I know it is early for me to post, but it has been a full morning.
Yesterday they decided to try yet another tube feed form. They decided they would run it all night. I pointed out to the nurse that meant I would go almost 24 hours without any food. She agreed to start it early. This is crazy making. So the plan was to up the flow rate by 20 mL each hour until we got to 130. Fine. The food was fine. I actually had less issues because the day nurse recommended changing/eliminating a couple of meds. Things were good. In the middle of the night, the nurse checked residuals (GROSS warning). This consists of sucking everything back out of my stomach, measuring it and then putting it back in. The theory is that if the stomach is already full, you shouldn't keep pumping stuff into it because that will cause problems. At this point, it was too full. They always ask me if I feel full. Like I would have ever known the answer to that question in my lifetime. Why don't you just ask me if I'm tired, thirsty or have to go to the bathroom. I usually don't have those answers either. Freak show, I know.
At any rate, she turned the pump off for awhile. On first rounds, the baby docs came in at 6. They were mad that she had turned off the pump and ordered no more checking of residuals. Then they said they want to have my PEG tube pushed down into my small intestine. "It has been two weeks and you still can't get this right." I was livid.
When the big team came in at 7, I had my note ready. It is a bit harder to have a hissy fit via scratch pad, but it works. I pointed out that there has been a change in the feeding plan every single day. How is my body supposed to "get it right" if it changes every day? If I'm already having problems, how is yet another procedure to move the feeding tube going to make that better?
Yay, he agreed with me. I'm going home sometime today!!!
There are minor concerns about the way my neck is healing. It will take a long time. My modeling career is over (except maybe for monster magazines...)
I have to come back next Wednesday for an all day appointment. Speech says they will likely remove my trach that day, or at the very least, cap it. I will also try out the text to talk machines, particularly the Dynavox (All my speech peeps out there feel free to weigh in). It appealed to me the most because of the ability to have stock phrases and it can be used as a computer as well. We have to get this paperwork going so it gets through before the end of the year. Clearly I've met my deductible this year.
I'm going home with a trach and all that equipment, the feeding tube and its accompanying gear, a gnarly incision, a fistula, antibiotics, my totally amazing husband and a whole lot of hope.
Love,
Kiara
PS-- Anyone up for Kiara baby sitting tomorrow afternoon starting around noon and/or Tuesday from 8-12? Kelly has to go to work.
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6 comments:
HOORAY!!!!
Have a safe trip home!!
When you need me, just tell me when to show up at the airport. I need about 10 minutes to pack a bag.
You and I will have some wonderful
deep, meaningful discussions (some gossip included, too) across the dining room table.
Granted it will be in a different way from our tete a tetes in the past, but it will be a new experience for both of us. I can't tell you how much I look forward to that.
And to seeing you, Kelly & the girls.
No problem with fistulas, feeding tubes,trachs, etc -
After you have had a baby pee, poop and throw up on you, nothing can gross you out.
See you soon!!!
Love & hugs
xoxoxoxo
Hi Kiara,
Yeah! So glad you get to come home today! I've been out of the loop for days due to illness and schedule... so I am STOKED to hear about this! I so wish I could Kiara-sit during a weekday... but alas I cannot. I am free ALL day Saturday and Sunday, and Friday night after work.
I look forward to seeing you and helping out...
Ellen
Wish we were closer. If you want to send her to Utah, we would be happy to have her but she might be late getting to school in the morning!
So glad you get to go home! There's no place like home, there's no place like home!
I wish you roads with no bumps (it won't be fun when the pot holes show up)
Best news of the day! Maybe you are home when you read this. :D Wish I could come Kiara-sit, but I'm tied to the home gym meet.
i can do Tuesday 8am - noon
Joy
So... you're venturing into the realm of what we call AAC - Augmentative and Alternative Communication. There's a lot of tech talk to be done and it can be frustrating, but it is miraculous what technology is being used for. The goal of AAC should be to say what you want, when you want, wherever you are, as quickly as possible. Sounds simple, but it isn't always.
A Dynavox can be a good thing, but so can a much less expensive combination of off the shelf tech and app. I'm particulary a fan of an app called Words for Life. The combo of that app and whatever platform you like (iWhatever, or Windows based) will typically run you far less than your co-pay for a dedicated device like a Dynavox. Downside to that there is no insurance coverage at this time for off-the-shelf tech and you need to be really aware of speaker volume limitations, device strengths/weaknesses and warantee type info on off-the-shelf tech. Unfortunately there's often less robust customer service available in comparison to a company like Dynavox. It used to be the case that only the dedicated medical equipment providers had things like portable touch screen devices - but this just isn't the reality any longer, so please know you have tons of options.
I'm probably not the only SLP out there who feels this way, but sometimes it feels that way... I don't love the Dynavox language systems. So, in addition to the physical equipment and the interface, the next most important thing to consider is the language system - how fast can you say anything you want? How is the vocabulary arranged? By category? By frequency of occurence in the language (my preference)? Is there a spell & speak option? Can I store my specialized vocab and access it easily? I think that while message storage is important, single words are typically more powerful and flexible because it never fails that someone interrupts your pre-planned messages with a question that you hadn't anticipated and then things get derailed. So frustrating.
Whatever SLP you're working with should ideally be comfortable with a wide range of technologies and vendors, not just one. The vendors for dedicated Speech Generating Devices (SGDs) are aiming to make a sale, and they do a lot of training of individual clinicians, so just make sure your specific needs are met in the process.
For you, portability is really important, so it is vital that your device be lightweight. You don't want to end up with an $8000 paper weight. I have a 30 year old client who is 5 years post stroke with minimal speech output, but no deficits in terms of reading or writing. Even though she could have a large speech devices, she uses her iPhone and an app called Proloquo2go to type and speak messages. It works well for her because she has good dexterity in one hand and can manage the tiny onscreen keyboard better than a full sized keyboard. Ideally a clinical setting where the SLP has access to many different devices to trial would be helpful for you.
As always, drop me a line with any questions or other concerns. I'm cheering loudly for you! -- Nikki
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