Thursday, September 30, 2010
This hospitalization hasn't been half as bad as I thought it would be. We've had some rough days, of course - and some REALLY rough realizations this past week; but I think it's really helped turn his thinking around. Sometimes it IS those rough moments that you need to help you.
I wasn't wrong when I thought that he was going to come into the hospital really bad. He was VERY bad. His PFTs were only 22%, down from 41% when he last left the hospital.. I mean his lung capacity had dropped over 50% - Thats scary! One of his RTs, whom is also a good friend bluntly told him that if he didn't get his act together at home he wouldn't be here another year.. Gosh that is SO hard to hear. That kind of brought him into reality. He isn't ready to die - so therefore he has to make some changes. And he is trying. Bless his soul he really is trying. And I admire him so much for that.
It may be hard to turn things around - but when Spencer's mind is in a good place he works so very hard to make it happen. It makes me proud!
The first week here was rough. He had some good vent sessions, some good cries, and a few really good talks with doctors and friends. The first week was a HUGE success because when he went in to take 1/2 way PFTs... his numbers were GREAT! He was at 36% up from 22! =) He worked SO hard to get good PFTs that day that he really wore himself out - he had to cut rehab about 10-15 min short because he just couldn't go anymore. I was very proud of him for working hard though! He really did try hard! But not being able to do a full 20-30 min of rehab really got him down. Put things into reality that he is very frail and had a lot of work to do!
But this week has been great =) He came in here on 6 liters of oxygen, and they actually had him on a mask doing about 50% which is probably like 7-ish liters of O2... yikes! But through the course of the week - he was sating BEAUTIFULLY and was able to go down to
This is the lowest it's been in SUCH a long time!! And his sats have continued to stay above 92% sometimes will climb up to 95% =) We haven't done a room air test yet - but I think he's going to today to just see what he's sating on room air while sitting there. Shouldn't be TOO bad!!
He's off to rehab right now - and I'm sure he's working HARD!
Spencer if you read this - I am PROUD of you. You have come such a long ways this hospitalization and you overcame some really hard obstacles and realizations. I truly admire you for your strength these 2 weeks. You've put up with a lot, yet you are coming out of it with newfound strength and hope that things are going to look up. My trust in you has grown and I hope that you can keep this up despite boundaries that you have to jump over to get to the other side. You have proved that you CAN fight this battle and come out of it with flying colors. CF doesn't have you, Spencer. The road might be long and bumpy, but you have the inner strength to pull through. You just have to fight to find that inner strength and let it shine through even in the darkest hours. I love you and I am looking forward to spending much needed time with you and your new HEALTHY self ;-)
That's all for today =) Thanks for all the support and prayers!
Sunday, September 19, 2010
Spencer goes into clinic tomorrow and he will be admitted into the hospital. (We say this on assumption but with the way things have been going, he's going in) It will be another two week stay, no different.
But for some reason.. I'm nervous. And I'll get to that in a second. But there has just been a lot going on this past month. Some things in which i'm keeping under wraps, so-to-speak. But it's been a very hard and looonnng month. Spencer's been struggling more than usual and it's been really hard for me to keep my sanity and patience. I keep having to tell myself that things. will. get. better. But sometimes it's just hard to stay positive. Being the fiance to a CFer comes at hardships that no other relationship will have to face - and I think we've faced most all of them this month. (With no doubts that there will be more to come!)
He's had a hard time keeping up with life. It's kind of like a never ending cycle. We're cruising a long with things going fine, and then we hit a brick wall only weeks, at most, months later and we're back to square one. This is catching up with both of us, but mostly Spence to stay positive and just keep on going no matter what. We're working with several different people to help him get better mentally, emotionally, and physically... and it's just taking so much time. Time that I have to live with.
But throughout this month he's really declined. We left the hospital with FEV1 at 41%!!!!!! That is INSANELY GREAT from what numbers he has been blowing the past year. His highest was only 36%. But they soon declined from there after leaving the hospital for various reasons. That that's so very discouraging not only to me, but to Spencer as well.
This is why I'm nervous and just REALLY not looking forward to this hospitalization....
1. I'm afraid that he's declined so much that we're not going to see numbers around 41% for a long while.. Now I could be very wrong and I pray that I am.. But it just scares me.
2. I'm tired of the hospital. We're in there every month... and it's getting old. I just want to be out of that stinkin' place for 2 or 3 months and have GOOD health.
3. I want to go to clinic just once time and him NOT be admitted and be able to go home without a worry... not be admitted like always.
4. What if it's longer than 2 weeks? we are planning a trip to Kansas 5 days after he gets out - it's important that he comes with me.. I don't think I could handle another dissapointment like that!
Idk.. it's just "the hospital". It has that ring to it in which I am becoming tired of. It just wears me out.
I want to just abandon life at home for the two weeks and stay with him there, but we have 2 animals who need care, and I know it would be nice for Spence to get some home cooked meals. There is always laundry to be done... I just can't 'live' at the hospital right now.
But then i HATE being here when he's there.. it's lonely..
But I am just going to have to suck it up... ignore all of these little pesky negative thoughts and just roll with it. Maybe this hospital stay will be a GREAT one and we'll actually have some fun.
And do some wedding planning? *cough cough* We'll see.
Saturday, September 4, 2010
Time to post something exciting! For anyone that follows my facebook - you will probably already know that I'm engaged =) I am SO excited about it! At first we didn't think that we could get married until after I had a REALLY good j0b as a CNA or else had a great job as a nurse. Reason being is because of insurance for Spencer. With his CF, he would have been dropped by his moms insurance - and even though he has medicaide... they pay for SO much! So we were thinking that I had to have a good enough job that would offer family coverage... Well THANKS to Obama and his health care reform... Spencer's insurance CAN'T drop his coverage =D... which means -drum roll- WE CAN GET MARRIED!! Insurance is no longer an issue. We are still looking into it to make sure that ALL of our bases are covered... but it sounds, so far, like it's a go!
So even with the insurance issue figured out... we were still going to wait a year or two due to Spencer's health and my schooling and working and loans and debt and you know.. all the "real life" stuff. Spencer wanted to make sure he was in tip top health before we tied the knot, he wanted his immediate debt payed off before we started our life together.. And I kind of wanted to be little further into school and maybe a year or two older.
But Life had to interrupt and Spencer's dad was diagnosed with a terminal, untreatable cancer.. =( And it was really important (REALLY) to Spencer (and myself) that his dad be present when we get married. So we decided to bump the date up even further.. and we went with... -drum roll-
JUNE 10th 2011!!! =) And we couldn't be more happy!! There isn't TOO much significance with that date, really. But more of our family could be here in June, after school is out.. and one of my favorite numbers is 10.. so we went with it =) Planning is a lot of fun and we're just doing the basics right now. Figuring out where we want to have it, guest list.. we want to get as much done as we can sooner rather than later and we also want to spread it out so that we won't be so stressed out! Because stress = sickness for both Spence and I.
It's about time that something good happened between the two of us! It seems like his health has taken TOP priority lately. He's been a sick dude this past year - but he seems to be doing pretty well now! I'll write another blog about that in a few days.
All-in-all - we are VERY excited and I just wanted to share!!! :D