About three weeks ago, after some emails back and forth with Peter's surgeon and the wound care nurse, we started using a baby bottle nipple in the stoma of the ileostomy to help divert poop back down the colon instead of out the stoma. The stoma still allows a good deal of stool to exit into the ostomy bag, but about 200 ml of stool does get diverted down through the colon with the bottle nipple in place. The bottle nipple is place in by inserting the tip into the stoma, with the part that would touch the bottle sticking out. This is placed inside the ostomy bag, and then an abdominal binder is placed over that to keep the nipple from popping back out of the stoma. It has worked fairly well in that he can still use the stoma as an emergency exit for stool, but it does have its limitations. For one, the stool from the bag smells horrible, like the plastic material that the nipple is reacting some to the stool. I can't see any visible problem, and I do put in a new nipple often. If I leave the nipple out, the smell goes away, so I don't think it is an issue with the stool itself. The other issue is that the binder then limits how much stool and gas can be contained in the ostomy bag. The binder basically compresses the entire bag so there is room for only about 1/3 of the bag's usual capacity. This means there are more trips to empty the bag of gas/stool, as well as more leaks of the bag if I don't get it emptied soon enough. We tried a leg bag attached to the ostomy bag to give some more room, but the stool is also very thick and doesn't go down freely, so it didn't help.
Aside from those complaints, what we have determined is that the colon works very well at concentrating stool and making formed poop. This is great news, and what we expected, but had not been able to actually determine up until now.
Peter is having a terrible time learning to use the potty for stool. He has been potty trained with urine for a couple of years now, but he does not like using the potty for stool. In fact, he does not like making stool rectally at all, and we are battling that now. After the surgeries last month, he would yell and carry on, jumping up and down trying to not go to the bathroom and just having little bits come out in his diaper. I thought that would clear up once we got home, but it basically has not. We have major bribes going on to get him to go on the potty, but he gets on there and gets frustrated. He says he doesn't like the feeling of going poop rectally, but that it doesn't hurt. He is getting a tiny bit better at going in his diaper without quite as much carrying on, but that is only sometimes. Chris is going to give potty training a shot this weekend to see if he can get Peter to go on the potty. I think the more he holds in rectally, the more backs out the ileostomy, so it would help so much if he would just let it out.. potty or diaper.
Peter has always been very dramatic with learning things that have been physically challenging or scary to him. When he learned to sit up sometime around 17 months old, he screamed as we would sit him up or prop him up. Once he mastered sitting, no more yelling about it. Then he did the same screaming learning how to stand. Once he could stand well, no more yelling about that either. This went on with walking, crawling (which he learned after walking), playing at the playground, riding a bike, swinging, etc. I often wondered what the neighbors thought about his screaming, wondering if they thought we were hurting him, as what child is that afraid of learning so many new things?! Anyway, I do believe he is screaming more out of fear of this unknown/foreign feeling than out of pain, as he doesn't act like he is in pain and doesn't complain of pain. I so much look forward to his mastery of going potty and more peace in the house! This yelling goes on one to several times a day and can get quite time consuming and frustrating for all of us.
On to some more pleasant news, Peter is getting a night off TPN tonight. He has been on TPN 7 nights a week since his surgeries, to help with wound healing and to give him a little extra beefing up for the next surgery. I sure do miss the freedom we had of being on TPN only 4 nights a week before the surgery. Getting the TPN set up takes about 20 minutes, which isn't so bad, although it it so nice NOT having to set it up when there have been nights off. The biggest problem of it is getting up twice during the night to change over the Omegaven bottle. Last night I was up 5 times between the Omegaven pump, Peter having to go pee-pee, his little brother having to go pee-pee, and the feeding pump going off because the enteral feeding tube had kinked. Chris has offered to get up to change over the Omegaven, but he does not fall back asleep easily whereas I do, so I don't think that is a good option. Getting Peter off TPN is the better option. To do that, he needs to get the ostomy closed so he can use the rest of his bowel for food absorption. To get the ostomy closed, he needs to make poop rectally and keep that colon in use so it gets bigger in diameter and we no longer need the emergency exit through the ostomy.
I never counted on Peter refusing to poop when we talked about getting the colon reconnected. It is funny in a way, but I am sure we will find more humor in it at some point later in life once he is past this point.
Thursday, November 22, 2012
Monday, October 29, 2012
At home again!
Though I meant to post more during Peter's stay at Children's, things got so busy there really was not time to post. Between rectal stool, ostomy issues, seeing doctors and nurses, and being a six-year-old who wanted to be kept busy, each day was quite packed with activity.
Peter came home this past Friday, the 26th. He is on two IV antibiotics three times a day through Wednesday, and then is fortunately done with them. He is currently back on TPN 7 nights a week instead of 4, but this should be temporary. His diuretic was increased to help remove some of the fluid weight he put on at the end of our stay.
Currently, Peter's stoma looks like it is going to be putting out much more than it initially was, and we are looking into ways to plug it up so that more stool goes downstream to the colon again. He has demonstrated that his colon does work and ideally we'd like to get as much stool to go there as possible, so that the colon is stretched enough to tolerate all stool when the stoma gets fully closed again. That should hopefully be in a few months.
Unfortunately, the decrease in ostomy stool seems like it will be a challenge to his already tenuous fluid balance, something I hadn't really considered amidst the excitement of getting the colon working again, hence the need to increase his diuretic now. We have removed all unnecessary sodium from his IV fluids, so his IV antibiotics are only mixed in water, and there is truly minimal sodium in his TPN (only 4 mEq in his 400 ml TPN bags).
Overall, he continues to be doing well and is his usual cheerful self. He is so excited that he is going to be home for Halloween and for his seventh birthday, which is November 1st. Hopefully Hurricane Sandy won't squash too many of his plans!
Peter came home this past Friday, the 26th. He is on two IV antibiotics three times a day through Wednesday, and then is fortunately done with them. He is currently back on TPN 7 nights a week instead of 4, but this should be temporary. His diuretic was increased to help remove some of the fluid weight he put on at the end of our stay.
Currently, Peter's stoma looks like it is going to be putting out much more than it initially was, and we are looking into ways to plug it up so that more stool goes downstream to the colon again. He has demonstrated that his colon does work and ideally we'd like to get as much stool to go there as possible, so that the colon is stretched enough to tolerate all stool when the stoma gets fully closed again. That should hopefully be in a few months.
Unfortunately, the decrease in ostomy stool seems like it will be a challenge to his already tenuous fluid balance, something I hadn't really considered amidst the excitement of getting the colon working again, hence the need to increase his diuretic now. We have removed all unnecessary sodium from his IV fluids, so his IV antibiotics are only mixed in water, and there is truly minimal sodium in his TPN (only 4 mEq in his 400 ml TPN bags).
Overall, he continues to be doing well and is his usual cheerful self. He is so excited that he is going to be home for Halloween and for his seventh birthday, which is November 1st. Hopefully Hurricane Sandy won't squash too many of his plans!
Saturday, October 13, 2012
The new stoma
Peter ended up having surgery again yesterday. The incision from the surgery on the 5th was infected and there was very little transit through the bowel to the colon even after a week. Peter was having large amounts of green bile come out the G-tube even a week post-op, and had developed a low-grade fever.
The surgery was another four hour surgery, but seems to have been successful in cleaning out the incision and in increasing the flow of gastic contents through the bowel. The down side to the surgery, besides the setback to going home, was that Peter ended up getting part of his ostomy back. This is supposed to be a temporary ostomy, and it is only 7mm big, so nothing, or very little, should come out of it. The idea is that it will be a "pop-off valve" for gas and stool to pass out if Peter's bowel is having difficulty sending things all the way through and out the rectum. This will keep the bowel from distending or having bowel contents back up into the stomach. Peter's bowel prior to this second surgery was distended inside, and that was causing problems with things passing through. In yesterday's surgery, Dr. Jennings additionally shaved off some of the granulation tissue from the old stoma which may have been causing some partial obstruction, but also adding the pop-off valve should hopefully allow Peter to hurry up home. The concept seems simple enough, I just hope that it all works this way and we are not having lots out this new stoma. It is too soon to tell how this is going to go.
Peter is on three IV antibiotics to fight the infection and they seem to be doing the trick. Peter was up and about today, only 16 hours after surgery, and only needed one dose of Tylenol for pain the entire day. He has a great spring to his step today, and seems to feel good, not "terrible" as he had been stating to people the last few days. He even made several rectal stools today. Perhaps tomorrow he can begin a "clears" diet, and we'll see how the bowel handles that. Today he was not allowed anything by mouth, other than some meds. More to follow as time allows.
Sunday, October 7, 2012
Bye bye ostomy!
Drum roll.... Peter's ileostomy is gone!
Peter had surgery on Friday to resolve the issue of why no more stool was coming out of his rectum. After the last surgery two months ago, he had great success with stooling for about a week, and then it all just stopped. Dr. Jennings agreed to do another surgery, but it was unclear why the stool was not coming all the way through any more. One of the possibilities was that the colon had folded over again and that the fold would surgically need to be removed (big surgery), or the other issue was that the stoma itself was the issue and needed another revision (minor surgery).
As the bowel fluoroscopy via enema was mentally horrendous for Peter when he had it done two months ago, Dr. Jennings and Dr. Kamin agreed to look at things when Peter was already asleep in surgery, and then come out and tell us which surgery Peter would need. To our great elation, the fold was not the issue, but the stoma was, and Dr. Jennings felt that the problem with it was that it prolapses. To resolve that, he decided to go ahead and close it off completely (a little more than minor surgery, but not the bigger one like a fold would have required). Peter went into surgery at 8 am, the doctors came out about 9 am to discuss the surgical plan to close the ostomy completely, and he was in recovery at noon. He went straight to the regular floor, no ICU. Amazing!
What a great joy to see no ostomy bag there, but a simple 2X2 gauze dressing and some tegaderm plastic covering instead! He still has a drain in the wound, but it puts out very little. Peter was given the OK to try clear fluids today. Unfortunately, he ended up needing to vent his G-tube by the end of the day and there was 300+ dark green bile in his stomach. However, his demeanor suggests that this is not a big deal, just a minor issue. Hopefully that is so. He is back to being off all fluids by mouth overnight, and we'll try again tomorrow. Peter walked over a mile yesterday, and over three miles today. The only pain med he has needed was one dose of Tylenol on Friday evening, and two doses on Saturday. We should all feel this good after bowel surgery!
To say we are thankful to God that Peter's bowel is in full continuity again is an understatement. This child had three emergency surgeries in 2006 that left him with FOUR ostomies, and he now has none. There have been thousands of prayers said for Peter over the years, and to see him with no appliances on his belly other than a tiny G-tube now is a beautiful sight, scars and all. We continue to pray that Peter's bowel recovers well from the surgery and that he is able to finally get off and stay off TPN.
Hopefully this computer will let me update more as he recovers. It is an old computer and very temperamental... completely non-functional last night, but worked immediately tonight.
Friday, August 24, 2012
Getting glasses
Peter got glasses last week. I took him to an optometrist at the end of July after noticing that he seemed to be reading with his face very close to his books, something that he didn't used to do. I printed out a Snellen chart, set it up according to the instructions, and gave him a vision test at home. He failed all four times I gave it to him over a two week period. He could read the second line with good, but not perfect, accuracy, and had less than 50% accuracy with the third line. He could not even attempt any of the lower lines. He had passed the Snellen vision test at the peditrician's office back in November, so I thought it was time to go straight to an eye doctor who could really examine beyond just reading an eye chart.
The optometrist felt that Peter has lazy eyes and needs to wear glasses to correct the vision and strengthen the eyes. He also has an astigmatism (as do I), so he will likely need to stay in glasses for that correction, once the lazy eyes are corrected.
I was surprised to hear that he has lazy eyes, as vision has never seemed a concern. Peter has been looking at books since he was old enough to hold them, and I've never been concerned that he could not see them well. As I said, he passed the vision exam at the peditrician's office, which always felt like a fail-safe in case I was missing something. The optometrist told me that Peter likely hasn't ever seen well, and that it was good that he is getting glasses now, so that correction is still possible. The news hit me a little hard, as I was feeling like a bad mom for not noticing that he wasn't seeing well. Furthermore, the optometrist said he should have been having this corrected quite some time ago. Sucker punch! Peter will see the opthalmologist at the practice when we go back in another six months. I am curious to know more about the lazy eyes and how I missed the issue earlier. Were there clues I should have been more aware of?
Anyway, now the trick is to get Peter to wear the glasses... properly. He keeps peering over the tops of the lenses, instead of through the lenses, about half the time. He also has been reluctant to wear the glasses in a social situation. When we got to Mass last weekend, he was insistant that he had to take the glasses off, lest someone he knew could not recognize him or would think it strange that he had them on. He also refuses to wear them when he is eating. The rest of the time he is pretty good about wearing them, but we have to get him to stop looking above the lenses.
I think he looks good with them on. The whole family does.
He prefers this look instead:
The optometrist felt that Peter has lazy eyes and needs to wear glasses to correct the vision and strengthen the eyes. He also has an astigmatism (as do I), so he will likely need to stay in glasses for that correction, once the lazy eyes are corrected.
I was surprised to hear that he has lazy eyes, as vision has never seemed a concern. Peter has been looking at books since he was old enough to hold them, and I've never been concerned that he could not see them well. As I said, he passed the vision exam at the peditrician's office, which always felt like a fail-safe in case I was missing something. The optometrist told me that Peter likely hasn't ever seen well, and that it was good that he is getting glasses now, so that correction is still possible. The news hit me a little hard, as I was feeling like a bad mom for not noticing that he wasn't seeing well. Furthermore, the optometrist said he should have been having this corrected quite some time ago. Sucker punch! Peter will see the opthalmologist at the practice when we go back in another six months. I am curious to know more about the lazy eyes and how I missed the issue earlier. Were there clues I should have been more aware of?
Anyway, now the trick is to get Peter to wear the glasses... properly. He keeps peering over the tops of the lenses, instead of through the lenses, about half the time. He also has been reluctant to wear the glasses in a social situation. When we got to Mass last weekend, he was insistant that he had to take the glasses off, lest someone he knew could not recognize him or would think it strange that he had them on. He also refuses to wear them when he is eating. The rest of the time he is pretty good about wearing them, but we have to get him to stop looking above the lenses.
I think he looks good with them on. The whole family does.
He prefers this look instead:
Thursday, August 9, 2012
Staged closure on the ileostomy and much drama
Peter had surgery on Tuesday to begin the take-down of his ileostomy. Unlike most ileostomy reversals these days, his will be taken down over a few surgeries, or stages, to keep bleeding quite minimal. He has a very large vein that goes to the stoma and the usual ostomy reversal surgery would risk cutting that vein and causing major circulatory issues for Peter. We expect one or two more "staged" surgeries over time, and then the ileostomy should be gone. In staging the surgery, the connection to the colon gets started, and then it is made larger with additional surgeries, and this then diverts more and more stool away from the ileostomy into the colon, also making the ostomy progressively smaller in the process.
You would never know that Peter had surgery two days ago. You might not have guessed it even on the day of surgery. He has been up walking about as if nothing ever happened. The only pain he has is a tiny bit of tenderness on the stoma itself, where the incision was made, and that only bothers him if someone pushes on it or he bumps it. Overall, the surgery seems to have been quite successful - no ICU, no pain, and a short stay.
There was a good amount of drama prior to the surgery though. On Thursday, Peter had to get a barium enema to establish that the colon was intact, only to find that the barium would not pass beyond a certain point. This caused him considerable distress and discomfort from the fluid going in, to the distention where it would not longer pass, and when it worked its way back out. The next day, Peter had a fever and he had bloodwork done along with blood cultures to establish whether this was an infection brewing. With a PICC line, there is always a low threshhold for fever and cultures are drawn to rule out a line infection. There was discussion of starting IV antibiotics, being admitted to the hospital right for observation, maybe doing antibiotics outpatient..... and then the thought too that perhaps the enema had caused problems and there was intestinal bacteria leaking into the gut. Peter's tender tummy lent additional credibility to that latter idea. Peter did not really act ill at all though, which he normally does if he is sick. The bloodwork didn't give a great conclusion one way or the other either. Finally, we all settled for observation by mom and dad outpatient, and a promise to call if the fever went up or he acted sick. Peter ended up fever-free by the evening and that was the end of that "little" issue. In retrospect, it is likely that Peter was dehydrated from the GI losses caused by the enema, along with the stress of it. The ascites that he has always, always make hydration status very difficult to accurately ascertain, so labs are not really helpful in knowing his salt and fluid stores; they just see what is in circulation at the time of the lab draw.
As the fever issues were unfolding on Friday, we had pre-op for the surgery, and then a meeting with interventional radiology. The meeting was to discuss whether a partial embolization of the spleen would help with the portal hypertension and whether it should be performed prior to work on the ileostomy reversal. In the end, it was decided that embolization may be something to keep in mind at some point, but that it was not necessary to do prior to surgery this time. As with so many things, there are big risks to embolizing and there would need to be more tests performed. There will be more discussions between the doctors about it over the next month or two, and I'll post more as I know more.
Monday came and Peter had a scheduled MRI to look at the circulation around the stoma, as well as to look at the liver itself. The big collateral vein around the stoma is larger than it was prior to the surgery Peter had last Fall. This was what was suspected, but we had all hoped it to not be the case since the large vein makes surgery around the stoma difficult. Since Peter was asleep for the MRI, there was fortunately no trauma involved there, other than the "usual" upset Peter has about having a sore throat after waking up post anesthesia. For him, a grape or cherry popsicle is a great cure and they fortunately had one to give him as soon as he woke up.
Going into surgery on Tuesday, we still had to establish that the colon was not strictured where the barium had stopped flowing, but that perhaps it had folded upon itself. Dr. Kamin went into the OR with Dr. Jennings and was able to get the colon open with CO2 gas and then run dye through (maybe it was also barium?) and did in fact show us that the colon was intact. Dr. Jennings then proceeded with the staged surgery through the ileostomy. As nice as it would be to have the whole ileostomy reversal done in one bigger surgery instead of several small ones, with the colon folding over like that, it is best for Peter to go with the staged surgery to slowly start getting his colon to work in case it should be prone to folding back over on itself again before it really gets used to being used.
This brings us back to where I started with this entry.
My guess is that this blog entry will be a bit confusing. I thought of keeping the update short and upbeat like the surgery itself, but the wild ride we've had this week seemed to need to come out and be shared. It is my hope that people will keep praying for Peter, and maybe if I share some of the craziness that occurred the need for continued prayers will be better understood. There is still much to sort out with the spleen, the liver, and the portal hypertension so that the next surgeries can be performed safely and so we can continue to help Peter get to better health. If you can say a prayer for Peter, please do. Thank you, and God bless you!
UPDATE: As I reread what I wrote last night, I realize that I have poorly captured the "drama" or "wild ride" of this trip that I was trying to share. It was certainly not the intense drama of last Fall's surgery, just many smaller issues, some with potential to be much bigger issues and others just big nuisances, and the stress that goes along with such bombardments of problems. For example, after the "news" that Peter's colon may have a stricture to prevent surgery as planned, he was still continuing to expel the enema contents with no real warning this was occurring, over and over again. Peter had to drive home in only a pull-up on the way home after the barium enema after the pull-up leaked all over his clothing, shoes, and the curb of the street. He was so stressed out about the whole enema experience that he fell asleep three times on the hour-long trip back to where we were staying. For example, yesterday morning, Peter woke up covered in formula from where the feeding tube popped out of his G-tube. As we bathed him, changed his clothes, changed the sheets, he scratched at the ostomy bag and then I needed to immediately change it so it would not leak. All this was before 7am. For example, for no real reason, my cell phone went haywire for several days and that is my main communication device with the doctor and nurses when we are in Boston outpatient. That was not a major issue, but another nuisance issue on top of other issues. Now the phone works again find. For example, one of Peter's siblings woke up with a cold Sunday morning (tons of sneezing and sniffling) which of course would have prevented surgery if Peter had caught it. For example, the MRI not only shows the larger blood vessel, but also shows concerning nodules in the liver that still need more follow up with a blood test and another MRI in 6 months. I'll update more on that if it does end up a true issue. Well, time to go. Peter is up and ready to take a stroll!
UPDATE: As I reread what I wrote last night, I realize that I have poorly captured the "drama" or "wild ride" of this trip that I was trying to share. It was certainly not the intense drama of last Fall's surgery, just many smaller issues, some with potential to be much bigger issues and others just big nuisances, and the stress that goes along with such bombardments of problems. For example, after the "news" that Peter's colon may have a stricture to prevent surgery as planned, he was still continuing to expel the enema contents with no real warning this was occurring, over and over again. Peter had to drive home in only a pull-up on the way home after the barium enema after the pull-up leaked all over his clothing, shoes, and the curb of the street. He was so stressed out about the whole enema experience that he fell asleep three times on the hour-long trip back to where we were staying. For example, yesterday morning, Peter woke up covered in formula from where the feeding tube popped out of his G-tube. As we bathed him, changed his clothes, changed the sheets, he scratched at the ostomy bag and then I needed to immediately change it so it would not leak. All this was before 7am. For example, for no real reason, my cell phone went haywire for several days and that is my main communication device with the doctor and nurses when we are in Boston outpatient. That was not a major issue, but another nuisance issue on top of other issues. Now the phone works again find. For example, one of Peter's siblings woke up with a cold Sunday morning (tons of sneezing and sniffling) which of course would have prevented surgery if Peter had caught it. For example, the MRI not only shows the larger blood vessel, but also shows concerning nodules in the liver that still need more follow up with a blood test and another MRI in 6 months. I'll update more on that if it does end up a true issue. Well, time to go. Peter is up and ready to take a stroll!
Friday, July 20, 2012
Peter's gray and brown striped teeth
These are the photos of Peter's teeth. As stated before, they are this color due to very prolonged, quite elevated bilirubin as an infant/toddler. Peter's bilirubin levels were elevated from about age five or six months through age two, with a good handful of prolonged high bili levels ranging from above 10 to low 30s. Usually bili-stained teeth are only seen on primary teeth, I have been told. Peter's primary teeth are the ones that have some white visible, and the gray in his primary teeth is quite dark for bili-staining. Peter' bilirubin levels were also elevated when his secondary teeth were forming, so we see the staining in those teeth as well. The front six brown and gray striped teeth are his secondary teeth.
The choices of how to fix the color are realistically only two so far: hide them with Snap-On-Smile or veneers that are non-bonded as to keep the teeth in best condition for adulthood. With both choices, the plan is to crown the teeth as an adult. As a growing child, crowning cannot be done because the gums normally recede quite a bit throughout childhood and the dark teeth would become visible between the crown and the gumline. This is the same rationale for using a non-bonded technique for the veneers, as they would have to be replaced every year or two.
I am hoping that someone in the world of pediatric dentistry has come up with another solution and can share it here. We may post the images online elsewhere too, in hopes of finding an answer. The skilled dentists we have seen have solicited many, many colleagues, so there may not be another answer anywhere yet, but maybe someone will be inspired in finding a solution upon seeing Peter's teeth. Dr. Kamin has pondered whether laser might be effective in rendering the dark bilirubin stains invisible, as bili lights do for the newborn with high bilirubin, but he is a GI doctor and has suggested that as something to ask about. The stains are throughout the teeth, so microdermabrasion will not work. The teeth can be bleached from the inside out, but to do so will mean a root canal for each tooth and then Peter is left will a mouth full of dead teeth.
So, if anyone has ideas, please share them here. Thank you!
Friday, July 6, 2012
The spleen, the ostomy, and the hope
Good news on the spleen. The ultrasound shows that the spleen may possibly measure smaller than it used to, but that is to be taken with a grain of salt (or sodium - haha), as the measurements can vary depending upon the angle the measurements are taken. There were not clots or concerns about the spleen other than its usual big size and the portal hypertension associated with it, along with Peter's low platelets and low white count. Those issues are concerning, but not life-threatening at this point, as we had started to worry when the spleen felt hard and larger back in early June.
That said, discussions on the spleen include further evaluation by interventional radiology (IR) to see if it would be good to embolize the spleen to improve the blood counts and possibly lower the portal hypertension. We will meet with one of the IR docs with whom Dr. Kamin has been talking, when we return to Boston. He will review Peter's history and talk with us about the ins and outs of embolizing the spleen and whether it could be helpful or harmful to Peter.
The endoscopy on this trip also went well. Dr. Kamin still sees that there are two varices (varicose veins) in the esophagus, but they are a little less prominent than before. It is hard to tell if they are the same two varices as before or two new ones in the same location. He banded them and we will look again in 4 to 6 months. The fact that they look less prominent also is a good indication that the spleen and portal hypertension are not worse than they used to be.
The bad part about the endoscopy was Peter's last minute resistance to the mask used by anesthesia. He had been so cooperative up until the mask went on and then fought it. He was understandably worried about the sore throat that he would have upon waking up post endoscope. It is a challenge trying to help a child when that child has to act grown up in a situation but has the fears of a child. He did have a sore throat as he knew he would, but thinks that next time he can use the mask as he has before and wants us to plan on a really special treat after the procedure; the book I got him and the surprise gift a friend gave him apparently wasn't quite enough of a treat. He is requesting a trip to Trader Joe's as his next post-procedure treat!
We met with Dr. Kamin and Meghan (Peter's main nurse for CAIR) later and discussed the next plans. Dr. Jennings was supposed to be there as well but was unable to be there. Dr. Kamin filled in what he would have said. We had run into Dr. Jennings the day before, as we were in the waiting room to see Meghan, and so I had some idea that we might discuss the ostomy surgery, but he wanted to get the results of the scope and ultrasound from Dr. Kamin first. The plans that they have come up with are that we will get an MRI of Peter's circulation to see if/how things have changed since the fistula surgery last Fall. Then we will discuss HOW to take down the ileostomy so we can give Peter full use of his bowel and hopefully finally make those final strides off TPN!! The timeline for this is tentatively as soon as August! Looking at the history of planning surgeries for Peter, I know to take this all as just a possibility, as time and again the surgeries we talked about would get scrapped or moved to a future date. If that happens, it is not a bad thing, as so far, every surgery has gotten Peter progressively better. The wait has always been worth it in the end. I know that the imaging will determine much about the surgery. If the circulation around the ostomy is quite concerning, the surgery may need to be customized, possibly even done in stages, as to not cause too much bleeding or increased portal hypertension. It may be that IR decides that embolizing the spleen will help and do that sometime before the ostomy surgery. There is much to unfold, but we expect to have many answers after this next visit once the MRI is performed and Drs. Jenning, Kim, and Kamin review the circulation, and after we all see what IR has to say.
That said, discussions on the spleen include further evaluation by interventional radiology (IR) to see if it would be good to embolize the spleen to improve the blood counts and possibly lower the portal hypertension. We will meet with one of the IR docs with whom Dr. Kamin has been talking, when we return to Boston. He will review Peter's history and talk with us about the ins and outs of embolizing the spleen and whether it could be helpful or harmful to Peter.
The endoscopy on this trip also went well. Dr. Kamin still sees that there are two varices (varicose veins) in the esophagus, but they are a little less prominent than before. It is hard to tell if they are the same two varices as before or two new ones in the same location. He banded them and we will look again in 4 to 6 months. The fact that they look less prominent also is a good indication that the spleen and portal hypertension are not worse than they used to be.
The bad part about the endoscopy was Peter's last minute resistance to the mask used by anesthesia. He had been so cooperative up until the mask went on and then fought it. He was understandably worried about the sore throat that he would have upon waking up post endoscope. It is a challenge trying to help a child when that child has to act grown up in a situation but has the fears of a child. He did have a sore throat as he knew he would, but thinks that next time he can use the mask as he has before and wants us to plan on a really special treat after the procedure; the book I got him and the surprise gift a friend gave him apparently wasn't quite enough of a treat. He is requesting a trip to Trader Joe's as his next post-procedure treat!
We met with Dr. Kamin and Meghan (Peter's main nurse for CAIR) later and discussed the next plans. Dr. Jennings was supposed to be there as well but was unable to be there. Dr. Kamin filled in what he would have said. We had run into Dr. Jennings the day before, as we were in the waiting room to see Meghan, and so I had some idea that we might discuss the ostomy surgery, but he wanted to get the results of the scope and ultrasound from Dr. Kamin first. The plans that they have come up with are that we will get an MRI of Peter's circulation to see if/how things have changed since the fistula surgery last Fall. Then we will discuss HOW to take down the ileostomy so we can give Peter full use of his bowel and hopefully finally make those final strides off TPN!! The timeline for this is tentatively as soon as August! Looking at the history of planning surgeries for Peter, I know to take this all as just a possibility, as time and again the surgeries we talked about would get scrapped or moved to a future date. If that happens, it is not a bad thing, as so far, every surgery has gotten Peter progressively better. The wait has always been worth it in the end. I know that the imaging will determine much about the surgery. If the circulation around the ostomy is quite concerning, the surgery may need to be customized, possibly even done in stages, as to not cause too much bleeding or increased portal hypertension. It may be that IR decides that embolizing the spleen will help and do that sometime before the ostomy surgery. There is much to unfold, but we expect to have many answers after this next visit once the MRI is performed and Drs. Jenning, Kim, and Kamin review the circulation, and after we all see what IR has to say.
Monday, June 25, 2012
Peter's last check up was great in terms of weight gain. His arm measurements indicated that the weight was real weight, not just fluid gain. We decided to give sprironolactone a try again. Spironolactone is a diuretic which should help Peter to lose some of the ascites fluid along with some of the sodium. That should then help us to be able to afford him a little more sodium in his diet without the extra fluid accumulation. It did not help the last time he tried it, but I can't figure out how to decrease sodium further, given that a significant part of his diet is yogurt and Lactaid, both of which have naturally occuring sodium in them. His formula is one of the lower sodium formulas. He eats only low sodium foods on top of that, and his TPN is as low in sodium as they can get it too. So, we are trying this diuretic again. I can't tell if it has helped, but it has not seemed to cause a problem at any rate.
He has been on ursodiol now for about a month, and that has seemed to be quite helpful with him digesting fat. The liver numbers seem to indicate that this med has helped as well. Ursodiol is a bile salt, and is often used in gall bladder disease and in TPN cholestasis. I think it may be used for short gut as well, but not totally sure of that.
Vitamin D levels indicate that his levels are still is too low on 2000 IU/day, so he is now going up to 10,000 IU/day for 6 weeks to rebuild his levels. His dexa scan two months ago indicates that he still has osteopenia, which is one of the downsides to long term TPN.
So the down side to the visit is that Peter's spleen is considerably larger by physical exam than it was back in February when the last endoscopy was done to band off enlarged esophageal varices. ( I see that I forgot to post about that, but basically he had a scope done to check for large varices and Dr. Kamin did end up banding two of them that were a little large. This was done as follow up to the bleed he had after his fistula surgery last Fall.) Peter was due to have another scope in August, again as follow up, but in light of the spleen size and the platelet decrease, he wants Peter back sooner to rescope and check for new or enlarged varices. Instead of returning in 8 weeks as hoped, we return in 3 weeks from the last visit. If the varices in the esophagus are very large, they can bleed and not stop. Banding can be done to shrink the varices and keep that situation from occurring. Meanwhile, we are looking into what can be done about the spleen itself. Peter's platelet count has been in the low 30,000 range the past couple months. He is not bleeding, but the number can't get too much lower without real concern for spontaneous bleeding. A splenectomy is likely not a possibility, but there may be a way to embolize the circulation to it to decrease its size and restore the platelet and white count values to more normal levels. The procedure is called a partial splenic embolization. We should know more about i,t and whether it is the route to go with Peter's spleen, after this trip.
Peter is getting a little tired of the trip lately. It is hard for him to understand why we need to keep going up there. He used to love the trip, but we are going so often over the last year, that there isn't much time to build up anticipation for the next trip. We should get to a point again where the trips space out further, and we are just viewing this as more bumps in the road, but I will have to figure out new ways to make the trip fun again.
He has been on ursodiol now for about a month, and that has seemed to be quite helpful with him digesting fat. The liver numbers seem to indicate that this med has helped as well. Ursodiol is a bile salt, and is often used in gall bladder disease and in TPN cholestasis. I think it may be used for short gut as well, but not totally sure of that.
Vitamin D levels indicate that his levels are still is too low on 2000 IU/day, so he is now going up to 10,000 IU/day for 6 weeks to rebuild his levels. His dexa scan two months ago indicates that he still has osteopenia, which is one of the downsides to long term TPN.
So the down side to the visit is that Peter's spleen is considerably larger by physical exam than it was back in February when the last endoscopy was done to band off enlarged esophageal varices. ( I see that I forgot to post about that, but basically he had a scope done to check for large varices and Dr. Kamin did end up banding two of them that were a little large. This was done as follow up to the bleed he had after his fistula surgery last Fall.) Peter was due to have another scope in August, again as follow up, but in light of the spleen size and the platelet decrease, he wants Peter back sooner to rescope and check for new or enlarged varices. Instead of returning in 8 weeks as hoped, we return in 3 weeks from the last visit. If the varices in the esophagus are very large, they can bleed and not stop. Banding can be done to shrink the varices and keep that situation from occurring. Meanwhile, we are looking into what can be done about the spleen itself. Peter's platelet count has been in the low 30,000 range the past couple months. He is not bleeding, but the number can't get too much lower without real concern for spontaneous bleeding. A splenectomy is likely not a possibility, but there may be a way to embolize the circulation to it to decrease its size and restore the platelet and white count values to more normal levels. The procedure is called a partial splenic embolization. We should know more about i,t and whether it is the route to go with Peter's spleen, after this trip.
Peter is getting a little tired of the trip lately. It is hard for him to understand why we need to keep going up there. He used to love the trip, but we are going so often over the last year, that there isn't much time to build up anticipation for the next trip. We should get to a point again where the trips space out further, and we are just viewing this as more bumps in the road, but I will have to figure out new ways to make the trip fun again.
Bilirubin-stained teeth
We have been making the circuit with dentists, trying to find out what to do to improve the look of Peter's teeth. We've been to three so far, each one further away than the last. The last one took two hours to get to, but has a great reputation and I know him from years ago.
Peter's front top two teeth, and bottom four teeth, are slate-gray, with some tea-brown color at the tips. These are his permanent teeth. His baby teeth are discolored as well, but not quite as dramatically. The discoloration is due to sustained elevated bilirubin that occurred during infancy as his teeth were still in formation. He had high bilirubin for many months, sometimes with levels in the mid to upper 20s range sustained.
The latest dentist took photos of Peter's teeth and gave a copy to me. I'll post them with this blog one of these days soon.
Omegaven helped his liver, thereby bringing down the bilirubin levels, and ultimately kept him from needing a multivisceral transplant. Usually a child with this level of bilirubin has either succombed to the liver illness or has gone on for liver transplant.
The dentists are puzzled with what to do for someone like Peter who has pulled through such a long illness. We may be looking at veneers, but there is concern that in a six year old child they will not have a long life before needing to be redone where the gumline becomes visible as the child grows. There is also concern that the veneers will pop off and he could aspirate them. The veneers would be done without the usual preparation so that they will be stronger and able to withstand the probable braces he needs as well. Bleach is not an option unless it is done after a root canal so the teeth could be bleached from within. That then leaves a person with dead teeth though, and that is not a great option either. As an adult, he will likely get veneers or crowns and they will last many years, but as a child the gumline apparently recedes some every year until adulthood. (In addition to ostomies, wound vacs, TPN, and such, I am learning a lot about teeth through Peter's illness too!)
The latest dentist suggested that if Peter is OK with his teeth color, which he is so far, then maybe just let the teeth be until he becomes concerned about it. As I type that, I realize that advice sounds cold, but he did not mean it that way. His concern was that it may be in Peter's best interest to leave the teeth be so that when he is able to have something done for them on a more permanent basis, he has strong teeth to work with. Meanwhile, both dentists that gave us advice are continuing to look for more solutions to this problem. They have been consulting colleagues across the country and have been very compassionate about Peter's situation.
With both of the pediatric dentists we have seen over the last 3 weeks, I have been close to tears with their kindness and empathy. They both clearly have that great quality that we have seen in Dr. Kamin and Dr. Jennings, which is to take that child's situation and own it and repeatedly work on finding a solution, regardless of the inconvenience to oneself. God has put such kind, compassionate people in our lives and it is humbling as well as reaffirming of the goodness of others.
UPDATE: I realize that I never did end up posting this and it has been a month now. The dentist who suggested that we do nothing contacted me late last week and said that he has had Peter on his mind since he saw him, and has called colleagues all over the nation. He said that he still thinks our best bet to save Peter's teeth so they can make it into adulthood in good condition and ready to crown would be to do really nothing for now. He said there is an appliance called Snap-on-Smile, which would cosmetically cover all of his teeth, but not actually change them. He then offered to call the other more local dentist to discuss it with him as an option instead of veneers. I'll keep sharing what I find out.
Peter's front top two teeth, and bottom four teeth, are slate-gray, with some tea-brown color at the tips. These are his permanent teeth. His baby teeth are discolored as well, but not quite as dramatically. The discoloration is due to sustained elevated bilirubin that occurred during infancy as his teeth were still in formation. He had high bilirubin for many months, sometimes with levels in the mid to upper 20s range sustained.
The latest dentist took photos of Peter's teeth and gave a copy to me. I'll post them with this blog one of these days soon.
Omegaven helped his liver, thereby bringing down the bilirubin levels, and ultimately kept him from needing a multivisceral transplant. Usually a child with this level of bilirubin has either succombed to the liver illness or has gone on for liver transplant.
The dentists are puzzled with what to do for someone like Peter who has pulled through such a long illness. We may be looking at veneers, but there is concern that in a six year old child they will not have a long life before needing to be redone where the gumline becomes visible as the child grows. There is also concern that the veneers will pop off and he could aspirate them. The veneers would be done without the usual preparation so that they will be stronger and able to withstand the probable braces he needs as well. Bleach is not an option unless it is done after a root canal so the teeth could be bleached from within. That then leaves a person with dead teeth though, and that is not a great option either. As an adult, he will likely get veneers or crowns and they will last many years, but as a child the gumline apparently recedes some every year until adulthood. (In addition to ostomies, wound vacs, TPN, and such, I am learning a lot about teeth through Peter's illness too!)
The latest dentist suggested that if Peter is OK with his teeth color, which he is so far, then maybe just let the teeth be until he becomes concerned about it. As I type that, I realize that advice sounds cold, but he did not mean it that way. His concern was that it may be in Peter's best interest to leave the teeth be so that when he is able to have something done for them on a more permanent basis, he has strong teeth to work with. Meanwhile, both dentists that gave us advice are continuing to look for more solutions to this problem. They have been consulting colleagues across the country and have been very compassionate about Peter's situation.
With both of the pediatric dentists we have seen over the last 3 weeks, I have been close to tears with their kindness and empathy. They both clearly have that great quality that we have seen in Dr. Kamin and Dr. Jennings, which is to take that child's situation and own it and repeatedly work on finding a solution, regardless of the inconvenience to oneself. God has put such kind, compassionate people in our lives and it is humbling as well as reaffirming of the goodness of others.
UPDATE: I realize that I never did end up posting this and it has been a month now. The dentist who suggested that we do nothing contacted me late last week and said that he has had Peter on his mind since he saw him, and has called colleagues all over the nation. He said that he still thinks our best bet to save Peter's teeth so they can make it into adulthood in good condition and ready to crown would be to do really nothing for now. He said there is an appliance called Snap-on-Smile, which would cosmetically cover all of his teeth, but not actually change them. He then offered to call the other more local dentist to discuss it with him as an option instead of veneers. I'll keep sharing what I find out.
Wednesday, May 23, 2012
Boston Children's Hospital blog
We were asked if we would be willing to write a little bit on what life is like with a child on TPN and share it with Boston Children's Hospital for posting on their blog site. The hospital has an editor who worked with us in drafting the piece, and we are happy with how it came out. It was hard to focus just on the TPN aspect of Peter's care at Children's and there were many drafts trying to tease that out. It was difficult keeping a brief list of those who have helped Peter over the years. There are so many great nurses and doctors at the hospital and we are incredibly grateful for the care Peter has received. In the end, we did focus on the CAIR team since the piece is really about Peter's TPN.
Dr. Raphael, who is the Director of the home parenteral nutrition (TPN) team, thought that it would be helpful for parents who are new to TPN to have a glimpse at another family who has a child on TPN. I don't know if this will accomplish that goal, but know that I would have liked finding something like it when we first started Peter on TPN.
Anyway, here is the blog URL: http://childrenshospitalblog.org/a-labor-of-love-life-with-total-parenteral-nutrition/. The title was chosen by the editor. TPN is labor-intensive, yes... but we all have labor-intensive things we do for our children or other family members, healthy or otherwise.
Dr. Raphael, who is the Director of the home parenteral nutrition (TPN) team, thought that it would be helpful for parents who are new to TPN to have a glimpse at another family who has a child on TPN. I don't know if this will accomplish that goal, but know that I would have liked finding something like it when we first started Peter on TPN.
Anyway, here is the blog URL: http://childrenshospitalblog.org/a-labor-of-love-life-with-total-parenteral-nutrition/. The title was chosen by the editor. TPN is labor-intensive, yes... but we all have labor-intensive things we do for our children or other family members, healthy or otherwise.
TPN back down to 5 nights per week
Peter is down to 5 nights of TPN again as of the beginning of last week. He holds on to sodium and fluid, particularly when given in IV form. After looking at his intake and output and how much fluid he has been retaining lately, Dr. Kamin gave us the green light to cut back on it since he has regained all of the weight he lost last month, and then some. So far, Peter is holding his weight well with the loss of two nights of IV intake.
As nice as it is for me to be free of preparing and dealing with TPN two nights a week, the excitement for Peter is even greater. He seems to feel rewarded for all of the effort he has been putting into eating. When we had to put him back on TPN after being free of it for almost a month, he was disappointed. I think the disappointment went beyond just having to be tethered to IV tubing. He had been drinking all of the formula, even when he did not want to, and then found out that all of that hard work had not accomplished the goal of staying off TPN. It was a bit defeating.
Peter is still loving the real foods approach to getting off TPN. He is drinking 330 ml of Lactaid daily, eats Greek yogurt twice a day with pureed baby fruit, and then pureed meat and vegetable for dinner. The rest of the day he eats as he wishes (keeping low sodium in mind, as well as the need to watch whether the food agrees with his ileostomy and doesn't send his output up too high). He is still on a big kick with fruits and vegetables, admiring them, talking about them, and thinking about what they might tasted like. It is a hoot taking him to the grocery store where he just can't get enough of the produce aisle. Fortunately, he is eating small enough portions of fruit that his ostomy has not been affected. He is busy planning out our garden these days and thinks that he'll take the wagon out there and use it to haul in what we grow. Hopefully we have a good growing year.
Peter's overnight formula has been going well also. He is up to 530 of Pediasure Peptide (plain flavor so osmolarity is low) and we are now adding 2 Tbsp of Duocal to bump up calories without more fluid or sodium.
Now, if he can just stay in this spot until we get to Boston, then we can verify (hopefully) whether he has gained real weight or if it has all been fluid. He is definitely not gaunt as he was last month when he had such high diarrhea losses, so we are hopeful that most of this is real weight.
One last note, Peter got the OK to start eating peanuts and nuts. His brother is allergic to peanut, so we have avoided giving peanut and any nuts to Peter hoping that postponing them would help avoid an allergy, as well as not knowing how an allergic reaction would fare on him. He has been hospitalized with two allergic reactions to flagyl, so the concern about reaction did have real merit. Anyway, he was tested for allergies to peanut and tree nuts, and he is safe to eat them. He LOVES peanut butter now that he has tasted it and insists that he must have it. Hopefully this does not go the way that the alphabet noodles did and end up just sitting uneaten in the cabinet after the first couple of days of eating it. Peter has declared that he does not like anything out of the "cereal, pasta, and bread group." Funny child!
As nice as it is for me to be free of preparing and dealing with TPN two nights a week, the excitement for Peter is even greater. He seems to feel rewarded for all of the effort he has been putting into eating. When we had to put him back on TPN after being free of it for almost a month, he was disappointed. I think the disappointment went beyond just having to be tethered to IV tubing. He had been drinking all of the formula, even when he did not want to, and then found out that all of that hard work had not accomplished the goal of staying off TPN. It was a bit defeating.
Peter is still loving the real foods approach to getting off TPN. He is drinking 330 ml of Lactaid daily, eats Greek yogurt twice a day with pureed baby fruit, and then pureed meat and vegetable for dinner. The rest of the day he eats as he wishes (keeping low sodium in mind, as well as the need to watch whether the food agrees with his ileostomy and doesn't send his output up too high). He is still on a big kick with fruits and vegetables, admiring them, talking about them, and thinking about what they might tasted like. It is a hoot taking him to the grocery store where he just can't get enough of the produce aisle. Fortunately, he is eating small enough portions of fruit that his ostomy has not been affected. He is busy planning out our garden these days and thinks that he'll take the wagon out there and use it to haul in what we grow. Hopefully we have a good growing year.
Peter's overnight formula has been going well also. He is up to 530 of Pediasure Peptide (plain flavor so osmolarity is low) and we are now adding 2 Tbsp of Duocal to bump up calories without more fluid or sodium.
Now, if he can just stay in this spot until we get to Boston, then we can verify (hopefully) whether he has gained real weight or if it has all been fluid. He is definitely not gaunt as he was last month when he had such high diarrhea losses, so we are hopeful that most of this is real weight.
One last note, Peter got the OK to start eating peanuts and nuts. His brother is allergic to peanut, so we have avoided giving peanut and any nuts to Peter hoping that postponing them would help avoid an allergy, as well as not knowing how an allergic reaction would fare on him. He has been hospitalized with two allergic reactions to flagyl, so the concern about reaction did have real merit. Anyway, he was tested for allergies to peanut and tree nuts, and he is safe to eat them. He LOVES peanut butter now that he has tasted it and insists that he must have it. Hopefully this does not go the way that the alphabet noodles did and end up just sitting uneaten in the cabinet after the first couple of days of eating it. Peter has declared that he does not like anything out of the "cereal, pasta, and bread group." Funny child!
Friday, April 27, 2012
April's check-up
Peter just had another check-up in Boston. With a little over a pound of weight gain since the last visit six weeks ago, and a consistent increase in food intake, we had been excitedly anticipating a decrease in TPN. Then six days before our visit he developed an episode of high ostomy output which lasted four days and resulted in a weight loss of three pounds, even with IV fluid replacements. Throughout it all, Peter acted well, although he was frustrated that he was very limited in what he was allowed to eat as we tried to use dietary management to get the diarrhea to stop.
We think it was a GI bug, as two of his siblings have had subsequent GI distress, but neither of them had symptoms to this degree. With his possible short-gut and with a high ileostomy, it would be expected for Peter to have greater response to a GI bug though. As his ostomy is back to normal now, we will resume feeds as before and hopefully see the weight gain again.
What concerned the CAIR team that there may be more to this situation though, is that Peter’s BMI measurements indicate that he has had long term weight loss, and that his weight gain since the last CAIR visit may be only fluid gain, not real weight. There is a remote chance that the diarrhea really profoundly affected him, and that is what we are actually seeing with the BMI measurements, but since it is so hard to tell, the plan is to come back in another month to check up on him again. (And I used to think that going there every two months was often!) Meanwhile, we will give Peter a little bit MORE TPN, instead of the decrease we had been anticipating a week ago, to help him avoid nutritional deficiencies if he is not really aborbing all he is taking in enterally. If he puts on weight quickly, then we can likely cut back on the TPN again and chalk up the weight loss to the diarrhea, but no one (including us) wants to see him get any more gaunt than he is at this point.
Peter has demonstrated great health resilience in the past, and he continues to do that now, never slowing down through the weight loss. We are glad that he feels good, but it confounds the situation as to how seriously to take his weight loss. As such, even though the monthly travel is stressful, we agree it makes sense to return again in a month and reassess how he is doing at that time.
We think it was a GI bug, as two of his siblings have had subsequent GI distress, but neither of them had symptoms to this degree. With his possible short-gut and with a high ileostomy, it would be expected for Peter to have greater response to a GI bug though. As his ostomy is back to normal now, we will resume feeds as before and hopefully see the weight gain again.
What concerned the CAIR team that there may be more to this situation though, is that Peter’s BMI measurements indicate that he has had long term weight loss, and that his weight gain since the last CAIR visit may be only fluid gain, not real weight. There is a remote chance that the diarrhea really profoundly affected him, and that is what we are actually seeing with the BMI measurements, but since it is so hard to tell, the plan is to come back in another month to check up on him again. (And I used to think that going there every two months was often!) Meanwhile, we will give Peter a little bit MORE TPN, instead of the decrease we had been anticipating a week ago, to help him avoid nutritional deficiencies if he is not really aborbing all he is taking in enterally. If he puts on weight quickly, then we can likely cut back on the TPN again and chalk up the weight loss to the diarrhea, but no one (including us) wants to see him get any more gaunt than he is at this point.
Peter has demonstrated great health resilience in the past, and he continues to do that now, never slowing down through the weight loss. We are glad that he feels good, but it confounds the situation as to how seriously to take his weight loss. As such, even though the monthly travel is stressful, we agree it makes sense to return again in a month and reassess how he is doing at that time.
Saturday, March 17, 2012
March CAIR visit in Boston
Back home again after a "routine check-up" in Boston. We are looking forward to spacing the trips further apart, but not sure when that will happen. We had been going there every two months for visits, but last year went there nine times. It is only March and we've been there twice this year already, with plans to return next month as well for another check-up.
Peter has been doing well with a diet of real food during the day and unflavored formula overnight. He has not gained enough weight or muscle mass to come off a night of TPN yet though. He is down to 400 ml seven nights a week, which is down from the 750 ml that he had been put on after our last trip to Boston.
While we were in Boston, we had some spare time before his appointment so we went to Trader Joe's and found a few fun things for Peter that were low in sodium. (Thanks for your suggestion to look there, Colleen!) They make a very flavorful tortilla chip that Peter fell in love with, called Veggie and Flaxseed Tortilla Chips. He has eaten half a 12 ounce bag in two days! He really craves flavor and there are three distinctly different chip flavors in the bag. They have a long list of low-sodium products that they carry, which will be fun to explore. Unfortunately, many of Trader Joe's products state that they may contain peanuts or be processed in a facility that uses nuts/peanuts, so we need to avoid them until we talk with an allergist about whether Peter can have nuts/peanuts, since he has a brother with peanut allergy. But the chips were a great find. We picked up some Falafel Chips to try as well, no peanut/tree nut warnings there either. The plan between this visit and the next is to keep advancing nighttime feeds and try to get some more fat in during the day. Dr. Kamin told us about whole milk Greek yogurt. We have been using Chobani, which has lots of protein and Peter loves, but the highest fat yogurt they make is 2%, and usually we can only find 0%. He only eats the plain flavor because, like the formula, when sugar is added the osmolality goes up and so can the ostomy output. Even without an ostomy, people with short bowel syndrome often need to watch their sugars to keep stooling down. We found some whole milk Greek yogurt yesterday, with fat content of 15%! It looks like sour cream and is very rich. Peter felt full faster, but we'll keep working with it to see if that might add some more calories. He doesn't like to eat butter, but we are going to try to sneak that into his Gerber purees. He always adds spices to them anyway, so it should be easy to get the butter in without his detection. If we get a "clear" for trying peanut butter, that might give some healthy fat too. He does drink whole-milk Lactaid. (Yes, he eats yogurt, but the team in Boston had awhile ago recommended Lactaid instead of milk, so we've still got him on that so we don't have to re-examine whether it is milk causing a problem with motility.) He does not like avocados and gets tired of eggs after just a bite or two, but they would be good options for quality fat too. Well, enough about food.
Of interest, images of Peter's liver circulation over the last several months seem to show that his portal vein clot is no longer there and that there is some blood flow through the portal vein. Dr. Kamin indicated that this would be expected after time, but that if we looked right up on the portal vein, it would still appear different from a normal portal vein, perhaps scarred and with some reduced flow. I did not realize that the vein would reopen, just thought collateral veins would develop in the belly to overcome the loss of portal vein flow. Peter still has medusa-like veins on his belly, prominent and tortuous, but the hope has always been that with time and growth he would outgrow some of the portal hypertension. There is likely a liver componenent to the portal hypertension as well, so that makes understanding the cause and detemining a solution difficult. There has been discussion many times as to whether a shunt would help reduce the portal hypertension, redirecting the blood flow so that there is just less pressure. The overriding thoughts of all doctors involved is that a shunt would not be good in Peter's case, as it could end up reducing necessary blood flow to the liver. To hear that the portal vein does appear to have flow makes me even more optimistic that the portal pressure will continue to resolve over time, as we have all hoped.
Peter has been doing well with a diet of real food during the day and unflavored formula overnight. He has not gained enough weight or muscle mass to come off a night of TPN yet though. He is down to 400 ml seven nights a week, which is down from the 750 ml that he had been put on after our last trip to Boston.
While we were in Boston, we had some spare time before his appointment so we went to Trader Joe's and found a few fun things for Peter that were low in sodium. (Thanks for your suggestion to look there, Colleen!) They make a very flavorful tortilla chip that Peter fell in love with, called Veggie and Flaxseed Tortilla Chips. He has eaten half a 12 ounce bag in two days! He really craves flavor and there are three distinctly different chip flavors in the bag. They have a long list of low-sodium products that they carry, which will be fun to explore. Unfortunately, many of Trader Joe's products state that they may contain peanuts or be processed in a facility that uses nuts/peanuts, so we need to avoid them until we talk with an allergist about whether Peter can have nuts/peanuts, since he has a brother with peanut allergy. But the chips were a great find. We picked up some Falafel Chips to try as well, no peanut/tree nut warnings there either. The plan between this visit and the next is to keep advancing nighttime feeds and try to get some more fat in during the day. Dr. Kamin told us about whole milk Greek yogurt. We have been using Chobani, which has lots of protein and Peter loves, but the highest fat yogurt they make is 2%, and usually we can only find 0%. He only eats the plain flavor because, like the formula, when sugar is added the osmolality goes up and so can the ostomy output. Even without an ostomy, people with short bowel syndrome often need to watch their sugars to keep stooling down. We found some whole milk Greek yogurt yesterday, with fat content of 15%! It looks like sour cream and is very rich. Peter felt full faster, but we'll keep working with it to see if that might add some more calories. He doesn't like to eat butter, but we are going to try to sneak that into his Gerber purees. He always adds spices to them anyway, so it should be easy to get the butter in without his detection. If we get a "clear" for trying peanut butter, that might give some healthy fat too. He does drink whole-milk Lactaid. (Yes, he eats yogurt, but the team in Boston had awhile ago recommended Lactaid instead of milk, so we've still got him on that so we don't have to re-examine whether it is milk causing a problem with motility.) He does not like avocados and gets tired of eggs after just a bite or two, but they would be good options for quality fat too. Well, enough about food.
Of interest, images of Peter's liver circulation over the last several months seem to show that his portal vein clot is no longer there and that there is some blood flow through the portal vein. Dr. Kamin indicated that this would be expected after time, but that if we looked right up on the portal vein, it would still appear different from a normal portal vein, perhaps scarred and with some reduced flow. I did not realize that the vein would reopen, just thought collateral veins would develop in the belly to overcome the loss of portal vein flow. Peter still has medusa-like veins on his belly, prominent and tortuous, but the hope has always been that with time and growth he would outgrow some of the portal hypertension. There is likely a liver componenent to the portal hypertension as well, so that makes understanding the cause and detemining a solution difficult. There has been discussion many times as to whether a shunt would help reduce the portal hypertension, redirecting the blood flow so that there is just less pressure. The overriding thoughts of all doctors involved is that a shunt would not be good in Peter's case, as it could end up reducing necessary blood flow to the liver. To hear that the portal vein does appear to have flow makes me even more optimistic that the portal pressure will continue to resolve over time, as we have all hoped.
Sunday, March 4, 2012
Lowering the salt and raising the formula.
Peter has done well with the resumed nighttime feed,s and so far has tolerated 20ml/hr, 25ml/hr, and is now at 30ml/hr. We will be talking with the Boston team in another day about taking off one night of TPN.
The sodium issue has been a bit consuming. There is sodium in almost everything, as I said in the last post. Foods that don't seem salty have surprisingly much salt in them. We have found that almost every dry cereal has quite a bit. There is a good cereal that has only 80 mg sodium though: Heart to Heart oat cereal in warm cinnamon flavor. We have come across a few other good products lower in sodium. I am settling for 100mg sodium per serving at the most, but less is much better, as his servings have been getting bigger as he is getting better at eating. There is a type of Wheat Thin called "Hint of Salt" with only 55 mg sodium per serving. Some good cookie choices have been California Lemon Cookies by Back to Nature and Barnum's Animal Crackers. Peter really wants flavor, so the lemon cookies have been a great treat for him. I thought ginger cookies would be super, but so far can't find any with low sodium content.
We've been working on getting him to eat more non-processed foods as well. He has been enjoying alphabet noodles (no added salt), which is a big step considering that regular noodles really put him off. He has also been having fun trying different types of apples. He ended up not liking the turnip, but did try it at least. Homemade pancakes were only interesting for two days. The difficulty with the non-processed foods is that it often takes him an hour to eat an ounce or two of them. He can eat purees and cracker-types of foods much easier and more quickly. Chris decided to make Peter some crackers yesterday, and Peter added garlic powder instead of salt, and Peter enjoyed them, so this may be another way to lower his salt intake. Once we can start shaving off nights of TPN, that will also help reduce his sodium intake.
The sodium issue has been a bit consuming. There is sodium in almost everything, as I said in the last post. Foods that don't seem salty have surprisingly much salt in them. We have found that almost every dry cereal has quite a bit. There is a good cereal that has only 80 mg sodium though: Heart to Heart oat cereal in warm cinnamon flavor. We have come across a few other good products lower in sodium. I am settling for 100mg sodium per serving at the most, but less is much better, as his servings have been getting bigger as he is getting better at eating. There is a type of Wheat Thin called "Hint of Salt" with only 55 mg sodium per serving. Some good cookie choices have been California Lemon Cookies by Back to Nature and Barnum's Animal Crackers. Peter really wants flavor, so the lemon cookies have been a great treat for him. I thought ginger cookies would be super, but so far can't find any with low sodium content.
We've been working on getting him to eat more non-processed foods as well. He has been enjoying alphabet noodles (no added salt), which is a big step considering that regular noodles really put him off. He has also been having fun trying different types of apples. He ended up not liking the turnip, but did try it at least. Homemade pancakes were only interesting for two days. The difficulty with the non-processed foods is that it often takes him an hour to eat an ounce or two of them. He can eat purees and cracker-types of foods much easier and more quickly. Chris decided to make Peter some crackers yesterday, and Peter added garlic powder instead of salt, and Peter enjoyed them, so this may be another way to lower his salt intake. Once we can start shaving off nights of TPN, that will also help reduce his sodium intake.
Wednesday, February 22, 2012
More updates
The last post was actually from Feb 19, even though dated the same as today, so these are new updates. We restarted formula last night, just 200 ml at 20 ml per hour. Peter will just do plain formula, no flavoring, as that will lower the osmolality of the formula and may help decrease the likelihood of diarrhea if it was related to the flavored formula he had been on. I had read that the formula (Pediasure Peptide 1.0) was on the lower side in osmolality compared to other formulas, but didn't realize that there is a considerable difference in it when choosing flavored formula versus plain. Just like in the "real world," there are added sugars and colorings in medical-grade formulas. Now the obvious question is, "Why?!" With the substantial number of people on medical-grade, prescription-only formulas, couldn't someone do a better job with the composition of them? I've tasted his strawberry formula and it is too sweet. It hides the flavor of the plain formula well, but I don't know that the sweetness is as necessary as the strawberry flavor. Then there is the bright pink color that is created with red food dye FD&C #3. For some reason plain and vanilla don't need a fancy color, but strawberry does? There are other formulas on the market, but "plain" is a difficult flavor with all of them, and some of the other formulas we've tried are too thick, come only in vanilla (a flavor that makes him vomit), or are just don't suit his needs. Maybe some entrepreneur out there will come up with better formula options, like color-free, or low-sugar not artificial. Fortunately, Peter has a G-tube, so we can give the plain formula to him now overnight and he won't have to taste it. Hopefully we'll have better luck with this lesser osmolality.
We have found that sodium is becoming a problem now that Peter wants to eat. Peter has always had problems in retaining sodium and then developing ascites in his belly from accompanying fluid retention. The best measure to prevent this is just to keep his sodium intake low. I mistakenly thought that we had some wiggle room while off formula and let him have Cheez-Its, goldfish, pretzels, etc, all loaded with salt. It only took a week of that too see his belly begin to get big. Fortunately he is responding well with extra water and taking away the salty foods, and he is losing the ascites. Unfortunately, he is only six and can't understand why I would buy him these snacks only to take them away. He actually said that to me in almost those exact words, crying profusely as he said it. It is quite a juggle with him to work on good foods when all these years we have tried to get him to eat anything, anything, just for the practice of chewing and swallowing. If he ate 12 goldfish in a day that was impressive. Now he wants 25 goldfish, and 15 animal cookies, and 20 Cheez-Its, all at one sitting, repeated three times a day. He is eating three good meals a day, with things like plain yogurt and meat, veggie, and fruit purees, but it is these snack foods which give him the practice of feeding himself and which he absolutely craves. We are starting to leave out little pieces of kiwi and apple for him to practice with new snack foods, and I'm sure he'll make the transition over to better foods, but it is hard to see him so frustrated trying to understand the concept of moderation now after trying so hard to get him to eat at all. We went on an outing to the grocery store this past weekend to pick up new foods to try. That is when we picked up the snack foods listed above, but he also picked up grapefruit and a turnip that he said he MUST try. "I don't know what a red grapefruit or a turnip tastes like, Mom. I HAVE to know what they taste like. I've never tried them before." I guess we'll go back to the store again this weekend and find some low-sodium things to eat. He picked out four kinds of cereal to eat when we were there this weekend, but they are not holding his interest like the animal cookies and the salty foods. He loves bold flavors, but bold flavors seems to have high sodium. Other short-bowel patients have shared that they crave salty, bold flavors, so Peter's cravings may be more physiologic than psychologic. I think we are going to have to get pretty creative in finding ways to give strong flavor with low sodium.
We have found that sodium is becoming a problem now that Peter wants to eat. Peter has always had problems in retaining sodium and then developing ascites in his belly from accompanying fluid retention. The best measure to prevent this is just to keep his sodium intake low. I mistakenly thought that we had some wiggle room while off formula and let him have Cheez-Its, goldfish, pretzels, etc, all loaded with salt. It only took a week of that too see his belly begin to get big. Fortunately he is responding well with extra water and taking away the salty foods, and he is losing the ascites. Unfortunately, he is only six and can't understand why I would buy him these snacks only to take them away. He actually said that to me in almost those exact words, crying profusely as he said it. It is quite a juggle with him to work on good foods when all these years we have tried to get him to eat anything, anything, just for the practice of chewing and swallowing. If he ate 12 goldfish in a day that was impressive. Now he wants 25 goldfish, and 15 animal cookies, and 20 Cheez-Its, all at one sitting, repeated three times a day. He is eating three good meals a day, with things like plain yogurt and meat, veggie, and fruit purees, but it is these snack foods which give him the practice of feeding himself and which he absolutely craves. We are starting to leave out little pieces of kiwi and apple for him to practice with new snack foods, and I'm sure he'll make the transition over to better foods, but it is hard to see him so frustrated trying to understand the concept of moderation now after trying so hard to get him to eat at all. We went on an outing to the grocery store this past weekend to pick up new foods to try. That is when we picked up the snack foods listed above, but he also picked up grapefruit and a turnip that he said he MUST try. "I don't know what a red grapefruit or a turnip tastes like, Mom. I HAVE to know what they taste like. I've never tried them before." I guess we'll go back to the store again this weekend and find some low-sodium things to eat. He picked out four kinds of cereal to eat when we were there this weekend, but they are not holding his interest like the animal cookies and the salty foods. He loves bold flavors, but bold flavors seems to have high sodium. Other short-bowel patients have shared that they crave salty, bold flavors, so Peter's cravings may be more physiologic than psychologic. I think we are going to have to get pretty creative in finding ways to give strong flavor with low sodium.
Back on TPN every night
Peter had his check-up in Boston earlier this month. Peter is now back on 7 nights of TPN and all formula was taken away, since his ostomy outputs were so high and he was so skinny when they saw him. As much as we have enjoyed the freedom of lesser nights of TPN, we agreed that it was best to just put him back on it and get a little more weight on him. His upper arms are actually skinner than his forearms now, and his bottom just looks wasted. Ironically, he seems to feel good with lesser weight. With the adding of TPN, the other decision made was to remove all formula from his diet for a while and just let him eat what he wants. It felt like a big set-back, but we were reassured by the docs that in doing all of this, watching what happens to his ostomy output now will help in the diagnosis of why he seems to be dumping out all that we put into him. Infection has been ruled out, and we are trying to determine if this was a long-lasting transient problem post antibiotic use, an issue with his formula, or if he is actually demonstrating a need for the ostomy to be taken down so he has more bowel length to work with. (That will be another high-risk surgery, so no one wants to just go ahead and do it at this point unless he shows us it is necessary.)
The results of this have been that his ostomy output has gone way, way down, and his weight is going back up. In fact, we were able to shave off some of the volume of TPN this weekend, and even though he still has it for 7 nights a week, the next step in this process will be to start shaving off one night, then two, etc.
But the silver lining of all of this is that he is hungry and wanting to eat real food now! So, we have been going up on his real food instead of using formula, a little each day, and so far his ostomy output is still down. He is really having a good time with food, pretty much grazing all day. It is such a blessing to see him want to eat instead of trying to convince him of the merits of drinking formula. I am still trying to work on the concept that cookies are more of a treat than part of a meal, but we'll get there. We'll likely have to add some formula into his diet again, but most likely we will be able to just do that at night if he is willing to keep advancing in real food during the day.
I think to many people the excitement of this real foods achievement is very abstract. I know that I would have a hard time understanding why it is exciting to see a six year old grazing on a piece of grapefruit or goldfish or tasting ranch dressing, if I had not have the experience with Peter that I have had. He is not a "picky eater," but rather a kid who has always had such a keen interest in what other people are eating, in reading and asking about different types of food, but never with an appetite to taste them. All of a sudden he is hungry and wanting to know what these things taste like. It is like a whole new world has opened up for him. As we quietly lamented the return of the TPN regime, a beautiful new dimension opened up for him!
The results of this have been that his ostomy output has gone way, way down, and his weight is going back up. In fact, we were able to shave off some of the volume of TPN this weekend, and even though he still has it for 7 nights a week, the next step in this process will be to start shaving off one night, then two, etc.
But the silver lining of all of this is that he is hungry and wanting to eat real food now! So, we have been going up on his real food instead of using formula, a little each day, and so far his ostomy output is still down. He is really having a good time with food, pretty much grazing all day. It is such a blessing to see him want to eat instead of trying to convince him of the merits of drinking formula. I am still trying to work on the concept that cookies are more of a treat than part of a meal, but we'll get there. We'll likely have to add some formula into his diet again, but most likely we will be able to just do that at night if he is willing to keep advancing in real food during the day.
I think to many people the excitement of this real foods achievement is very abstract. I know that I would have a hard time understanding why it is exciting to see a six year old grazing on a piece of grapefruit or goldfish or tasting ranch dressing, if I had not have the experience with Peter that I have had. He is not a "picky eater," but rather a kid who has always had such a keen interest in what other people are eating, in reading and asking about different types of food, but never with an appetite to taste them. All of a sudden he is hungry and wanting to know what these things taste like. It is like a whole new world has opened up for him. As we quietly lamented the return of the TPN regime, a beautiful new dimension opened up for him!
Friday, January 27, 2012
20 days later, TPN is coming back
January 6 was Peter's last night of TPN... we hoped. Tomorrow night he'll start back on it again. He has been losing weight steadily since his surgery, which was good since he was overweight on TPN and fluids, but only good up to a point. His ideal weight is likely 47 to 48 pounds, but he is now 44 1/2 pounds and decidely skinny and bony... not just thin, but frankly bony. It is normal to lose some weight when transitioning off TPN, but he is dropping too much weight too fast.
The immediately apparent issues that have complicated Peter's success off TPN are unstable daily ostomy outputs that can vary from just under 600mL/day to over 1200mL/day and then the responsive action to take away his enteral feeds and place him on Pedialyte, which has considerably fewer calories than his formula. He is now on six Imodium capsules a day, and some days it seems to help, other days it doesn't seem to do a thing. At this point it is unclear whether the formula he is on needs to be substituted out for another one, or whether this is an issue with his bowel. As his ostomy does slow down considerably with Pedialyte, the output amount is likely due to the formula. We will be looking further into all of this over the next couple of weeks, perhaps going onto a different formula or substituting out some of the formula for something else.
People have asked why he is on formula instead of real food. The typical protocol in coming off TPN is to be on formula, as formula is more nutrient and calorie dense than real food, so a person can take in less formula than food. This gives the bowel time to gradually adapt to a more normal intestinal functioning. Peter does eat some real food, so it is possible we might have success feeding him more real food in place of some of his formula, but he frankly doesn't eat enough to sustain without formula or TPN. Unfortunately, with the reinstitution of TPN, we also know his appetite will go down. It is a difficult catch to be on TPN - it can prevent or treat malnutrition, but it can also reduce the desire to eat. Everyone has held out as long as possible in putting him back on TPN, but at this point we all agree that he needs to regain some of the lost weight and definitely not lose any more. The goal is to still get back off TPN as soon as possible though.
Peter is disappointed that he needs to go back on TPN, as are we, but he is only going to be on three nights a week and will likely go down to two nights a week once he gains a little of this lost weight back. We are, however, happy that he will get back on Omegaven again, as he had to stop Omegaven once he stopped TPN. We had tried enteral fish oil after he ended Omegaven and that did not fare well with his ostomy output, so Peter has not had the benefits of those great omega 3 fatty acids in the 20 days he's been off TPN. We had a great break from the tedium of TPN set-up, but honestly, the last two weeks have been rather harried in keeping up with the dealings of his fluctuating high ostomy output: calculations, phone calls, emails, and boluses of Pedialyte, sometimes every half hour, in an effort to keep him off TPN. Resuming TPN may be the less complicated option at this point.
We decided to give Peter a "bonus" to restarting TPN by telling him we will have another celebration when he comes back off TPN. He is already looking forward to it. "Will I get to open more presents?" he asked tonight. I just love the thought process of a six year old!
The immediately apparent issues that have complicated Peter's success off TPN are unstable daily ostomy outputs that can vary from just under 600mL/day to over 1200mL/day and then the responsive action to take away his enteral feeds and place him on Pedialyte, which has considerably fewer calories than his formula. He is now on six Imodium capsules a day, and some days it seems to help, other days it doesn't seem to do a thing. At this point it is unclear whether the formula he is on needs to be substituted out for another one, or whether this is an issue with his bowel. As his ostomy does slow down considerably with Pedialyte, the output amount is likely due to the formula. We will be looking further into all of this over the next couple of weeks, perhaps going onto a different formula or substituting out some of the formula for something else.
People have asked why he is on formula instead of real food. The typical protocol in coming off TPN is to be on formula, as formula is more nutrient and calorie dense than real food, so a person can take in less formula than food. This gives the bowel time to gradually adapt to a more normal intestinal functioning. Peter does eat some real food, so it is possible we might have success feeding him more real food in place of some of his formula, but he frankly doesn't eat enough to sustain without formula or TPN. Unfortunately, with the reinstitution of TPN, we also know his appetite will go down. It is a difficult catch to be on TPN - it can prevent or treat malnutrition, but it can also reduce the desire to eat. Everyone has held out as long as possible in putting him back on TPN, but at this point we all agree that he needs to regain some of the lost weight and definitely not lose any more. The goal is to still get back off TPN as soon as possible though.
Peter is disappointed that he needs to go back on TPN, as are we, but he is only going to be on three nights a week and will likely go down to two nights a week once he gains a little of this lost weight back. We are, however, happy that he will get back on Omegaven again, as he had to stop Omegaven once he stopped TPN. We had tried enteral fish oil after he ended Omegaven and that did not fare well with his ostomy output, so Peter has not had the benefits of those great omega 3 fatty acids in the 20 days he's been off TPN. We had a great break from the tedium of TPN set-up, but honestly, the last two weeks have been rather harried in keeping up with the dealings of his fluctuating high ostomy output: calculations, phone calls, emails, and boluses of Pedialyte, sometimes every half hour, in an effort to keep him off TPN. Resuming TPN may be the less complicated option at this point.
We decided to give Peter a "bonus" to restarting TPN by telling him we will have another celebration when he comes back off TPN. He is already looking forward to it. "Will I get to open more presents?" he asked tonight. I just love the thought process of a six year old!
Monday, January 9, 2012
A little video of Peter's party
We tried to take some video of Peter's little party for coming off TPN. Most of what was captured is mayhem, but this one at least captures the excitement that he and his siblings have about this special milestone.
The significance of the watusi gift is only this - Peter has a great appreciation for animals and he has a huge collection of plastic animals at this point. After he got home from his long hospital stay in Sept-Oct, we took him to the zoo, where he saw a watusi. It was an impressive animal! He has been wanting a plastic watusi since that time, but there is just no plastic watusi to be found. The day of his party, his sister came across this animal, which actually is a Texas Longhorn, but awfully close in appearance to a watusi, and felt that if we cut the tag off, Peter might just be convinced it is indeed his long sought-after watusi. So far, he is convinced that it is!
Peter is OFF TPN - hooray!
The big news is that Peter is now officially off TPN! In less than four months after his surgery in September, he has gone from 7 nights per week of TPN dependency to zero dependency on TPN! He is taking in almost 1300 ml of formula daily, along with 120 to 200 ml of yogurt and pureed baby foods, and about 120 to 250 of water a day. A great thing with Peter being six years old is that he has been able to understand why I am feeding him formula several times a day even though he doesn't care to drink it. He has been able to decide that he wants to be free from TPN and to understand that for him to accomplish that goal, he needs to drink the formula. We had a little party for him to celebrate his end of TPN and he was so excited. He decided that he wanted sugar cookies (reduced in sugar for him) and that they were to be shaped cookies, not drop cookies, and he wanted to help make them. He also wanted strawberries for his party. We then added some surprises for him with crepe paper streamers, a banner, a candle to blow out, and some unexpected gifts and cards. He had a wonderful time and the celebration gave him some well-deserved recognition for the effort he has put into coming off TPN.
Peter has been on TPN since April 2006. The most he was ever able to come off was three nights a week for a few months, and then the fistula started putting out huge volumes of output and he had to go back to 7 nights per week of TPN. It almost doesn't feel real that he is actually off TPN since we have been using it for so many years. I am posting some photos of what his nightly set-up on TPN was. We will miss the great health benefits that we know Omegaven gave to Peter, but will certainly not miss the twice-per-night changing out of the old Omegaven bottle for the new one and resetting of the pump. His nightly set-up now is just a little IV push medication, setting up his tube feedings, and hooking up his ostomy to a drainage bag. He, and we, are enjoying the freedom that comes with being off TPN.
This was Peter's nightly set-up with TPN, Omegaven, and enteral feeds. The tiny little white and teal pump and pink bag behind it are all that will be remaining on his IV pole, as they delivery his near-700 milliliters of enteral feedings overnight. The ostomy drainage bag is still there too, but hanging off the bottom of his bed. That will go away whenever the ileostomy gets surgically reversed.
Hopefully this is goodbye to TPN for good, but if not, we'll enjoy the freedom while it lasts!
Peter has been on TPN since April 2006. The most he was ever able to come off was three nights a week for a few months, and then the fistula started putting out huge volumes of output and he had to go back to 7 nights per week of TPN. It almost doesn't feel real that he is actually off TPN since we have been using it for so many years. I am posting some photos of what his nightly set-up on TPN was. We will miss the great health benefits that we know Omegaven gave to Peter, but will certainly not miss the twice-per-night changing out of the old Omegaven bottle for the new one and resetting of the pump. His nightly set-up now is just a little IV push medication, setting up his tube feedings, and hooking up his ostomy to a drainage bag. He, and we, are enjoying the freedom that comes with being off TPN.
Supplies needed to set up TPN and Omegaven. I forgot to include the 50mL bag of saline which we hang at 6am to "chase" the remainder of Omegaven down the IV tubing. Below are photos of what the set-up looks like after injecting the multivitamins and connecting the tubes.
Omegaven
This yellow bag is what the TPN looks like after the multivitamins have been added. This yellow bag and little pump are what is inside the maroon bag below.
Hopefully this is goodbye to TPN for good, but if not, we'll enjoy the freedom while it lasts!
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