Ninth Day at Home, back to the ER, Fri 6/18, 3pm

Hello everybody,

It has been a tough week at home for Anne. She has had several things go wrong, and just hasn't been able to bounce back as she would have liked. Here's an abreviated list of things that have happened to Anne since she got home.

As it turned out, she wasn't able to tolerate any soft foods, so on Tuesday (or was it Weds?) she was put back on clear liquids only, and the rate on her tube feeding was reduced from 60 to 30. So, instead of having 3 cans of food via tube (in 12 hours overnight) she has only been getting 1 1/2 cans.

Anne had some periods of belly pain this week. She has had to grin and bear it, or sit on the toilet for some time to get rid of it.

She sleeps on the incline pretty well, but wakes up to a cough, which develops into vomitting which empties her stomach every morning (except for Weds and Fri). She has vomitted once, sometimes twice daily since coming home.

Anne's stomach incision developed and ooozed puss from a small hole between where 2 of the staples were removed(she may have pulled it apart when vomitting. That is now being dressed and watched daily. The 'wound lady' says it shouldn't develop into a problem (knock on wood). It's a very small hole, not deep, and looks good now.

Her neck incision, healing from the inside out, is dressed by a visiting nurse everyday, and looks good. With this tho, the skin on her neck around the incision is irritated and sore due to the tape being applied and removed every day. We opted to use 'montgomery straps' to hold the dressing in place the past 2 days which has been a blessing. With these, tape stays on, and doesn't have to be put on and pulled off each day. That was a great suggestion from a friend, and very helpful.

Anne's bowell movements have been soft or liquid since coming home.

Since coming home Anne has not been able to take a good deep breath due to what we think is a pulled muscle in her back, probably due to the vomitting. That is why we spent last Saturday night in the ER. We wonder if there isn't a broken rib in her back, but it didn't show on the chest xray done in the ER. She winces in pain when she tried a deep breath.

Her shoulder, which was sore from manuvering around in the hospital bed, is feeling better now.

She has had a sore throat from vomitting.

Did I mention that we are back in the ER right now????

Anne had 3 nurses scheduled to come to the house today, one for the neck dressing, one for PT, and one for O(occupational)T. When the 'wound lady' came at 8:45 Anne was doing well. Then, as Anne walked around in the yard (10am) with Amber (PT) Anne began feeling weak and sick. Anne's BP was 88 over 60, and her oxygen level was down to 89. We called Dr. MacGillivrays nurse Jenn on the phone (as we have each day this week) and we determined that Anne was probably dehydrated and possibly undernourished. Keep in mind, she has had reduced tube feeding overnight for the past 2-3 nights, and been reduced again to clear liquids only (popsicles, chicken stock, jello, and water) during the day for the past 2-3 days. She was initially told to sip the clears slowly so as not to cough/vommit, and today they said she should have been told to 'push' them so as to drink a gallon a day. Those specific orders weren't clearly given the other day.

So now we're in the ER being hydrated. Anne is sleeping with the IV running, and I look forward to her waking and feeling alot better shortly.

The concern is that she cannot seem to keep any nutrition down, and that she could not tollerate soft food. We need to get past that. The art of eating without an esophagus is something Anne hasn't mastered yet, but she will. We don't know whether she'll be released from here today, or possibly be admitted again. Anne will be disappointed if she is admitted again and I don't look forward to that news, however, we need to do the right thing to get this situation turned around so Anne can recover. She is in good hands. More later...thanks for reading and thanks for your prayers.