Reverse Transfer Day: March 31

As I write this, Peter is in an ambulance on his way back to Salinas and we are driving home! I had my last breakfast at My Rosegarden Bed and Breakfast and thanked our wonderful hostess for her oasis of rest in our crisis. The ambulance arrived on time and with one last suture removal, we were on our way. I would be absolutely remiss here if I did not give total cudos and thanks to all of the wonderful medical and nursing staff for giving Peter back to us. We will be back at UCSF in a few months when Peter undergoes additional surgery. Thank you UCSF Medical Center!

UCSF Day 17: March 30

Great news! Porter has been approved for the Acute Rehab Unit at NMC! Bad news is that it took so long to get approvals and make arrangements for transport that he can't leave until tomorrow. He is pretty disappointed - but waled 15 minutes with PT and 10 minutes with mom and dad! He is now eating some although he is hypersensitive to smells which make him nauseous..he says he can taste what he smells (he included dads farts in that discussion). Mom thinks it is a reaction to flagyl, one of the antibiotics. Plan for tomorrow...ambulance is supposed to arrive around 9:30 to transport him!

UCSF Day 16: March 29

Banner day! Peter walked up and back in rhe ICU for 10 minutes and.....transferred out of the ICU!!!!!!!! He went to the cardiovascular telemetry unit. Heard from the case manager that our insurance company is not sure that this previously healthy 25 year old male is ready for acute rehab...even though the physicians and therapists all are in agreement that is what he needs and is ready for...apparently our insurance company thinks that he might need recovery time in a nursing home...the doctors and therapists are adamant that he either go to an acute rehab facility for intense physical therapy or stay at UCSF until ready to go home. So, we wait...we live in an interesting world where some insurance adjustor (who has never even seen the patient, reads the medical notes and can over rule the healthcare providers...it's all about money and cost. However, God bless Obamacare without which Peter would not be on our insurance plans!

UCSF Day 14 & 15: March 27&28

Apparently in my new reality we had two March 25 this year....didn't blog yesterday cuz I was just toooooooooo tired to focus. So on Tuesday Peter had a CT scan and the first part of his swallow evaluation. Everything stable on CY, drained a little fluid collection which kinda freaked him put a little :). Swallow eval was more fun cuz he got to swallow liquids and was given supervised ice chip privileges. Spending lots of time up in chair as well as walking with PT and working with OT on putting on the Chuck Taylor's. Yesterday he walked the length of the unit twice. The second part of the swallow eval was a fiber optic exam while drinking and eating. Yay! He can now start a mechanical soft diet. Mashed potatoes here we come! He has orders (finally) to transfer out of ICU but alas, no beds.

UCSF Day 13: March 25

Left off one happening from yesterday that in the past both Art and I would have reacted differently to. Sometime Sunday afternoon, someone backed into the side of our car - no note....it seems however that we have both decided to not sweat the small stuff- and right now, everything besides Peter is small stuff. That's why we have insurance. Plan for Monday is to remain off of the ventilator all day, work on Physical Therapy and continue to wean off some of the medications. Peter will stay in ICU until some of they meds are off (not given except in ICU) and until they are sure he can manage his airway. However, now for two REALLY big pieces of news: Peter walked twenty feet with the physical therapist today!!!!!! He actually got to see the gorgeous views out of the tenth floor ICU windows. Absolutely beautiful view of the Golden Gate Bridge and the bay. Second piece of good news is that his doctors are beginning to talk about transfer for acute physical rehab...that would mean transfer to Natividad and HOME. Doctor said maybe as early as this weekend...thinking probably more like early next week. He is scheduled for another CT scan tomorrow (with that pesky IV contrast - but kidneys are good). Should have more information after we get the CT results. Didn't leave the hospital til after 10:00pm cuz he wanted us to stay so it was a long but very positive day. Art and I go to dinner every night at about 6:30 since we are not allowed in the ICU between 7:00 and 8:00. We have found a couple of new "favorite" restaurants.

UCSF Day 12: March 25

Came downstairs today to another wonderful breakfast. I can't express enough the comfort we have obtained by staying at My Rosegarden Bed & Breakfast. It is so much more like being at home...and since we knew this was going to be a big day, we needed our energy. BIG DAY! Peter is spending time off of the ventilator with just a "trache collar" for oxygen. Four hours off, one hour on...then back on at night to rest. He also sat uo in a chair for the first time (the type they can slide him to to decrease his work) - but PT starts in earnest tomorrow. Learned today that there is a 21 year old here on ECMO for severe pneumonia. There have been several others but this is the closest to Peter's age. The philosophy here is pretty straightforward - started early this is a very effective treatment modality. The other big news of the day is that they put Peter on a talking trache for awile and we got to hear his voice! He told Jaime he loved her and said (in true Peter fashion) "waz zup" to Marissa - made her cry! Art and I found a tapas bar for dinner and enjoyed some paella. When we got back to the hospital Peter told us to go back to the hotel and get some rest!

UCSF Day 11: March 24

Peter stood at the side of the bed! Still on the ventilator but tolerating 40% and weaning the positive pressure. Art went to Salinas to check on his mom and do a few loads of laundry. Peter firmly believed every person who came in the room should give him water. Which would be fine except he is not allowed water....when refused, he would "salute" that person and try with another. The good news is that fiesty = good for rehab! I think that both Art and I have reached new levels of exhaustion. Art is spending a minimum of 4 hours a day driving on top of work. Patti spends 12 to 14 hours at Peter's bedside. Long, stressful, emotional days.....at least we are making small steps in the right direction.

UCSF Day 10: March 23

And the word for the day - restless! Peter sat on the side of the bed again today. Better control of his head and body. It is truly amazing how qiickly such a burly guy can become de-conditioned. Less sedation today equals more restlessness. Good news is that he is totally appropriate. Gave dad two thumbs up when dad got here after work...and when asked what he thinks about all this- gve him a salute with a different finger. It is so obvious he wants to say things but with the trache in place is unable to talk - reading lips just doesn't work well and is frustrating for all concerned. Hi is tolerating lower amounts of oxygen for longer periods of time. Kidney function is good after the contrast...and there is no sign of infection in that belly!!!!! Progress even when only baby steps is still progress.

UCSF Day 9: March 22

Amazingly, tomorrow will be five weeks since Peter was first hospitalized. From such an innocuous start to all he has been through. Today, fevers continue with no identifiable source- so we are doing a full fever work-up today. Cultures of everything, blood, sputum, etc. doppler studies of blood vessels in arms and legs to look for cloth, an ultrasound of heart to rule out endocarditis (valve infection). And the scariest test, CT of chest to rule out blood clots in the lungs and abdomen to rule out infection in abdomen. They want to use contrast which scares me in light of our recent brush with renal failure. While acknowledging need, I am alone in San Francisco being asked to make decisions that can have serious impact on his recovering kidneys. Quick call to Art in Salinas to make sure we are in agreement- we will allow the contrat study and mom will hold her breath pending tomorrows lab work. The good news of the day- Peter s more awake. He actually sat on the side of the bed with physical therapy, ventilator, chest tube and multiple drains and all. And before we left for the night, he tried to hug us both. Not quite possible with all equipment so I asked him to blow me a kiss- and he did. Maybe mom will sleep better tonight - even though she is worried about those pesky kidneys!

UCSF Day Eight: March 21

I think today I became an unofficial San Franciscan. I boarded Muni with my Clipper card, made my transfer and arrive at UCSF in 30 minutes (only traveled about 2.5 miles). The new place I am staying is wonderful. I went downstairs to a wonderfully prepared breakfast complete with quiche, yogurt/fruit compote and a muffin. Definitely makes a positive start to the day. I can't be in the ICUS between 7:00 and 8:00 so I arrive at 8:00 (unless I am worried or awake). Peter had a busy day. Started with a dye/X-ray study to see if they could use the gastrostomy tube for feedings and get rid of the nasogastric feeding tube. Then he had a drainage tube inserted in the right chest to drain a collection of fluid. Hopefully that will help his oxygen levels by enabling that bad right lung to expand more. They are slowly weaning the sedation- no easy task considering how long he has been on these drugs. He is restless at times but mostly following commands. Another REALLY long day. I look forward to going back to work so I can "rest"!

UCSf Day 7: additional

Realized I didn't explain the reason for the tennis shoes - other than the fashion statement. The staff at UCSF have been concerned that Peter has significant "foot drop". The heel cords shorten/tighten from extended immobility. This makes it more difficult when physical therapy starts. They put him in foot braces as soon as he arrived but as he weakens it is obvious he doesnt like them and he tries to kick them off. High tops tennis shoes help to keep his foot in a more natural position.

UCSF Day 7: March 20

Our usual routine (if there is such a thing in our world right now)is Art wakes up at 4:45 am, checks in with the hospital, reassures me then leaves for work. Today learned that they had to increase Peter's oxygen dueling the night so mom went to hospital at 5:00am - since I was awake, why fight it. Actually, Peter was doing ok and they dropped oxygen back to 60% pretty quickly. Pretty much a mellow Peter day as they held off on further weaning of sedation pending an afternoon CT scan of his chest - didn't actually go until almost 6:00 pm. I checked out of The Carl and into a little B&B on the other side of the park. Not walking distance but better for my spirits. Kathleen (owner) says she will feed me in morning to take care of me so that I can take care of Peter. Jaime was sitting with Peter so my next mission became finding a pair of "Chuck Taylor" high top tennis shoes - per the younger generation, they had to be "Chucks". Mom chose the color - lime green. I think it will match Peter's sense of fashion! Art arrived as Peter was leaving ft CT scan so came back after dinner so they could visit. Plan for tomorrow is a more awake Peter - should be an interesting day.

UCSF Day 6: March19

It's amazing to me how slow the passage of minutes and hours but how quick the passage of days. Peter has been sick for over a month. Where did the time go? How did any of this happen- sometimes it feels so surreal. Yesterday, the doctors were talking about moving the ECMO catheters from his groin to his neck. This morning, his ventilator was down to 40% oxygen.....now talking about removing the circuit completely. Despite hearing that he tolerated lowering the flow, we both were worried that this meant they were giving up - when actually they were telling us he was doing better and they felt he could manage without the circuit. Peter went to OR at10:30 - it was almost four hours later that we learnedaf he was off of ECMO and managing with "just" the ventilator - on 60% Oxygen as well as nitrox. Nitrox is another therapy that became available to us because of the transfer to UCSF. Peter's BFF Dan got to see him for a few minutes tonight....definitely meant more to Dan than to Peter who was pretty heavily sedated after his bout in the operating room. I was SO glad the nursing staff told Art that today was a day he needed to be in SF - it was a long, scary day that was worth every minute....I keep telling mysel that a journey of a thousand miles begins with just one step. We made a big step today.

UCSF Day Five: March 18

Checked out of the Marine Memorial this morning. They have been wonderful - special thanks to Randy and Linda for making that happen! Checked into The Carl...what can we say - there is a bed and a bathroom walking distance from the hospital. Marissa and Will arrived around 9:30, Jaime slightly after. They have mastered the maze of SF public transit. Sitting in the waiting room, minutes seem like hours. Art and I alternate time at the bedside, trying to calm Peter with voice and touch when he gets restless. It's obvious that he can't seem to find a comfortable place. I spent four hours sitting at his bedside holding his hand while he slept - he held on tight while I watched his oxygen saturations go into the high 90s (a good thing). He started this time on 70% oxygen, it was down to 50% by the time we left for the night. Before we left, Peter blew us a kiss! Plan for Monday is to move the cannula from the groin to the neck so they can move him more. Will let everyone know how that goes.

UCSF Day Four: March 17

Long days of sitting. Great support from Kaydee who brings me snacks and lots of hugs. Art spent most of day at Peter's bedside after being at work for two days and only getting limited time when he drove in after work. Robyn spent time yesterday with my cat Mercy curled up on her lap at our house. I miss Mercy hugs and Mackenzie kisses when I am feeling vulnerable. Marissa will be here tomorrow which really helps. Jaime is trying to catch up on school work now that she has a week off. Peter's oxygen needs vary based upon his restlessness- 50-60% oxygen but much less PEEP (positive pressure in his airways) needed. They are slowly weaning off his sedation medications - he was on so much they have to monitor the weaning closely. It is a gray stormy day in SF today.... Kinda like my mood. Tried to get a cab back to hotel late last night but I think they were busy picking up St Patrick day partiers. Had to catch MUNI were there we're many revelers looking for "Irish car bombs"!

UCSF Day Three: March 16

We did a repeat of the bronch today. There were much less secreations and plugs than there were yesterday. We are starting the slow process of weaning him of the strong sedation and pain meds that he has been on for the last four weeks. It's a very long and slow process. Peter is waking up slowly and even under all the meds we can still see peters funny persinality show through. Art was talking to Peter about how Marissa has been so supportive for him and the family since this started and Peter looked at him like who is this sister you are talking about and what have you done with my normal one? Other than that it is a lot of waiting and we are all tired.

UCSF Day 2: March 15

Quiet start to day. Art went home to work for the day while i stayed here. Even the waiter at the hotel "encourages" me to eat a little more - i focus on getting a little protein. Peter seems to blink or raise eyebrow appropriately. Waiting mode early on until procedure time. They did an "open" tracheotomy at the bedside - brought the OR to him since he is so sick. After surgery they did a bronchoscopy - able to take a good look down inside the lungs. Per Dr. K, there were "tons" of thick plugs in the right lung - we knew that was the problem lung but they had not been able to do a full bronch in Salinas with him so sick. They will probably look again tomorrow and at regular intervals. I was missing my daily coffee deliveries until one of the kids friends, Kaydee, came by to sit with me after the procedure and then brought us a care package last night. We have been so blessed through this with love and support.

UCSF Day One: March 14

After catching a little sleep, arrived at hospital around 9:00 am. LOTS of stuff going on as multiple teams of docs assess. Due to late arrival/scheduling, trache and bronch postponed to Thursday. Good news/bad news...bad news was there was a problem with his circuit and they had to switch out....good news is he tolerated it! ECHO of heart was also good news- the right sided heart function looks "normal" which it had not a couple of days ago. Marissa and Will were here all day, Jaime BARTed over after class. REALLY good news is that he is tolerating ECHMO and transfer well. Kidney function continues to improve. When he wakes Jo he nods and squeezes my hand. We definitely feel all of your love and support. Thursday- trache and bronch to look inside the lungs.

The Transfer

Actual procedure began around 5:30 pm last night. Long waits but no problems. Boy is Peter gonna be pissed that he was sleeping during the transfer. Two ambulances and crews (yes two - full back up system) plus the team from UCSF. Lights and sirens from Salinas to SF. They arrived about 25 minutes before we did (1:20 am) and were pretty busy so we got to peak at him and thn we left for the hotel - falling into bed at about 3:00 am. I was right on my first post - it was a long day!

Transfer Day- updates

So it looks like the team will arrive here around 1-2 pm. It will take a couple of hours to prep him for transport.....

Transfer Day

As an individual NOT in my twenties, this process is new to me and somehow I have already lost my first post.....yesterday was a roller coaster day. Not sure if he was transferring, not sure if he could even tolerate the short transit to radiology for CT scan. Good news is CT did not show abdominal infection. They were able to begin steroids last night. We are praying that those begin to work and start him down the healing path. Not sure of schedule for today - no one seems to feel that family members need that kind of update- they obviously don't understand how Patti's brain works.....

Transfer Day-day 25

I think today is going to be a very long day.