Fall

While temperatures here are unseasonably high (still over 100-ugh), I am ready for fall!  Recently I read about this pattern for fall paper leaves that I think I am going to have to try.

The pattern for these beautiful leaves can be found here.

Fall Paper Leaves

Another video

Here is another video. This is from the time I was doing graduate work at Arizona State University.  Enjoy!

Performance Excerpt

This is a video excerpt of the Chandler Children's Choir (this is one of the choirs I collaborate with) and guest soprano, Erin Morley at their Spring Concert in May.  Thought you might enjoy.

Excerpts from DH update

We are now ending our 6th day at home -- and it feels great to be back in our own bed!! Tiffany was able to come home last Friday but we had to re-hook up our internet and with all the commotion of coming home that didn't happen till the end of the weekend -- hence the lateness of this update.  Tiffany came home on oxygen and the drug plan explained in the last email. The schedule has been ok except for the long periods of being hooked up to the IV which make for a couple interruptions during the night and not much sleep.  It was probably about 11:30 p.m. that the last delivery guy (for oxygen equipment) left our home Friday night and then Saturday was filled with trying to get reacquainted with our home and settling in after having been gone for almost a month.  Needless to say there were some items that needed to be thrown out in the fridge. Basically the last week has been filled with drugs, CPT (pounding --or beatings== to break up the mucus), and as much sleep as possible.

Today we had an appointment with the CF clinic to see how she is progressing and it was a good visit. Her PFT numbers were up to around 51% which is a great improvement from her last test in the hospital when it was 39%.  Her mom came in to help us last Saturday so it must be her good care that is helping her get better.  Because her numbers are doing well and the therapeutic value of the IVs are running out, they are taking her off the IV drug and oral antibiotic over the next couple of days.  This makes us a little nervous because that is what has been beating down the bugs, but staying on the drugs is not the best option -- we want them to work in the future.  This will allow us to finally be able to sleep through the night so I am looking forward to Friday night's sleep! 

Although Tiffany is progressing, we have learned over the last year that her body is much more prone to allowing these infections to take hold in her body so we must be careful.  Please be in prayer for us specifically about the many decisions that we will be needing to make over the next couple of months about schedule and treatment plans.  We are trusting in our God for His grace and leading! Thank you for all your encouragement and support.

Update 9/21/10

Sorry for taking so long to write an update.  I was able to come home Friday evening.  Wohoo! Boy, it is so nice to be home.  A month feels like forever-it is amazing how much life happens in a month.  It seems like I was just in my own world, in my room-not really tied in to what is happening outside of that room. 

I walked into a whole new home.  While I was in the hospital a group of family and friends completely replaced the flooring in our home.  Where we had carpet through the entire house before, now only two rooms sport carpet.  I have beautiful hardwood floors.  What a blessing!  This is such a labor of love-I don’t feel like “thank you” even begins to scratch the surface.  We are hopeful that this will greatly effect and help my lungs.  Each piece went down with love and I am so thankful for those that invested in me and my health.

So, back to the health front.  I am home and making progress.  This process has been much slower than other exacerbations.  I am still on IV meds 16 hours a day, oral abx and inhaled abx (abx is short for antibiotics).  I am still on oxygen as well, so this is a new frontier for me.  We now have cool tubing all throughout the house. :-) I am nervous about going out in public with oxygen-this happens on Wednesday as I have a Dr’s appt.

DH and I were talking about the reality of where I am.  With where my pft’s are currently and the current exacerbation I have some room to make up.  It has been a tough year-basically, I have been on IV meds 50% of the year.  So, it seems that we have some choices ahead of us.  Would you join us in praying for His direction in these choices?

Hopeful

Hopeful...we have heard the word “home” mentioned and if all remains stable over the next 24 hrs it is likely that I will be headed home sometime tomorrow.  This is the point where we hope this all happens, but “don’t count our chickens before they hatch.”  It is much easier to have low expectations and be excited than have to deal with the emotions of disappointment.

We still have a ways to come and I have my work cut out for me at home the next several weeks.  I am still on oxygen, continuing with IV and oral meds as well as cpt to keep things moving.  However, all of these things seem much more manageable from the homefront.

Progress is being made

We are now ending our 23rd day in the hospital, and I think we are nearing the end of our stay.  Tiffany's main CF doc was back in this last Monday and today, so now we have a plan for getting her home.  At the beginning the goal was that she wouldn't go home until she was off of the oxygen, but that is no longer the determiner of whether she can go home.  

We had another PFT (pulmonary function test) on Monday, and she blew a 39% which is 3% higher than last week and 13% higher from when she first came in to the hospital.  It was not as high as we would have liked to see (her baseline has been between 55-65%), but it is progress and movement in the right direction. Her breathing has continued to improve and her endurance/strength is getting better and better. 

We are shooting for going home the end of this week, so we are making adjustments to the drug plan that will make it easier on us at home. She is also coming to the end of the therapeutic value of a couple of the I.V. drugs so she would need to come off of them anyway. Basically, she is down to one IV drug, an oral antibiotic and going to an inhaled (nebulized) antibiotic. This will make it much easier on us at home with only one IV that currently is four times a day and last for four hours each time. We will see how she does on this plan the next couple of days and if all goes well, then we should be back in our own bed this week.

Our card wall is overflowing, and we are so thankful for all of the support we have received.  We often talk about the verse that tells us to "be strong in the grace of Christ Jesus our Lord" and God continues to strengthen us in our insufficiency.  Thank you for your continued love, prayer, and support. Below is our latest addition of art to our wall from a good friend’s children -- I especially like the dog, it makes me think of Dutch!

Value of Support

Well, I just finished up counting all the people on Tiffany’s card wall -- it is over 100 different people that have sent a note of encouragement. What a blessing it is to have so many people praying for us and supporting us through this process of Tiffany’s hospitalization. When I think of the support team that we have, I am simply amazed and thankful. We have heard so many comments on Tiffany’s card wall from health care providers who haven’t seen anything like it and let us know that it is unusual to see. For us, the support that we receive from family and friends is invaluable. Here is a basic description of the support that we have received this go around-- 

parents who have come for hospital duty

family and friends who installed new flooring in our house to eliminate more carpet

many who have sent cards and emails

friends from church who hauled away the old carpet from our house

excellent medical support from CF center and hospital

college students who we work with have come and visited and sent notes of encouragement

co-workers who are covering for us while we are out

friends who help out with our dog (and even do the dishes when they just stopped by to feed her)

a church family that prays and supports in whatever way they can (like bringing food to people installing floor)

each other -- as we encourage one another to keep a Biblical perspective and keep trusting in a sovereign God

Thank you so much to all of you who have helped support us.  It allows us to fight the CF, be encouraged, and keep moving forward despite the difficulties.  I would encourage you to lend support to those that you know have a chronic disease or just need encouragement.  You probably have no idea what just a simple note will do after spending another day in the hospital! As Tiffany’s husband, I can’t express how much it means to us. Thank you!

Update 9/9/10

I wish that I had some really awesome news to share today.  The past couple of days have been tough.  I blew another round of PFT’s on Tuesday-they were around 36% (I was hoping for mid to high 40’s). So progress is slow in coming.  It is a real possibility that this will be at least another week or so.  Both DH and I have been quiet, just getting our brains around what is happening, exploring possibilities, thinking through everything to be sure we aren’t missing something obvious or not doing something that we should be doing.

My regular CF doc does not return until Monday so we really don’t anticipate any changes until then.  At that point, we hope to ask about what they are thinking and what that means for the days and weeks ahead. 

I also had some port excitement over the weekend.  Sunday we were unable to get any blood return.  Stuff was going through just fine but they couldn’t get a drawback.  So, Tuesday afternoon was spent down in I.R. (interventional radiology) to confirm that the line was still viable, that there were no clots or problems.  There was a fibrous sheath that had grown over the end of the line.  They were able to hook me up to a slow 1 hr drip of a med that would clean that out.  Took another look after the drip finished and stuff looked good.  Big sigh of relief-I was not looking forward to having to replace the port if necessary.

The oxygen component has not really changed. I had tried to push for them to reduce it down to 2 1/2 ltrs.  but it resulted in extra stress on my body.  Last night was a point of decision for me not fight this-back up to 3 ltrs. and let my body use the energy to fight the bugs rather than fighting to get air.

What fun it was to have some visitors yesterday!  Thanks guys for stopping by.  I LOVE all the notes of encouragement and goodies.  Also added more cards to my card wall.  Whohooo-it continues to give opportunities to share about my faith family and those who are so faithfully praying.

Today was a quiet, low key day.  The goal was some more sleep.  Goal accomplished-several naps later!  Got out and about with DH downstairs and a game of nerf ball catch in the room all made for a just right Thursday.

Overwhelmed

Do you ever have days where you are overwhelmed? Where you reach the end of your rope and feel like saying “no more-I can’t deal with this”?  For me, the past couple of days have been at this spot.  There were several events that just tipped the balance-not one of them was that huge but connected all together they made for something that just was too much.

I am so thankful for my hubby-he knew I was struggling.  He graciously cleared the room and just came and sat and held me.  There were tears (sometimes those are healing in and of themselves), questions, and venting; then a choice to rest in what God is doing-acknowledging that none of these things were a surprise to him-they had not caught him off guard. It did not make the struggles disappear and there have still been “it’s too much” moments.  

I am sure that we have not experienced the last of the overwhelming moments, however I pray that in those moments I will be faithful to respond in faith, trusting the One who is walking, shepherding me through them.

Update 9/4/2010

Headed in the right direction.  The past two days we have seen a little progress which is a blessing.  Thursday and Friday they made some drastic changes on the medication front and it seems to be just what was needed. 

I am still on the three IV antibiotics but the frequency and duration of those have been modified.  The Primaxin they are running very slowly over a period of 4 hours every 6 hours.  The thought behind running this so slow is that it gives a constant level that works against the bugs, rather than a quick peak and then decreasing over a period of time. The Tobramycin is the same; a dose every 12 hours.  The Vancomycin they have doubled-so I get a dose over a period of 2 hours every 6 hours.  It seems as if this change has thrown those bugs for a loop and are beginning to kick them! :-)

Thanks to those who have dropped by or sent cards.  It is so fun to continue to share your love for me with those that care for me here-it has been a true testimony.

The Wall

Thanks so much for your additions to my wall!  It is so fun to hear the exclamations as people come in and see all that is on the wall.  I especially love all the artwork....such great creations-thank you so much.

Update 9/1/2010

Whew! It’s only 11 am and it has been a full morning already.  The morning started with blood work at 4, then a change out of IV meds.  Then at 5 I was greeted with vitals....moving on to 7 I decided "why wait to get the morning going" so we got up and moving.  Several student nurses in, the nursing assistant, breakfast, the doc coming in, x-ray done, breathing treatments and cpt, then more nurses-oral meds and changing out IV med, then RT coming to do blood gas lab work....all before 11!  Time to take a nap-maybe this means a quiet afternoon!

Well, ended up being kind of a crazy day. My white blood cell count is up slightly so they are working at eliminating any other possibilities-taking a look at labs, checking to be sure there are no other infections going on that we may be missing.  Also taking a look at if there is a different drug family that would be more effective against the PA.

My dad has been on hospital duty this week.  Thanks Dad!  I think he is getting an education and a half.  From what blood gases are to giving benadryl before my vanco dose...He has really been a trooper and I am so thankful that my family and friends are such a crucial part of my support team.  Thanks guys!