Ninth Day at Home, cont'd

OK

The Dr. MacGillivary's resident doctors have been here, and they were pleased with the blood work, and therefore don't think Anne was dehydrated or under nourished. Even so, we'll stay here until the fluid bag is empty.

They don't know why Anne's blood pressure was low this morning however. They guess it was due to doing too much in the hot sun. Anne was only outside for 5-10 minutes tho, so I think Anne's sickness this morning is mysterious, and I do think she was dehydrated to some extent. Maybe not under nourished tho, because the blood tests would have indicated that.

They are going to send us home with a new script, for Reglan. It is something that will move matter thru Anne's intestines faster. This may alleviate the belly pain Anne has been feeling this past week.

The doctors have set our expectations a little lower going forward too. Here we were expecting Anne to be a bit better every day, and to start flying around soon. They told us that isn't completely out of line, but that Anne may take a couple of months to get better, and to fully expect a lousy day occasionally.

So,,, shortly we'll be out of here, and back on the way home once again. When Anne is allowed soft foods again they said we should avoid fruit for awhile. No more single servings of applesauce or pears. They also want us to increase the amount of tube feeding again, and we'll get specific directions on how much how fast. She was also advised to try increasing the angle of her sleeping incline, and to do more walking than she has been doing.

Thanks for reading all, and thank you for your prayers and well wishes for Anne.

PS The residents said that in six months Anne will be eating and drinking just about anything she wants, just like before. We weren't too sure what to expect with that, what with no esophagus and all. They said in six months Anne won't even know she had surgery. I hope they are right !!
t

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.