PS

We met another child with TPN (and Omegaven), G tube, short gut while we were in clinic. There is some really interesting piece of news that I have to share in case there is anyone else out there who is baffled by G tube back-ups. This child, Charlie, has to have his G tube vented every morning to let out air and residual gastric contents before being hooked up to feeds or else he will vomit. It is necessary for him that this be done every day. Here I thought that the occasional gastric back-ups that we have with Peter were abnormal and showing us that we were overstressing the bowel. I would cut way back on the feeds or even stop the feeds for a day or two and gradually begin to build him back up in feeds again. (Peter takes his feeds by mouth, but we would still just stop offering anything other than some water). Apparently needing to put the G tube to drainage for a while can be a normal event, and once that drainage is out feeds can be resumed as normal. I wish I had known that before. I am glad to have that understanding now.

By the way, the child I am referring to is the very first child that was put on Omegaven in hopes of living until a liver transplant was found. Omegaven not only decreased the liver damage but quickly got him off the transplant list. He looks wonderful!

Back from Boston, Halloween, Birthday

Opening gifts all by myself this year!


Trick or treat!


Boston Commons... this vaguely looks a little like the cover on
one of the Beatles albums



I am getting behind in the updates. It has been busy around here as you can see by the title of this entry.

We went up to Boston a few weeks ago for another two month check up. Peter was in good form and showed off his increasing strength and speaking skills to everyone who saw him. EVERYONE at CAIR clinic commented on how very good he looks and how strong he is getting. The weight gain and growth are a little disappointing when we look at them on a graph and compare them with what he should be doing. He is behind on the charts as we expected, but he is not following the growth curve properly and that may be an issue of concern. We will investigate that further after the next check up if need be, but meanwhile his elecare is advancing and if the gut is working, that should help with the nutrition.

Peter's results are back from his methionine breath test that he took in June. He has had 4 of these tests now. The first 3 showed declining liver function. They were done in Jan 2007, Aug 2007 when we listed him for transplant, and sometime around Jan 2008. The one from June 2008 shows the function of a normal liver!! This is still a test that is in testing stages itself, with the hopes that it will be a non-invasive test to replace liver biopsy. However, the doctor who runs this test was ecstatic about the results as they certainly seem to correlate with his other labs and how well he is acting.

Then Halloween was here. Peter dressed up and liked it!! I really had my doubts that he would agree to an outfit, but we found one he liked and he wore it, and even the hat that accompanies it. He had a wonderful time outside in the dark. We used the flashlight and talked about the darkness. To try to keep him away from germs he didn't go door to door with the other kids but he didn't care about that anyway. We were out for over an hour, but when we came back to the house he was unhappy because he wanted to go out some more. He finally settled for playing ball in the house in his costume before he had to go to bed.

Peter's birthday is the day after Halloween, All Saints' Day. He is officially three years old now. Just like Halloween, he was much more involved in the holiday this year compared to last year. He tore into the cards and gifts and seemed to understand and enjoy the fact that it was his birthday. He has seen other people celebrate birthdays throughout the year and now it was his turn. We had to light the candles twice for him because he enjoyed them so much. Sadly, no cake for him yet, but like the Halloween candy, he didn't care that we were eating it and he wasn't. Instead, he licked the apple slices and gluten-free pretzels and crackers that were on his tray and was content with that... especially when daddy put the candles in the apples and relit them!

Good times

We are back up to 55mL elecare per feed again! Peter's activity level is fabulous. He is taking little amounts of stage 1 baby fruits now as well. The key to getting him to willingly take the fruit by mouth was to CHILL it. We should have guessed, seeing as he will only take his elecare when it is cold.

We will be taking Peter to Boston in a few days. We hope to test his outputs to see how well his bowel is working. He has been having interesting labs the last two months. A month ago his CRP began to rise again. The CRP was 15 a month ago (up from less than 8 which is "normal" with the laboratory we use), and last week it hit 40. The mystery CRP rise is similar to what he did last spring, with a rise that has no accompanying symptoms. We don't think there is infection, so we will just watch him. His BUN (kidney lab) has been going up, so the doctors may have the lab examine his outputs to see if there is some tweaking necessary in the TPN to make the kidneys happier. Meanwhile, his bleeding times have improved again and his liver function tests are looking marvelous. Peter himself is behaving well, and that is the main thing. He is happy and active, and oblivious to the ups and downs of his labs this last month. Now, if he can get through his visit to Boston and back and have no funny incidents, that will be just super!

Peter's third birthday is coming up November 1 - All Saints' Day!!

new photos

Peter went to the park for physical therapy today. We went with a canister of Germ-X wipes to wipe down the handrails and put him to the task of trying to climb stairs and the ladder. The reward was to walk across the bridge at the top of the playset and to slide down the various slides. He did quite well for his first real attempts on a playground set!!

Reply to Suz

Hi Suz. I posted your comment with the last post, but have no way to respond to you other than this blog. I would be happy to share the things I have learned with you. You can email me directly at bambinosfour@yahoo.com and I can email back and forth with you. One good resource is the blog of Ellie Brogan, found at http://eleanorbrogan.blogspot.com. Her story is encouraging and her parents have links to several helpful resources on the internet, including other parents of children with short-gut, and informative sites with more tips.

As far as room set-up, when we came home from the hospital, we put Peter's crib in the living room and decided to sleep on a pull-out sofa bed in the room with him. We still have this set-up, as it has been the most efficient for us. Lugging all of his equipment up and down stairs each day would have been too difficult. It was and is still important to us to keep him in the thick of the activity in the house to keep him really stimulated. A year in the hospital (plus the additional ins and outs afterwards) left Peter fairly behind physically and socially. It seemed to be helpful for us to bring a stimulating environment to him as much as possible. He now is toddling around the house and exploring on his own, but it took a year and a half to get him to that point. Now we still stay in the living room with him because his supplies are all there if we need them, and because we can keep an eye on him easily when he goes to bed. We can look at him and know if he is fussing b/c he is cranky and tired or if there is a problem such as being tangled up.

Essentially our living room has become Peter's care room. We bought three plastic units to store his supplies. One has IV supplies, one has dressings for the ostomies, and one has toys but we use the surface for the diaper scale. The plastic is nice b/c it can be easily cleaned with clorox wipes. Under the crib we have placed mats of sturdy plastic carpet protector (the kind in a roll you find at the hardware store). It is very tacky but practical to keep Omegaven off the rug (just wipe off your spills) and to protect the rug from occasional foley bag drips when we drain the foley bags in the morning. One day we will regain our living room for its intended purpose, but for now it is Peter's room.

Also, we bought a small refrigerator to store Peter's IV meds and TPN. This keeps the meds away from food items that may contaminate his supplies. Many people do recommend this for storage of refrigerated IV meds.

Peter does not have a broviac. He has a PICC line. Ellie's site has other families with broviacs too. Broviacs are more common in the pediatric community than PICC lines. I am not familiar with the antibiotic regimen you mentioned, but someone else may be.

We change the tubing on the Omegaven daily. Omegaven runs overnight for 12 hours and comes down in the morning, tubing and all. In the evening, we use a Y extension set to connect it to the TPN line, with a cap on both ends of the Y extension versus having the tubing connected but not running. When he finishes the Omegaven we can take everything down to the cap (the same kind you use to cover the end of the central line) of the Y extension and let the TPN finish up with the portable pump. The pharmacist at our infusion company helped us work up this set-up. We have found that it is really helpful to get to know the pharmacist who makes the TPN for home use. The home infusion pharmacist can be instrumental in helping you get comfortable with the supplies you are using and to bring in new ones if you find you need something different.

Yahoo has some groups too. I haven't been to them yet. I just found out about them on the short-gut wiki which is put together by other parents of short-gut kids. That wiki site is http://grey.colorado.edu/shortgut/index.php/Main_Page. It is another excellent site to visit, but I don't know if you can ask questions there. The yahoo groups should provide you with a place to ask questions. You can also email me with additional questions if you would like.

Congratulations on getting home after a year! The initial transition can be hard, but it really does get easier once you adjust to life outside of the hospital again and once you get into a rhythm of your child's care.