Peter has been riding this little scooter-bike since the second week in June. He has a little game he plays where he rides over to his ball, bends down to pick it up, throws it, and then rides over to the ball to begin all over again. He'll be popping wheelies soon.
Wednesday, June 25, 2008
To the mom who said hello
While we were at Children's, one of the mothers who was there with her child said that she recognized Peter from his blog. I didn't get a chance to talk further with her b/c Peter was ready to keep walking, and when I would get free time later, her child's room was dark, suggesting that the child was sleeping. If you read this, I wanted to let you know that I appreciate your saying hello and encouraging Peter when you saw him. If you want to email, you can reach me at the email in the "about me section." Or you can post something on the blog, and if you don't want it posted for everyone to see, just say so and I can read it but not post it. I hope all is going well with your little one. - Kathryn
Boston visit June 2008
We were up at Children's Boston Sunday through Friday. It was a good visit. Peter is now up to 25mL of Elecare five times a day... by mouth, no need for a feeding pump!! I think he would take more if we would let him, but it is not time to advance him in amount yet. We are however trying to increase the caloric density of the feeds. He has gone from 20 calories to 26 calories per ounce. The goal now is to get to 30 calories per ounce and hold.
We decided to try to free Peter from as many tubes as possible during the day, so his LR and TPN will both run over 16 hours, rather than the LR going 24 hours a day. And we took off the foley bags that collect the Gtube drainage and fistula drainage. We will hook them back up at night, but in the day he is free of those as well. When we feel he is stable with the feeds, we will take off the foley bag on the ileostomy in the daytime too. He will continue to still have the ostomy bags on his body, but without the long foley drains hanging off those bags, it is hard to tell he has them at all when his clothes are on.
We met with Dr. Jennings for a third consult on Peter. He is not a transplant doctor, but has an excellent reputation and tremendous talent as a surgeon. Interestingly, he was a resident with Dr. Flake (the surgeon from CHOP). I am coming to realize that we have three exceedingly talented surgeons weighing in on Peter, with reputations of excellence a mile long. What a blessing! Dr. Jennings took me downstairs to look over Peter's MRIs and Catscans and then we met with the head pathologist at CHB and looked at Peter's liver biopsies from Dec 2006 and May 2007. Then Dr. Jennings was called to surgery. Dr. Jennings and I finished up our consult via email. I am posting his comments here:
"To be blunt, I think this kid would have died if not for Omegaven, and now we have a child no one has seen before. These kids all died up to a few years ago. Now we have some time, who knows how much time, to get him to a physiologic position that he can either heal his fistula(s) or be ready to close them. And we have used some of that time to drop the portal pressures and control the bleeding. We need to get him to use his intestines. I think the fistulas are only one problem, the other is his liver function and ability to recover or tolerate surgery. I am not sure I know where we stand. the liver biopsies were not end stage, and they are a year old. He has improved in the interim. This is uncharted territory, and dangerous, but I am not without hope for Peter. I am encouraged that he is tolerating a little feeds, and I would very gently keep pushing."
So far it seems that everyone is in agreement that the best thing for Peter now is to feed the gut and continue to give Peter time to lead us in the direction he needs to go. Several times I heard the comment that "Peter is writing his own book. He is doing something that has not been done before."
When we go back up again in August, we will reimage the bowel to see what connections he has in there. All of the doctors will try to be in the room while the imaging is happening live. If the connections seem simple and he seems to have a bowel that is functioning as we begin to feed him more, then perhaps we can do a "simple" surgery to fix what we can. If there is a very complex bowel that can only be surgically handled by complex surgery, then he may not be a surgical candidate any time soon for fear of creating more bowel fistulas. The thought is that Peter may be changing internally and that even the images he had in February may be much different now. We keep hoping!!
Nutritionally, Peter has plateaued on the growth and weight curves for his age. We are really hoping the bowel works from a nutritional standpoint too, in that we can't increase the TPN any further without increasing the number of hours he is on TPN. Interestingly, we have had to increase the vit C again, and he will now get 180mg IV added to the vitamins in standard TPN, up from an additional 100mg. Since fall 2006 we have had to add nutrients to Peter's TPN above what is standard for his age. Vit C, zinc, vit K, protein are all in excess of standard dosages. The protein and vit K extra amounts were added in Boston. Sodium for Peter seems best given in small amounts as he holds on to it strongly. We can decrease the calcitriol (vit D) now; since he is doing so much weight bearing exercise his bones are getting stronger.
Peter did a great job showing himself off this time in Boston. He must have walked almost an entire mile in the hospital - seriously. Over and over I heard, "I can't believe that is Peter!!" Or, "Have you seen Peter? Can you believe how good he looks?" Something seems to be going in Peter's favor. The prayers continue in thanksgiving and in request for his continued healing and happiness.
We decided to try to free Peter from as many tubes as possible during the day, so his LR and TPN will both run over 16 hours, rather than the LR going 24 hours a day. And we took off the foley bags that collect the Gtube drainage and fistula drainage. We will hook them back up at night, but in the day he is free of those as well. When we feel he is stable with the feeds, we will take off the foley bag on the ileostomy in the daytime too. He will continue to still have the ostomy bags on his body, but without the long foley drains hanging off those bags, it is hard to tell he has them at all when his clothes are on.
We met with Dr. Jennings for a third consult on Peter. He is not a transplant doctor, but has an excellent reputation and tremendous talent as a surgeon. Interestingly, he was a resident with Dr. Flake (the surgeon from CHOP). I am coming to realize that we have three exceedingly talented surgeons weighing in on Peter, with reputations of excellence a mile long. What a blessing! Dr. Jennings took me downstairs to look over Peter's MRIs and Catscans and then we met with the head pathologist at CHB and looked at Peter's liver biopsies from Dec 2006 and May 2007. Then Dr. Jennings was called to surgery. Dr. Jennings and I finished up our consult via email. I am posting his comments here:
"To be blunt, I think this kid would have died if not for Omegaven, and now we have a child no one has seen before. These kids all died up to a few years ago. Now we have some time, who knows how much time, to get him to a physiologic position that he can either heal his fistula(s) or be ready to close them. And we have used some of that time to drop the portal pressures and control the bleeding. We need to get him to use his intestines. I think the fistulas are only one problem, the other is his liver function and ability to recover or tolerate surgery. I am not sure I know where we stand. the liver biopsies were not end stage, and they are a year old. He has improved in the interim. This is uncharted territory, and dangerous, but I am not without hope for Peter. I am encouraged that he is tolerating a little feeds, and I would very gently keep pushing."
So far it seems that everyone is in agreement that the best thing for Peter now is to feed the gut and continue to give Peter time to lead us in the direction he needs to go. Several times I heard the comment that "Peter is writing his own book. He is doing something that has not been done before."
When we go back up again in August, we will reimage the bowel to see what connections he has in there. All of the doctors will try to be in the room while the imaging is happening live. If the connections seem simple and he seems to have a bowel that is functioning as we begin to feed him more, then perhaps we can do a "simple" surgery to fix what we can. If there is a very complex bowel that can only be surgically handled by complex surgery, then he may not be a surgical candidate any time soon for fear of creating more bowel fistulas. The thought is that Peter may be changing internally and that even the images he had in February may be much different now. We keep hoping!!
Nutritionally, Peter has plateaued on the growth and weight curves for his age. We are really hoping the bowel works from a nutritional standpoint too, in that we can't increase the TPN any further without increasing the number of hours he is on TPN. Interestingly, we have had to increase the vit C again, and he will now get 180mg IV added to the vitamins in standard TPN, up from an additional 100mg. Since fall 2006 we have had to add nutrients to Peter's TPN above what is standard for his age. Vit C, zinc, vit K, protein are all in excess of standard dosages. The protein and vit K extra amounts were added in Boston. Sodium for Peter seems best given in small amounts as he holds on to it strongly. We can decrease the calcitriol (vit D) now; since he is doing so much weight bearing exercise his bones are getting stronger.
Peter did a great job showing himself off this time in Boston. He must have walked almost an entire mile in the hospital - seriously. Over and over I heard, "I can't believe that is Peter!!" Or, "Have you seen Peter? Can you believe how good he looks?" Something seems to be going in Peter's favor. The prayers continue in thanksgiving and in request for his continued healing and happiness.
Wednesday, June 11, 2008
Starting up the bowel
We have restarted trophic feeds again. It is the first attempt again at feeding since March, when Peter started getting ill (from flagyl?). We started by clamping the G-tube a little bit each day until we hit our goal of being clamped for 12 hours a day. And we started feeds (elecare) with 1 tsp three times a day. Now we are at 2 tsp three times a day. The goal is 3 tsp three times a day, and then we are headed up to Boston for another check-up and a more rigorous testing of the bowel under controlled conditions.
I am excited to go up and resolve the question of whether the bowel works or not, as well as to see our third and final surgeon about whether Peter's bowel can be reconnected or whether we need to go on to transplant. The docs have been optimistic as much as they can... hard to know what to tell a parent when a child is doing things that have not been done before... as least as far as the liver goes. Peter should be getting chronically worse with his cirrhosis and his bleeding should be increasing and energy decreasing and he should be getting sick more and more. We don't see that... and we are thanking God every day!! To say that he is overcoming all of his health issues is hard to say. Maybe he is resolving some of them, or maybe he is just in a good place of equilibrium for now.
We will be testing his bowel function while we are in Boston by feeding him more aggressively and testing what comes out the different ostomies to see how well things are digested. We will be testing the liver function with a methionine breath test, which is still experimental but less invasive than a liver biopsy. We will also be looking at Peter's nutrition and determining how well his TPN is meeting his needs and what should be adjusted.
Peter's anemia is improving more and more since he stopped bleeding and since we put him on IV iron. His last hemoglobin was 9.9!! Platelets were only 68 though... they still are not normal. Labs generally improving over the months, but I can't say truly normal. The portal clot likely is still our biggest culprit of all of Peter's problems, as it continues to produce high pressure in the liver/portal system, affecting the spleen, possibly the intestine, and likely the liver too. Nonetheless, we are now at lab draws just every other week. CRP abruptly returned to normal three weeks ago and is holding at normal.
We are looking forward to showing off Peter's other progresses such as his walking and talking. A year ago we were still being transported to Boston with a medical flight crew and ground and air ambulance. Now we are driving up, Peter enjoys the ride, and we are planning whether or not to bring his walking toy or just have him hold my hand while PETER walks around the floor! Amazing!!
I am excited to go up and resolve the question of whether the bowel works or not, as well as to see our third and final surgeon about whether Peter's bowel can be reconnected or whether we need to go on to transplant. The docs have been optimistic as much as they can... hard to know what to tell a parent when a child is doing things that have not been done before... as least as far as the liver goes. Peter should be getting chronically worse with his cirrhosis and his bleeding should be increasing and energy decreasing and he should be getting sick more and more. We don't see that... and we are thanking God every day!! To say that he is overcoming all of his health issues is hard to say. Maybe he is resolving some of them, or maybe he is just in a good place of equilibrium for now.
We will be testing his bowel function while we are in Boston by feeding him more aggressively and testing what comes out the different ostomies to see how well things are digested. We will be testing the liver function with a methionine breath test, which is still experimental but less invasive than a liver biopsy. We will also be looking at Peter's nutrition and determining how well his TPN is meeting his needs and what should be adjusted.
Peter's anemia is improving more and more since he stopped bleeding and since we put him on IV iron. His last hemoglobin was 9.9!! Platelets were only 68 though... they still are not normal. Labs generally improving over the months, but I can't say truly normal. The portal clot likely is still our biggest culprit of all of Peter's problems, as it continues to produce high pressure in the liver/portal system, affecting the spleen, possibly the intestine, and likely the liver too. Nonetheless, we are now at lab draws just every other week. CRP abruptly returned to normal three weeks ago and is holding at normal.
We are looking forward to showing off Peter's other progresses such as his walking and talking. A year ago we were still being transported to Boston with a medical flight crew and ground and air ambulance. Now we are driving up, Peter enjoys the ride, and we are planning whether or not to bring his walking toy or just have him hold my hand while PETER walks around the floor! Amazing!!
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