Happy New Year

It has been a long year, but it ended incredibly for us and included some very tough times, but also some incredible ones. The births of Scarlett and Sophie, my wedding to Angie and Natalia's lung transplant made 2009 a year I won't forget. At times it really did seem like way too much and literally I lived each day one day at a time. All plans and schedules (except the hospital visitation) went out the window.

To be honest, I really don't know how we all got through it intact. Almost unbelievable. So on the eve of 2009 I am looking forward to a new beginning in 2010. A new year with some nice simple goals like being a good father and getting back to a nice active life (I miss that like crazy). Can't wait to start biking to work and exercising on a daily basis again. I am motivated for it again the way I haven't been in quite some time and I can't wait to take Sophie on her first run this spring. Hope you like the running stroller pumpkin :)

Happy New Year to everyone, and wishing you a great year.

John
Sent on the TELUS Mobility network with BlackBerry

She writes

We all knew that Natalia was going to write sometime and she did not disappoint. Well done sis, especially the pictures, simply incredible. Those are scars to be very very proud of.

Here is Natalia's blog.

John

Xmas

Well, Xmas came and went, we sort of cancelled it this year because it has been a long year. BUT we did have an incredible time meeting up at TGH. We all haven't seen each other together in many many months since we have been doing shifts at the hospital with Natalia, and literally can't afford to have too much time overlap. So since Natalia has been doing amazing and she was up for a get together we decided to have our Xmas at the Patient Atrium at TGH. We all gathered at 2pm, all of us including the girls (Scarlett and Sophie), my parents, martin, martin's parents and Angie.

It was really great to see Natalia, see Scarlett and also meet her niece Sophie for the first time. Sophie was born one day after Natalia was put on the ventilator. Natalia had big plans to come to see Sophie right after the birth, even though she was so sick, she wanted to make it to Mount Sinai to see her shortly after birth. It didn't happen quite that way, but this was just as good. Sophie got to meet her favorite aunt in a much much better state and she can't wait to spend a lot of quality time with her in the future (she tells me this every day :)

So overall I can't remember a Xmas that i think more fondly of, it was nice, simple (or incredibly complicated, depending which way you look at it) and it really was what Xmas should be all about. Here are some pics from the day.

Sophie and Natalia

Scarlett and Natalia

Proud grandparents

Patient Court (4th floor atrium at Toronto General Hospital)

New Toronto Star Article

Quick update on Natalia. The last few days have been a lot better for Natalia, she is much better and really getting stronger and stronger. She is more and more mobile and yesterday literally spent the entire day out of bed. This morning she is sore as if she ran a marathon, her calves are killing her today, but this is good pain. So pretty good xmas day (and for those of you that know me, you know I am not a big xmas fan).



Also today is another article by Barbara Turnbull in the Toronto Star. (link to the article here) Barbara also wrote about her own story (link here) and for those of you that have lived in Toronto you certainly remember the shooting that changed her life in 1983. Barbara's life is a true inspiration to me and she has been such a huge part of our journey through this. Her gift to Natalia, the Jesus statue that was given to her 25 years ago while she was fighting for her life is so incredible that I don't have the words to describe it. I am sure Natalia will keep good care of it and pass it on when the time is right. Thank you Barbara.

Recovery

Quick update on Natalia's recovery. Natalia is making big strides everyday and getting better each day. Some days are still very tough with setbacks, some big some small, but overall her recovery is moving in the right direction for sure. She struggles physically and emotionally with the scope of the recovery, but the most important part is that the lungs are working great. She breathes the way she hasn't been able to in a very very long time. Physically she lost a huge amount of weight through all this and now is starting to gain that wait back and this will help with getting back on her feet. She does a number of physio sessions a day which include exercises in the bed and also walking around the 7th floor transplant unit with the help of a walker. Each day is better especially when you look at the progress a week at a time.

One of my highschool friends who is a transplant surgeon in the UK describes having a lung transplant as "being hit by a bus", if you survive and the lungs work, all the other parts that were hit to need to recover as well. Emotionally this has been incredibly hard on Natalia. She knew her CF incredibly well, understood how to battle against it, even though it was a battle she couldn't win. This is all new, new medications, new problems, new drug side-effects and getting a handle on all of it will take her some time, but I have no doubt that she will get through it.

For me, this is literally the first time in a very long time where I am not worried about her immediate survival, I can see the lungs working, her not struggling for each and every breath and that is simply incredible.

1 month

So Sophie just made it through her first month. All is good so far and angie and I have adjusted to life with her in our lives. She is growing and changing so quickly and our doctor is happy with the progress. Not going to start quoting you any weight and height statistics since I don't know what percentile I am in for weight and height. All is well and we are thrilled and so far she has been a really good baby so we feel quite lucky about that. We have also been given the green light to feed on request, so we don't have to try to feed her on the 3hr schedule anymore, so maybe we will be able to sleep through the nite soon (scarlett has been sleeping through the nite from month 2, but I don't think we will be this lucky).

So she is still cute and blond and growing like a weed.

John

Normal... a clarification

I often write the blogs as I sit by Natalia's bed at the hospital. If she takes a nap or is sedated, I have time to think and write. I don't often re-read any of the posts, I probably should, but don't. Last nite, I was reading a number of blogs that I follow, and I happened to re-read my latest Natalia update. I didn't like the way it came across, especially the part about things being "normal". I really didn't mean to imply that our life is not normal right now. Normal might just not be the right word for it. I am fully aware that a lot of the readers of both mine and natalia's blogs are dealing with exactly the same situation as we are, and I am sorry if my words offended. I hope they didn't, but let me clarify anyway.

Normal is different for everyone. Our normal has included CF and now a Double-Lung Transplant. It is what we know. I didn't mean to imply in any way that our life is abnormal, it is what it is, and we just roll with whatever comes next. Normal is the wrong word here since it is hard to define and me implying that normal doesn't include hospitals, surgeries and illness is just the wrong statement. Actually, to be honest I think we have in my opinion the most normal life ever (especially Natalia) and to be honest we don't spend too much time thinking, what if... So this to me is as normal as it gets.

Sorry to all the readers.

John.

Stepdown

It has been a week since i wrote last, sorry about the delay. Just been taking it easy and enjoying the last week of my break from work. Sophie is now 3 weeks old and i have to face the reality of not staying at home for year (which i would love to do). I am excited to get back to work since it means that life is returning to normal a bit. Not fully normal, since that will mean Natalia is not in the hospital. I will consider life to be normal when anyone in the immediate family doesn't visit a hospital on a monthly basis, so 1 full month without a hospital visit. It has been years since that has happened and it might be quite a while until we achieve this, but it is a nice goal to have. A quick estimate for this year is that Natalia has been in the hospital for the better part of 5-6 months this year and my mom, dad, martin, angie and I have been there every single one of those days, so a month without it would be epic, we wouldn't know what to do with all the spare time :)

So as you have been reading on natalia's blog , she is now in the Transplant Stepdown Unit at the Toronto General Hospital. Stepdown is on the same floor as the ICU she was at before and immediately after transplant. The main difference is that there is less staff here because the patients do not need as much support. So now she is off the ventilator full time, has been for quite a while and all her vitals are good, stable. The progress is slow, but since she was in such as critical state before the transplant, it is probably expected. She still has the tube in her throat from the traech, and the tube will be taken out in the near future and this will enable Natalia to talk. I think this will make a huge difference for her. As any of you that know Natalia (or me for that matter), we like to talk :) I think it would be hellish to not be able to say a single word for almost a month now. You can see it in her eyes, she has so much that she wants to tell all of us, but she can't. So we communicate by head nods and she writes on a piece of paper for us. Actually for me, it is really hard to gauge her recovery by anything, except her writing. When she was in ICU prior to the transplant, she tried to write on a piece of paper, but it was so difficult to read the notes, we kept them, and i can't wait to laugh about them with her in the near future. After the transplant, she was having a lot of trouble holding the pen, but the notes were a bit better. Now she can hold that pen and can write a note quite quickly. All the O2, CO2, saturation, heart rate, breathing rates, white cell counts, blood sugars, etc, don't tell me as much as how she holds that pen and writes on that piece of paper. So each day she looks a bit stronger, moves a bit more and writes with a steadier hand. I will take that.

She is also doing a lot of physio with the staff here. We met the physio staff a few months back when I took Natalia to it twice a week for her physio with the other folks on the waiting list and also some of the people post transplant. You could clearly see on which side of the operation each person was, either on oxygen, working so hard to walk on the treadmill or doing the exercises with a smile on their faces. Can't wait to go back to that room and work with Natalia through those exercises. Just can't wait.

So that's about it for now, slow and steady, but progressing each day and that's all that matters.

John.