I guess you can't complain when you get three updates in one day, right? Well this update, is the best of the three!!!
Tonight I get to tell you about the small miracle that has been given to Ally and our family!
Today Ally had an echo of her heart, and CT scan of her chest. Early there was some worry that with having endocarditis and other breathing issues, that maybe a small blood clot leaked out into Ally's lungs. After reviewing the scan, the results were negative, no clot. That though is not the miracle but still an awesome result.
The miracle is that after further reviewing Ally's latest echo, it seems that the large area of endocarditis in her heart has completely gone away!!!!! To even write it brings tears to my eyes. Tears of complete joy, relief, and knowing that finally Ally got the huge break she needed. A break I have prayed for every night since knowing about the infection. I can't even describe the amount of relief this has brought to my mind. For our family it means we can start thinking more about staying home and trying to learn to finally live together as a family, all in one place. For Ashley and Ally, it means less hospital stays, and more time to become sisters.
When I heard of all of these results the first thing I thought was all of the effort to get here to PITT was worth just coming to hear those results! I would travel to hell and back, if I knew the results would keep my little girl healthy!
Thank you for all your continued prayers and support. Without you and GOD on our side, my little girl would not keep getting the miracles of life she continues to receive. Ally and Ashley are bound to one day be great women who will no doubt do many great things for others and their own families. As a father I will do everything in my power to ensure my daughters realize and use all of the miracles that have been blessed upon them, and learn to share with others the importance of how precious life and family really are!
As Jill mentioned in her last update, please take the time today and pray not only for Ally, but also her donor family that made the decision to give our Ally the Gift of Life!
Even though the last 24 hours have been exhausting for all of us, Ally did very well last night on her first helicopter ride from duPont to PITT. After the first 20 minutes into the flight, the hum and vibrations of the helicopter put Ally fast asleep. When we arrived at PITT just after midnight, Ally was admitted to the intermediate ICU. Besides doing well on the flight, once at the hospital, Ally numbers and demeanor were all looking allot better than at duPont. A chest x-ray was done, and at 3 a.m. Ally decided it was time to maybe start thinking about sleeping. That thought crossed my mind many hours before.
After Ally fell asleep, I gathered my work computer, and clothing bag and started my 3 mile hike from the hospital to our apartment on the Southside of Pittsburgh. Not a bad walk, but nothing you want to do at 3 a.m., a ton of baggage, exhausted, and all the while knowing that when you get to the apartment, all you have to sleep on is a floor! Everything in the apartment was cleaned out and the furniture returned, because we thought that after July we may never need the apartment again. Well, here we are a few weeks later and just a few days left to have the apartment and still have not escaped the grips of this town.
So far this morning Ally is doing great. She had an echo of her heart, and has been moved from the IICU to the floor 7 North. The plan for the rest of the day is to get CT scan of her chest. The doctors here think this is just Pneumonia causing ally to be sick, let's pray their right. We really need this endocarditis to disappear!
Jill is planning on working the rest of the week, and will be coming out to Pittsburgh on Thursday night.
Thanks for all the continued well wishes for our family and Ally!!
When we return home, I promise to upload all of the new photos from our week at the shore.
I always find it a little ironic that so many things in Ally's life seem to come full circle. July 28th 2007 we were heading to Pittsburgh, Ally had received her call for organs! I could never describe all the emotions that were felt that day, but the one I remember the most was the fear I felt. The fear of the unknown. One year later and I am struck with the same, crippling emotion....earlier tonight Ally was airlifted to Pittsburgh. Fear of the unknown has once again taken over my life.
Okay, maybe I am being a little melodramatic here, its certainly not like we are in the same boat as we were last year. We are not facing a 16hour surgery and overall Ally's health is about a thousand times better than last year. But still the irony of it all is so unnerving. I certainly had hoped that by a year post -transplant we would be spending a lot less time at the hospital.
I guess I better back up a little (no you did not miss an update, it has been a few weeks!). Since the last update Ally has been doing well, at least until we decided to go on vacation. Last Saturday we headed to the beach for a week. 12hours into our trip, Ally spiked a fever, no other symptoms. Mid week she spikes another temp, and once again bounces back, no other issues. Friday evening, she spikes again, needs a little oxygen but by Saturday morning she is looking good. Then she has a temp Saturday afternoon, Sunday morning, Sunday late afternoon, Sunday night, by Monday morning temp she has a temp of 103, is needing a liter of oxygen and she can still barely keep her sats above 90%. At this point its clear a trip to the hospital will be inevitable:(
Its very difficult for me to admit when I feel uncomfortable caring for Ally but I did not feel it was in her (or my) best interest to attempt a five hour drive to Pittsburgh. I decided to take her to our old stomping grounds, good ole, Hotel duPont! Unfortunately, no one at Hotel duPont feels comfortable caring for Ally either. Oh, don't get me wrong they were more than happy to see her, but no one really wanted to take responsibility for her care. Once she was stabilized Pittsburgh was contacted and arrangements were made for her to be transported. So Ally and Shane are in Pittsburgh, I had to stay home, my first full week back at work! The best laid plans......
As of now she is receiving IV antibiotics for what appears to be pneumonia (at least thats what the chest x-ray shows). I am not really convinced of this and figure when an echo is done we will have a more clear picture of what is really going on. My guess is the area of endocarditis is bigger or that it could possibly be shedding some of its layers of bacteria in turn, either could cause Ally to be sick. I also pray that I am wrong, that this is just simply pneumonia. A summer cold is probably pushing it, so lets just settle for pneumonia:( For now another ICU stay, although I am hoping she will be moved to the floor sometime tomorrow. Wishful thinking is what keeps me going most days!
Today when you pray for Ally's health to be restored please pray for peace and healing for her donor's family. I know the decision they made to donate is the reason I still have Ally here to pray for.
I dont know what it is with summertime, but time certainly does seem to get away from me! At least that sounds like a good reason why I have not been updating this site:)
Ally has been doing wonderful!!! She was finally officially discharged to home last Thursday. Since the last update I had written I believe she had another hospital stay, once again it was for fevers/line infection/endocarditis, same old stuff. The line cleared pretty quickly and the docs thought it was just best to pull the line and be done with any kind of central line! So Ally has been without a line since June 30th, her first time ever without IV access:):):) Can you tell I am excited about this?! No dressing changes, no IV fluids to hook up, no need for precautions prior to bathing or swimming and Ally is even more excited than me! She keeps showing people her arm and saying "no more line, its all gone!"
The only down side to no line is the need for Ally to be stuck everytime she needs labs:( Which unfortunately has been fairly frequent due to some of her numbers bouncing around. She also had a pretty high fever over the 4th of July weekend so we had some blood cultures drawn. Thankfully they stayed negative but her white count was ridiculously high so clearly some sort of infection was going on. I don't really care as long as whatever it was stays far away! I will take her Monday to have labs repeated again and hopefully then we can move on to labs once every two weeks.
As far as everything else goes we have just been busy trying to get settled back into life in Eastern Pa. There is a million things to unpack and organize but we are just doing things little by little. We have to head back out to Pittsburgh the first week in August to see transplant again. Plus Ally will also have another follow up echo and scope done. Also I will be cleaning out whatever is left in the apartment and turning in my keys!
The girls have been enjoying lots of time outside and are swimming a ton. Ashley has been swimming like a fish and I am amazed to see how much she has progressed in the last few weeks. Today she even jumped off the dive for the first time! She also has her first loose tooth which she has been waiting for forever, especially since Ally lost two back in the beginning of June. The days seem to be going by so quickly but we are cherishing every moment big or small:)
Have a great weekend. It is going to be gorgeous here!