The Waiting Game

We are back from our trip to Boston with no distressing phone calls on the drive home. The visit was pretty uneventful and probably one of the shortest times spent in clinic. Now begins the waiting game. As the respiratory virus season approaches, we know for sure that Juliana will not be having surgery. Since she is still on oxygen her surgeon has decided against reanostomosis till at least after the winter. I already knew that plans for surgery were heading in this direction. Our next clinic visit is in two months which is the longest we will have stayed away from a hospital since Juliana's birth.

Our goals still remain the same for now, stay out of the hospital, continue to grow and avoid infection at all costs.

Pictures!!!

Off the O2 for a moment... she pulled her tube so Dad took the opportunity to get a pic with a tube/ tape free face

Juliana has to have her own spoon when she eats or we end up fighting. There's no food on this spoon but it's still great for chewing on.

Eating is hard work....

She is actually enjoying sitting in the Bumbo.

She loves her music player... also great to chew on.

Short Gut at Home

Learning to live with short gut at home has been quite an adventure. I am happy to say that after six months at home I have become pretty efficient at handling supplies and routines. It did take some time to get used to everything. Juliana is on oxygen and also receives TPN/ Omegaven through a Brovaic line. She also has an NG tube for feeding and two ostomies for pooping.

Organization is the one tool that makes all of this possible at home. We have tons of supplies for everything related to Juliana. I have a dressor set up in the living room with all of Juliana's medical supplies. Keeping everything in one place helps me to stay on top of all our supply needs.

I set up daily bags of the basic supplies we need each day to set up her TPN/ Omegaven. I have found this very helpful for get things set up in a hurry. I can get TPN/Omegaven setup and hooked up in about 15 minutes.

Set up consists of adding the vitamins to the TPN, mix well and then priming (replacing the air in the tube with TPN) the tubing attached.

We then spike the Omegaven and prime the tubing for this as well. After setting up the "Y" extension and priming with saline we connect it all together and we are now ready to hook her up.

Since Omegaven comes in a nice glass bottle not really made for travel, we put Juliana to bed first and hook everything up upstairs. Typically she stays in her crib till the Omegaven is done and then we bring her back downstairs for the day. Her feeding pump and TPN pump fit nicely into on backpack. We use the bag sent for use with the feeding pump. The rear compartment is meant to hold larger feeding bags, but we use it for TPN. Having both in one bag makes travel in and out of the house much easier.

This is the feeding pump in the front compartment and her TPN and pump in the rear.

Since Juliana has become very interested in all her tubing we have to hide everything from her. The blanket trick has been working pretty well. We keep everything under the blanket and then tucked behind another blanket rolled up along the side of the crib. By the way this is Juliana about two minutes after being put in her crib (if only it was this easy to put her big brother to bed)

She is also on oxygen 24/7. We have on big liquid O2 tank in the living room and we use a 50' extender. With the extra length she can go any where in the house including the outside porch. We have two monitors, one for upstairs and one for downstairs. The cable is long enough that I can have one on my night stand at night. The alarm will wake us up and not the kids. When traveling we have refillable portable tanks, but I also make sure to keep a back up cylinder in the car. Since we travel pretty far from home at least once a month, I like to have a security blanket with me.

Over time I have discovered that being prepared is number one when it comes to ostomy care at home and on the go. I try to always make sure that we have the supplies we need ready to go at a moments notice (sometimes all you get is a moment). Right now ostomy bag changes are a daily event and we are still trying out different bags to see which will give us the most wear time. I have been successful with minimizing the amount of time it takes to change an ostomy bag. I keep a few sets of bags and barrier rings cut and ready to stick for a quick change at all times. This has become very important now that Juliana is maturing and moving all over the place. If it takes too long to change her bag Juliana will surely make a poopy mess all over the place and with a Broviac line that is prone to infection that is the last thing I want to happen.

We do have a lot on our plate when it comes to Juliana and I have to remind myself of that sometimes. Not every day is perfect but we do the best we can to make the most of it.

Tomorrow we head up to Boston for our monthly clinic. My fingers are crossed that all will go well. Since surgery is tentatively postpone till at least next spring, our goal from now until then is to stay hospital free. So many prayers will be needed.