Hi everyone,

I've been promising an update for awhile now, so thought I'd better soon get to it. Heather was supposed to come home last week, but she had a round of chemo on Wed. and the nausea hit her really hard. If we had a shorter drive home, she might have. But a 40 min. drive is too much when your stomach turns at the slightest movement. Even Zofran couldn't control it completely.

Anyway, she is finally scheduled to come home tomorrow. It has been quite an undertaking to get her home care coordinated. One of her oncologists said they don't normally send people in her condition home, but since her sister and I are with her 24/7 and do most of her care anyway, they felt we could handle it. She will have nurses coming in every day for awhile to help and to monitor the situation. She would probably have come home Monday, but it was delayed so she could get another tube placed. Her 3rd one!!! A "J" tube this time. It bypasses the stomach and goes directly into the jejunem, part of the small intestine.

Chemo treatments will be stretched out to once every 2 weeks and we will take her to the oncologists' office for those. She is still weak, but we have had her up walking the length of the hall and back. Pretty good, considering that the only moving she did for several weeks was to get up just enough to use the bedside commode.

She still has a very long road to recovery and there are some long term issues to deal with. The fistula on the side of her neck must connect directly to her throat, because when she had a swallowing test, everything she swallowed poured out the fistula. So she won't be able to take any food or drink (except water) orally for a long time. The fistula can be fixed surgically, but not until the tumors are gone. She also might have surgery to correct her spine this summer.

If bringing her home is successful, I will have a little more time and would be glad to answer any questions about her condition. I know some of this stuff, like the "J" tube, is not something most people would be familiar with. I know it was new to me.

We are very thankful that Heather is improving. Every extra day she has with us is precious. And the saying that there is always someone worse off than you is so true. Last week, a beautiful, kind and intelligent 16 year old girl in our area lost her battle with brain cancer. Such a terrible tragedy. Everyone, please try to be thankful for the time you have.

Rainbows & hugs,
Rosie

Rosie, thank you for the update. I have a round of hugs for you and yor family.

Your last sentence says it all.

Rosie, Thanks so much for the update on Heather. I'm glad to hear that she will finally be coming home soon - where I hope this will help speed up her recovery. My prayers are with you that she continues to make progress, and will get better each and every day. God bless.

Hi all,

I am so bummed out. I just got a call from Heather's sister at the hospital. It looks like Heather won't be coming home today after all. She woke up this morning with a sharp pain in the right side of her abdomen, approximately where the "J" tube was placed. She has increased swelling in her face. And now her left arm is also swollen! They are going to do some ultrasounds today to try to determine the cause. I'll keep you posted as time permits.

Rosie

Hi, Hope this continues to go well even with delay. Heather is in my prayers every night, right there with my family and friends who are having problems.Take care of yourself too.

Rosie
Thanks for th update. My thoughts and prayers are with you all.Diane

Hi again,

OK, it looks like Heather might be coming home tomorrow. The abdominal pain was probably because they didn't hook up a drainage bag after placing the new J-tube. She had a lot of residual fluid in her stomach which caused her quite a bit of discomfort. She still has some pain, but according to an ultrasound, everything is fine. If it doesn't clear up in a few days, we will have a different doctor check it.

The swelling in her arm is being caused by a small blood clot above her lung at the end of her PICC line. They are going to put a new PICC in her other arm and take this one out. Supposedly, when they pull the line out, the clot will break up and dissolve. They say this clot will not go to her lung. Only clots from the lower extremities travel to the lungs, not upper body clots. She will start taking lovenox again to prevent further clots.

They are putting her back on steroids for the swelling in her face. It is on her left side which is where most of the cancer is. Between the cancer, the chemo and the infection with the fistula, it just periodically swells. I will be keeping a close watch on it at home.

Rainbows & hugs,
Rosie

Hello,

Heather did come home on Thursday. The trip really wore her out and she slept most of the first couple days. We are busy trying to find space for and organize all the supplies. My living room looks like a hospital supply company, boxes and boxes full of syringes, meds, gauze pads, dressing and trach cleaning kits, pumps, tubing, saline flushes, etc., etc., etc. We are also learning how to use the morphine and TPN pumps, and how to give shots because the Lovenox can't be given IV.

So far, we have only had one major problem. Her brand new PICC line clogs really easily. It even gave the nurses at the hospital trouble on the first day it was put in. I had to call the home care nurse at 10 PM last night. What a trip! These nurses are not allowed to keep the anti-clogging agent on hand. She had to call the doc and get an order, then drive to the Home Infusion Pharmacy to pick it up ( a 1/2 hr drive), drive back, inject it in the line, then wait 1/2 hr to see if it worked. From the time I made the call for help, it took over 2 1/2 hrs til she got the line working. Thank god it worked because if it hadn't, Heather would be heading back to the hospital Monday for a new PICC line! We now double and triple flush the line before and after each use. At least it happened while the nurses were still doing the stuff. I would have felt terrible if it had been my fault. I guess Heather just got a fussy line. But what else isn't new!?! Nothing ever goes right the first time for her!!! She already had a Hickman that had to be removed because it leaked. This is her 2nd PICC line. She's on her 3rd feeding tube!

There is a bit of good news, though. The 3rd feeding tube, the J-tube, seems to be working. We have been giving meds through it just fine and have even been able to increase the amount of food given. Of course, we only started her at 20cc every 6 hours. That's only 4 tsps!!! It's hard to imagine that her stomach couldn't handle that tiny bit of food, but it couldn't. But the J-tube bypasses the stomach and goes directly into the small intestine. Too bad they didn't think of doing this several weeks ago. It could have made things so much easier for Heather. Oh well, at least it seems to be working now. Now I'm just hoping that the chemo treatment on Wed. goes well. Catch you all later!

Rainbows & hugs,
Rosie

Rosie,

Thank you for the Heather updates. You know you all are in our thoughts and prayers. Glad she is home now. That has to lessen some of the stress on her and the rest of the family.

Keep us posted and thanks for thinking of us, when you have much more importatnt things going on.

Dinah

Rosie, I have had several PICC lines, the first one ran well , the second clogged, I went to my local hospital which is only ten minutes away and the IV nurse there took care of it. My hospital called and made the arrangements for that. The Iv gals say the new prepared syringes only have 3 cc of Heprin and the saline the same.They think 5cc works better. I had to measure the Heprin myself from a bottle and did 5cc for the first PICC line and all was well even though you had to watch for air bubbles more and it was more of a pain to do. I ran antibiotics thru ever four hours. I stayed up late at nite and my husband did the morning one. I would sleep thru that one. If you are using 3 and you still have trouble ask about 5, I used for a week ,just used the prepared syringe and stopped second when I had flushed with 5. They have to order you more supplies, but if it helps??? Glad she got home!