Prouty

The Prouty Story
The first Prouty was held in 1982 when four nurses rode 100 miles through the White Mountains of New Hampshire.  Their purpose? To honor the courage and strength of their patient, Audrey Prouty, in her fight against cancer. In its 28th year (2009), The Prouty drew more than 4600 participants and raised more than $2MM to benefit Dartmouth-Hitchcock's Norris Cotton Cancer Center.  

I have a feeling that Audrey Prouty was a lot like Pam Paradee.  I will be riding my bike at the Prouty on July 10th with the boys and other members of Pam's family.  The Prouty is a major fundraising event for the Norris Cotton Cancer Center here at DHMC.  Our team name is: Team Pam.  If you would like to donate to our team please follow this link:  TEAM PAM
Prouty home page for more info on the event:   PROUTY

Please do not feel obligated to do this, many of you have been and continue to help us in many ways and we truly appreciate this support.  The people at Norris Cotton and DHMC have been amazing to us for the last three years and we have and will continue to support them in their efforts to fight Cancer.  If none of you have ever been to Norris Cotton or DHMC (and hopefully you won't have to!) you should feel good about the fact that we have such an amazing facility so close to us here in VT/NH.

If you would like to join us in Hanover on July 10th and walk or ride please DO!  You can join Team Pam at the link above.  You will feel great about being part of such an event.  If you are going to come and participate please let me know so we can all be together as much as possible.  They event is very kid friendly!
Troy

Hopefully starting the road to recovery now

As you know Pam has been back in ICU for the last 10 days.  She had her breathing tube taken out last Wednesday and was doing great at first.  Over the next couple of days she tired out and her ability to take in the proper volume of oxygen decreased.  She is so deconditioned that she is unable to support herself very long.  Picture trying to run a marathon with the conditioning of a casual walker.  She ended up having to be reintubated on Saturday.  At this point I went to spend a couple of days with the boys in York, ME with Pam's sister Jen and her family.  That was great for the boys and me.  We got three days of playing together in.
Pam was maintained on the ventilator for a few days as the Dr.'s all discussed the next step.  In order to get Pam stronger we need to be able to let her breath some on her own and then rest, and then repeat.  Picture weight training with a ventilator.  The only way to do this is with a tracheotomy vent.  This involves a surgery where they create a whole in the trachea (throat) to create an airway.  The vent support tube is attached to this.  The air is pushed directly into the lungs bypassing the mouth and throat.  They can take this on and off anytime they want very easily so Pam can spend time strengthening her breathing muscles and lungs and then rest when needed.
The reason this was not done earlier is because it is another source of infection for Pam.  But they really had no alternatives at this point.  She has been intubated 6 times!   Any normal patient would have had a trach tube put in after 2 times.  They also put in a feeding tube directly into her stomach so she can get nutrition more consistently.

Both of these items are reversible and temporary until she can get stronger and breath and eat on her own.  The positives are she can come off some of her sedatives and that her vocal cords can heal.  When they take her off the vent she will be able to talk.  When it is put back on it doesn't damage the vocal cords like the other tube did every time.  We just need to hope for no infection.

Pam is extremely deconditioned and will remain in ICU for several days to a few weeks as they get her stronger slowly.  She is/has been stable in other areas for several days.  We are hoping that this new airway system will start to allow her to recover consistently.

She continues to smile at everyone and give them her winks of approval.  They all love her here and she is receiving the best care.  I will let you know when she can start taking visitors.
Please read my next blog post if you would like to know a small way you can help not only Pam, but others as well.
Troy

The highs and lows continue

Hi everyone, sorry you haven't heard from me in a while, too much to tell really.  I will give the simple version for now and spare you some of the tough details.

So Pam was released from ICU last Wednesday and went back down to HSCU (Hemotology Special Care Unit).  This is where transplant patients stay.  She was doing pretty well for the most part and Thurs and Friday were uneventful.   She was continuing to breath at a pretty high rate however.  Meaning she was taking about 30-40 breaths per minute.  She was getting enough O2 to her cells and she repeatedly said she was feeling fine.

On Saturday things fell apart in an instant and she was re-intubated (ventilator machine) and brought back to ICU.

After a couple of days to let things settle she is once again doing well.  She actually got the breathing tube out a couple of hours ago and is resting nicely right now.  It was a stressful couple of days over the weekend but we seem to back on track again.

Pam's road to recovery will be long and it will be bumpy.  She is the strongest person I have ever known and she continues to amaze me (and her Doctors as well).  She is getting the best care possible here and we continue to look forward to her good health in the future.

Please do not take anything you have for granted.  Enjoy every moment as you never know what tomorrow might bring. 

Troy

Getting out of ICU TODAY!!!!!!

     What a change over the last two days for Pam.  The fluids coming off the body and out of the right lung have really made a difference.  I went home Monday at noon and she was breathing well with oxygen and fairly calm and doing well.  When I came back last night she was more alert, talking in whispers, eating pudding and ice cream and looking way better.
     When I arrived this morning she had no oxygen help at all!  She is looking good and the team is really pleased with her progress.  They have no medical reason to keep her in ICU and have started the process of getting her transferred back to HSCU (downstairs where transplant patients are). 
     She is looking and doing much better.  She is for very good reason SCARED.  She is starting to realize a bit more about her situation over that last month as she is comprehending more now with sedatives off.  She is understanding that her body is really weak and scared about that.  I think she is scared that this issue could all happen again.  We will obviously have to work through all these issues as they are real and the reality is that she is going to be at risk for complications forever.

     But today we are not thinking about that, we are celebrating leaving ICU after 32 days.

     I will keep you posted on the transition after if happens.
Troy

A long exhausting road

Hi everyone, this journey is not going to get easier anytime soon.  Pam was doing great on Wed. and Thursday last week; starting to eat pudding, some faint whispering, breathing with some light support.  She even got some Physical Therapy while in bed.  Just so you understand where she is, PT for her is the therapist lifting her limbs and stretching them.  She cannot physically move her body.  She is just starting to be able to lift her left arm very weakly off the pillow, can't quite get it to her face.  But, the fact that she was able to receive this treatment was great. 
     Then on Thursday afternoon her breathing started to become difficult.  They heard crackling in the lungs again.  By Thursday night at 11:30pm I was standing at her beside with 3 doctors, 2 nurses, 1 respiratory therapist and the emergency airway box (a big black tool chest with the intubation tubes and tools to put in the breathing tube down the throat).  Pam was extremely anxious and her breathing was very labored.  She did not like having the mask over face.  We talked it over and I stressed to them how stressed she was.
    We were able to get her calmed with a helpful drug and they put her on a high flow O2 system under her nose.  This settled things down and got her thru the night.  After 5 short hours of sleep in the van I returned to her room and she was still breathing hard but under some control.  They were putting her on the pressure support mask again to keep air moving deep into her lungs.  Her is why: they did a CT of her lungs and found that they were cloudy again and compromised on both sides.   This felt like a huge kick in the gut.  It was exactly 4 weeks since she had been admitted to ICU and it felt like we were right where we started (only with a whole bunch of other stuff having happened to weaken her over the past 4 weeks).  
    They started to add a med called Lasiks (sp) to drain fluid off her body.  They were hoping this was causing the issue.  She has continuously been getting lots of fluid added with all the drugs going in.  It is hard to keep up with the amount and she becomes fluid positive in the long run.  This fluid starts to go places and her body reacts.  She then gets whats called "3rd spacing", it is when the fluid is outside the cells or organs it is supposed to be in.  It puts pressure on the areas it is surrounding.  They were hoping this was what was happening to Pam and not another lung infection as they are already treating her for everything.  Not really anything else they can give her if something new pops up.
    So Sat. and Sun. she spent a lot of time on the pressure support mask and getting lasic's to try and make her fluid negative for a while.  They drained 4 liters off on Saturday and another 1.5 yesterday.  Off course this brings other issues like potassium and kidney function.  They have been pumping in the Potassium (K) to keep up with what is lost in the large amounts of urine she is putting out.
    This seems to be working  as her lungs seem to be clearing.  When they took the x-ray this morning they were more clear, BUT, she has a "moderate" pnumothorax in her right lung (slightly collapsed lung).  They think this might be due to the pressure from the breathing mask.  They are putting a tube in her side as we speak to drain air/fluid from this space in a hope that it will re-inflate and her breathing will continue to get better.
     Another issue is her blood pressure.  It has started to run quite high continuously even when on medication.  They are sorting that out and trying different combinations to keep it in check.  She also started to drop her body temp last night and is in a cold sweat.  Her body temp is a few degrees low.  They are checking on medications to see what might be causing that. 
    SO - at the end of the morning rounds, they said she is actually doing better.  Her lungs are clearing up, the tube is hopefully going to help them even more.  Her kidney function is improved, liver is stable.  She has been off the vent for 1 week even with all these lungs issues.   We are hoping that tomorrow will be even better.
     I am heading home today for Tuckers 6th grade promotion celebration!  The boys finish school tomorrow and we are basically going to move out of the house for about a month.  They are going to go to Bethel to be with grandparents and play in the pond/river/woods.  They are then going to head for a week in Mass. and a week in York, ME to play with cousins.  We will be back in Bristol for the 4th of July.   I will be staying at hospital or in Bethel to be near Pam.
    I was able to take a nice break with Michael and Dan on Sat.  We went out for breakfast, hung out for a while and even watched the first half of the US world cup match over a pint.
    Thank you everyone for all your help with the boys, sports, school, meals, and all the other stuff you are doing.  We are truly grateful and feel very lucky and blessed.
Troy

Positive Changes

Sorry for the wait between entries, it has been a busy few days.  Pam has been doing better.  As you all know I am saying this with cautious optimism that it will continue.  But I must say that I feel some of the pressure leaving my chest for now.  Pam was sedated  for the weekend and I went home to spend some time with the boys.  They were trying to get a grip on her liver, kidney, hymolysis (sp), PRES (brain swelling due to high BP). Oh yeah, this is new to all of you, she developed a brain symdrome due to high blood pressure that caused her to not wake up last week when they cut all the sedatives.  This is why she was unable to stay off the breathing tube, brain wasn't working properly.  At this point I pretty much assumed nothing else could possibly go wrong.

So I went home to be with the boys while the DHMC staff worked their magic: and it seems to be working.  On Monday I was called and informed that they were taking out the breathing tube again.  I happened to be at Fort Ticonderoga with Sam on a field trip.  When I got home and checked in they said things were going well and for me to not come down as they didn't really want anything getting her agitated.
I came down on Tuesday and she has been doing well off the respirator since (she has been 52+ hours off of it, the longest since she entered ICU).  Her liver has improved, the hymolysis is improved, the lungs look clear still, and the kidneys have stabilized (not improved however).  Her breathing continues to be faster than they would like and she is actually below normal temp a bit.  I am trying hard to get her to eat some really bad Ensure + pudding mixtures in an effort to avoid a feeding tube in her nose.
The biggest issue right now (although lots of stuff still not normal) is ANXIETY!  Pam is really stressed, she cannot rest or relax.  She cannot move her body due to weakness and this is really bothering her (and when I say cannot move, I mean she cannot lift her hands off the bed).  It is going to be a long and slow recovery from this ordeal.
This is positive news!  She is doing better!  However please understand that her condition is now one that will not simply just go away.  Some of these issues will need constant attention, some will clear up if we are lucky and she responds well to treatment.
It has been an incredibly long and stressful month. I cannot tell you how fortunate we feel to have such wonderful family, friends, neighbors, and NURSES and Dr.'s.  Everyone has been incredible.   I can never thank everyone enough for all of your help, but THANKS!
I will post again in a couple of days before the weekend, hopefully with more continuing good news.
Troy

Holding on

Hi everyone.  Here is a quick update on the last few days:

She has several things wrong (can't remember names of all of them) but they affect her blood and now brain.  They took her off the vent on Wed. and she was doing great.  On Thursday however she tired again and had to go back on the vent.  She never really came off her sedation and became coherent, this is concerning to the team.  In the meantime she tested positive for CMV,  a virus common among transplant patients.  She also tested positive for some blood condition (big science name, sorry).  Basically the platelets are breaking up and odd shaped.  She has also been running a low fever again.

So they did CT scans last night of her head, chest, and abdomen.  Lungs look good (even improved some), liver looked good and counts on it have stabilized.  Still many unresolved issues.

So, bottom line:  Pam is very, very sick.  We should all brace ourselves for the worst, and hope for the best.  She is a fighter and her blood pressure continues to be strong, they are trying to treat things as they come up but she is a very complicated case.  Cross every finger and toe, pray, rub beads, do whatever your lucky/healing/faith actions are.  The Dr.'s are doing everything they can here and so is Pam.
Hoping for improvement.
Troy