Pictures finally......

Alright blogger isn't leting me load any more, here's what I could...Texas love bottles... Both chewing on bones or a toy...
Kinda dark but a good picture....
Again, a little dark but a good picture...
Chugs in her begging mode, Texas just gives you hard to resist puppy eyes...

Still hangin' in there....

Wow I am so sorry, I didn't realize that I havne't updated since the beginning of July! I have to honestly say part of it is once because I have just been hanging out in the hospital and don't feel like I have much to say and two because I don't feel like anyone is reading! I will log onto my email and there won't be any emails from the blog (it emails me when people comment) and so I will just read blogs and then get tired and sleep!

But thank you to the two of you who have commented about where I have been and hoping I am still around. I can't believe I am still here, I also can't believe how long I might stay here! Oh how do I shorten the story?

I came in with tension pneumothorax, four chest tubes later I am finally free! but it has done damage to my lungs as every hospital visit does and therefore I am 'weaker' than before I came into the hospital! That was pretty short!

So I do not have anymore chest tubes in, I got the last one pulled on friday and then Monday I made the decision to do 100% comfort care, basically so they would give me more pain meds, it means that they focus more on how I feel and my 'comfort' than what the numbers say or worry about giving me too much pain meds because it will affect my respiratory etc...

I thought I was on the way out a couple times, I still feel and know that it is near, when though is so hard to tell! I have come to peace with it being my time but I am not gone yet! So since I am still kickin' I will still do what I feel I need to do and it gives me time to work on me (something I feel like maybe I am still here because I need to work on me!).

This has to be extremely hard on my husband! The hospital is over an hour away from where we live so he spends the night (on a bad cot of course) when he can and so then we need to have people take care of the dogs, he also has school and is doing clinicals, now he has a lot to make up because my health has been so up and down! And it will only continue! He has to juggle so many things I feel for him and honestly am glad I am the one in the hospital and that he is the one out there, I don't know if I could handle it all!

My little girls have been spending more time with me and I have been able to take some photos from my phone and capture some precious moments...

Just kidding of course it isn't letting me load, I will return......

Breaking Records..

That's me a record breaker! Just not of any records that I want to break! Yesterday I totally forgot to add that I had tied my record of longest hospital stay so today I break that record! Three weeks goin' on four now!

Also yesterday I finally got my hair washed!!! Only going a full three weeks without washing my hair! I know, I know, I'm a cosmotologist how could I do that? basically because I can't wash it! They do have a 'shampoo cap' but that doesn't work, they heat it in the microwave, put it on your head massage it around and it does have some soap in it but they let it cool and take it off and that's it! a no rinse solution, therefore it is still in your hair and I feel makes my hair feel worse than before, so that's why I haven't done one this visit, but one of the HCA's here told me she could wash my hair if I could just sit in a chair, sure I said, so we did it yesterday and not only did she wash it but she blow-dryed it too! Oh it felt so so good! So now my hair doesn't look quite so bad.

As for our fourth of July, we didn't go to bed until 5am!!!!!!! but it wasn't because of a big party or fireworks, instead it was because of my special lungs! I kept getting a little more short of breath as the day worn on yesterday and was more tired, so I had them get an ABG (Arterial Blood Gas) the intern was a little funny because I told the nurse I wanted one and so the nurse had to call the intern and he said 'I've never had anyone ask for one!' the reason is I wanted to see what my C02 was, about a week earlier it had climbed pretty high, so we did it and it was a little high but a lot lower than it had been, nothing to worry about yet, they did another one a half hour or so later and it did go up a little but that isn't what the problem was we had also done an x-ray and they couldn't see anything, they called the dr. and he said do a CT scan because with me it's never simple, we all remember what fun we had last time right?

Well, wasn't as bad this time, came back to the room and in an hour or two told us we would be going to CT to check-out the chest tube or maybe even put in a new one, they saw a good amount of air in there, so we went down about 3 in the morning and I'm so grateful that the dr. drove over an hour to be there, he was the one that put it in, so he was able to just pull it out a little and it was in the right spot and they got a lot of air out right away, I didn't feel a major difference in breathing like all the other times, but then again it wasn't as bad, at least I did feel better and my breathing is much better today.

My little doggies are coming up to visit me tonight! Yippee!

Happy Fourth of July!

I hope everyone has a Happy, Fun, and Safe Fourth of July, I will be enjoying fireworks from my hospital room but I am grateful that I have such a beautiful view and that it will (or should) include a view of a good fireworks show.

Not much to report or say, I have a couple really good days and then a couple of not so great days, still just watching the little chest tube, may have it all weekend.

Well, just watching the U.S. Olympic Swim Trials, can't wait for the Olympics, wow that's next month!

What is going on with me?

Wow I am so sorry it has been so long since I've updated, I keep wanting too, I get on the computer and sign in, but then I read blogs and by the time I'm done I am worn out and need a break and then I never get around to it! I really want to blog because I have had some experiences I don't want to forget. So let's get started and see how far I get! I get inturrupted so many times!

First is when they took me to do a CT scan, I have talked to dr.'s about this before and my dr.'s know how hard it is for me, I can't lay flat, I haven't in over 10 years, I started out with just 2 pillows and now sleep on 4-6 depending on my health. Now the biggest reason I can't lay flat isn't because it's hard to breathe but that I start to cough up blood, no good ever comes of that. So I have not had a CT scan in a really long time.

Well they really needed one to help determine if and where the air in my lungs is. So I consented, I am on bi-pap 24/7 it helps me to breathe, well come to find out it has no back-up battery and therefore you can not use it while you are being transported, I had to use a regular oxygen mask, alright I thought I can do it I can be strong, the RT guy would follow me down with the bi-pap and set it up and then hook me up to it once we were there, they CT people also promised me that it would only take 30 secs for the test.

We got down there and the RT hooked up the bi-pap it didn't reach! I was kinda freaking out! I needed it to breathe! So they were telling me that they could have it all done in 2mins. and I could be out of there, I really had no choice, what was I going to do, go all the way down there and then for just two mins. not do it? so I scooted over onto their table and then.....laid down....I was praying the entire time, plus for some reason had the stupid band-aid song stuck in my head so I was singing that little slogan over and over (reminds me did I mention that the whole ride up to the hospital for the Pneumothorax when I really couldn't breathe I was singing the little song "Yes, Jesus loves me! Yes Jesus loves me, Yes Jesus loves me, for the Bible tells me so" it goes something like that, anyways that's all I could remember and that's all I kept repeating over and over in order to control my breathing).

It probably did only take two mins. it felt a little like three to me:) then I had to continue to breathe with a regular mask until we got back to my room, but I made it, I survived. It was a little break-through for me because I had felt like I couldn't get off the bi-pap, sometimes we have to be forced like that to prove it is possible. Also I can't describe what I went through during that CT scan, the prayer I prayed is hard to describe but it was one of me placing all my trust in the Lord, I thought I already had! I thought I trusted in Him and the things happening in my life, I trust Him, but it was more this time, I truely trusted that my life was in His hands.

So I think I already talked about the big chest tube and how that came about. Then we did do the procedure and because I had had so many episodes of pneumothorax they decided to do the more evasive one the Talc, they did it and for a couple hours afterwards I was fine and thought I might be one of the lucky ones that won't experience much pain! WRONG! It took five days to really get things undercontrol or by then the pain finally was better, I had so many issues with pain management, but also it meant that I had several close calls if you know what I mean, lots of pain meds equals respiratory failure! so several times it was a close call, we have actually thought that this visit might actually be the last one. Then these last couple days we are thinking I might actually get better!

They pulled the big chest tube out yesterday and it is so nice! I can move a lot more and can lean a little on my left instead of my right all the time. I am actually getting real sores on the right side! I have been sitting in a chair for a couple hours these past few days too. So we will see where I go from here! At least I have a good view of the city and will be able to enjoy the fireworks tomorrow, I will also tie my record of longest hospital stay tomorrow! not a record I wanted or was trying to break!

Wow, now I need to sit back and read some blogs.

Update...

So I had typed the previous post up, wanted to add more but of course had dr.'s etc... come in and it was ICU so busy, I wanted to share more of my feelings of what happened, but that would have been a long post.

As for today they got more x-rays, if the air in my lungs is pretty much gone they will do the procedure this afternoon, if not we have to wait because it will do no good! But at the same time we can't wait forever because my body isn't responding to chest tubes like it should, the dr. said he's had patients with chest tubes for weeks! I do have a tear in my pleural wall which will just continue to do somsething, produce fluid etc... everytime I cough and move. So that's not good.

I also cough alot because that is part of Cystic Fibrosis! we produce more and thicker mucus (which is why the little chest tube keeps getting plugged) and therefore our cough is deeper and junkier, some people can identify us because of our cough!!!!!!!! So that doesn't help all this or the pain issue. Aaahh life in the hospital.

My husband has stayed with me since wednesday (although he did go home this morning to change etc... he didn't have any clothes with him when he came up since he came straight from school since it was an emergency!) this is the longest we've left the dogs, so they have been in a pen for two days! we do have a friend going over and taking them out two or three times a day and feeding them but they are so not use to being in the pen! they are spoiled little girls who are free all day, I know they are just dogs but I feel bad nonetheless, hopefully I will be home soon and things will be more normal.

I hope to post tomorrow and say everything is good, the procedure went well and not as painful as expceted (they say it's very painful) I just really pray and ask anyone to pray for me that this procedure will work the way it is suppose to and that I will not suffer any side effects or have anything go wrong with the procedure.

Take a deep breath for me!:)

Pneumothorax #3 #4 #5 #6

This was typed up Thursday June 20, 2008
Yes you read that right I have had four episodes of Pneumothorax since Tuesday evening to Wednesday morning, my chest tube kept getting clogged and I would then have air fill my lungs and it would get really hard to breathe, I know I am making it sound much less serious than it was, the very first one (or #3 in this case) was so horrible they almost had to intubate me, luckily one of the dr.'s came in and did a special thing to the tube and all the air came out. It is amazing how that feels, one or two seconds earlier and you can't breathe, then you really do feel like your lung is expanding and you can breath again!

So after this happening a couple times that night they sent me to ICU then the next morning it started happening again, they decided to put in a bigger chest tube (can we say PAIN!!! bigger may mean better but it also means more pain) they were planning on taking me somewhere when within ten mins. I was calling them again telling them I couldn't breath, then they set stuff up in my room and in twenty mins. the tube was in and they were taping up!

It is more painful but a lot better than not breathing! They want to do a cat scan but I can't lay flat so we'll see what they do, also I don't know when they will 'glue' my lung now, the less air that is in there the more effective it will be.

So I am still in ICU but feeling good enough to blog! Well that's all for now it's nap time!