Skip to main content

One Step at a Time

Newest Hospital Update:

As you may have been reading, I was hospitalized on last Wednesday (my 31st Birthday). Tomorrow will mark a full week in the hospital. When I was first admitted I couldn't have done a lap around the hallway without a huge cough attack. Today, I can do 3 laps (getting out of breath) with no coughing attacks! Whoot whoot!

I have been posting updates via videos on my Facebook Page. The last one I posted was "Not a Happy Camper" (where I didn't have any hot water for 4 days and I had been waiting for my breakfast for almost an hour and a half).  Good news. They did bring me a new tray right away and they fixed my hot water later in the day. Since my water wasn't fixed in time for my shower yesterday, they had me shower in the (empty) room next door. Haha, I was a little jealous of the windows next door...

(I mean look at that beach!)...

Haha, my room has birds on the windows. The beach is a lot nicer, but that's okay. At least I got a hot shower and since that food tray problem, my meals have been more accurate lately.

Now, for the health update:

Well, I did my breathing tests yesterday (PFTS) and Doc said I'm about 50% improved... I'm assuming since I was down around 15%-20% in lung function that I gained around 8-10% back. Doc doesn't like to bring up the numbers, since I obsess over them sometimes. I'm guessing I'm mid 40s. Doc said we are hoping to have me out by Friday :-) YAY! However, going home on IVs is not easy. So there is a lot more work ahead of me.

I LOVE the idea of being home and seeing Andrew, getting back to work, back to my life. BUT, it's not that simple. When I go home on IVs I still have to keep up with the complete hospital routine. Which means...

5am - take IV out of fridge
6am- 7am- Aztreonam IV runs
7:00-8:30am - albuteral, hypertonic, etc nebs & vest, clean nebs
8:30-10:00 -shower, food, etc
11-12:00pm -2nd set of nebs & vest, clean nebs
1pm -take IV out of fridge & eat lunch, pills
2:00-3:00pm- Aztreonam IV runs
4:00-5:00pm - 3rd set of nebs & vest
6pm take out of fridge IV and dinner/ pills
7:00-8:00pm Tobra IV
9:00-10:00pm unhook Tobra, take IV out of fridge, and do 4th set of nebs & vest
10:00-11pm Aztreonam IV
midnight - unhook & bed!!!!

Wake up at 5am and REPEAT every day! Since Andrew works 12-15 hour work days, it makes it a little harder. Being nurse and patient is tough.

So yes, while I am happy to go home (hopefully) this weekend and be with Andrew. I'm nervous I will get sick or run down trying to do it all by myself... But, one day at a time. Or more like 1 step at a time... Going to do a few more hallway laps tonight before Andrew heads home. Hoping to stay on the right track and get that lung function back!

Andrew works the rest of the week, but I was glad he got the 48 hours here that he did!

Keep you all posted and thank you for your love and support!


Comments

  1. so sad to know you'v been sick,, now you'r okay right?
    I have saw your photos and really interested to know you,,I live in Indonesia, and hope that we have a chance to meet each other :D
    Hope you not sick again, have a healthy day ^^
    If you want to contact me, please give me a new on my private email: agustanto4455@gmail.com

    ReplyDelete
  2. This comment has been removed by a blog administrator.

    ReplyDelete
  3. Thank you everyone for the nice comments, it is good to know people enjoy reading this blog. Have a great week!

    ReplyDelete

Post a Comment

Popular posts from this blog

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...