Obstacles

Sometimes it feels less like two steps forward and one step back, and more like running an obstacle course. Pete has successfully navigated the course so far and with any luck we will be out of the hospital soon and on to the next lap.  As of today, the plan is to discharge Pete from the hospital early next week and transfer him to the Cherry Hill Acute Rehab facility.  If you want to visit Pete while he still has an awesome penthouse view, you better come soon!

Dialysis again

After having a couple of days off of dialysis, Pete had to start off today with another dialysis session.  We keep hoping that each session of dialysis will be his last . . . Pete's kidneys continue to improve, but they are not quite able to handle everything on their own yet.  

Pete was able to walk all the way around his unit yesterday and completed several trips in his wheelchair (completely under his own power!).   The highlight of the night was when Pete was able to go back down to the ICU and thank several of his nurses that cared for him through some of the darkest stretches of his journey.  We are both so grateful for the excellent care he has received and it was really wonderful to pass some of that appreciation along!

We've updated the visitor sign-up and while it is not necessary to sign-up before visiting, it does give Pete an idea of what his day will look like and something to look forward to.  Thank you for the support and encouragement!

Moving right along

Pete's kidneys continue to improve and at this point is down to dialysis every third day.  We are hopeful he may be able to come off of dialysis completely by the end of the week.

More and more the focus of Pete's care is on his rehabilitation.  He spent almost a month in bed and lost over 50 lbs and has had significant muscle atrophy.  Pete has a lot of work ahead of him to rebuild muscle and fine motor skills.  Currently, Pete is moving out of bed and sitting up in a chair for all of his meals and going for short walks two to three times a day (this morning he walked 200 feet!).  This weekend we got a rare treat and Pete was able to move to a wheel chair and I was able to give a tour of our home for the past month.

Pete continues to enjoy all the visits, well wishes and all the food!  Thank you!

A picture is worth a thousand words. . .

Work in progress

Today, Pete's kidneys showed the further signs of recovery and improved function.  This is a reassuring sign and the doctors' are hopeful they will eventually recover fully.  

The other milestone Pete achieved today was the removal of his feeding tube.  Over the past four days Pete has been gradually working up to satisfy his nutritional needs the old fashioned way, yesterday they turned off the feedings and he was able to consume enough that they felt comfortable removing his feeding tube today.  He was also able to eat his first meal sitting up in a chair and not in bed!

As always, we are thankful for all the continued support and encouragement!

Pete's first steps!

Pete was able to walk today!  He has been working on sitting and standing for the past couple of days and today he successfully took his first steps since February.  He made four short circumnavigations around his room, maybe tomorrow he will conquer the hallway! 

Pete has really been enjoying the visits and well wishes!  Thanks again for your support!

Buoy - nautical navigation and/or life preserving aid

NOAA / PMEL / TAO Project Office

All the tests yesterday came back negative for pulmonary embolus, which is very good news!  They have decided to continue the drug therapy and not move on to more invasive measures at this time.  The infection in Pete's abdomen seems to be under control and as long as things continue to improve Pete's last day of IV antibiotics will be April 13. With the transfer to a more private room on a quieter floor and getting his meds sorted out, Pete is sleeping better and finally slept through the night last night!

Pete continues to see PT and OT everyday, however his lack of sleep and low energy have limited his rehab routine.  He has been sitting and standing up everyday, but so far has not been able to go for any walks.

Pete's dialysis treatment has been changed to HD once every 48 hours, which means that after he finishes his treatment today he will have a full day off of treatment.  Today Pete will also be receiving two units of blood; the doctors think that the infection has impaired his production of red blood cells, but now that the infection is under control it should return to normal soon.  Hopefully, the transfusion will give Pete the energy boost he has been needing.

Thank you for your support, visits and well wishes that continue to buoy us along the way!

Speed bumps

The good news is that Pete has moved out the intensive and intermediate care units and is now installed in a private room in the Nephrology/Organ Transplant/Urology Unit. 

In the road to recovery there are several different speed bumps that are best to avoid.  Yesterday, Pete encountered one such speed bump in the form of a blood clot (deep vein thrombosis) in his right calf muscle.  This is concerning as the clot can move into other areas and cause severe problems.  Today Pete has a battery of tests lined up to further diagnosis and treat this issue.  At this point they have started drug therapy to treat the clot and hopefully by the end of the day we will have a clearer picture of how to treat it.

Since, he is on a regular floor visitors are welcome, if possible please use the visitor sign-up log.

Thank you for your continued support!

Gratitude

Today Pete was moved out of ICU (Intensive Care Unit) to the IMCU (Intermediate Care Unit) which means he has improved to the point where he requires less attention and critical care. 

Tonight I am filled with gratitude that my husband is on his way towards recovery and although it may be a long and frustrating path, we can travel it together!

Thank you to everyone who has helped to make this possible, the doctors' dedication and persistence, the nurses' attentive care-giving, our friends and family providing a wonderful network of support, love and food. Each and everyone have a made an impact and helped us along the way!  Thank you!

Tonight's outlook

After a busy meeting packed morning, we have a slightly clearer picture of Pete's future.  His abdomen could not be surgically closed yesterday and will not be able to be closed for some time yet, once the adhesions and scarring from the infection calms down.  In the interim, he will keep his current wound vac and with the addition of an abdominal binder.  Once the damage from the abdominal infection has sufficiently healed, Pete will go back for a surgery to cover the wound with a skin graft.  Given everything goes smoothly from here on out, Pete's surgeon hopes to complete the final surgeries this coming fall to repair and reverse the remaining damage. 

On the bright-side, Pete has remained stable enough that he will be able to move a step down in care and will be moving to IMCU by tomorrow.  This means he can have visitors and is looking forward to seeing some more friendly faces!  Since we are pushing for Pete to get out of the hospital as soon as possible, he is on a fairly rigorous schedule between all his PT, OT and dialysis appointments, so please utilize the visitor sign-up that Jen so kindly setup.

Pete can have visitors!!

Hi All, At Rachelle's request, I am trying out "Jooners" in order to organize visitors for Pete who is being transferred this afternoon to a room in the IMCU!!! This means he is now classified as "intermediate care" which is definitely a step in the right direction!! At the time of this posting, we are unsure of his room number but they can tell you at the front desk and I will post the room number as soon as I can. Rachelle wants me to let you know that he gets tired and overwhelmed very quickly so please don't bring too many people at one time (no more than 3) and plan your visit to be flexible if he is tired or scheduled for something. We set up blocks of three hours and you do not need to stay the entire time! Just as long as it works for both you and for Pete. The time shifts are between 11-2, 2:30-5:30 and 6-9. If it turns out you can't make it, please release your slot so others can potentially fill it. No food for Pete, yet, and no flowers/toys but cards or pictures are always welcome. And if you are sick, stay home please!!!
Visitor sign-up log

Operation day

Pete was taken down for his operation this afternoon.  He remained stable during the procedure and was returned to his room without a ventilator, good news as this was a real concern for him!  The bad news is that once they had everything open and were able to look at Pete's abdomen, they decided they would not be able to close the abdomen at this time.  At this point we are uncertain of what this means for the near future and how this will impact Pete's recovery.

We are hoping that tomorrow will bring more clarity and some answers.

Taking care of the CWO... FEED HER!

Hello All, Jennifer here at Command Central where the buzz has quieted down quite a bit of late. It is hard for us all to sustain the intense level of concern and care that showered Rachelle and Pete in the first weeks, to be sure, but here we are living the "drama" daily. And there is much more to come... Our infamous CWO (Chief Wellness Officer) is now also Pete's CWL (Chief Wellness Lackey) and he keeps her moving!!! She is an amazing woman with deep wells of reserve and is non-stop going from our house to the hospital (where she sleeps most nights... or at least tries to!), to work, quick errands, back to the hospital, back to our house, back to work and so on and so on. Never resting. If she is by chance not there, she is always calling in, getting updates, getting information, getting news. Her complete devotion to Pete is both firm and admirable. Today she did take a quick nap before getting called back in to Pete's side but she woke exhausted, not rejuvenated, as she sleeps little at night. It is taking its toll and I am worried about her as she attempts, as well, to finish her schoolwork and get credit for her Spring classes. What to do, you ask? The main thing I am focusing on is making sure she eats and drinks enough liquids. And this is tricky. We make sure she dines with us every night but many days this is the only time she stops and eats all day. Anyone out there who can help me get snacks and food to her is welcome!!! As Pete is on a feeding tube, he forgets that she needs to eat and take breaks. And she does too. If you visit her or Pete, bring her food! Snacks! Or drop them off here and I will load her down with them. Healthy, energizing snacks...! The burdens she carries are many these days... a terrible roller coaster ride she'd rather not be on. Pete needs our visits, thoughts, prayers and energy for his long road to recovery. Please keep in mind that the caregiver, Rachelle, needs us all as well. Now. Help me help her!!! Signing off, Your CCS (Command Central Supervisor)

Busy day

Today was a busy day for Pete. The morning started off with a visit from occupational therapy in which he sat up on the side of the bed for 7 min.  Afterwards Pete has his first hemodialysis treatment, which is shorter but more strenuous then the 24-hour treatment that he has been on. 

Almost as soon as he was off dialysis physical therapy came by and Pete was able to sit up for more then 20 minutes.  Since his abdomen is still open, his surgeon wanted to make sure he had an abdominal binder before attempting anything more difficult. 

In the afternoon Pete was whisked off to IR to have a semi-permanent tunnel catheter placed (for dialysis treatment) and to have the two latest drains removed.  Everything went according to plan and now Pete is back in his room resting up for what is sure to be another busy tomorrow.  The current plan is to take him into surgery tomorrow to close his abdomen.

Please keep him in your thoughts tomorrow as it is always concerning going back into surgery.  Thank you!

Back to basics

We are definitely getting back to the basics here.  Saturday was learning all about breathing, Sunday we tackled speaking, and today we are on to the big leagues of sitting up!  Pete had his first PT/OT appointment and with their assistance he was able to sit on the side of his bed for almost 5 minutes today!

Tomorrow Pete will be starting hemodialysis, which means instead of being hooked up to a dialysis machine 24/7 he will only have to have dialysis treatment for 4 hours each day.  This is also a step towards getting his kidneys functioning again.  Incidentally, seven hours after they took Pete of the 24/7 dialysis, he was able to urinate (which means, well we don't know yet).  

Thank you as always for your support and encouragement. . .

A new normal

Today was spent catching Pete up on all the fun from the last 3 weeks, meeting his medical team (first time for him) and getting little things that you don't need when you are sleeping, but make life a little more comfortable. 

Tonight, Pete has a clean shave, clean underwear and is able to voice his opinion on everything!

Just breathe

Today I got to speak to my best friend for the first time in 18 days! Since we we first met each other (5676 days ago) that is the longest period of time that we have gone without speaking to one another. 

He was successfully extubated this afternoon at 1430 (or 2:30 pm) and taken off all his sedation meds.  He had to use an oxygen mask for about an hour and a half and since then he has been breathing on his own with just a nasal cannula (small oxygen tube that rests at the tip of your nose).  The majority of this evening was spent holding hands and breathing together.  Pete has been on a ventilator for a little over two weeks now and it is taking a bit of work to remind his lungs exactly how they are supposed to function. The easiest thing for Pete was to sit with me, watch and mimic my breathing pattern until he was able to breathe again without concentrating on each breath.  By the time I left this evening his breathing was more natural and he was able to maintain O2 saturation levels at 93-97%.

Tonight, Pete is trying to get some much needed rest, so that he is able to start  physical therapy tomorrow.  Thank you again for your continued support and well wishes!  I can't tell you how much it is appreciated!

E Day!

After three successful breathing trials over the past day and a half, they decided that Pete was ready to be extubated today!  He is still very sick and still has a ways to go, but this is a definite step in the right direction!

As I write this he is extubated and doing well.  They are keeping him on an oxygen mask until he is able to maintain an O2 saturation level above 97%.  He is able to talk, but everything comes out as a hoarse whisper and a little slurred.

Thanks for all the support!

From Heather, Sam & Sidney

Hi Rachelle-

I know you've talked to Eric a few times since Peter's been in the hospital,
but we wanted you to know that we're all thinking of you and Peter. I check
the blog several times a day for any updates. (I'm not savvy enough to
subscribe!)

Sydney drew these pictures in hopes that they would cheer everyone up and
help Uncle Peter to feel better. We've had a long, cold winter and we're
looking forward to the return of the bugs.

Please let us know if there's anything we can do to help you.

Love- Heather, Sam, and Sydney

One step forward, one step back and side to side!

Pete did really well yesterday and was able to rest most of the day, but last night he spiked a fever.  Since this is a repeated occurrence (3 fevers in the past 5 days), his surgeon ordered a CT scan of his abdomen for this morning to see if they could identify the cause.  The CT scan revealed 2 new fluid pockets in his abdomen and they decided to place two new drains to remove the fluid.  The first pocket was just a collection of abdominal fluid but it was putting pressure on his lungs and hindering his breathing.  Draining this should increase his lung capacity and improve his chances of getting off the ventilator.  The second pocket revealed signs of infection, they collected a sample to culture so they can modify his antibiotics accordingly. Once Pete stabilizes from all his procedures today the doctors are talking about doing another SBT (spontaneous breathing trial) to hopefully move closer to removal of the ventilator.

Thanks so much for your continued support and encouragement!

Hazy sunrise

Last night was another difficult one for Pete.  He failed the latest spontaneous breathing trial last night and wasn't able to sleep until early this morning.  As I write this Pete is finally sleeping peacefully, but because of the difficulty last night, we are unsure of whether or not he will be able to be extubated today.  Hopefully today is more restful and we are able to move another step closer to extubation!

Thank you for your continued support!

Pictures from Julie

Please click on the "Pictures from Julie" title to take you to a slideshow.

These are photos from vacations Pete has been on and helping others on their boats. Always willing to lend a hand and drink all your beer.

Just slide

Yesterday was long and tiring, as Pete tried to communicate through a haze of medication, reduced motor skills and without the use of his vocal cords.  I found myself thinking why didn't we take sign language classes together? Over and over again.

Last night Pete successfully completed two spontaneous breathing trials!  Today we will move down another level on the ventilator (O2 35%, Peep 5) and work on further breathing trials. If everything goes well, Pete may be extubated as early as tomorrow morning.  The most difficult thing right now is getting Pete to slow down, relax and be patient.  Even after the extubation, I am told it will take a couple of days for Pete to regain use of his voice.

Everyone is excited to see Pete doing so well, however he is still very ill and highly susceptible to any germs he may encounter, so at this time he is still not able to have visitors.  Once he is extubated and able to communicate better, we can start having visitors as long as their are perfectly healthy (exposing Pete to even a simple cold virus could be detrimental at this stage). Thank you for your continued support and well wishes.

Thank you!

Awake at last!!

Pete is fully awake and refusing any further sedation medication.  After two days of remaining stable and no adjustments to his ventilator settings they are reducing the pressure used to push air into his lungs (Peep 7, down from 10).  Today they plan to start spontaneous breathing trials and if he is successful, he may be able to be off the ventilator by tomorrow.

Thank you for your continued support and extreme generosity!

Evening update

Pete has remained stable throughout the day and his status his substantially unchanged this evening.  So, in the absence of any news, here are some early photos of the sailor we all know and love!

Pete with his dad, Larry, and brother, Eric

Eric informing his little brother about life!

Napping in mom's arms after a long day of sailing

Good night friends!

Lexi's bedtime prayer tonight (Rachelle's littlest sister)

Dear Jesus...Please make Pete all well and help Sissy get all her school work done! I love you Jesus Amen!

Sleeping bear

Today looks like it will be a little more restful for Pete as they have increased the medication that keeps him sedated.  He is fully off of the longer-acting sedative (Versed) and now just on two fast-acting meds that can be easily adjusted and regulated depending on how conscious and responsive they want Pete.  

The plan is to continue dialysis to remove excess fluids from Pete's system and to help give his kidneys a break.  We remain hopeful that once Pete returns to full health, his kidney function will return as well.  But there is a nagging question, given the length and severity of his illness, of whether or not his kidneys will return to full function.

Pete is expected to remain on the ventilator for the better part of this week.  His lungs are showing signs of compression and diminished capacity due to his infection and extended time confined to a bed.  The hope is that with dialysis pulling off excess fluids and the swelling from the infection decreasing he will be able to be off the ventilator soon.

Words cannot express the gratitude I feel for all the love, support and food that has come our way in the past days and weeks!  I could not handle this without all of you! Thank you, thank you, thank you!

From Eric, Pete's brother

P & R at Butchart Gardens 2000

Pete, 

I'm very happy to hear that you continue making excellent progress. Since your medical team has started reducing some of your anesthetic - you may appreciate the following. 

The picture below was taken yesterday afternoon at my favorite beach near Tampa - Indian Rocks State Beach. You will notice the absolute lack of any recognizable wave action. In fact, the hotel pool has better waves.

The nearly flat water would be good for some waterskiing and is fairly typical for this beach and Florida's gulf coast, but get this ... I counted at least three folks caring surfboards down to the beach. Must have been optimists! ;-)  

Anyway, keep getting better and pretty soon you can be sitting out getting some sun and fresh air.

Love, E

Horizontal two-step . . . .

So some days are a step forward and some are a step back and then there are the days that are a horizontal two-step . . .

Today was frustrating for me, seeing Pete start to wake up, but not able to communicate; knowing that he wants to be off the ventilator and moving around, but is unable to do so.  The most frustrating aspect is knowing that we are pausing the move away from his ventilator and not fully understanding why.  What I do understand is that it is a delicate balance between weaning him off the ventilator too soon and leaving him on it for too long.  We are hoping that tomorrow brings continued improvements and possibly more answers.

Thank you for your continued support and encouragement!

Photos from Jeremy Fox

Big day . . .

Pete is starting to wake up! Marcus and I just came from the hospital where we saw Pete. When I say we saw him, we SAW him, the real him. In deep pain, in a deeply medicated state but the big guy saw us and moved his head, moved his hands, reacted to us. It was miraculous. I'll admit to doubting at times this past week that I would ever have that pleasure again... We were at a wedding when Rachelle called us and we left immediately. Nothing seemed more important to us than seeing him and looking him in the eyes. We were shaking with excitement. There is a long, long road to recovery yet for him but it seems, really seems, that he is on the path to wellness. They are talking about trying to extubate him on Monday or Tuesday if all is well. It was painfully obvious that the breathing tube is annoying him and he was, at times, a bit agitated as he tried to communicate with us between the waves of pain medication. It was hard to witness this but to be able to see him with open eyes and responding... Marcus thinks he even got him to laugh a little but it could have been a broncho-spasm... His vitals are stable without the aid of medicines and the medical staff (including his ultra cool nurse Ever!) seem really positive about his situation. To all you out there far away (or close!) who are reading this, thank you for everything... keep sending your positive waves - they are reaching Pete's shores. Let the healing begin!!

Pete's Mom said...

I am at home now and so I am leaving all you good friends in Seattle to be there for Pete(r) and Rachelle. I have enjoyed so much meeting and talking to you, sharing a sandwich and other treats and goodie bags. I am really impressed with you all as people and friends. Thank you for who you are. I have learned from you. 

It is really hard for me to be so far away. The Psalms will continue to be a source of strength to me. Check out 62,41,121, 73 and 74 in the order I have read them this past week. I especially like this part "two things have I heard that you O God are strong and that you O Lord are loving". 

 

-Joanne

The sun is out today

Throughout the night Pete's vital signs continued to improve.  As of this morning he is completely off of blood pressure medications that help maintain a stable blood pressure.  He is off one of the two drugs that are being used to control pain and keep him sedated.  This morning he was given a bronchoscopy to help clear his airway and allow continued independence from the ventilator.  Yesterday they started Pete on a feeding tube and have been trickle feeding him, so far his digestive system has been responding positively. 

All signs point to Pete heading firmly down the path to recovery.  We are still looking at a very long road to full recovery, however, if he continues to improve at this rate I may be able to have a conversation with my best friend sometime in the next week or two!

Thank you for all your love and support, it is greatly appreciated!

Photo from Elizabeth Snodgrass

This is a picture that I took before our nursing party last summer. Pete and I hooked up this Hello Kitty pinata (not without some amazing "sailor boy" knot work) and then decided that it was probably time to see if the keg was working.

The Pathfinders

Yay!! There aren't any photos from Pathfinders posted yet! I get to be
the first one!! :-) This is the best photo of Pete that I've been able
to find so far.

Most, if not all, of my time with Pete was spent in Pathfinders. :-)
My first impression of him was as our drill master. :-) (Is that what
he was called? It was years ago. :-) ) I was hoping to find photos of
him with the drill team, but I haven't found any yet. Anyway, I
remember my first Pathfinder Jamboree at Sunset Lake. I'd only been in
the club for a short time since I joined late in the year. We all
assembled in formation outside our cabins and Pete marched us all the
way through the camp to the cafeteria and then INTO the cafeteria for
breakfast. I was a little embarrassed (and I don't think I was the
only one!!) because the other Pathfinder clubs who were already in the
cafeteria all looked at us as we came in, of course. :-) Pete had to
run ahead of us (and I think Rachelle did too) to hold the doors open
for us. Even though it was slightly embarrassing (you have to remember
I was only 10 at the time :-) ) it was also a proud moment to be there
with "MY" club and feel like Pete was proud of us. :-) Also, I
remember that on our way through the camp we had a chant. I don't know
if we ever used it other than that one time. Maybe Pete just made it
up. But I remember thinking that it was really great and I meant to
remember it, but obviously I didn't. I should have written it
down. :-) It started out something like "We are the Bellevue
Sojourners . . . " Does Pete or Rachelle or anyone else reading this
remember it? :-)

Pete, looking forward to your recovery! My prayers are with both you
and Rachelle.

Love, Amanda

Just talked with Rachelle. Pete is doing OK. Nice and stable right now. He is totally off the Levophed and just on the one BP med. His vent settings are much better also. PEEP of 10 and O2 at 50%. So far so good. I am off for the next 5 days and will visit him. I'll write a more complete blog tomorrow.

Looking for stability today . . .

While still not out of the woods, Pete's vital signs are stable and looking better then they have since this all began.  Today we are looking for continued stabilization of his vital signs and to slowly begin weaning him off his multiple life-support systems.  The only procedure ordered for today is placement of a feeding tube so that Pete can start receiving nutrients through his digestive system again.  Until now Pete has been receiving nutrients via IV directly into the bloodstream and while this does provide necessary nutrition, it does not have the added benefits provided by a fully functioning digestive system.