it that fast. After they looked at all of the info they realized that they (the pharmacy) MISLABELED the drug. We were OVERDOSING Max on Renagel!!! Guess what they're doing to make up for their mistake? They're sending us ONE free refill. What the hell? Luckily this medication is skimmed off of Max's milk, so it's not going into his system. But what if that was morphine or heparin or anything else for that matter? They could have KILLED my son. I am INFURIATED!!! Needless to say, so are Dr. Dixon and Dr. Ben. We'll see if we make anything else of it. Lesson learned: Check your prescription labels!
Anyway, Max's catheter has been working so far this week. We go packed every time we go in, just in case. It's working. Nurse Sara changed his dressing on Wednesday, and believe it or not, the catheter was actually pushed in a little bit. Rather than a 1/2 inch it's only out about a 1/4 inch beyond the cuff. With that said, it's still falling out, but we're safe for another week as long as Mr. Busy Hands doesn't take us all by surprise.
Pulmonolgy has cancelled his sleep study for next Tuesday. They didn't realize that Max's wasn't on his full dose of PD fluid. So they found it silly to proceed with the study. They will reschedule it once he gets to the 400 mark. They are going to do the saturation study next week. We think they are doing it on Tuesday. We are able to do this test at home, so they will bring the machine here to the house and we will connect him that night to monitor his oxygen saturation.
With that said, here is the PD plan. As Dr. Ben says, "we have to stay ahead of the catheter." So they are going to increase it volume from 250mL to 270mL on Friday (tomorrow). As long as that goes well they are going to make a jump to 300mL on Monday. If he continues to tolerate that, they will be working up to the 400mL mark over the next three weeks. From there they will do the sleep study to make sure he is breathing okay with it and that he is able to remove the carbon dioxide from his body.
I had my surgery consulation with Dr. Tiao yesterday. That went well, but he gave me some VERY bad news. Dr. Sheldon (Max's transplant surgeon and urologist) is very ill. I am not sure what is wrong with him, but Dr. Tiao said that it was going to put him out of work for a long time. He also said that since he is a little older, this could actually push him into early retirement. I am very upset about this. This guy is recognized across the world for his expertise in exactly what Max has. I don't want anyone else doing Max's two biggest surgeries. We want Dr. Sheldon and only Dr. Sheldon. We are so worried about him, so please pray with us that he gets well soon. Not only for Max, but for himself and for all of the other little ones that are his patients. This is a huge devastation to the urology, nephrology and surgery departments at Children's Hospital.
Okay, I think that is it. I feel like I am forgetting something, but I think that was enough for now. I will repost if I think of something else to say.
Enjoy your nice and cool weekend!
July 8, 2009
Catheter Update
Okay, well we are here at dialysis and the catheter is WORKING!!! That's the good news. The bad news is that when Nurse Keri changed the dressing, we noticed that the catheter has come out even more. There is a cuff that is suppose to be under the skin to hold it in. That has been out for quite some time now, but now there is about a 1/2 inch of catheter above the cuff that is exposed. We told Dr. Dixon and the look of disappointment shot across his face. We all knew that this time was coming, but we were really hoping that it would last awhile longer.
With that said, we aren't going to do anything at this point. We have another week before the dressing needs to be changed again, so we will wait and see how it looks then. Everyone that holds him will have to be VERY careful that we don't put a lot of pressure or pulling on that site. Other than that everything is going great! Max is laying in his bed being an absolute crazy man. He is LOUD!!!
Enjoy the rest of your week!
With that said, we aren't going to do anything at this point. We have another week before the dressing needs to be changed again, so we will wait and see how it looks then. Everyone that holds him will have to be VERY careful that we don't put a lot of pressure or pulling on that site. Other than that everything is going great! Max is laying in his bed being an absolute crazy man. He is LOUD!!!
Enjoy the rest of your week!
July 7, 2009
240
Max's PD fluid was increased to 240mL's last night. He did fantastic!!!
We do have one issue: During his hemo treatment yesterday, his catheter stopped working. There are two lumens on his catheter and when this happens it's usually just one lumen. Yesterday it was both. We had to cut his treatment an hour short. His blood was fairly thick so I am hoping that it was just a clot and that his TPA will break it down. Please say a quick prayer that this is what it was and that the day hasn't come that the catheter is finished. We will find out tomorrow afternoon. I will be packing our bags... just in case. Maybe if I prepare ourselves for not coming home then it won't happen. ***fingers crossed***
Dr. Dixon is covering the dialysis unit this week so he got to see Max again yesterday. He is still very happy with how things are going, despoite the whole catheter incident later in the day. He said that if the saturation study that will be done next week shows that all is well, they will move a little faster on increasing his PD fluid (20mL's per week rather than 10mL's). His main reason is because those levels that were gorgeous last week are slowly increasing back up. They are by no means where they were, but are trending upward and he wants to stop it before they get out of hand again. I also asked him what his idea of waiting for the transplant meant and he said hopefully two years, which would mean that Max would be about 3 years old.
As far as appointments and tests go we have the saturation study next week, sleep study on the 21st and his pulmonology appointment on August 3rd. We also have his 6 month follow up with the First Steps program to go over how he is doing and what not. This will determine if he needs more or less therapy, etc. This takes place on the 29th, I think.
Overall, Max is doing GREAT! He looks like he is growing to me, he is developing and sleeping with some pretty good sats. We couldn't be happier.
One more quick piece of info that we ARE totally looking forward to is that my dad is setting up a long weekend trip to Dale Hollow Lake in October. This will be Max's first trip and we are pumped about it! It's going to be a lot of stuff for a four say trip, but we'll make it work. Can't wait!!!
Enjoy your week!
We do have one issue: During his hemo treatment yesterday, his catheter stopped working. There are two lumens on his catheter and when this happens it's usually just one lumen. Yesterday it was both. We had to cut his treatment an hour short. His blood was fairly thick so I am hoping that it was just a clot and that his TPA will break it down. Please say a quick prayer that this is what it was and that the day hasn't come that the catheter is finished. We will find out tomorrow afternoon. I will be packing our bags... just in case. Maybe if I prepare ourselves for not coming home then it won't happen. ***fingers crossed***
Dr. Dixon is covering the dialysis unit this week so he got to see Max again yesterday. He is still very happy with how things are going, despoite the whole catheter incident later in the day. He said that if the saturation study that will be done next week shows that all is well, they will move a little faster on increasing his PD fluid (20mL's per week rather than 10mL's). His main reason is because those levels that were gorgeous last week are slowly increasing back up. They are by no means where they were, but are trending upward and he wants to stop it before they get out of hand again. I also asked him what his idea of waiting for the transplant meant and he said hopefully two years, which would mean that Max would be about 3 years old.
As far as appointments and tests go we have the saturation study next week, sleep study on the 21st and his pulmonology appointment on August 3rd. We also have his 6 month follow up with the First Steps program to go over how he is doing and what not. This will determine if he needs more or less therapy, etc. This takes place on the 29th, I think.
Overall, Max is doing GREAT! He looks like he is growing to me, he is developing and sleeping with some pretty good sats. We couldn't be happier.
One more quick piece of info that we ARE totally looking forward to is that my dad is setting up a long weekend trip to Dale Hollow Lake in October. This will be Max's first trip and we are pumped about it! It's going to be a lot of stuff for a four say trip, but we'll make it work. Can't wait!!!
Enjoy your week!
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