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 19, 2009
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.
http://themcclenahans.blogspot.com
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.
http://themcclenahans.blogspot.com
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(
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.
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.
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!
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.
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.
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