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#1863 11-25-2003 09:16 AM
Joined: Oct 2002
Posts: 546
rosie Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2002
Posts: 546
Hi everyone,

First, I'd like to wish you all a Happy Thanksgiving!
Now, down to business. I have some of Heather's medical supplies left. I donated most of the stuff to the Visiting Nurse and Hospice teams, but I missed some of it. Thought I'd see if anyone here can use it before I give it all to them. Most of it is still sealed in individual bags. I have a box of feeding bags. They have the cassette for hooking up to a pump, but they can also be used with simple gravity feed. They are 1000 ml bags made by Ross. I also have some tracheostomy supplies left. Mostly suction catheter kits, but also a few masks for people who are using a mist machine to supply moisture. They snap around the neck and direct the mist into the trach hole. Also have lots of the tubing left for the mist machine. Have a few of the soft blue Posey brand collars (ties) to hold the trach in place and one of the white Pepper brand collars.

I have a couple air mattresses. We used these on the hospital bed, but they could be used on any bed. They are meant to be used with a continuous flow air pump, but I would think you could pump one up with a regular pump and then seal it. You would have to improvise a seal though, because they don't come with one. These are very helpful for someone who is confined to bed for long periods. I have 2 that are brand new (long story, but suffice it to say there was lots of miscommunication) and one that was used only briefly, because after Heather got a bedsore, they got her a different bed. Speaking of bedsores, for those of you that don't know (I sure didn't before all this happened), there is a special air bed made especially for healing and preventing bedsores. It is very expensive to rent, but Heather's ins. co. thankfully paid for it. I can give more information if anyone needs it.

I also still have the Therabite appliance she used for her trismus. They are very expensive, but they do work. Unfortunately, because of all her other problems, she only used hers briefly. If someone needs one and your insurance won't pay for it, you are welcome to have this one.

People are welcome to contact me personally about any of these supplies. My email address is [email protected]. I also have a new address because I am switching ISP's, but the first will be good for at least a month yet. The new one is [email protected]. You can use either one, but I check the first one more frequently so it's your best bet for fast contact.

Also, I know there are many people who visit the forum, but don't post. If any of you have questions, feel free to email me personally. I'm not an expert, but Heather did have quite an array of problems, so there are many things I am familiar with.....PEG tubes, PICC lines (& a Hickman port), fistulas, tracheostomies, portable medication pumps, bedsores, constipation, nausea. She had extensive surgery including a modified radical neck dissection, radiation and chemotherapy. She was in the hospital 11 straight weeks, plus 2 weeks at other times, so I have seen most everything that the nurses do and have also done quite a bit of it myself. I will not be able to give any medical advice, but I can possibly help with the day-to-day care issues that the doctors sometimes forget to explain. We found that if the little things don't get done right, they can very quickly turn into big things.

Well, I need to get busy. I have to bake some birthday cookies for Cati's first grade class for tomorrow. Her birthday falls on Thanksgiving Day this year. She's going to be 7.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#1864 11-25-2003 04:43 PM
Joined: Mar 2002
Posts: 4,918
Likes: 66
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,918
Likes: 66
Rosie, please don't forget to change your email address in your profile...where everyone will be able to find it when this generous posting of yours gets buried under many more......


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#1865 11-25-2003 07:44 PM
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
Hi Rosie,

I have to ask how Cati is doing. I have a son who is just a bit older than she and I try to imagine how he might cope.....frankly I can't (and I don't like to go there).

I truly hope Cati is OK and will grow up to be a very strong person. She has had to deal with more than is fair.

If she would like an E-mail friend I'm sure my Matt would type up a storm.

Take care and have a very special Thanksgiving

Mark


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#1866 11-26-2003 03:01 AM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
I feel the same way as Mark, this little girl has had to deal with so much, just seems so unfair. I have a 9 year old and I break out into cold sweats when I think of her having to deal with my death long before she should have to. It's a blessing that Cati has her grandmother who will make sure that Cati knows how much her mother loved her. I showed my older daughters Heathers and Cati's picture and we talked alot about their role with my younger children if I don't survive this. Rosie, you sharing so much of Heather with everyone has helped others down a very scary path. Having that conversation with my older daughters and knowing that my three youngest would be well taken care of set my mind at ease. Take care and hug Cati for me.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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