The nursery, and her name.

So, here is it. The nursery. It's finally done and we love it. It's the most magical, cozy, most amazing room in the house. It's princess-like with barely any pink. It's grown up but certainly a baby room. Most of the pieces she will love until she goes away to University....I have a feeling we're going to fight her on taking the canape with her and the ottoman. And that's what we were aiming for, something that could last and last, with changing tastes and growing bodies...

So here are some pictures:

(when you walk in)

For those of you that have really good eye sight, you will see that there is a name on that brown blanket. My mom made that, along with many little cute things for our baby girl, and it's really beautiful.

So, the name that we are going to name our little girl is, Scarlett Anna Ritchie. We think it's the most perfect name for her. It's unique, pretty, strong, as she will be. Once we found it, we knew. Anna is my middle name, and was always one of our favourite names for a girl.

I decided to let everyone know, since we have decided on the name and now more and more people know and I did not want it to come out in any other way. Plus, we call Scarlett by her name around the house, so I just wanted to continue to call her by her name. Especially since she will be here so soon.

Here are some more pictures:

(the change table)

(the crib)

(canape and ottoman)

(her knitted precious things)

We have more pictures for those that are interested, just go to this facebook link:

http://www.facebook.com/album.php?aid=101291&id=541641274&l=9c38c3e986

Thanks you everyone for being there for me along this long road. Little Scarlett is almost home, and I cannot wait to meet her, have her home, and introduce you to her!

When the swine flu is a good thing.

Okay, so obviously the swine flu is not a good thing, but in any way today it kinda was. In a really strange way.

First off, I am home. After 1 night and half day at the hospital, I am home.
Second, I feel fine. Fever gone, no cough, fine. May be I went to the hospital and my infection got scared and just disappeared like magic. Poof! Well, no, but it feel like that doesn't it?

So, to explain why I felt so terrible, and 24 hours later I feel totally okay (or back to the stable I was) is kinda personal, but I feel like my blog followers can handle it. The day that I had those crazy fevers, and I felt like my world was going to come to an end, that night, I got my period. Seems innocent enough, but I have noticed that during the last year or so, my periods have literally made all my CF symptoms a million times worse. In fact, so much so, that the past few hospital stays have been a few days before my period, or the day of. I am starting to see a pattern. It was yesterday when I was talking to my doctor did I mention to her that I thought there was a connection. She said, that not only does a menstrual cycle sometimes cause non-CF women to get fevers, but CF women often have terrible CF setbacks when they get it. Naturally when I get a fever I think infection, and it freaks me out, and I tend not to connect it to anything else. Since I don't have a increased cough, higher blood sugars, and all the other factors that are telling of an infection, it's most likely that a few days during and the day that I get my period my body feels like it's in total free fall. And it seems to be getting worse, perhaps since I am so weak generally. Anyhow, since I was okay the next day, and today was even better, this is really really possible.

Since I was already at the hospital, we decided to switch my Iv's to a combo that I really like but that I need to start in the hospital due to a possible allergic reaction. I thought since I was already there, it was a good time to get that done, stay for 3 days, make sure it was okay, and go home and continue on. Fine.

Today, however, everything changed. I was waiting for a bed in ICU for the desensitization, when my nurse came in wearing this whole gettup...yellow gown, mask, goggles, and gloves. She changed my medication quickly and then told me that my doctor was going to come in and talk to me about why she had to be dressed like this. I was instantly freaked out. When she left I had a total freak out. My brother, Angie and Martin were in the room with me and we all had a really hard time waiting for that doctor to come back. Since there was a cepacia (a deadly bacteria for CF patients) outbreak last year at our clinic, it's still fresh to us all that it could happen to any one of us. And it's really scary. Plus the reality that for most people that have cepacia, lung transplant does not work. The terror of this infection is profound in our community. So, we waited for a while until they came and told us what was happening. By that time I was totally a wreck as I came to the conclusion that it must be me, the worst case scenario.

Alas, we found out that this had nothing to do with me. There had been a patient on our ward 6 days ago that had H1N1 (aka Swine Flu) and now that patient was back in the ER. Since she was on our floor, there was a bit of a panic. There was a lock down, and we all got TamiFlu for 10 days. The funny part (only funny to the 4 of us in the room) was that when the doctor told us about the H1N1 flu, we were all thrilled! We were so terrified about cepacia. He apologised that the nurse gave me the impression that this was particular to me, knowing that as CF patients (and due to the outbreak that we had) we are very sensitive to such news....it was certainly not the way to deliver that news.

Since I was at the hospital for a specific reason, and I was feeling well, the docs and I decided that I should just pack up and go home. Everyone wanted me out of there too. So, home I went. I was there for less than 24 hours...but I am SO happy to be home. I will continue to do the IV's that I am on now, and when things calm down at the ward, I will go in and get desensitized, since these IV's will have to be switched in time.

Ahhhhh home. Fantastic. Enough drama for ya?

Next post, nursery pictures!!

Yesterday mental break down today hospital room

So I had a total freak out yesterday. Total. Freak. Out. I woke up this morning with no fever, but kinda warm. So I know something is up, I need an IV switch up, but yesterday I thought it was the end. Today, I think I need different meds. Hmm...though I am at the hospital (and I really really hate this place!!) I am having a much better day.

I don't know what the plan is yet. Which drugs to get me on. We are having some discussion right now. No one is listening to me, as per usual. I know the combo that I want to be on, the one that works well, but that's how it works. I just want to get my drugs and go home. That's all.

I am sorry I scared people yesterday. I just let things out, and I knew it would freak everyone out. I have those moments. They are real, but they are not at the same time. I have more faith than I do fear. And by faith I don't mean only in a higher power, I mean in medicine, in science, in timing, in my body, in myself. But sometimes I am too sick and tired, and those negative emotions that are always looming get out and it is such a mess when that happens. I doubt everything in those moments. I think about them later and wonder, where did that come from, it was not me, like the devil sneaking in and making me weak and negative. I know those moments are natural, normal, all that, but I hate them. They do not help the situation at all, in fact they make it all worse. Those thoughts I hate having so much.

So far that's it. I hope this is a short stay. I just want to get those meds quickly and head home on home IV's as I was. I just want the right drugs for me. That will take some work I think.

One long fever

Today was a bad day, filled with a fever that lasted about 6 hours. Yesterday I had a mild one on and off, and then today I woke up with a 37.1 which is not officially a fever, but I felt miserable. By noon it was 37.8 and was up and down like that all day. At the worst of it, it was 38.06 (after Tylenol) and I have not felt this miserable in a long time. Emotional and hot, with everything spinning around me. Just terrible.

My mom went to the clinic to get my meds, and I asked her to see if she could find my doctor and ask her what we should do. I knew it was time to switch these IV's, and I would have to do it in the hospital to make sure I was okay. Dr.T found me a bad for tomorrow, which is great. No ER. So there we have it, I was hoping to do all the waiting for my new lungs at home, and I'm not even on the list yet and I'm going back to St.Mike's. Not the best of days.

For the last week or so, may be two, I have been very down. I have been having a hard time with all the set backs with tx, and with all the infection and how quickly my CF has become too hard to manage. I have not shared a lot of this on my Blog, but I am now. I feel that it's my outlet, and I have to.

I like that everyone feels that I am very positive, and that I am getting through this so well, but I don't feel that. I am so defeated right now, by all of it, it's hard to stay positive. Especially when I have a high fever and think the world is going to end. Sometimes I feel myself getting used to things that I do not want to get used to. Getting used to so much loss, that it all seems like a blurr: The things that I have lost versus those that I have gained. Those moments scare me, when you start to think that may be all the fighting that I have done for all those years to have a normal life mean nothing, when in the end I am still the girl in bed all day with the oxygen tube, the IV coming from the Port in her chest, the nebulizer by her bed. I know it's all worth it, I know that. But sometimes, in those moments when I am so sick, in pain, and fever, and emotional defeat, I just don't want to fight for any of it. Those moments are rare. But lately they have been more and more often. I guess the more sick I get, the more it's about the pain, and about being terribly sick than anything else. I hate those moments.

Many people that have had a lung transplant have told me that this road would be a difficult one. I didn't know however how difficult it would be. If someone told me in December what would be happening now, I would not have believed them. The fact that I am still told things will get worse before they get better, well, I don't want to believe that, but I do. Experience tells me now, that this is unlike the battles that I have had to fight before. The ones that I walked away from strong and victorious. I think I have finally come to grips that my lungs are no longer on my side. They can no longer sustain life in my body, and the only way that I will return to life is new lungs. I guess I have been hoping for the past little while that things would still somehow improve and I would gain a few more years without tx. It's happened before, and people keep telling me that. But I know it's not the case. I can feel the heaviness in my chest. I feel that pressure under my ribs, I feel their weight and how hard they are trying to work. For someone like me, that always fixes everything, I cannot fix this. I can do all my treatments perfectly, and keep my blood sugars perfect, like I always have, and this battle is lost. I put terrible amounts of pressure on myself to fix this and I can't. I look at it as defeat, when it's just a fact. CF kills people. Yes there are things we could do better. Do our treatments, work out, eat well, keep our blood sugars down, and weight up.....but for some of us we do all those things, and it still takes our lungs away from us. Just a fact.

As much as I want to forget how terribly hard this time was, I never ever want to really forget. Since I know that there will be a day, may be 8 months from now, may be a year from now, when I will worry about every day things. And it's then that I want to remember, and think, wow, I went through that. Shit.

25%

Clinic was long, as usual, but it was not terrible. I got to have a pretty long meeting with my doctor, Dr.T. We don't always get to see her, so it's nice when we do.

My lung function is 25% (0.89L) which is up 3% from last time. My saturation was really good, which was a bonus. Dr.T did not know about the delay in my being listed (she got note from TGH that I was already on the list....since they have not received the memo yet). She was disappointed for me, but expressed that it was good to get this out of the way now. She also expressed that at this point my care was about keeping me stable enough to get to transplant in the best state I can be in. Meaning there is little they can switch around or try, it's just about communicating with me and asking me what I feel about staying on IV's or seeing if I can get off them. Sometimes, Dr.T told me, taking 3 steps forward, and then 4 steps back off Iv's is not worth the trouble. Especially since once I am listed, being a status 2, 6-8 months wait and I will have those new lungs. I expressed that I wanted to stay on the IV's, and she agreed. Especially since the next 8 weeks before I am listed we want to be super careful as to not let me slip too much.

So, I will stay on these IV's for as long as I want (or need) to stay on them. So far I have been on them more than off them (in 2009) and that is a strong indication that I may not be able to get off them. This is no news to me. I spent 45% of 2008 on IV's.....

The visit was good. Dr.T was reassuring that things look good, not to panic, to take it easy and just wait. It made me feel that I am being watched and that she is not worried. I am calmer when I see that she is calmer. Wait, be calm, it will happen, just wait.

June 8, 2009

It's been a while since I posted. I guess nothing has been going on really. I have been feeling pretty well, with the odd fever here and there. Not a high fever, just slightly elevated, but enough to feel tired and sleepy and hot. So, not terrible news, and not really good news.

We're waiting for me to get that second vaccine. June 30th I'm going to get that. Then waiting 4 more weeks. I have stopped thinking about it, since I can't do much about it. When our little girl comes, I will be listed, that's how I think of it now. All in all it's not too long now, not at all.

Tomorrow I have clinic, which is quite tedious since I know I am no better, may be worse, and I will remain on the IV's. So I'm only going so they can refill the script, and we can do it all over again....again and again.....well better not to think about it.

The nursery is almost almost done....soon I will post pictures. Just the chandelier has to go up, and we're done!! Just like that. Everything is also ready. The car seat, the pram, the bottles, the diapers, the crib, the sheets, the bassinet.....so much stuff! But I think I didn't get a thing that I will not need. If something is missing, we can always run out and get it. So we are ready, but know that our little girl has to take her time and come when she's ready. It's not time yet, but soon!

Good news, then bad news.

Monday morning I got a call from TGH that my appointment to be listed will be June 9th. That day I will sign my papers with the surgeon, get my pager, and be listed officially. I was happy to get that time. A week from today. Very good.

Well this morning, I got some bad news. Threw me for a loop, to say the least. The same lady called me, and said she had some conflicting results in my blood work, that will not allow me to be listed for 8 weeks. My heart sank. She told me that they found out that I was never exposed to chicken pox. Actually I was exposed many times in my life, but I just never got it. At first the surgeons thought it was nothing to worry about, since the stage of my illness was severe enough to list me quickly. Then they learned that I am about to have a baby, and a young child in the house, and me being immunosuppressed (this is in the future when I am at home with a 4 year old with my new lungs) will be bad news. So, what this means, is I have to get the chicken pox vaccine. There are 2 to get, 4 weeks apart. 4 weeks after the second vaccine, I have to get blood work and then I will get listed.

It was not a good conversation. She felt badly, especially since she just told me that the surgeons want to get me on that list quickly due to my health. Now I have to wait 2 months. It's a bit of a heart breaker really. I can't really believe it.

It looks like I will be listed at the same time that our little girl is born. I am quite upset about it, but there is nothing that we can do about it. I always think about the various ways that my CF clinic can make this process better for us. It just seems like there are a few small things that can be taken care of much earlier in life, when I was better and when 2 months did not mean this much. I could have done this vaccine 2 years ago, 10 years ago.....if I just knew. That, along with my rare blood type, I think I should have been listed sooner. I should have received a medical degree, and been my own doctor, since that's what it ends up being anyhow.

Anyhow, I can't dwell, going out to get my chicken pox vaccine.