Home, day 2

Well, we are getting settled into a routine. Having to do all the different drugs at various times, all through her feeding tube since she no longer has an IV and cannot take anything orally yet, has been a bit challenging.  However, we have come up with a system now including tracking everything so we can make sure it is all going right.  I have to even give her water through the tube since she cannot drink yet.  Last night was a bit challenging since we had just started and were tired from the long day and everything else, but we managed to get through it OK. We even managed to get some sleep. Her main "problem" is having to go to the bathroom as much as she does during the night.  She does not really need any help from me, but it does make it easier if I help her getting up and down and the last thing we want is to open up something, so we continue to work as a team. I am sure that will get better as her system gets used to "eating" this way and she starts taking less of the various medications.  Two are only for 5 days, so there is an end for that and a couple are for pain which is already getting a little better.

So far today, she has only used Tylenol and the Lidocaine Patch and her pain has not been too bad.  We will see tonight if she can manage in the hopes it reduces bathroom trips and any other issues.

We talked to the doctors office about the followup test and visit and turns out our timing is bad.  The surgeon is going to be out for a long (6 day) weekend starting next Thursday which was about when they wanted her to come back for the test and visit.  The scheduler is trying to get her in to the hospital for the test on Tuesday of next week, but not sure if that will happen and if it does, we may not know until next week. If she has to wait an extra week, it has the advantage giving everything longer to heal and seal up, but it is also longer stuck with only the feeding tube.  Barbara is ready to start trying to eat now and not in two weeks.  But, we will handle whatever happens.

The feeding is the most inconvenient as she is tied to the pole for 16 hours. At least that is better than in the hospital where she was tied to it for 24 hours a day.  We are trying to work out a schedule where she starts around 6pm and then would be done around 10 the next morning. The period can be cut short a little, but then that cuts out how many calories she is getting as well as how much water.  They want the full 1680 calories or close to help with the healing since her body needs more calories as it heals.  Once she starts liquids and then even soft foods, they may keep her on the feeding tube some to supplement the amount of calories she is getting at least until the healing is done.  One of the problems you face without a stomach, even if you can eat most foods, is taking in enough calories since you can only eat small amounts at a time.

As far as the next steps are concerned, the second test looking to see if the leak is sealed is the most important right now and then whatever follows depending on what they find.  I believe we also have an appointment with her Oncologist on 8/11, so we should find out what he is thinking about additional Chemo at that time.  With her healing slower than expected, he will likely want to wait a little before starting anything new, but who knows.

The main thing right now is to just wait, keep up the medications and feeding and healing.  We will face whatever comes next when we know what it is.

Thanks again for everyones thoughts and prayers.

Wayne