Friday, September 23, 2011

Release and Home Healthcare

As Saturday came and went I continued to improve and regain strength. One thing that happened was that my red and white blood cell count dropped to a concerning low. They believe it was another affect of the Zosyn allergy but couldn't be certain so retesting had to be done on Sunday and my going home hinged  on what the tests revealed. Early Sunday morning another blood draw was taken to the lab while B and I waited to see if I could go home.

Going home would entail continuing my IV therapy under the supervision of Home Healthcare. This is a benefit that is provided to me thru my Social Security benefits, thank goodness at very little cost to our family.  The HH nurses come out to 'teach' the proper techniques for infusing all my medications as well as to ensure proper sterilization is being done. There are many infections that can occur when having a Picc Line and not following all the necessary precautions. Things like hand washing, drying hands with paper towels instead of dish cloth, cleaning the Picc Line cap with alcohol prep pads for 30 seconds, etc.

Around 1pm the test results had come back with no change. The cell counts were still down and the doctor gave us our options and what each could possibly mean for us. One option was to go home, repeat the blood work on Monday and depending on those results re-admittance maybe needed. Should I be re-admitted I would be looking at having injections to boost my bodies ability to produce red & white blood cells or worst case scenario a blood transfusion.

B and I decided to go home. If they didn't feel those treatments where needed now then I wanted to go home even if it was for only 24hrs. Upon getting home around 3pm, it was time for my first IV doses at home and as promised my HH nurse arrived just minutes after we did.

We quickly converted my kitchen table into a small IV station and began my training. Since I have been doing HH care since the early 1990's I am pretty secure in my ability to carryout the treatments. However, over time things do change therefore I need to be caught up to speed. The HH nurse was there for about 1hr and would be returning the next day for the blood draw.

IV Station 

My medication schedule is Tobramycin every 24hrs (3pm) and Meropenem every 8hrs (4am, 12pm, 8pm). This is in addition to all my regular treatments. It's a lot to do, its a lot to remember but its completely totally worth it to be home. To eat dinner with B, to get up in the mornings with B before he heads off to work, to just simply be home with my little family is sooooo soooo much better than the hospital.

Tobramycin (tall bottle w/ light blue top) Meropenem (small bottle w/ dark blue top)

These bottles are super cool. Instead of bag of fluid like most people are probably used to seeing, these have a rubber ballon of sorts that is filled with the medication. When it's released the pressure forces the infusion of the medications. I have to say these simple little things make life so easy. I can wear a sweat shirt with a front pocket and no one knows I am hooked up. I can even put them in my pants pocket if the pants are loose enough. This allows for me to do what I want. Go to the grocery store, fold laundry, do yard work..... all because there is no pole needed to elevate the IV bag but rather a pressurized balloon.

Tuesday morning the blood test results came back that showed a small improvement. Yes! The plan was to continue daily blood draws to ensure that things were continuing in the right direction and for me to continue all my medications for a total of 14-days. I have a scheduled doctors visit on Friday 9/23/11to find out if we can stop the IV's or if I need a few extra days on.

Today is the day. I am so hopeful that I can reclaim my kitchen table, I can reclaim my left arm and shower without holding my arm above my head to keep it dry. I am hopeful that today, as my Nana says, my batteries will register as fully charged!


Monday, September 19, 2011

Allergy = Hospitalization Day # Dos

I am happy to announce that hopelessness didn't consume me entirely!

As the night wore on and I realized that I was in for the long haul with no sleep and nothing from home but my cell phone, I decided to utilize my Facebook application. Thank goodness. I put one post about my dilemma out there only to get 29 comments. This may sound ridiculous but it kept me in the game, each time a new comment was posted my phone would ding announcing the news. That ding became a sweet sound of reprieve. I was taken away to FB land to read something that was encouraging and heart-warming. Thank you all.

By about 4am my phone battery had died from all the use and no charger but my CF doctor came in that morning unusually early because of all the patients in different hospitals that he needed to see. I was beyond thankful. During our discussion about the nights events, we both felt that changing the Zosyn to Meropenem was what absolutely needed to happen as it appeared that I had developed an allergy to the Zosyn.

This is not good news. The changing of medicines, yes. The allergy, no. There are only a few medications that Pseudomonas is sensitive to, meaning that can battle the nasty stuff. I now am allergic to  two of those precious medications.

The nurses immediately began to infuse the new drug and I slowly started regain normalacy. The vomiting stopped immediately, although I was left with no appetite for most of day. The no appetite thing had nurses a bit on their toes since I need approximately 3500 calories a day. The use of my feeding tube was halted because the hospital didn't have a particular connector tubing that my MIC-key button (g-tube) required thus zero caloric intake for over 12 hours. B would have to bring the proper connector up later that day. I still could not sleep. All the drugs that were given to help ease each symptom left me in a haze. I would close my eyes, toss and turn, fluff my pillows but sleep would allude me each time. My mom came up sometime in the day light hours of the morning, she came in tow with a bag that B had packed me of all the stuff I wanted from home. In my exhaustion I really wanted nothing to do with most of it besides the phone charger so that I could update my dear and loyal FB friends as well as return the 20+ text messages. My mom stayed the entire day, she simply sat played on her new iPad toy by my bed as I desperately tried to sleep. We would spark a conversation here and there but not much. I really really really wanted to sleep. That's what mom's do, they sit by your side with no expectations to be entertained.

Sleep is a very allusive function while in the hospital under the best of circumstances. In the hospital that I am typically admitted to they do 'purposeful hourly rounding' as the sign in my room to eloquently read. The nurses and/or CNA's came in every hour to take vital signs (temp., blood pressure, O2 stats) in addition to entering to administer my IV drugs, oral medications, etc. The traffic to my room was ridiculous but understandable.

Later in the evening I had a few visitors. My brother came with his two kiddos and my hubby came to stay the night. By this time I was starting to regain some strength, enough so to make a few trips to the bathroom alone and I even ate a light dinner. As night time approached I asked if I could have 4 hours of uninterrupted sleep. My night nurses were very much in favor of this. It was not the best sleep I have ever had but compared to the previous nights events it was bliss.

Thursday, 9/8/11, began with a routine admittance and was worsened by an allergy. By Friday evening I was back to the status I had been admitted for. Hoping that Saturday would show improvement and we could start to look a release date. The one thing I was worried about prior to admittance, the Picc Line, was the only thing working.

Yay, Picc Line!

Thank you everyone for all your kind words. Sometimes we don't realize the full effect of our actions and/or words. Yours helped me get thru the night, gave me the strength to not break down in tears and to not let the feeling of hopelessness consume me. I have a new respect for social media. We don't know what post will make someone laugh or cry or renew their courage.


Friday, September 16, 2011

Pulmonary Hemoptysis= Hospitalization Day # Uno

Oh, the joys of the unexpected.

Last Thursday (9/8/11) I was caring out my morning rituals as normal. Which begins by taking long list of medications, eating breakfast, getting dressed and lastly taking the dogs outside. It was a nice morning and so I decided to hang out with the dogs in the backyard to get some fresh air. During that time I had a coughing episode, which is not unusual, that produced bloody mucus. As I kept coughing and spitting. Which is highly encouraged to get the mucus up and out of the lungs, more blood than mucus started to show up. This at first was not alarming as coughing for great lengthens at a time and with great veracity can cause a few broken blood vessels. In the amount of 2 hours I had coughed up a lot of blood and began to become very concerned. Concerned enough to place a call to my doctor.

My first level of response is always to call my doctor to find out if they feel going to urgent care or the ER is necessary. Typically, a trip to either is fruitless as they really don't know how to treat such a complicated disease unless its immediately life-threatening. After a few discussions, Dr. Cohen recommended coming into his clinic to be seen.

I immediately rushed out the door to make the 45 minutes drive to his office. Upon arrival he had a preliminary diagnoses of Pulmonary Hemoptysis, which was only further confirmed after his physical evaluation. There a different levels of Pulmonary Hemoptysis, which are characterized by the amount of blood being brought up and the circumstances surrounding the current health of the patient. In my case, Dr. Cohen felt that antibiotics were necessary and since I had literally just gotten off an oral 14-day prescription of Cipro, a stay in the hospital was warranted. Ugh!

Honestly, I was not surprised. My biggest concern was that I hadn't packed anything prior to rushing out the door. You see, I have a particular set of things that always accompany me to the hospital. Books, pillow, blanket, my own pj's, sports bra (this helps when male nurses/doctors have to evaluate the lungs and with modesty), Bible and my UGG boots for walking around the halls. Nurses always get a kick out of my room, as I make it as homey as possible. I was worried about getting all this stuff. Silly, yes, but it helps ease anxieties making me comfortable when I am alone and is my saving grace during difficult times. I immediately called the hubbs to begin arranging the logistics of my stay. Hubbs works for his parents for which I am grateful. Is step-dad was able fill-in for him for the remaining part of the work day so that he could accompany during the check-in process.

B and I checked in to the hospital about 1pm. Check-in can be the worst part of the entire stay. I had to have a Picc Line placed, x-rays, blood work, etc...... I hate Picc Lines. They freak me out. I have to have to take anxiety medication for it or I cry uncontrollably during the procedure. It's really all psychological as they do a great job in numbing the area and I feel no pain. Once they have the line placed they immediately begin infusing two different anitibiotics. The first was Zosyn and the second is Tobramycin to treat Pseudomonas which are the underlying cause of the Hemoptysis.

Picc Line preparations-anyone recognize what t-shirt I am wearing?

At first dosing of each antibiotic things appeared to be going smoothly. I was a bit tired but other than that I felt pretty good. B and I decided it was safe for him to return home to get a good nights sleep and to pack me some comforts for home. My mother was going to take Friday off to be with me so that B could finish out the work week (we need the $$$, sadly). B left around 8pm to make the 1hr trek home. I fell asleep and awoke around 11pm and would not sleep again for 24hrs.

When I woke I was shivering had a fever and my body hurt. The nurses pilled on about 3 or 4 warm blankets and gave me Tylenol. The Tylenol had no affect and shortly after I began vomiting. My joints began to swell and the on-call doctor probably had no idea what to do for me. They gave me Vicodin for the pain and anti-naseau med's thru my Picc line, all in addition to my continued antibiotic regimen. The best description I can give and did give was that I felt like I was being poisoned.

The battle continued all night. All night I was shivering uncontrollably causing my muscles to ache my joints to become swollen and painful. I was sweating from the fever and I was alone! I had no comforts of home since I didn't have a chance to pack and it was in the middle of night.

Hopelessness threatened me.....