Monday, April 18, 2011

Day 18 / update

Day 18 - Something you regret.
This is a tough one. I know it's pretty cliche to say this - but I don't actually regret anything. I honestly believe that everything I've been through, good AND BAD has shaped who I am today. I've learned a great deal from making those mistakes. If I wouldn't have went through those "regrettable" moments in my life I wouldn't have learned from the mistakes I made. Granted, at the time I would have LOVED to take it all back - but reflecting upon it now, I'm glad they happened because I know SO much more!
So no, I don't regret anything, but there are a few things that I wish I would have made a better decision about XD

So now for an update. Most of this is linked to Spencer...about 5 days ago Spencer came down with a nasty stomach flu and made him really sick. He was unable to exercise due to high fevers, extreme fatigue and throwing up. He wasn't able to keep a thing down. Poor guy. I think that if he wouldn't have contracted the flu things might be a lot different right now!!!

I am very proud of him for sticking with his treatments though!!! Even though he was nauseous during every treatment, he still tried to do his vest!!! And that usually makes him puke. When he didn't do his vest he did his PEP to keep his airways clear. He's really making progress when it comes to compliance and it makes me SO proud to say that!!! :)

So today we had his clinic appointment - I think in the back of our minds we both knew that he'd be admitted into the hospital again. It's been almost 3 weeks though that he's been out!! That's progress compared to the last couple of months!!! :D

Spence blew PFTs and his FEV1 had dropped a little bit to 23%, down from 25% last week. I hate that number.. hate hate hate! Blah He really struggled to blow his PFTs today. After the first one he went into a panic attack because he just literally couldn't breathe. Usually I just rub his back and pass it by, but it's different when you're not at home and the tech is giving him concerning looks. It brings things back into reality I guess. It was hard to see Spencer struggle THAT MUCH just to take, what we call a simple and easy, breath. Gosh it's heart breaking....

but anyway... that combined with a persistent high fever, increased cough, fatigue and every other symptom in the book they immediately told us that he was going to be admitted - we didn't even try to fight it because we both knew it was what he needed at this point.

We talked with the clinic RT and she is going to get him paperwork to fill out to get the cayston!! YAY! We're really excited and optimistic about this - anything is worth a try at this point. His doctor didn't have anything new to say, really - just that she would make an appointment with the liver doctor for Spence to see while he's in the hospital. that's going to be interesting. She thinks that one of the reasons he may be getting so sick is do to the fact that his liver may be getting worse. Ick. =/

We also went to clinic to see how close, or how far away Spencer would need to look into getting a transplant. We didn't know much about this - just that they put some numbers and variables in the computer and it computes this reading. So we asked the doc what it showed and she had them put in all the numbers. As we waited the clinic RT came in and told us that she was calculating the "5 year predicted survival".... whoa now. Those words struck both Spencer and I HARD. Yes we knew that it was going to tell us if we needed to look into a transplant soon - but no one ever said the name of it until then!
I think that Spencer said it best... He said something like 'I always knew I would die, but I have never had someone tell me the number of years I have left' and he let a few tears run down his face. It's SO hard to hear him say that. I told him that he didn't have to know what the results were - that the doctor could just keep it in her record, but he said that he needed to know. He needed to know what to expect.
So we sat there.. for what seemed like forever. With every person who walked by that closed door, every shadow I saw and every footstep I heard my stomach just lurched. I was nervous. And honestly, I was expecting the worse. I didn't want to - but I just thought that because the way things had been going this year - that something had to give and maybe this was our only option left.

Finally the clinic RT came in and gave us the results. She said that it gave his a 47% chance for survival to 5 years from now. She didn't really explain much about it. So basicly right now it's a 50-50 chance that he live 5 years? See I don't know. That number wasn't all that comforting to me. I mean, honestly.. I expected it to be worse... but for some reason I didn't take comfort in hearing that 47%. She said that she put in all the numbers from today... She said that she also put his highest weight, PFT, etc in from the past year... and it showed a 60% chance. So that's a lot more encouraging. I also think a reason that I didn't take comfort in that percentage is that becuase if it's not time to look at a transplant, then Spencer is going to get a lot worse. And that SCARES me. It already seems nearly unbearable to go through all of this with him. I honestly cannot imagine what it is going to be like when it becomes time to think about that. How much sicker can he really get? Yikes.
What did bring me some comfort though is the huge smile spencer got on his face when she said this - because he said "so then it's not time to look at a transplant?" and she told him no. he was SO relieved because I think it gave him new hope that YES he can improve and work his butt off to get better... I love this boy. He's amazing in every way.

She said that ways to improve this percentage is to:
1) Get his weight up (we're working SO hard on it!!! He was down 10 pounds from last week :( Probably combination of not being able to keep food down for about 4 days and he had some water weight last week) but this is just more incentive for me to cook healthy yet very high calorie meals for him!!!!!

2) Get his FEV1 UP. We're also working on this. The number one goal for Spencer this hospital stay is to go to rehab EVERY SINGLE TIME. and not miss even one, no matter how bad he's feeling. It's going to be really hard to get the number up - but the docs are shooting for FEV1 in the upper 30's upon discharge. -cross your fingers!-

3) Decrease exacerbation (aka CF clean outs or hospitalizations). The least he's exposed to antibiotics the better he'll be. So the longer we can stay out of the hospital the better.

This hospitalization they are going to do IV tobramyosin. He can't be on the IV kind very often because of his kidneys. But it's been 7 months since he was last on it and they think that he responds best to the IV form, so they are going to try that again. Also they are swtiching him back to IV meropenem. They think that his cocktail is the best bet for getting his PFTs up.

Please pray for his hospitalization to work and for Spencer to make a huge improvement. The last time he was admitted he didn't really respond to treatment. So it's really important for him to respond NOW!!!!

And to note... my baptism has been postponed for 2 weeks - bummer... but it's super important that Spencer is there for it!!!

Also another side note - SORRY to friends and family who are looking for wedding invitations in the mail! The company we have doing them is taking a REALLY long time to get them done! They made a mistake in the first design... so I corrected them... they changed it and changed the wrong date!!!! So I sent it back through email to be corrected... and I haven't heard anything. We are trying our hardest to get them out - So if you need ANY information (flights, airports, hotels, dates, times, arrangments, events... whatever) PLEASE contact Spencer or I ASAP and we will get you all the information you need to make arrangements to be in Kansas for our wedding!!!
It's June 3rd in Bird City, KS. :)


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