Out of the hospital

For the first time in 65 days I slept in a bed other than a hospital bed!

You would think that it would have been the best night sleep ever but unfortunately that was NOT the case! I still am not able to sleep flat and since I obviously don't have a bed that can sit up I had one heck of a time trying to get comfortable on a stack of pillows propping me up.

Plus I think that coming "home" for the first time in such a long time along with my whole new regimen of meds was a little overwhelming. Plus not having the security of being able to call a nurse if something was wrong was also a little scary. Although I have to admit I haven't really dealt with my meds myself yet. When we got home yesterday my mom was the one who got them all out and in the pill box for the first time...she's so organized with the whole thing I swear she had pie charts and graphs of all that I was supposed to do! LOL

I think its just going to take me awhile to fully trust my new lungs and know that yes I can breath now and yes I am going to be ok. There are just so many emotions that I feel all at once it feels sorta like a roller coaster ride sometimes.

But I made it through the hard part now I just have to do my physical therapy and get strong so I can go home and live my life again. Cause that is what this whole thing has been about to live my life with the ones I love.

Danny and my sister are coming up tonight and the rest of my family will be here tomorrow night so we can spend Christmas together. I am just so thankful to be here and out of the hospital! I hope everyone has a great Holiday and Merry Christmas!! XoXoX

All by myself....

For the first time in 3 weeks! Danny had to go home yesterday and go back to work so I will only be seeing him on the weekends now and mom just left an hour ago to go shower and freshen up at the hotel.

What a wild and crazy path my transplant journey has come to. I never in a million years would have thought this would be how I got my new lungs.

I don't even remember all that had happened to me I only know what people tell me or I read. The last day I remember is 11/28 and then the next thing I know I am being wheeled in for my transplant on 12/1 with my family waving at me down the hall.

Everyone in the hospital is calling me a miracle. They can't believe at how sick I was and how wonderful I am doing now.

I am having a little problem with retaining fluid in my legs but we are dealing with that and I am getting stronger everyday!

It so amazing to finally be on the other side of the fence. I waited SO long and watched so many people get there lungs ahead of me I thought my turn would never come. But the big guy upstairs had it all planned out and I got my lungs right when I was supposed to and straight from the surgeon's mouth "they are the best lungs" he has ever seen! :)

So thanks to all who kept tabs on how I was doing through the whole process. The thoughts and prayers where definitely answered and I am truly grateful.

Surpassing All Odds

Jennifer has continued to surpass all odds. She is a fighter - we knew that - but now everyone who has either worked with her directly or heard about her here at Shands knows that too! She pushed herself to sit in a chair yesterday. She is still on 2 PPM of nitric oxcide and they have her down to 40% oxygen on the ventilator. Her heart rate and blood pressure have now come way down since pre-surgery. Of course she is being hard on herself - she wants to be further along in her recovery - walking down the halls - but we're not there yet. Her legs are very weak both from being in bed for so long (5 weeks at Health Park before coming here) as well as being on ECMO. She also still has all 4 drains in - but little by little other things are coming out. Her doctors and surgeons are very happy with her progress. Thank you everyone for keeping Jennifer uplifted in prayer. Please continue to do so - Jennifer is proof that miracles do happen!

Miracle!

I apologize for not keeping Jenn's blog up to date lately, but we have been going thru some pretty scary times these past few days. After my last post, Jennifer starting having a much harder time keeping her CO2 levels from getting too high - the vent was good for giving her oxygen, but her lungs were so bad that they couldn't expel the bad gases. This would make her "loopy" and much more concerning was the effect that the high CO2 levels would have on her kidneys. If they started to fail, it would have been a deal breaker for transplant. On Monday morning (11/29), she was literally gasping her last breaths. Her doctor decided to put her on a heart lung bypass machine (ECMO) to buy us time - 72 hours. During the surgery she had cardiac arrest - it took 12 minutes to resuscitate her. There was also complications with her left leg - because she is so slender her artery ruptured when they were securing her to the machine. She not only had a big bleed from this, but it left that leg with no blood flow. We were told that there was a good chance that she would have brain damage - again another deal breaker for transplant. Miracle #1 - no brain damage! They went back in and rerouted the tubes in her left leg to restore the blood flow. Miracle #2 - no nerve damage - perfect left leg! At this point Jennifer was elevated to #1 on the transplant waiting list. Her doctors turned down 2 opportunities because they weren't good lungs and because Jennifer had responded to the ECMO machine better than they had expected. Problem was - she still need lungs and time was running short. I am relieved and happy to announce Miracle #3! Jenn went into surgery last night (12/1) at 10:25PM to receive her new lungs! She came out of surgery this morning at 9:45AM. The surgeon told us it was a very tough surgery. Her lungs were the worst he had ever seen - however her new lungs are beautiful! The next 48 hours are critical - please keep her uplifted in your prayers. Prayers have brought her this far and I have faith that they will carry us through the difficult road ahead. Praise God my beautiful daughter has been given the opportunity of enjoying life - something none of us should take for granted.