Sprung, Smashed and So Long

We live in the cream house with the big tree in front...

Having met the departure requirements, I was sprung from the hospital on Sunday. I got my first look at the apartment that Beck found so fortuitously. It’s perfect, 2BR, 2 baths, and a sunroom. Gorgeous. On Monday, the home health care nurse arrived with medical supplies, an IV pump and magnesium. Nurse Terry spent several hours here, teaching Beck and Linda how to set up and operate the IV pump. Being intelligent women, it still took them a few days to master the process.


Tuesday was my first scheduled visit to the clinic for labs. (The clinic is a zoo!) Late that afternoon, the clinic called to say the level of one of my meds the MOST important of them was too high, stop taking it immediately. (This is the drug the doctor described as THE life saving drug, an immunosuppressant).They seemed to think that perhaps we had taken a pill prior to having blood drawn against their instructions. I disagreed but promised to return on Wednesday for more labs. Long story short, they kept getting the same readings every day, so on Friday they decided to draw the blood peripherally (as opposed to from my catheter). That proved to them that there was an issue with the catheter.....subsequent blood draws will be peripheral (thank goodness for good veins). The doctor and nurse practitioner both agree that as of Friday I’m doing extraordinarily well and my “numbers” look great. Beck and Emily are task-masters and keep me honest about getting exercise as tolerated, eating and drinking appropriately.

Thursday started with a shock. We went out to the car to go to the clinic and found the car has been broken into, the window smashed and handicapped placard stolen. Handicap placards are in high demand in The City as parking is at a premium and if you are lucky enough to find a space, a placard allows you to do so w/o time limits. After returning from the clinic, I found a glass company to fix the window that morning at our apartment. Beck made 2 trips to the ONE DMV in SF to get the placard replaced. Luckily it’s fairly close to where we’re staying. The placard now remains in the apt, and Beck diligently watches for parking patrols, and moves the car if necessary. Linda, yet again, postponed her return to Portland so that we could care for these things and not leave me unattended.

On Saturday, Emily arrived from Manteca with car load of requested items. Beck went home for the day. Emily masterfully operated the IV pump based on the instructions written by Beck and Linda. On Easter Sunday, Rick, Beck and Emily enjoyed a sumptuous Easter dinner of turkey and the trimmings. With the bazillion trips into SF, Beck and Emily have found different routes in and around The City. We also said so long to Linda. She returned home after 2 weeks of selfless assistance. We were grateful to have spent the time together.

The weather has been beautiful this week, so Beck has taken the opportunity to walk to dog that lives below us….actually, they walk each other in and around Golden Gate Park….soooo MUCH nicer than the streets of Manteca. Gotta love the flora, fauna, architecture, and art not to mention the diverse population!

A public thank you to Emily for manning the fires on the home front all week, then giving up her weekend to care for dear ol’ dad. Thank you Sweetheart.

To the many whom have/continue to send cards, notes or call……WE THANK YOU! We appreciate your continued support and encouragement. It lifts our spirits and warms our hearts to know that we are being thought of. This has been a long journey with much ahead of us.

Thank you for loving us.

Homeward Bound…but where are my pants?

Patiently waiting for the 1st floor...

Greetings!

We are alive and kicking despite seemingly falling off the radar in the last week or so. I must start out by apologizing if this seems a little scattered, it is a truthful representation of our lives at this point. The days have all started to run together and what took place when all seems a bit of a blur, so I apologize for any of that that comes out here :o)

Since last updated Dad was released from ICU, although his overall state was not good. It has been a long arduous week for Dad. He has been, up until Friday-ish, continually struggling with GI issues that have been monitored closely, his stamina was slim to none, and again he had no real desire (or ability) to be out of bed. With some "Becky Encouragement" Physical Therapy was called in for a consult, as our concern was Dad’s ability to get up the 2 flights of stairs to the flat. He lasted about 5 minutes of exercises and that did him in. It really wasn’t until Wed. or Thurs. that he started to entertain the notion of food.

Friday afternoon brought everyone to the hospital for "post hospitalization training" for Mom and I, and Aunt Linda (Dad’s younger sister who arrived last weekend for emotional support and stress relief) too. This day was an emotional day for Mom and I. At that point we were not at all comfortable with the notion of him being released on Monday based on how "punked" he had been during the week, and culminated in Emily and Becky’s Emotional Meeting of the Minds with a Doctor and Physician’s Assistant (Read: emotional break down). There had been a continued break down in communication between members of Dad’s Team, i.e. doctors with doctors and other hospital staff, which filtered down to Mom and Me with many opposing answers to the same important questions, such as roughly what date are you thinking for release? Needless to say, the Lavely women clearly and respectfully made their point, and then it was like a NASCAR race. We had training for what to watch for and consider when Dad is released with the Physician’s Assistant, a meeting with Pharmacy on drugs and dosages, taining on how to clean and flush his Pic-Line, a meeting with physical therapy, being sure that the staff of 11 Long knew that we were apprecitive of all of their help Dad (arguably all of us) wouldn't have made it this far if it weren't for them. With our final conversation between Dad, Mom, and myself: You say you feel good and fine, prove it. You have to be sitting up in bed, walking, and drinking your fluids. Until you act like you say you feel WE won’t let you leave. And we’re off. The fear of mom and I not letting him come home got him moving around a bit more, and as he moved about, he started to feel better.

Saturday March 15th—HAPPY BIRTHDAY TO DAD! We got permission that Dad could have a homemade cake on his Birthday so I baked his favorite chocolate cake and took that to him. He promptly ate a piece for his morning snack! If he weren’t required to have high-caloric snacks, I don’t think that would fly, but there are exceptions to every rule! This day was also Moving Day for Mom. Who found herself, with the help of The Bertchtold Boys, packing up a few things, the least of which is Dad’s coveted recliner, and heading over to the flat (address forthcoming…). The flat is lovely, sitting off of Park Presidio opposite Golden Gate Park, it is minutes from the hospital, has 2 bedrooms, 2 bathrooms, a sun room, and came fully furnished. We are very thankful to have had this place fall into our lap with the help from a few friends.

I am also very pleased to say that as of about 1:30 this afternoon Dad is no longer a resident of 11 Long, but was released home, or what will be home for a minimum of 3 months. This too was not without a bump in the road. We received the all clear, he had his last IV medication, got in the shower and started to get dressed, "Can you hand me my clothes? Where are my pants?" It seems that in packing for the release his pants were inadvertently left out! My Dad, being his normal dignified self responds, "I don’t care, I will leave here naked if I have to, just give me something to hold in my lap!" So we did not intend to "steal" hospital bottoms, but given the alternative….

We have received numerous questions and compliments on our Team Rick Shirts as they have been out and about The City recently. I do promise that if you ordered one, that they are here, and will be enroute to each of you shortly! Linda generously stayed at the flat, and started organizing Dad’s many pill bottles, and Mom and I were able to have one last little bit of together time—at the Grand Hyatt drinking Cosmos! Oh and they were gooooooooood! It was a time to relax, celebrate finally getting to this point, and process the journey that we have been on for nearly 3 years.

It has been a long, eventful, and emotional 41 days since Dad was hospitalized and 25 days since his transplant, and we have many more long days to come. We are by no means out of the woods. We know that there is a 50/50 chance that he will be readmitted to the hospital during this next phase, and we know that it is important the we remain vigilant with his care and be his advocate. And through all of this we also know that Dad, Mom, Tori, and myself would not have made it to this point without your love and support. The cards, or as I like to call it the air assault, calls, and emails have been so much appreciated. It should be noted that Dad received more hospital greetings (via the hospital link) than ANY patient in the hospital. GO TEAM RICK!!!

A few very special Thank You’s, per Mom’s request: The Bertchtold Boys (Mike and Tom) who willingly and without hesitation gave us a Saturday to help make the move to The City much easier (despite having to stop 3 times to re-tie the recliner :P) Aunt Linda, who has come and provided direction, organization, and focus during this chaotic week of transition, and who has graciously offered to stay-on longer to help make sure things are settled. The Staff of 11 Long—None of us can express enough how thankful and appreciative we are of the doctors and nurses who work on that floor. They are amazing, and we cannot sing their praises enough!


Much love and many thanks!
Emily (with Dad, Mom, & Tori)

Spirit Needed

The good news is that Rick was released from ICU last night and taken back to his floor. He continues to need oxygen, however that is lessening as his O2 levels are balancing out quite well. While we were all relieved to have him back on 11 Long and the pulmonary issue seemingly under control (Emily was eavesdropping on the consultation outside the door she overheard the doctor say ‘we dodged that bullet’), Becky and Emily were discouraged to find Rick overall not feeling well today. Simply put his body is worn out. We find him again fighting nausea, GI issues, and the catheter site is again being monitored as it is showing signs of infection. Generally, he is weak and lethargic. He hasn’t eaten anything in about 9 days, and hasn’t been out of been bed for about a week. He is tired of not feeling well.

We are all tired of this road we are on. It seems like we get over one bump in the road and another one comes up. We are not entirely convinced that we are not on the same bump with dips in the road

His blood counts have continued to increase steadily, the doctors are all very pleased with how the new cells are growing. We heard today "you may have seen the last of your transfusions" (while he is in the hospital, post-hospital is a whole different ball game).


This has been an emotionally draining week for all of us. While Mom and I took great Care not to photograph Dad in his present condition, he felt different about the situation and wanted to take the opportunity to show you how he feels:

Please keep us in your continued thoughts and prayers.

Much Love,
Rick, Beck, Emily & Tori

p.s. The shirts were all the rage on the floor today! Pom Poms provided by Cheer Team Capts. Maria & Kermit

One step at a time

Greetings,

Mom was not kidding he really is hooked up and monitored from here to hell! Things are looking better, he is still not ready to be released back to his floor, but they are slowing looking up. The Doctors (11 Long, ICU, AND Lung specialists) do not believe that he has an infection in his lungs which is good news. Earlier this evening he had 2 extra liters of fluids in him, so they are working on getting rid of that (he is peeing A LOT right now!) to hopefully prevent any future pulmonary edema and infection. His breathing is getting better, and his O2 levels are getting back to where they should be. They are working on weaning him down on the O2 that his is receiving, and we are working on taking ‘Big Breaths’ to hopefully have him off O2 at all. But one step at a time. They will continue to monitor his lungs to make sure that no infection develops, monitor his O2 levels to make sure they don’t drop, in addition to his overall state.

I mentioned the hallucinations to the doctor this afternoon and he said that can be a side effect of one of the drugs he is on, so they are dialing that back, and hopefully they will subside. Not gonna lie, I think part of us is sad to see them go, when he was conscious of what was happening they could be pretty funny! But if this means his inability to tell the difference goes away, we’ll take it. He is not mentioning being in pain as much, and admittedly isn’t using his pain button as often as before. Also good news. He slept for most of the day but late this afternoon we watched some TV and he sat up in bed and drank some broth. He looks better over all in my opinion, both of his 11Long doctors have mentioned that as well, and he says he feels better. We hope to have him back on his floor sometime this weekend, if all continues to improve.

GOOD NEWS: Diane’s cells are kicking butt and taking names! They are growing quite well, there are no signs of GVHD, overall they are happily nesting in their new home.

Thank you for your continued thoughts and prayers. We take each day as it comes, one step at a time, some days as you can imagine are better than others. But one of the things that continually amazes us is the number of people who are thinking of us and lifting us up, and that shines light on even the darkest of days.

Much Love,
Emily (Mom, Dad, & Tori too!)

p.s. Also for those of you that are sending him messages via the hospital link, please do NOT put his room# as L1122, there is someone else in that room now, how rude :~) You can simply put L11 (or leave it blank) and it will get to him wherever it is that he may be. Thanks! https://www.ucsfhealth.org/adult/contact/patient.html

A bump in the road...

Greetings,

Rick has continued a downward slide since late last week culminating with him being transferred into ICU on Tuesday. He has Pulmonary Edema (fluid) in his lungs, his carbon dioxide levels have been high, and he was having difficulty breathing. According to the Doctor and Nurses he was very difficult to arouse, almost non-responsive. He has been very confused and has slid from conscious hallucinations (i.e. he could vividly describe what he was seeing, but knew that when he opened his eyes it would not be real) into greater states of confusion and adamant that he is not hallucinating. He continues to come in (more often than not) and out of sleep and has not been out of bed since last Saturday.

At this time he is receiving very high levels oxygen to help balance out his O2 and CO2 levels, and is receiving IV nutrients. In all reality, we do not know when we will be released back to his floor, we would guess he would remain in ICU for another couple of days, but we really don’t know. Mom says that he is hooked up and monitored from here to hell, I will see this first hand when I see him tomorrow.

The GOOD news is that we have started to see engraftment (the transplant is taking hold) and the cells are growing well. There was actually a concern that the white cells were growing at too rapid of a rate so they cut off injections which were stimulating growth.

Much Love,

Becky, Emily, & Tori

So it goes...

Hi all,

This weekend we have found that Rick’s mouth, tongue, and throat are covered in sores which are causing him extreme discomfort and his pain meds have been upped as a result. He is now on oxygen as his O2 levels have been fluctuating. Due to his inability to swallow all of him meds are now being administered through his IV. Beck was at the hospital today and states that he was not at all at a functioning level. We are in a wait-and-see pattern at this point, although he can answer questions when probed, when speaking of his own volition he doesn’t always make sense and his speech is garbled.

As always, we cannot express enough how much your outpouring of love means to us, and brings your love and warmth into his hospital room. Becky and Emily would also like to extend a special thank you to everyone who has extended themselves to us during this time. A simple message left on our voicemail letting us know that we are in your thoughts, and those who have invited us in for a meal or brought one to us so we don’t have to cook. We are burning the candle at both ends, and are continually exhausted, but these gestures of love help to keep us going and give our batteries a much-needed boost. Continue to keep us in your thoughts and prayers. More as time tells…

Much Love,