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.

Back in the saddle

Peter seems to have completely pulled out of his obstructive type of episode. He is no longer needing to have his G tube open to drainage, and he is tolerating his Elecare again. He is appropriately asking for "milk" (Elecare) and is taking his goatmilk kefir again, and things seem to be getting down to the ileostomy again, looking digested. The duodenostomy bag has been replaced with a piece of gauze that is being changed two times a day, with less than 2 mLs of drainage per dressing. Peter is back to himself and we are ever grateful once again! We are starting the Elecare slowly though... 20 mL per feed today and we will gently work our way back up to the 55 per feed where we left off, and hopefully go on to even more feeds. We will avoid lamb for now though. Anything thicker than a drinkable fruit puree is going to be a "no" for now, nutritious or not.

No feeds for now

We don't know if it was the Gerber stage 1 lamb or the change from a flat ostomy dressing to a convex one, or just something bound to occur, but something has changed with Peter and things are not really flowing through now. He started backing up and out his gastrostomy site more and more, and then vomiting, all around the time we finished up our three day trial of one tiny jar of baby lamb. We eventually had to put the old MIC gastrostomy tube in with a foley attached and just leave his gastrostomy to drainage full time. We still can't keep the tube closed off even for a few hours without gastric contents and bile leaking out around the tube. With all of this, the duodenostomy now puts out nothing at all.

His labs do not suggest infection and temp is fine and generally he acts fine. His electrolytes got slightly out of kilter with the extra drainage from the stomach and he is now on IV normal saline for 12 hours at night to balance that. The electrolyte imbalance may be why he was slightly off in bahavior the last few days.

It seems that a little of his body fluid passes through from the stomach and works its way to the ileo, but we are not giving him any Elecare or kefir now and definitely no baby foods. He is getting water for drink when he wants anything, but it mostly all comes back out the open gastrostomy tube. Right now we are just waiting to see what comes of this episode. It has been going on now a little over a week!

Stopping feeds and having to reattach another drainage tube is of course disheartening. However, we are extremely grateful that Peter is still home and that he is not in distress. Admittedly too, it is nice not having the problematic duodenostomy to deal with, and the G tube leaks very little around the dressing at the moment. How's that for a silver lining?? Hopefully the next post will be about the resuming of feeds... soon.

Still working on getting the Boston Commons photo up.