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"!