This Skin

A few days ago I explained the process of getting desensitized to IV antibiotics. While in the hospital I had heart monitors connected to my chest 24/7. If you have followed my blog at all you know I have very sensitive skin when it comes to adhesives. So it should come as no surprise the heart monitors (all 5 of them) gave me these nasty blistering welts. The picture to the right is of my lower rib cage after I removed the monitors. The blisters are hard to see, but they quickly developed and boy were they itchy! I have been home from the hospital for almost a month now and you can still see where all my monitors were by faint little red circles dotting my torso.

And as if that wasn't bad enough check out the little red bumps on my arm (they are subtle and easier to see towards the underside of my arm in the pic) where the blood pressure cuff was for the entire three days. The blood pressure cuff!!! No tape, no adhesive, nothing!! I think the combination of the cuff being on the same part of my arm that my old PICC lines were placed didn't help because that skin has become insanely sensitive since my bad PICC experiences. Although this rash faded within a few days I was confused as to how I could possibly react to a blood pressure cuff!

I still find it perplexing that outside of CF medical experiences my skin is not sensitive at all. I have never had a reaction to detergent, soap, lotions, anything! I have normal skin, but the second I have some sort of medical tape, adhesive or a constant blood pressure cuff on my skin it starts reacting.

Antibiotic Desensitization

I wanted to describe the process of desensitization because before my last admission I was pretty clueless about. It was actually much easier than I anticipated, it but was something I was very nervous about prior to actually going through the process.

This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.

When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.

A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.

The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.

Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.

What You Do not Notice

Sometimes the best indication of how things are going is what you do not notice. Like the fact I let my daughter jump on my back yesterday and carried her all the way home from the park and I didn't notice that my lungs weren't getting tired and my breath wasn't becoming too shallow. I didn't notice that I was carrying my daughter blocks at a time until she asked, "Mommy, I am not too hard to carry today?"

I was watching my nephew and ran up the stairs to throw his diaper in the diaper genie and I didn't notice that I actually made it up the stairs without gasping for air until I was already back downstairs playing with the kids.

I walked a mile with my daughter to run some errands and stop by the local boba shop for a cool treat before making the walk back with an arm full of grocery bags. I didn't notice I never had to stop and cough until I got home and realized it was time to start my treatments.

I didn't notice I didn't need my afternoon bronchodilator until I needed my pre-treatment evening dose and couldn't remember where I had placed it earlier that morning.

Sometimes, when life rather than your disease starts occupying your mind you realize you must be doing alright!

Awkward Hospital Moments

I finished my desensitization and am back home. I will update about the process soon, but for now I wanted to share some awkward moments in the hospital because every stay has at least a few of them!

Being in the hospital is nothing like they show on TV (redband society anyone?) however, there is some entertainment mainly in the form of awkward or embarrassing moments. Well, maybe that just happens to me. Regardless, here are a few of the entertaining or awkward moments that happened during my 3 day stay.

1. I was admitted Friday night, but they did not start the desensitization until Saturday morning. This means Friday night I did my regular treatments (at 2am...yikes) and that was it. Nothing was done at the hospital that I don't already do at home. So Saturday morning the doctor (not my CF doc) walks in and says, "Are you feeling better yet?" I laughed because...uuuh I hadn't even had a course of antibiotics yet. After laughing I realized it wasn't a joke and there he sat waiting for an answer....

2. I had two nurses ask me when I came down with CF. Granted it was not the CF floor since I was in ICU, but still genetics 101 anyone??

3. Since I was in ICU I was hooked up to a million monitors and really couldn't move. After my treatments the RT forgot to throw away my mucus spit cup and I never realized. Later when moving the table closer so I could get a sip of water the spit cup fell on the floor. Upside down. Mucus went flying everywhere. I tried my hardest to reach and I couldn't! I had to call my nurse and the poor woman had to clean it up. Not my favorite moment.

4. Bedside commode... enough said!

I find most people that work in the hospital lovely, but every once in a while you get an interesting personality. There were two awkward moments because of awkward hospital staff.

5. I had a nurse come to draw my blood. He was not my assigned nurse, but she was busy so he came in to take my blood to help out. He was pretty quiet and didn't say much until my blood draw was almost done. Then he blurted out that his mother died the week prior and then ran out of my room before I could say anything.

6. I had house keeping come through every day. They were usually respectful and quiet, but the last day I was in I had a strange experience with housekeeping. The woman came in and instantly starting ranting and raving that the school never notified her that it was a school holiday. She then went on to complain about the newsletter the teacher sends home. Uuuh inappropriate much?

Overall, the hospital experience went smoothly, but I always have a few cringe worthy moments and this stay was no exception. At least it makes for an interesting stay!

Toddler Talk Part 4

These entries are from Sept- Oct 2014 (so K was about 2 years and 3 months. I am just a little late posting). I guess anatomy was something of interest to her at the time.

1. After grabbing a container of peanuts from her snack drawer she announced, "I want to eat PENIS!"

2. I let Kaylee sip from a can of Sprite (I actually don't usually drink soda, but we were out all day, I forgot my water bottle in the car which was about 7 blocks away, and the street vender told me he was out of water, and it was September which is HOT, so....) Kaylee sips the soda and shouts (in front off the courthouse I might add),
"I am drinking beer!!"

3. Holding her stuffed cat, "This is not a huge penis, this is a tail."

4. "When I grow up I am going to have HUGE boob boobs just like mommy." If you saw how large (or not large) my chest is you would know why this is so funny.

5. "When I grow up I am going to grow another arm and hand."

ICU

I am on a waitlist to get into ICU. Yup, ICU as in intensive care unit. I never realized there were waitlists for such places. Makes it sound like a nice restaurant or swanky hotel despite the fact that I don't think anyone ever wants to end up in ICU. Thankfully, I am not critically sick which is why I have been waitlisted. I do however need a nice dose of IV antibiotics. After calling the doc asking for a two week tune up I learned that the bugs I culture and my body have made a pact against me. It seems the bugs wreaking havoc on my lungs are only susceptible to medications my body decided to become allergic to.

The good news is that being allergic to medication does not mean you can't take them. It simply means you need to be desensitized to the meds in an environment that you can be watched closely to ensure that there is no reaction (I think anaphylactic shock it the biggest worry) hence the ICU reservation. I was told my name was on the list and an intake coordinator would call me when a bed opened up.

Naïvely, that weekend I carried my phone everywhere I went, checking every so often in case I missed the call. Then Saturday night turned into Sunday. My hubby took Monday off in case the call came. As Monday came and went we realized this wait may be longer than anticipated. We have been waiting almost a week now with no sign of an open bed.

In the time I have been waiting I have had some orals, a week of IVs (Aztreonam) that we decided was ineffective and I have switched back to orals. I am hoping these orals do a better job of holding me over until a room opens up because I am feeling desperate for some relief.

Hopefully, in the next few days I will be updating from my hospital bed!

Empathy

The other day I tried to return a call from a friend, but got her voice machine. Her son is the same age as Kaylee and they often have play dates. Recently, with winter here, her friend was sick for so long we had to postpone play dates for three weeks in a row and the week after out playdate he ended up in the hospital due to sickness. As I hung up the phone, disappointed my friend didn't answer, Kaylee came walking up to me.

"So mom, how is Ethan feeling today?"
I looked up from my phone not realizing she was standing there. Her big blue eyes were looking up at me eagerly waiting for my response. I was surprised she remembered he had been sick as it has been several weeks since a canceled playdate.

"He is all better. That was nice of you to ask about him"
Kaylee responded with relief in her voice, "That is very good news!"
and ran off to play.

So much of the time I worry CF will fill Kaylee's memories. That she will remember the times we spend in the doctors office, or the nights I wake her with my cough from the next room over, or the way I always decline chasing her through the park because my old lungs simply can't run anymore. Or the times she wants me to carry her and I make excuses because I hate to tell her no, but in reality my breath is too shallow and I have days I simply can't manage walking and holding her. Or the times I huff and puff at the top of the stairs, or the times I need to nap instead of being able to play, or all the horrendous moments CF has put in our lives.

But maybe after two years of motherhood and 30 with this god awful disease I have finally seen something good come from such an ugly part of life. At two, Kaylee has learned to think of others which is something many adults have not yet mastered. Maybe CF is giving her life lessons she could not possibly learn with a healthy mom. Maybe this disease will teach her first hand about empathy and thinking of others. Having CF be such a large part of her life may fill her memories with hardship, but maybe it will fill her heart with understanding. Maybe despite all the horrible aspects of CF it will teach my daughter about the more important parts of life, to connect with and understand others. Maybe a part of her will grow up grateful for the lessons she learned from CF rather than a hatred for all it took from her. And maybe I am learning more about accepting the life I have been given from my daughter than I ever imagined possible.