48 Hours Without The o2 Cannula!

I just got off the phone with Dad and he sounded great - still winded, but great!  He said it's been almost 48 hours since he's had to use the oxygen cannula - he didn't even take it with him to his pulmonary rehab appt. yesterday!  This is such a huge step for him physically and mentally and I am so, so proud of him.  Last week he gained four pounds (okay, he had shoes on so we'll call it three) and he's been walking every day on the treadmill that Bryan set up for him in their front room.  Everything is still a bit of a struggle for him and leaves him feeling completely wiped out - things like putting on his shoes, reading a book, talking for more than a few minutes, but from what we hear  from the doctors and other patients it's perfectly normal - frustrating, but normal.  As he reminded me today, it's a slow process that's literally going to take about a year before he feels 100% normal again.

As difficult as this whole process has been, it never escapes us how much better off he is now than he was three months ago.  Little things like enjoying family Sunday dinners together at home and sleeping in his own bed have become big, wonderful things.  Today he has hope, and a bright future ahead of him and was finally able to kiss that oxygen cannula goodbye - hopefully forever!

Home Sweet Home

It's been one week since Dad came home from the hospital and he's doing great. Even though he no longer "lives" there, he still has to be driven to University Hospital at least three times a week for blood tests, X-rays, clinic visits with his transplant team and pulmonary rehab, all of which usually last from 8am until noon - 1pm. The good news is that he's been doing pretty well at night and we've stopped needing someone else to sleepover as a precaution. He requires an IV anti-fungal medication every day at 4pm at home that Amy has now been trained to help him with since she lives so close (thank you Amy!) Bryan and Janalyn brought their treadmill all the way up from St. George last week and set it up in the family room to help with his recovery. They've done everything they possibly can to help out even though they live so far away. I seriously have the best brothers and sisters in law in the world!

He's still on 2-3 liters of oxygen until this neumo (air bubble) dissipates and he's able to breathe normally. The plethora of pills and medications that he's required to take every morning and night is mind boggling. Preparing his pill boxes for the week with over 16 different medications is a little nerve wracking when you think about how critical each one is to his survival.

I don't think he realized that he was free to remove the last of the bandages earlier this week and finally be able to take a real shower. Mom and I helped him remove the bandages tonight and when I saw him there with all the scars on the side of his chest, I got a lump in my throat because of how incredibly proud I am of him and how grateful I am to the donor and their family who's gift of life is living and breathing inside my sweet dad.

Before my girls and I left tonight, he wanted to say family prayers with us. His constant smile is back now. His color is great. He sounded so good while saying his prayer - so thoughtful of others, so grateful for his blessings, so normal in his breathing and speaking. I know it sounds silly, but I notice little things like that now. We all do. Every breath ..... every "whew" .... and even every silence in conversation that used to be filled with painful, hacking coughing fits. We notice it all, and we are grateful. So very grateful :)

Almost to the finish line ...

We're just waiting for the final papers and a wheelchair and then he's OUT OF HERE! This is the first time he's been able to wear real clothes in over 6 weeks.

Stay tuned for a picture of him crossing the finish line of his first ultra, ULTRA marathon :)

Knock On Wood

So the latest from the doctors is that if, IF everything continues to go well that Dad will be heading home this Sunday in time to watch the Super Bowl!  Although his daily X-rays continue to show a small amount of fluid or air around his lung which is what is still causing him to still be short of breath, the doctors say that as long as they see it get smaller and not bigger, then it will most likely be absorbed by the body on its own.  The doctors have asked to meet with our family Sunday morning to go over the long list of medications and care that he'll need in the coming weeks and months.

He's so excited and we all are too, and at the same time we're all a bit nervous about caring for him at home.  He'll need to be driven to appointments 3x/week to University Hospital for the next month or so, and maybe more for the administration of an IV medication that he'll need daily for the next five weeks.  Any volunteers from his neighborhood and ward to help drive him to and from these appointments would be so helpful.  We also may need to have some of you family and close friends volunteer to come by during the day and also some of you to spend the night in their guest room - just so we know there's someone else there to help in an emergency so my mom doesn't feel so overwhelmed.  His diet and nutrition will also continue to be important in the success of his recovery, so all of you good cooks out there, now's your chance to shine!  We'll post a list soon of the foods and snacks that sound good to him and are helpful to his recovery.

We'll keep everyone posted on how he does over the next day or so.  Today marks his six week anniversary of living in this hospital 24/7.  If this actually does happen and he ACTUALLY gets to finally leave the hospital ......I think we may need to hire a marching band or a fireworks show or something. 

Seriously, knock on wood ....... please!

Dang!

Just spoke with Dad. He just got back from another X-ray which they're still looking at. He was discouraged because they told him this morning that they did find more fluid from last nights X-ray. He's on 3 liters now, tired from walking, taking pills etc. and said he does feel like its a little harder to breathe. He wants to rest for a few hours with no phone calls or visitors, so I told him I'd update everyone and check in on him in a couple of hours.

Chest tube out ... hopefully forever!

The last couple of days have been a bit confusing and frustrating, to say the least. I think we've all started to feel a little numb to all of the doctor-speak and have realized that they don't have all the answers either, but they care about his recovery just as much as we do.

They put a water seal on the chest tube, then they clamped it completely, then X-rays showed another air bubble, so they unclamped it and then more fluid came out and dad wasn't feeling right. Almost as soon as I left the hospital this afternoon feeling frustrated again, I had just finished updating Bryan on what little information I had when Dad called me an hour later and said the doctors had come in and decided to remove the tube completely. Whaaat???

Honestly, I can't keep up anymore with what's happening and why, all I know is that Carter was just with him tonight and said Dad was feeling great - even better than he was earlier. I'm sure the nurses are watching him closely since the only other time they pulled out the last chest tube his lung collapsed later that night. (I was there when it happened. Not fun. Not fun at all.)

So please keep him in your thoughts and prayers. The thought of him having to have that chest tube put back in again and having to stay here past the six week mark is just, well ..... let's just not go there. Not gonna happen. Happy thoughts and positive vibes from here on out :)

And on that note, I'll share some pictures of my 4th grade twins' science fair project. Maybe someday one of them will find a cure for IPF :)