Skip to main content

Being in Hospitals= More Blogging....Bored!

Blogging increases dramatically during Hospitalizations:

Gee, I wonder why that is? oh, yeah...Because we get bored easy. Usually my boyfriend is here with me, but today he not only had school, but work too. So he won't be here until 10pm ish. So what did I do today. Soooo...bored.

(pic of Andrew and I from a couple weeks ago)

 Today, I did homework and readings for school (I go to Dominican Univsersity for Grad School in Social Work). I love it and luckily, my profs are all pretty cool. One, my favorite prof. (shh! Don't tell), was very concerned.

I also, did the usual, watched TV, a movie, walked around my room a couple times (I'm in isolation, so I'm not allowed out.) And then came Internet googling and facebook stalking..But that got boring too. So then I decided to read lots of CF Blogs, meet more CFers, comment on CF pages, etc and focus on networking in the CF Commuinty. It was so nice! I meet some great CFers, read some amazing blogs, gave: advice, and received advice!  Which I loved it is great to connect online and it is so important to CFers (I wrote a blog about how important online support is to CFers -read it here!)

So now to the fun part. Hospital story time:

1.) As you may know (if your a facebook friend)... I love my Doc. As I stated on FB:
"My doctor is so awesome that today after I was admitted he popped by to see me, before going home (note: his father is on hospice and this morning it didn't look good) Not only, did he still come to see his patients in the hospital while he has this family crisis, but he said "I think it is important to come see you guys, as you are my family as well" and gave me ...personal cell to text him if I have any ?s or need anything. AND while with his family and father, he has already texted me once this evening to make sure I was doing okay. him. All CF docs need to be trained by this guy."
Well, today one nurse when she was coming on shift and my day shift nurse was giving her the "run-down notes"..the new night shift nurse, mentioned that the other doc (not my CF doc, but diff doc.) said that I had a history of MRSA! I was like, "Wha???!" I told her she was mistaken, I have never cultured MRSA or anything or than Psuedomonias Aeruginosa- which cff.org states 73% of CF adults have P.A too. But MRSA, um no never had. So I used the handy little cell number doc gave me and askes him about it.
His reply: "No. I don't have MRSA. She most likely assumed that, since I'm in isolation, Which he puts me in when other CFers are in this wing too. But, no I have never cultured MRSA...."
to learn more about germs/ CF specific bugs check out Cff.org's site here!

Whew. I don't want another bug, P.A has given me enough trouble. Anyway, thankfully, I had Dr. B's cell number to figure out that little correction.

2.) New nurses...
I have loved my day nurse, Tammy. 1. Because I have an amazing Aunt with that name :-) and 2. She knows her stuff. Asking me the first day I was admitted how many enzymes I took, if I had CF related Diabetes, etc. She knows CF! However, my night nurse last night...as nice as she was, she was new. I could just tell. She seemed nervous. Also, she only poured two of my cans of feeding into my bag to run in....Then in the middle of the night I woke to it beeping, called her, she came in and put in the other 2 cans... problem was the first one had run completely through, so the whole line was pure air. Now granted, air isn't life threatening in a stomach feeding tube, unlike iv line. But who wants all that air in their stomach the next day...oooooh, ow, not me. So I unhooked it from me and re-primed it myself, until the new cans of feeding were all the way through. Oh brother!
But then I found out apparently, in children and infants, they are only allowed to put two cans in at a time, for infection reasons...Okay, well. put all 4 in with me, because I have doing it like that for 15 years...Wow. Over half my life I have doing stomach feeding. I have never had problems, but I bet those babies and kids are getting tummy aches if nurses aren't priming after the first set of cans....

3.) I got visitors today: Well, the Chaplain, Child Life Activites Director, Physical Therapist, and Nutritionalist. Nutritionalist pre-ordered me mixed berry smoothies with high cal protein powder for every night at 8pm. :-) um, yum!
Overall, not too bad. AND my wheezing has decreased, I'm coughing still, but no more asthma attacks, and I'm still gaining weight. 104 lbs today :-) Let's keep it up and hope my lung function follows my weight and climbs higher too!

SOOOO excited to Andrew to get off work and be here for the wknd with me- watching Tangled and BSG marathon!





Comments

  1. Hi Cheriz, thanks for stopping by my blog today. I left you this comment not sure if you will read it on my blog but I decided to post it here as well. I'm glad to read no MRSA and your gaining weight. Don't worry about that PFT score as long as you are feeling better each day that is what truly matters.

    Thanks for stopping by Cheriz! We already miss the beach. We loved the sound at night. Also, for me getting beat by the waves really helped loosen the mucus up. Maria is AMAZING thank you! I don't know why she chose me haha. My compliance streak is pretty crazy considering I will not let myself miss a single treatment. I have done vesting at 3 am. I only neb HTS twice a day morning and night. I have been antibiotic free for a year and PA free for over a year as well. I honestly have to say that is because of HTS. Like I said I am a boring CFer. Hahaha. I know peopel who do 5 or more nebs a day and that would be nearly impossible to get them all in and work full time. But I guess it could be done. So I suggest to you to start out with your first day of nebs and get those all in. Then make it a week and then a month. It's fun to keep track. My goal is at least a full year. We will see. Keep me posted on your compliance!! I hope you feel better and get out of "jail" soon :)

    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...