OUCH!

My mouth hurts, my tongue hurts, my cheek hurts, and oh yea, did I mention my mouth hurts? 2 days, 2 dentist visits later, well they tell me they need to "start over". All this for a simple crown, a temp at that. My tongue is ulcerated as is my cheek. My mouth won't close all the way which is fine because when I do mange to close it I get searing pain throughout my entire head.
Yep, good times are being had here.

ON other notes, we are heading back to the big city by the lake today to hopefully NOT land in Club Med. We'll see hwo that works for us.

I do promise to catch up on my blogs, sign my comments, and be a better blogger.... really.

Holly

Have I been locked up too long???

Well, I'll let you decide.

Have you been locked in a room too long when you.....

*Have to entertain yourself by seeing how closely you can zoom in on flowers planted against the hospital across the way? (we are on the 5th floor of Children's and there is an adult hospital next door).



*Try to zoom in enough on people enjoying their lunches that you can figure out what exactly they are eating?



*Design hula hoops and other exercise equipment out of thermometer probe covers?



*Drink excessive quantities of water and soda because it give you a reason to take a short walk (to the bathroom!)?











*Discuss at length why it is Max and Ruby don't seem to have any parents, but yet have a grandmother (must watch Nick Jr to understand this one)?



*Spend a good amount of time researching what exactly Uniqua from the Backyardagains really is... have both online and inperson discussions regarding the matter and enter heated debate over why or why she is not a ladybug, cow, etc...



*Realize much of Facebook is just glorified Webkinz for adults, but that doesn't really stop you from spending time on your "farm" or with your "pet".



*Develop carpal tunnel from playing typing maniac so much just because you are trying to beat someone who won the third grade spelling bee in a spell down against you in 1980.



Now, you may think the fact I have time to write such a lengthy, useless, nonsensical post means all is well here at Club Med, but it's just the opposite, it's unwell and I'm trying to pretend it isn't happening. We are on a witch hunt of sorts. Looking for a ball of infection we know is in there, but hiding. Fevers, cat scans, pain, bleeding.....

So until next time I think I'll go back to the window and see what else I can zoom in on with my camera, after all, the Butterfly is sleeping and I've had way too much Mtn Dew to sit still much longer!

A little look at our digs

Things continue to progress. Some good, some not so good. She needed blood again this morning and is back to running a pretty good temp. We did her first ostomy change today and I started learning what exactly to do with the care of it. All in all, we are making strides, but struggling still with other things.

I figured I'd give you a small glimpse into our lives here in room W501.

This is where sleep....



I actually sleep here part of the night and in the recliner for the other couple of hours. Then there are the times I crawl up in bed with her if she needs me to, but anymore there are just too many tubes and wires to do that with much ease. She's not such a big fan of it anymore either.

Here is here bed and space... she loves the TV on the boom and all her "stuff" close by.




This picture gives you an idea how big our room actually is....



Since we are frequent flyers they let us have the big room. It's really nothing other than a big room. Everything else is the same. It's nice and quiet though and it's the only room in the ICU where the big glass doors don't face straight in the entire room for all to see. I like that feature when I'm sleeping. It's hard enough to sleep knowing someone is in the room and watching/hearing you as you sleep. Always hoping I'm sleeping quietly and not in some weird position or flung all over the place, shirt all scrunched up to my neck or whatever.

Anyhow, those are our digs as of now. Lovin the comments. Thanks so much for all your support.

And so it goes...

As you can see, my little butterfly got to enjoy her fireworks last night. It was her one concern. Not that she got her colon removed, not that she has a fever, not that her heart rate is too fast, not that she has pain with every movement. Nope, she was worried she'd miss the fireworks! So, we flipped on PBS and watched the over our Nations capital. It was wonderful to watch them while listening to the sounds of the symphony.

Some of our picture looks better today. We have pain under control with some additional meds, temps are down with the help of meds too. A few labs have improved and others have gotten worse. A little of this and a little of that, but overall we are on the road and moving the right direction.

Day 3

Ahhh, sweet sleep! I think I got 5 straight hours of sleep last night. It was fabulous!

Today is a day of pain issues for my Butterfly, but our dear Dr G is on top of things. While she is sleeping I've working on getting myself further addicted to facebook. I can sit here at the foot of her bed with my laptop and be here the moment she moves or opens her eyes, but still be putzing around.

We gave the Butterfly a unit of blood this morning so that's helped a lot of her perfusion issues and she's continuing to battle her temp, but one of the pain meds we use also helps lower her temp so we have it down to 100.2 and are pretty happy there. We'll see how that goes. No one is making promises, but the docs seem happy with where we are, but guarded as far as her infection status. Time will tell and at least she is no sicker than yesterday.

We did get to give her a little sponge bath and she is decked out in her Red, White, and Blue...necklaces, hairbows, t-shirt, the works.

Day 2

I really wish people would be on the same page. So frustrating to hear 15 points of view.

Today she's dealing with high temps, high heart rates, and low blood pressures. She'll still wake up and talk to you though so that in itself is so wonderful. Felt bad this morning since we had to change her bed, she had to move and was hurting, but now is dry and comfy which is nice.

Hated when she woke, felt her belly, and looked at me with sadness. She says she doesn't like her new belly. She won't look at it other than to feel it. I know in time it will be OK, just feel I've betrayed her in some way. I know I haven't, but hate to see her look at me that way.

Tomorrow our trusty doc is back, things will improve from there. We have wonderful nurses. They love her dearly, they look out for her....... couldn't ask for anything more.

The Big Day

It's been a long morning. Up since 4am. Surgery came at 7. She came down and I got the call that they started at 9:30. She was asleep at 7:30 per anesthesia when she came down to the OR so I always wonder what they heck they are doing for 2 hours to get ready. I'm sure it is all important and I'm glad they do their best to care for her. Just stressful none the less. Hoping for another update in 2 hours and maybe being done by early afternoon. Guess time will tell. Testing in the OR yesterday showed we had to do more of a surgery than anticipated as she can't be reconnected and will need an ostomy. Not all together bad, just different and a learning curve.

She, of course, was full of spunk and spirit last night. Professing to be an owl and therefore not needing to sleep! Wonderful nurse though so I slept regardless, a few hours anyhow. Thanks for all the notes, prayers, and support.

It's a wild, wild journey we are on.