Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Wednesday, August 31, 2011

PICC Tales- the last full day (Picture heavy)

I promised pictures, and here they are! Time to finish out my PICC tales for this 2 week session.

So since I've been home, I've had my dressing changed twice. Not fun at all. Each dressing change, due to skin complications, sent me to the edge of tears/passing out from pain. One of my stitches has also been bleeding during all this time and that caused a lot of pain when it had to be cleaned too. My home health nurse Bridget changed the dressing on Thursday, because I developed a spot of something underneath my dressing and it needed to be freshened up. By that night and Friday morning, it was completely ruined and needed to be changed again. Turns out my skin had blistered under the dressings and those blisters had popped under dressings #2 and #3 and required a dressing #4 on Friday. Luckily, this last dressing has lasted. My overall rash is completely gone leaving me with rough skin on my arm and my face, so I'm getting the spa treatment tomorrow after my PICC comes out! The only place that still itches is under the dressing where it hasn't had air to heal.

The broncho-spasms have quieted down thankfully and have not been as bad.

One thing I haven't mentioned that some of you know already is that my parents left the country last Saturday and returned this Saturday! They had their 35th wedding anniversary cruise planned out for months and my hospitalization almost made them cancel! Luckily, after lots of discussions, we worked out a deal where I do the IVs myself (see the picture of the extension below) and my sister-in-law and nephew live with me for the week my parents are gone to help get me through. I'm glad my parents didn't cancel their cruise and trust me enough to let me check myself out of the hospital on Monday and take care of my IVs while they were gone. It was a huge step in me being independent (as if I wasn't already lol) and them trusting me with my health even more.

So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.

Warning: I do have pictures of the exposed PICC (well almost exposed) and blistered skin.

My 3rd dressing, ruined thanks to my blisters.

The blistered skin and uncovered PICC (with Biopatch still on)

The 4th and final dressing- layers of folded gauze to protect the skin and the PICC

The line extension- what's made it possible for me to be independent this week!

Two of my meds in the compression balls- Tobra (L) and Fortaz (R)

Zyvox- my third antibiotic which had to be hung on the dreaded IV pole

I thought I got to leave this thing at the hospital.... nope. I did learn how to set up an IV bag and line though, which was pretty cool.

This was the cool device that set the mL/hr rate. Very cool.

Mom made me this cake when I had 3 days left!

And on a completely different note, I got my new Vest today!

I decided not to take pictures of the alcohol prep pads, the saline flushes, and the heprin just because it was pretty standard. But those have been very common sites at my house since I flush before, after, and in between each IV dose, clean with the alcohol prep pads in between everything, and hep lock with heprin after each IV session ends and flush the unused port for that day with saline/heprin each morning and night. Since this PICC had duel ports, I had to switch them out each day and replace my extension every 3 days. So much to remember but once it became routine, it was no big deal. However, I am very tired these days but I think once I get back in my normal day routine (you know, the one that DOESN'T involve IVs) I won't be so tired! My PICC pulling appointment is at 10am tomorrow (Thursday) morning and my facial is that afternoon. I'm almost done!

See you on the other side!

Wednesday, August 24, 2011

No pictures still...

Shame on me! I haven't gotten around to taking pictures yet. Still adjusting to home life.

7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.

My rash is still just as itchy as every.

I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.

Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.

Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.

Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.

I have guests tomorrow and my IV is almost done so I guess I'll call it a night.


Monday, August 22, 2011

Home IVs- Night #1

Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!

I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.

****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****

I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.

While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...

Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.

I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!

Thanks for reading, as always.

Hospital Days- Monday

Well!! This post is a lot different than I expected it to be, in a good way! I'm writing this from my couch at home!!!!!!!! (That sentence can't have enough exclamation points on the end of it) Y'all, I'm so excited to be home. So so so excited!!!! I now have my dog home from prison (boarded at the vet) and my afternoon dose of my IV drugs completed. I'm all over this, no problem.

We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.

I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.

Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!


Sunday, August 21, 2011

Hospital- Quick Sunday Update

No real news here. Waiting to see the doctor on the results from the levels test again after they changed the dosage. My rash hasn't improved any. I think it may be getting worse....umm yep it's worse. And now even itchier!! At least I have hydro-cortizone cream to help.

Still hoping/praying I go home on Monday! I'll post updates when I have them, of course.


Saturday, August 20, 2011

Hospital Stay- Saturday

I have developed a skin allergy to the clear dressing for the PICC line. So as of late last night and now still into Saturday, my eyes are puffy and my left arm (where the PICC is) is covered in red itchy bumps. They gave me benadryl last night and today but it's not helping too much. They also changed the dressing to a more cloth mesh dressing instead of the clear adhesive.


New dressing

My tobra levels came back and they were too low. So instead of getting a tobramyacin does every 24 hours, I'm getting a dose every 8 hours. So now I have 8 antibiotic doses each day instead of only 6. They are going to check my levels again after 3 more doses and if they are good, I *might* be home by Monday afternoon, Tuesday for sure. If the levels still aren't good, I have to wait another 3 doses to try again. Each retry is two more needle sticks in my arm.

I'm getting a little homesick.

I was a specimen for the med students today. It's a learning hospital. I don't like that. It was a serious blow to my self-esteem today. After talking to Mom some, and getting a nice shower, I feel a little better.

I'm standing and walking as much as possible today. For instance, I'm standing up while typing this post. I'm so sick of being in that hospital bed. I know that it's not helping me get better, so I'm up and about now. Standing for about 10 minutes has already helped me feel like I can get through this feeling good about everything. I'm fighting.


Friday, August 19, 2011

Hospital Days- with some pictures!

Well these last few days sure have been eventful! Let's recap:

Wednesday, August 17, 2011
I was admitted on Wednesday and immediately had a peripheral IV put in my left arm. I was later started on the doses of my 3 antibiotics: Tobramyacin, Zyvox, and Fortaz (I'm mostly sure on these spellings!!). They are taken every 24 hours, 12 hours, and 8 hours, respectively. (6am, 8am, 2pm, 6pm, 8pm and 10pm) Oh boy am I going to be busy when I get home taking care of all of this! Other than getting moved in and settled, Wednesday was pretty quiet. Oh, I did have a chest X-ray taken too. I mentioned before that one major difference is the care that the RTs take with each patient doing treatment and hand CPT 3 times a day. So I spent my evening treatment being tag-teamed by two RTs beating me, and while I'm not yet again really used to hand CPT, it went well.

(The peripheral)

Thursday, August 18, 2011
Rise and shine at 4am thanks to a youngin' across the hall very unhappy about something. Did I mention I love being on the ped's floor?? No I really do, but that's the one downside... screaming babies!! Oh well. It's a small price to pay. I slept poorly until 5:30 when a familiar face walks in my door for morning CPT! Remember Gaelin, my friend from middle school, high school, and my freshman year roommate? Her brother-in-law is an RT up at this hospital so he came to visit/beat on me! It was quite a nice surprise and I was glad to see him. Around 9am, I was asked to move rooms! Turns out I was placed in the only available room that day and it has special equipment, so they like to keep that room open when possible. Mom had to work out of town on Thursday, so I thought I was going to be alone most of the day... boy was I wrong! Visitor after visitor after visitor! It was a ton of fun. Bad part of the day? Getting my PICC placed. It was so much simpler at the other hospital that I was spoiled! Here, I was a wreck. And post-PICC placement, I had to have a chest X-Ray again to check the placement. I was sick in that room due to stress, anxiety from the PICC procedure, and not eating enough that day. Luckily, I had one of my best friends waiting for me in my room when I got back. The right visitor will do wonders.... I also had a 3rd year med student drop by, an old friend too! He just happened to be doing his ped's rotation this week.
We were hoping that by my evening antibiotic doses, the radiology department would have been able to review my x-rays and I could have used the PICC, but the server was down (ahh, the digital age...) and so I had to use the peripheral again. It hurt, a lot. My veins were screaming, but with a little help from a friend, I made it through another dose. The late evening brought good news of using the PICC, so they flushed it and pulled my peripheral (YES!). I slept much better last night.

(the PICC)

Friday, August 19, 2011
I was awakened at 5:30 again by my same friend RT for my morning treatment. 6am meant antibiotics, but since I was using the PICC, it didn't hurt very much. Today has been very lazy and quiet, I've actually enjoyed it. After mom and I chatted with the case worker about getting home IVs set up, she went to work. I've spent the afternoon/early evening so far catching up on TV shows, writing this post (which is probably as long as my last several posts put together!), and veggin' out until my aunt gets here with my Buffalo Wild Wings dinner! No hospital food for me!!

My PICC pull date is set for Sept. 1 assuming my Tobra levels are good. They took the trough level at 2 and the peak level will be taken at 9. Prayers for the right numbers so I can go home on Monday! I miss my puppy and my house, even though I'll do there what I've been doing here: nothing. I'd rather do nothing at my house than at a hospital. Although I will say, as hospital experiences have gone, this one has been pretty smooth, and I'm so grateful.

Have any of you had the PICC with the two ports before? What's the point? Everyone I've asked just tells me "It's the exact same as the single one" so why the extra hardware? Just curious.

I'll keep you updated!

Wednesday, August 17, 2011

We have WiFi!

I knew there wouldn't be a surviving hospital without WiFi. Ta-da! An evening post.

I'm on 3 IV antibiotics this time instead of two and the current one is making my face tingle. Weird. I just looked it up and that is a side-effect, so I'm not worried. lol

This is a new hospital for me but it's working out really well. So far so good. They even have, get this, HAND CPT 3 times a day. I'm floored. I'm used to RTs dropping off a Vest and leaving. This is much better, medically. And the people have all been really nice.

My arm still hurts from my peripheral (I'll get a PICC later) so I don't want to type much.

Although I'll leave you with this: Fancy Jello



The "when" of my hospitalization has been decided: today! I'm glad to finally have a plan in place, it helps with my stress levels. Also, due to some already set plans, I will be more in charge of my home IVs than ever before. I know I can do this, so I'm not nervous.

I'm going to a different hospital than ever before, and I don't think this one has wifi (booo...) so plan A is not to take my computer with me. If they do have wifi, then Mom will bring it later. Either way, it's time to restart my "No IVs" stats from the 2 1/2 years I went without back to zero. I had a good run and planning this next run to be even longer than the last.

So if there is no wifi in my room, farewell for several days! If not, I'll post tonight probably!

Keep me in your thoughts/prayers if you don't mind. I need all the help I can get!


Tuesday, August 16, 2011

First update-

Hospital and IVs are for sure. "When" is the question. Family meeting tonight. I'll let you know when I know when I'm going in for sure.

Thanks for everything dear friends.


30 minutes

30 minutes until my appointment starts. Nerves are getting the best of me.

Here we go.


Saturday, August 13, 2011

I had a very frustrating night last night. At 6:45 Saturday morning, I awoke doing my absolute best to ignore "the cough." You know, the cough that means I'm coughing up copious amounts of blood. Maybe, in my delirious state, if I ignore it, it will go away. WRONG. But the real kicker in this situation is that I'm not home. I'm with family in Austin, TX, sleeping on a couch. Waking up scared, sick, and still drowsy, I'm not thinking straight. Not to mention I'm really nauseated from coughing so much/coughing up blood/swallowing more blood because I have no where to spit it out. I start an albuterol and realize that I am going to be sick. Luckily (I think) I wasn't, but and I finally finish my treatment and fall back asleep. However, the most frustrating thing about this situation is that I'm NOT on antibiotics, which in the past has been the only time this hemoptysis has occurred. And I took my Vit. K that day. So now I'm actually clueless as to the cause of this, and that scares me. Now I'm planning ahead though. Along with my nightly glass of water, I'm keeping an empty cup next to me in case this happens again tonight... I really hope not.

My doctor's appointment is in 3 days, and to be perfectly honest, I feel awful. Just terrible. I'm afraid I haven't improved enough to my doctor's satisfaction and I'll be sent to the Hole for the first time in almost 2.5 years. I've actually come to terms with it, really. Worst case, I'm right and I'm not shocked. Best case, I'm wrong and I'm thrilled I don't have to go!! My only real hope is that I'm testing out hypertonic saline for the first time at my appointment so maybe they'll let me slide again, but I think I've slide by long enough. Tuesday will be the test. Obviously, I'll let you know the results.

On a lighter note, I'm getting some good quality time with my family this weekend. I haven't seen this brother/fam since our May crawfish boil so it was long overdue. And my niece is growing so quickly!

OH! I'm done with summer school!!! I couldn't be happier to have two more classes out of the way. And with one of those classes came the idea of a different future career than originally planned, and it's worth looking into! I may be doing grad school instead of PT school! May. I don't know what the future holds yet, obviously, but I like having serious options. We shall see!

My family lately has spent a lot of time watching old home videos. I've been watching videos from when my oldest brother was crawling to when I was around 9 years old and everything in between! Birthdays, holidays, sports, and then just those fun times playing as siblings at the house. It really was fun seeing people/pets who have passed away that I miss dearly and watching the memories I don't have, or times when I wasn't even alive! It really has been fun watching these. Thank goodness for VHS-to-DVD converters!!

I guess I should call it a night here soon. I'll keep you updated on my doctor adventures on Tuesday.


Tuesday, August 9, 2011

This week

This week, my last week of school:
4 tests
4 quizzes
2 projects due
1 homework assignment of 40 problems
and only 2 classes.

Pray for me.

See you on the other side.


Wednesday, August 3, 2011

Class in 30

Hi! I have class in 30 minutes but I have enough time to get a post in!

So right now my apartment is just me and one other roommate. We were suppose to have another girl move in on Monday, but she never showed. I guess we scared her off... lol

Summer school ends next Friday! Yay! Then my crucial doctor's appointment the following Tuesday. Cross your fingers people, this one is important.

I'm busy with getting ready for formal recruitment too, on top of school and health. I enjoy it though, so no complaints there. It's just busy! Lots to get done, not enough time it seems.

Going home this weekend for some family time! I can't wait. I love going back home to visit when I'm away.

I have a kines test tomorrow on muscles of the hip joint, knee joint, and ankle joint and then a physics test on Friday on... I'm really not sure what the topic is even called. Stuff. Busy!! Lots of studying, at least 2 tests a week, this week has 3 for 2 classes. And a project due early next week!! Now do you see why I haven't been posting much?!

I got a new laptop!! I forgot to mention that! My old one was toying with me about kicking the bucket so we helped it along with a sale that came to Best Buy! I now have a nice speedy laptop that I love.

The boxer puppy is getting big and strong!! But I love having her around. It's nice to have some canine company.

Ok class in 23 minutes, but I want to do treatment too so adios!