One Week Update

Well here we are at the one week mark.  Today has been a good day but with some tough reality checks.  Last week I came in through the ER due to shortness of breath.  My oxygen saturation was at 80 and no energy.  Today I am on 4 liters of oxygen and my ox. sat. is around 93/94.  I am on three antibiotics; Vancomycin, Tobramycin, and Primaxin.  I have four sessions of nebulizer treatments (anywhere from 1-4 meds each session) and CPT (aka pounding) each of those four times which constitutes about 2 + hrs of CPT a day.  Mix that in with vitals at the most inconvenient times, blood draws, and doctor visits...occasionally some shut eye and a few moments of alone time with my hubby.  (oh and I can’t forget all the pills that I have to swallow :-) That pretty much sums up what I have been doing this week.

I am fighting two bugs in particular, MRSA (a type of staph) and PA (a type of pseudomonas). These are not new bugs to me-I have grown and treated these pretty regularly.  The oxygen is a new twist.  This is the most I have ever been on oxygen, so that has been a little disconcerting.  Was able to ask some questions of the docs today and get some real insight.  It looks like I am in here for a long haul.  To be honest that is a tough reality for me to swallow. The doc today encouraged me to make the most of this stay and plan at least 3 wks.  Argh!  I am chomping at the bit already.

 It has been hard not to dwell on that this evening.  Several times the phrase “the spirit is willing but the flesh is weak” has come to mind.  The other worry that keeps trying to creep in is the reality of a “new” reality.  As I shared with my hubby, it’s tough because I know that this is just the start of more/longer circumstances like this.  Praise the Lord that through Him we can keep every thought in captivity.  He knows, He is at the beginning, middle, and end of all of this.  I don’t have to fear because He is right here with me.  Now for the practical application of choosing to rest in His working (even if it really isn’t what I would have chosen).

Thanks so much for your faithful prayers.  What a blessing to know of many who are upholding me and DH in prayer.  Your notes and emails are a real encouragement as well and often bring a smile. Thank You

The Latest 8-28

Tiffany is headed in the right direction with some progress on her breathing.  She is still on oxygen and we are going to see if we can start reducing the amount slowly. We have reduced it slightly from when she first came in and her oxygen levels have been maintaining around 93%. Basically now it is the process of just being patient with allowing the drugs to work their magic (of course we understand that they will work their magic according to the will of God ). The dr.s have not even mentioned a time frame of how long she will be in here which means it will most likely be no sooner than the end of the week.  This is that part of patience! There are a lot of CFers in the hospital right now so we have seen the CF docs every day which is a blessing. They have not found any new items to address so we are still just primarily dealing with MRSA in the lungs. -- David (DH)

Tiffany's Card Wall -- Feel free to add to it!

In the "slammer"

In the CF world that is the slang for hospital.  Yes, unfortunately my lungs took a nose dive over the weekend and my hubby graciously took me to the ER on Monday.  So it looks like I may be in here for a while.  I hope to keep up on the updates, but for now I covet your prayer.

Friday Fill-in

My brother and his girlfriend got engaged.  Congrats you guys!!!!

You know it’s hot when you turn on the cold water and all that comes out is lukewarm water.

When recording (a rehearsal CD) it is always nice when all of the technology works.

Back to school madness is in full swing.

Happy Weekend

pics from San Diego

a pier
we enjoyed many walks on the beach

Balboa Park
we visited a Japanese Garden
and heard a concert at the Organ Pavilon

the view from our room

a lot going on...

This past week and a half has been tough and good all in one.  From two road trips to getting off prednisone to spending a day recording rehearsal tracks...it has made for some crazy, busy days.

Unfortunately things started in a way I would not have chosen.  I had a dear aunt that went home to be with the Lord.  She was 55 and had been battling MS for many years.  I was sharing with someone recently that there is no way that I could wish her back here....although we miss her a lot, she has a new, pain-free life.  My hubby and I jumped in the car and made the 13 hr trip to CO.  The funeral went very well.  Many attended and it was a sweet time.

My mom, hubby and I left that afternoon to return home.  We spent some hours at home and then mom and I left for our previously planned road trip to San Diego.  We enjoyed several days on the beach of Pacific Beach.  The cooler temps and the relaxing atmosphere of the ocean was just what we needed.  What a blast!

Among all of these happenings I am still tapering off the Prednisone.  I am currently at 5 mg every other day.  Honestly, it has been rough.  My mood has been up and down.  My DH shared with me “I am just trying to be sensitive.  I don’t know what is really an issue and what is Prednisone!”  I feel the same way.  My body is not excited about me taking away the Prednisone and it seems to be throwing a tantrum.  I continue to remind myself that this is the best choice and allows for more flexibility in the future (as far as using Prednisone to treat future asthma flare ups), but somehow my body, lungs, emotions aren’t buying what I am selling.  :-)

In all, the Lord is so faithful and truly gives grace to deal with the curves that come each day.

An "aha" moment

I was talking with a young lady Friday evening.  She has just graduated with her music degree and was picking my brain about my job and what I did here in the valley as a pianist.  We had a very profitable conversation.  

As I was sharing with her my teaching load she proceeded to ask if I taught privately as well.  I went on to talk a little more about really having to be careful how busy I got due to health concerns.  It was in this moment that internally I thought “I really can’t do any more.”  Now that may not sound so earth shattering....but, it really was the first time that I had thought “I can’t” instead of “well, if I get a little healthier”....  I think that this is an important moment. 

It is bittersweet (although healthy) to come to terms with my limitations.  I am not sure how I feel about all of it...that is something I am still wading through.

The Other Side by DH (organization-part 4)

Here are a couple points for making life on IVs easier.

1. Become as independent as you can from the home health care company.  I learned to access and de-access Tiffany’s port early on.  In fact Tiffany de-access’ her port by herself often and has even accessed it by herself once -- she is pretty brave! This allows you to be on your own schedule and not theirs and also keeps bugs from other people away from your port.
2. Organize your supplies -- see previous post -- trust me this really does help in making life easier but it also gets it out of your living space so your house doesn’t look like a hospital.
3. Get a basket that fits on the base of your pump pole wheels.  I stock this from my organized supply and since we put it on the base of the pole, it is always there with whatever is needed.  I usually have to stock it every other day for some things and only once a week for others.  See the picture below. A longer, skinnier basket works well that sits right on top of the wheels of the pole base. In the basket we place the heprin, saline, tube caps, alcohol wipes, hand sanitizer. the caps, wipes, and sanitizer we put in a little box on one end and then the syringes we put in going different directions to make it easy to keep them separate.  You will always go through more saline then heprin.
4. Get a good pump and learn how to use it without help. We do every medication through the pump even when it is not required.  This is especially important to us when Tiffany is doing them alone.  It gives you much more control especially if you have reactions to the drugs. For example, Vanco is not a very nice drug and Tiffany cannot run it at the speed for which it is prescribed.  We have to slow it way down in order for her not to get Redman’s. No matter how many times we do IVs we have to expressly ask the home health to send the pump and to fill the meds to be used with a pump.
5. Remember that your body needs time to recover so schedule your drugs with sleep in mind.
6. Become friends with your nurse -- she can save you a load of trouble and help you out of a tight pinch.
7. It is ok to let your friends and family help.  If they ask if they can help, see if they can bring over a dinner for you.  We have found that we only want about 3 dinners a week from others because of all of the left overs. Maybe they can come over and help clean your house or apartment.  Once when Tiffany was in the hospital, we had a group of friends come over and clean the entire house and sanitize everything -- they probably worked for four hours and there were around five of them.  It was great to bring Tiffany home to a clean and sterile environment. (thanks guys)
8. Soft blankets are wonderful -- our best are homemade fleece blankets -- you can email Tiffany for instructions on how to make them.
9. Put a towel below the IV pole and on the arm of the recliner (or whatever comfortable chair you sit in) to protect them from drips and such. Some of the drugs do stain carpet.
10. One I haven’t done yet but plan to do next time, with a small wire or ribbon, tie your little basket to the pole.  Inevitably either my dog or my foot will knock the basket over a couple times in a week.
11. Combine other treatments with IVs such as do your breathings and CPT while you are hooked up.
12. Showers with picc lines and ports are interesting.  For picc lines -- cut both ends of a ziplock back off  so as to make a sleeve of the plastic that can go over your arm where most piccs are inserted.  Cover the the bandaging with a washcloth with the bag on top and then tape off both ends. Unfortunately, we have not found a tape that works good every time and we have tried them all from waterproof to basic tape.  We now just use the one inch wide tape that comes from home-health. For a port, use the heavy plastic bags that your supplies are delivered in or a zip lock bag and cut it just a little bit larger than the bandage over your port and needle.  Cut a wash cloth to the size of your bandage and place it on the bandage and then the plastic can be taped on. Do the top first and then the bottom and then the sides.  For some reason, the tape seems to stick better if you stretch it tight as you put it on.  When you get out of the shower have a paper towel ready as water will always get through the tape but hopefully the washcloth will soak most of it up.  Tear off the tape (every way we found still hurts) and then dry off the dressing with the paper towel.
13. We normally have one of those big shower heads that feels like you are standing under a waterfall but we change out the shower head while Tiffany is on IVs for one those shower heads that is on a hose.  We then place it lower for Tiffany so that the water does hit her head but below the port and then she can wash her hair with the shower head because of the extended hose. The five minutes to change out the shower head is worth it!
14. Keep a trash can handy with good plastic bags. You will have lots of trash and plenty of liquids from tubing and left over drugs in bags. You don’t want that leaking out all over. We used to use grocery bags but too many of them had holes and we would get stuff all over.