Recently, A asked me “why didn’t you take us to the Fun Fair last year?”
I said, “Auntie Anne, Stacia and Shruti took you and R because I was at the hospital with Daddy. I was at the hospital with Daddy all day every day when he was there.”
As a working mother, (as any mother, I am sure!) it is always a challenge to find balance. I always told myself that there is balance in the whole, never in each single day. It was a challenge more than ever for me to find balance in that time. Sometimes I felt guilt for how much the kids were missing time with me. But truthfully, I never doubted where I needed to be. I pushed every day for recovery, for hope. I pushed out any negative thoughts. I love my children, but truthfully their very existence was only a reality because of my love for this man lying in the CV ICU.
I could be wrong, but I believe that the kids will one day want to know more about “the Hospital Time.” The girls – first R a lot, then later A a lot… asked me why they couldn’t go to the hospital, or when they would be allowed to go to the hospital to see Daddy. I’ve known for a while, that I WANT to write about that time… use my memories, and the notes I kept in my notebook daily… I mentioned it in my post The hospital time… “Love is watching someone die” and yet, I’ve struggled to sit down and do it. I think now is the time. This may be long…
I talked mostly about Wednesday, May 17th in my post Flooded with memories and I think I captured as much as I can remember about that day… perhaps the only thing I didn’t cover was that on my drive home from the hospital, I got a call from a urologist who had missed seeing me. I remember exactly where I was when I spoke to her. She told me about some side effects and swelling that had occurred due to how they installed the ECMO lines. She asked if we had children. I said yes, 3. She asked if we were done. I faltered… Tim had always wanted 4. We had said when D turned 1 we would decided if this was it or not. But we had certainly talked about it being it. He texted me on the way to his guy’s trip to Richmond “would you ever consider an IUD?” I thought “what the heck are you guys discussing in this car?” The urologist told me he could be left without the ability for more children. I almost laughed out loud. Everyone else had been edging around “survival” in every other conversation for the last 24 hours. I told her that was perfectly fine with me, if that was the side effect of this. I couldn’t wait to tell Tim how much easier (and cheaper) a vasectomy would have been.
Now I’m going to go through the notebook I used in that time to capture the important stuff. The notebook includes every single medicine Tim was on, including dosages, the names of his primary nurse and attending physician each day, plus the name of every specialist we saw. I may not bore you with ALL the details, but include the most pertinent pieces… Besides my name and phone # in case I lost it at the hospital, I doodled this in the front of my notebook, I think once when they took him out for a test. This was the song I sang to him every day…
Thursday, May 18th
This was the day of the first CaringBridge post(s). Which I shared on Facebook to let people know what was going on, and where they could look/sign up for more information. That was helpful as it gave a focal point for information and how to help…. It opened the flood gates in ways I never could have imagined, of people wanting to help us. People showed up in ways that displayed the very best of humanity.
I remember walking downstairs that morning and just as I got to the bottom landing of my stairs, Anne walked in. I was confused until she told me she slept at the hospital the night before. She had driven from Massachusetts almost the whole previous day, and then stayed at the hospital all night. I was so very touched… so very glad that someone was with him. Desperate for some positive news that she didn’t have. But I was so glad to see her, and realized oddly that it was the first time she’d been to my house. (We had moved in less than 2 years before.)
That day there was a bronchoscopy at 10am. The first I heard that word, but not the last. Dr. Desai let me stay for it. “Dr. Bobby” was the best at them and most often consulted. They did it again at 3pm, and then later when they were able to get Dr Bobby in to do it. Basically they were trying to suck the big mucus in his lungs out, caused and stuck there by the pneumonia. That was also the day they were really concerned about the blood clot in his leg, and when they shared with me for the first time that due to everything else going on, specifically the blood imbalances, they couldn’t do what they would normally do to effect that and get the flow of blood to his foot. They told me this could lead to a below knee amputation. How Tim would have hated that. But then they told me they were eager to get the ECMO settings down, to get him off ECMO as soon as possible. And that they wanted to do a CT scan on his brain to see what effect the blood imbalances may have had on his brain. And that hit me hard. Up until now they had mentioned every single other system/organ/you-name-it, but they hadn’t mentioned his brain. That was my biggest fear. And I remember thinking: If his brain is damaged, if he’s not TIM, is there even a point of all of this? I did say this out loud to our friend Anne, and she told me yes, there is always a point. Most importantly they told me this day that we are “not beyond hope!” And that we needed to get his platelets up to decrease the risk of a spontaneous bleed (particularly in/to his brain). His platelet count was dangerously low – they said 10K – below 20K there is a significantly increased risk of spontaneous bleed. That day the Kidney doctor, Dr. Adam Pearlman, told me his senior partner was coming on tomorrow. He had been there since the beginning with the kidney “CRRT” machine being one of the first machines, but I smiled and nodded about someone new. Dr. Pearlman was awesome. His bedside manner was one of the best I’ve ever experienced, he was patient, and kind and compassionate, and if I ever have kidney issues (or anyone close to me does) I will seek him out.
I remember one other thing from that day/night. As I was leaving the hospital, I looked in on the family waiting room where Tim’s parents and his best friend were. Doug had done so much to organize the troops. New email address, paypal account, website, multiple google doc spreadsheets to organize and share information… he was working hard on his computer. He had been there when I had to tell Tim’s mother the news of the day. As I walked out I turned back to the three of them and there was some comment about how someone was taking care of the kids, and how so many some ones were taking care of all of the things. I mentioned how bad Tim was at accepting help. “so I guess its best that it’s me that has to”… then my heart dropped. Did I really just tell these three that it was better that he was sick instead of me? Fortunately in response to the look of horror on my face and stammering, they all jumped in that they understood what I meant…
Friday, May 19th
This was the day they confirmed the bacteria in his blood, as well as the mucus in his lungs, the bacteria that caused the sepsis, was e coli, which is the most common bacteria, so they had already been treating him for that bacteria with the antibiotics they were giving him. My first reaction was “isn’t e coli from poop? How could that have started in his mouth? How could all this be from a tooth abscess?” Everyone was still baffled. Though I know now, of course, that they expected a blood cancer from the moment he arrived. In the morning, they wanted to do a heart echo after slowing down the ECMO to see how his heart was doing. They started getting pulses in his foot (for the first time in 2 days) so there might be hope for keeping his foot! It was also the day that he woke up strong (truthfully the last day he “woke up” at all) …. I wrote down in my book “Not making as much improvement as they would like… therefore, may not try to wake him up today.” But they did. Some of our attending physicians were fairly rogue. When they woke him I was there and speaking to him. Practically in his face. I didn’t get to hear him speak to me, but he saw me then. He looked at me. With his eyes, he implored me. He was afraid. He tried with his left hand to pull out his breathing tube. Then he started moving his legs, and everyone was freaking out that he’d disturb his ECMO lines, so they started jumping in to help restrain him and push more pain meds/sedation until he settled down again. It was incredibly scary. And yet that was the fear I longed for over the days to come.
I also had trouble finding a private space to pump that day, so in desperation I found a waiting room on another floor (at the CV stepdown unit I couldn’t wait for Tim to get to) that was empty and set myself up in the corner. I sent a hilarious pic of it to some girlfriends/mommas.
Before I got to the hospital that morning, it was a beautiful day, and Anne and I walked A to the bus. I took an amazing picture R made for daddy to him and hung it up in his room at the hospital. Its him (drawn in orange, his favorite color), in the hospital, a multi-colored building, with a ton of people lined up outside to go visit him… That night, I took a photo of the amazing village of people in my living room. I remember thinking how much I loved them. (In photo below, my sister, sister-in-law, and three best friends from college with A and R) How excited I would have been a week ago to have them all here in my house together, and how, at that moment, I’d have given anything to send them all home… with their help, and my finished laundry, and washed dishes, and purchased groceries, and completed meals, packed lunches and washed bottles and pumping stuff… and trade it for Tim at home.
Saturday, May 20th
I got in and saw that Tim had gotten a shave. I had asked the night before about nourishment. This was the day they put him on a feeding tube. How he would have hated this, so I joked it was just his favorite Peanut Butter smoothie. They told me he had had an A-fib the night before – irritability / irregularity in heartbeat. The sort of thing they shock you for in the movies, but here they were treating it with medication. His heart rate went all the way up to 180. Was 120 when I got in. They did an ultrasound of his right arm that morning. Didn’t see a clot. Were still very concerned about it not moving during the decrease in sedation the night before, especially since it’s his dominant arm. (Every day I held his hand – I went side to side, but towards the end, I did favor his left because I hoped he could feel me more.) They reduced the fentanyl and introduced precedex that day in a hope to keep him calm, and he came off all 4 pressers (to control his blood pressure.) They told me that during his bath the night before they found a hole just above his rectum, and that that may have been how the e coli got into his blood stream. Said it was similar to a fistula (infected tunnel between the skin and the anus). This, to me was Eureka!…. this hole was the issue. It wasn’t hemorrhoids after all! (That he’d complained of Mother’s day weekend.) This was how the bacteria got into his blood stream. Still… this was an abnormally extreme response to e coli, so there had to be more… but this wasn’t caused by a tooth abscess, Oh why hadn’t I gone with him Monday morning into the Dr’s office? Why hadn’t I insisted on a rectal exam and blood work?!!???
Tim’s Uncle was there that day, who is a PA, and helped explain a lot of things to me. He really helped me understand how advanced INOVA Fairfax is, what wonderful treatment Tim was getting, how remarkable it was that they had 4 ECMO machines! It was also the day that the CT scan came back with a bleed on the left side of his brain… which was causing his inability to move his right arm. My worst nightmare – his brain was effected. But this entire scenario was nightmare after nightmare, and I kept surviving. When they discovered the brain bleed, they immediately took him off Heprin (through ECMO).
Sunday, May 21st
This was the day I met with the neurologists. They went through all the possible options they would want in order to monitor his brain bleed and edema (swelling) … pressure monitor, drain, decompression craniotomy…. things that were not possible in his current state. And the thing they were all itching for was an MRI. They all wanted more than what the CT could show them. They introduced a bit more on the “presser” front… talked about him needing even more once they “get him off ECMO”… changed some abx and sedation meds…his white blood cell count was still a big concern… I learned some new words.. leukopenic = low white blood cells; pancytopenic = low everything, “neutropenic” precautions were introduced, washing hands, wearing gloves, all of us entering his room wearing masks. They did an echo in the morning and his heart was still weak. The infectious disease Dr told me the “pilonital cyst” had already drained when he got here (what caused the sepsis) the e coli was all over his blood. He seemed to be responding to the antibiotics, but the low blood cells and platelets were not good.
This was also the day my attending physician changed. Dr. Desai grew on me, he felt like a lifeline, and I like to believe I grew on him. So I was nervous, but he told me Dr. Dhanani was a mentor of his, and I would be in great hands. He was right. Dhanani ended up my absolute favorite attending, and as he was an attending in both the cardio ICU and neurology, it was helpful in this scenario to have that crossover. When he learned I was an aerospace engineer, he geeked out with me on the technology, the science, the aerodynamics, thermodynamics, fluid dynamics, and those conversations were so helpful to use those parts of my brain, and to have someone speak to me academically, and not only like the poor, sad, pathetic, sympathy-inducing wife. He showed me everything, and I needed that. I craved information. I could not get too much of it.
Monday, May 22nd
I printed family photos our photographer had done in October at CVS, and hung them in his room. I knew he couldn’t see them just yet, but along with all the kids art work, I wanted them there for when he could… and deep down I think I wanted all the medical staff to be forced to remember what they were doing. I needed them to need to want to save this father. He had an early bronchoscopy that day, got “a big chunk” – an estimated 30% of it that was blocking his airway. They planned to come back that afternoon with a new machine. They kept saying they wanted to get it all before “coming off the ECMO.” His platelets were around 30K, there was no increase in his white blood cell levels. I didn’t write about this, but I think this was the night that I went back after coming home for the kids’ bedtime, around 10-11pm to see the cryoprobe bronchoscopy. My friend Shruti was still in town and went with me. We tried to stop at the drive thru Starbucks but they closed up early and didn’t serve us! We got to the hospital in time to see it, but it was crowded in there. A lot of medical professionals there hadn’t seen this used either, so it was a good learning opportunity. Shruti and I watched from the station outside his room, mainly through the window reflection of the machine’s screen (images down his windpipe into his lungs). It was painful to watch, but I couldn’t imagine not being there.
Tuesday, May 23rd – Cancer Day
It had now been a week in the hospital. This was the day the flow cytommetry came back. One week in and a diagnosis. Cancer. Splenic, marginal zone B-cell lymphoma to be exact. Google that – everything tells you it occurs in older adults. It was such a totally random cancer for him to get.
The way they explained it to me, these B-cells had multiplied like crazy and taken up all the room and pushed out all the other cells. All the good cells. All the ones that do good things for us every day – like keep us alive. The GOOD news was that it was treatable. Often treatable with a chemotherapy called Rituxan. So they said they would start that the next day. They needed to figure out new protocals, because they had never had an ECMO patient start chemotherapy before.
This was the day I took the fist bump photo… the girls had been asking so much, and I could not bring them. So my friend Christine said – how about taking a pic of his hand and let them high-five your phone? So that’s Christine there in her scrubs… but the high five was too tough without her actually having her hand in the pic too, so we decided on a fist bump!
Wednesday, May 24th
In the morning, when I woke up, I had great success with the Daddy fist bump. Girls loved it. So when I went to my first pump session at the hospital, I decided to post it to Caring bridge with a note, thanking everyone, and admitting:
I know Tim is loved by so many and I do not corner the market on pain. This is hard for all of us and we all handle it differently. If you see me and you lose it…don’t apologize. I understand.
He will be so touched by everyone’s kindness and to read everyone’s comments when he can!!!
This morning the girls got to give him a fist pump through my phone…to give him strength which he will need today!
It occurred to me that many of you might like to give him a fist pump too. ✊
That day we also received the most amazing care package of things for Tim and I, and many many crafts for the girls from my tri delta sisters, as well as a very neat care package from Lucas (Tim’s brother)’s company in the United States Navy, including a soft blanket with many words of comfort.
Around 4pm they started the chemotherapy. I was so afraid. I’ve been alive long enough to know that chemotherapy kicks the but of really healthy people… let alone people already on many machines keeping them alive. But I was also full of hope. He was already on steroids. And he was getting only one chemo drug – not a cocktail, because this one drug has shown significant progress against the type of cancer that he got. The way it was explained to me he had the best possible cancer to be able to fight it… During the chemo prep, an oncology nurse came. She gave me information on the drug, likely had me sign something, I did that constantly… and I heard one of my favorite nurses whispering privately to the oncology nurse about whether she could be around, or what precautions she needed to take around the chemotherapy because she was pregnant. For her privacy, I pretended I didn’t hear. That was the nurse I mentioned at the end of my The end post. The one who I point-blank asked if she was pregnant, because I figured at that moment, as I walked away from feeling my husband die in my arms, I could be forgiven anything.
Thursday, May 25th – ECMO day
They had originally wanted to take Tim off ECMO before starting chemo. They determined that that wasn’t possible. I wouldn’t have been able to remember this timing without my trusty notebook. Time both dragged forever and passed in a flash at the same time. The hospital staff was amazing. When they realized they couldn’t get him off ECMO before they started chemo – which they wanted desperately to do – they had to write new hospital protocols for how to deal with proper disposal of blood and equipment that touched blood with chemotherapy in it. They told me he would be going to the OR at 7am for the removal procedure. I said I would come to see him early in the morning before he went.
I got up at 5am, and headed for the hospital. I arrive before 6:30 and got a full rundown of the night, blood products, dialysis machine (CRRT) status… I spoke to him, told him I loved him, how much we all loved him… couldn’t wait to see him on the other side. I thought he might want to know what the ECMO had looked like hooked up to him, so I took this picture, thinking it was the last time I’d see it. I miss those long legs…
After they took him for the procedure, I went home. I got in before the kids were all up. They never knew. The scariest thing I remember about that trip was driving to the hospital at 5am in the rain. Pouring rain, dark, windy roads. And I thought “what if I’m in a crash? What if something happens to me? What will happen to them? Tim and I don’t even have a will.” Remembering those thoughts, I realize, hard as I pushed it down every day, as much as I pushed for recovery every day, there was a part of me, deep down, that knew the possibility of the outcome that eventually occurred did exist…
I took the kids to school. On my way out of daycare I got a call. From OR nurse. She called to tell me Tim was out of surgery. He had survived it. I said I was on my way back to the hospital. She said no rush, he wouldn’t be back in his room for a bit… almost as an after thought I said “so the procedure… was successful?” She said something like “Oh, well, you should talk to the surgeon…” Basically – no. He hadn’t “come off ECMO” like they so desperately wanted, but they put him on a new circuit. Where he had been on V-V and V-A ECMO he was on V-V ECMO only now. V stands for vein and A artery here. Basically, his lungs were not strong enough to support themselves on their own or only on a ventilator. They still needed the support, but his heart was stronger so that’s why the V-V would suffice. My friends gave this slight improvement a pretty positive spin on Caringbridge that day. But when I heard it, I was crushed. The doc who talked straight and academically to me, had impressed upon me the criticality of getting him OFF the ECMO circuit all together.
Next, I drove to the hospital. Mostly my notebook is full of medication changes that day and settings on the machines. But in the afternoon, they took the step to lighten his sedation… as they had on the 19th and he had come up so strong, and it was so scary…. however, this day when they lightened the sedation, Tim did not respond. IT was terribly scary. They rushed him to CT. Ultimately, the CT showed no NEW bleeding. The bleeding was about the same, but there was increased edema – which is just a fancy word for “swelling.” On this day I had a new attending. He was very knowledgeable and competent, but his bedside manner left more to be desired for me. I wrote down that he told me that they would continue to check his pupils as well as bring down the sedation and pain drugs (Propofil and Fentanyl) for periods before an exam. He also told me “neurosurgery will want to be very aggressive because you are so young!” and that “we have excellent neuro critical care people including Dr. Dhanani.” probably because he knew I had just gotten to know him over the previous period. And I have to imagine I’m not the only one who loved him.
Friday, May 26th – Memorial Day weekend
D turned 10 months. I got his photo in the morning, as I always did, each month in the first year of my kids’ lives. It was the start of Memorial Day weekend.
That afternoon, my daughter had a recital. I told Tim I needed to leave early for R’s dance recital. I would take pictures and videos for him. R had to wear yellow that day for her part in the rainbow. The Infectious disease Doctor told me her colleague would be on for the weekend. I had liked her from the start, so I was sorry to see her go. She first used the “perfect storm” analogy that day. That the lymphoma had been brewing a few days, a week, because of it he couldn’t fight the rectal abscess and went into septic shock, and that is what made him so sick. I could not have prevented this. “Hopefully it will all be a bad dream one day.” They were changing the ECMO settings in an attempt to wean him off of it. It’s a bad dream all right.
At R’s recital, I braced myself, I could do this. I smiled. I pretended I was normal. I pretended I wasn’t broken by his absence. My sister was there, she was filming for me. I knew they were dancing to a Moana song… I didn’t know the first song. It started … it was Phil Collins, “You’ll be in my heart”.. when it got to the refrain, and R was dancing / acting out with heart-shaped motions over her heart the “You’ll be in my heart.. from this day on, now and forever more…no matter what they say.. you’ll be here in my heart always.” LOST IT. Thank goodness a friend/mom saw me and rushed over, so I think it was pretty obvious something was going on with me, and I wasn’t simply sobbing at the beauty of a bunch of 4 year olds dancing. At the same time, my sister registered and turned to look at me, and I think was paralyzed between how to comfort me, and should she just keep filming so I’d have this later… Wow. Just Wow.
Then I drove home to the most amazing sight. So many friends from out of town. My best friend who lives in California, two of Tim’s best friends from MA and NY.. and my neighborhood. I drove home from the recital wondering how I would survive to the kids’ bedtime… then I got home and my neighbors were cutting my grass, caring for my lawn. Neighbors who had access to my garage, and just went in, just took care of everything, just simply SHOWED UP in the most profound and sincere way. The keg in Tim’s kegerator was replaced. The beer was flowing. Our out of town friends, our family, the neighbors. It was amazing. And all I could think the whole time was how much he would love it. I took so many photos that I couldn’t wait to show him when he got better… Look what you missed, Tim, look how everyone came together! I like to believe that he can see them still.
Saturday, May 27th
Back to the hospital after Friday night “off” and I took so many notes. Mostly on drugs and machine levels. Had not-my-favorite-attending, but one of my absolute most amazing nurses. She was from New England and had played ice hockey, and oh how Tim would have enjoyed talking to her! Poor girl had to listen to me all weekend!
He had increased intracranial pressure (ICP) from the edema which they could see from the eye/ultrasound test and were trying to improve the swelling with hyper-tonic saline. They weren’t in a place where they could put in a monitor to get a true ICP reading. They told me they were going to start giving him insulin to counteract high(ish) blood sugar, which is not uncommon with tube feeds. And I thought, oh how he would hate that, maybe he isn’t such a fan of the PB smoothie. They were trying to keep his stimulation down due to the ICP, so we kept the lights down, whispering, no loud noises, no music. I spoke softly to him all day. I was told that his lungs were about the same, so it would likely be a couple more days on ECMO, he was now making urine at a good output… they were giving him red blood cells to improve his oxygenation. His sodium was up to where they wanted to effect the swelling. At 5pm they removed a line out of his neck that he would need for dialysis but he doesn’t need now while he’s still on ECMO… because they don’t want anything that could potentially hold up blood flow to his brain.
Sunday, May 28th
This Sunday was the day we had planned the Memorial Day weekend cul de sac BBQ. I had been talking about it with two other neighborhood Mamas well before Tim got sick. A had really been looking forward to it.
Again, I have a ton of notes…his platelets were up to 36K when I arrived in the morning. I again had my favorite nurse – she worked all Memorial Day weekend. His ICP was down and his pupils were responsive. They still wanted him off of ECMO as soon as it’s safe, so they were going to keep him on the dry side for his lungs… since they couldn’t anti-coagulate him due to the brain bleed. The attending that day told me that “Medicine is not all science, its some art.” His liver was about the same, he was still making urine, his chest x-ray looked the same, he was on broad antibiotics to avoid infection, which would be so dangerous at this weakened immune state. In the morning they considered waking him a bit since his ICP was down but by the afternoon they decided not to move him and not to take a “sedation vacation.” I was disappointed by this, but I was also a bit glad they weren’t going to take the risk due to his brain. Around 3 in the afternoon his Sats dropped, and they needed to change the settings on the vent, ECMO, remove blankets, his temperature had spiked… And his platelets were back down to 28K. They were getting him more platelets. They were talking about getting him into a new room. ~ 8pm he had a rapid heart rate which they were able to get down with medication.
That night, we had the most amazing BBQ and neighborhood potluck and cul de sac kickball game. I was so glad his mom and dad and brother were here for it. I loved seeing his brother play kick ball with the neighborhood parents and kids… I forced myself to take photos to show Tim someday… knowing just how much he would have loved it!
Monday, May 29th, Memorial day
Still my favorite nurse, and my favorite attending was back!!! So a win from that perspective. He had both a flutter and an a-fib… something that happen in this state…not good or bad…they had to be careful about what to give him to control it.. they are not good for a prolonged period.. came down on their own with minimal intervention. The doctors gave me credit that he came out of it when I called, and went into one when I went to the bathroom the day before! He developed a nasty rash on his side… but they told me this could be a good sign… his immunity was returning enough that he was fighting some of the meds. I write down a ton of machine and medication settings… the day was similar to the day before… starting with a promising platelet number, ending with a lower number and giving him more platelets in the night.
I have great pics of the girls with beautiful Auntie Caitlin braids.
Tuesday, May 30th
This day sucked mainly due to having the only nurse I didn’t like the entire time I was there. Mostly she was just bossy and rude and didn’t let me be in the room a lot. Tim went to CT at 1:15pm and returned to his new room just across the hall. His CT was “about the same” – not worse, so I said “I’ll take it.” The neuro exam revealed responsive pupils. The left side was more sluggish. There was NO other response to the neuro exam. I have drug and machine setting notes, but less notes this day because I was in the room with him so much less. When she did let me in the room, the nurse was trying to be positive about Tim’s prognosis. (Which I do appreciate.) She said she’d seen people come back from worse. Then she told me that she was sure I’d always make him go to the dentist after this. I stared at her. Um, are you kidding me? Did you not catch up on his chart? THIS was not caused by a tooth abscess! Also he went to the dentist in March. He goes every March and September, I guarantee it! I know it was a joke, but seriously… how dare you?
This was also school sports day in Kindergarten, and all my kiddos went to their schools dressed in some of daddy’s favorite sports teams.
I have a photo of a card that came with the blankets that I took that day “Courage is not having the strength to go on, it’s going on when you don’t have the strength.”
Wednesday, May 31st
In the new room, Tim got his Second (and ultimately last) chemotherapy treatment. It took place approximately 2:30-6pm. Lots of settings and dosages recorded… the Infectious Disease doc was back and she was very interested in the rash. The Attending Dr. ordered a dermatology consult. I was also there for the neuro consult. What I wrote down was that his lack of responsiveness when they lifted the propofol and the increased measurement on his eye stems were both worrisome. But they agreed that he needed to make progress before anything could be done. They really wanted an MRI. They got a new CT, but it was the same as 5 days before. They discussed a test with contrast, but were nervous to do it due to his kidneys.
This day I also changed my Facebook profile photo to the black and white of us laughing at Manassas battlefield together when I was very pregnant with D. I was just feeling that photo that day. Really, I was feeling him slipping away from me, but I couldn’t admit it.
Thursday, June 1st
Learned of another a fib last night…the rash was improving…. I asked whether the chemo was helping… some more drug changes… they found a blood clot in the right ventricle that has likely been there about a week. They had found this Fungus… that clot could be where the fungus was growing. “Unfortunately the Rituxan may help attack the lymphoma, but it also makes is easier for fungal and other infections to grow.”
This was a day when in the mail, Tim got a really beautiful card from his NVTC colleagues (team/program he had left about 6 months before, many of whom came to his Celebration of Life.)
Friday, June 2nd
Confirmed yeast infection in his blood and urine. This was bad news. At one point my favorite attending called this fungal infection a “monkey wrench.” This was the beginning of the end, and I could feel the badness, even if I was a constant mantra of positivity.
The rash was improving, he got an echo, and a bronchoscopy. I had a female attending that day. She compared a bronch to vacuuming and said “women are better at it.”
I spoke to the hematologist / oncologist this day and I think it was the first time I heard the cancer started in the spleen. That it was “Splenic Marginal Zone B-cell Lymphoma.” I loathe the spleen. He also told me they would do another “blood test” Monday to show whether the Rituxan was making progress (before Wednesday’s next treatment…)
Due to the yeast infection, the infectious disease doctor wanted all his lines changed. He was already on anti-fungal medication, and they were going to reduce his steroids. His blood sugar was also still high.
My daughters went on a tour of the local fire station that night. Tim’s mom and dad took them.
Saturday, June 3rd
This was the day that we missed Anne, one of our best friend’s wedding. We had been planning our attendance for over a year. I peed on a stick the night she told me she got engaged. I was so worried I could miss it due to the baby. And I did miss her bachelorette party due to having a 6 week old. I met her at college orientation, and she also happened to be my freshman year roommate. Tim loved her too. He never got to meet her husband. She loved Tim. I used to joke she loved him more than she loved me. It’s crazy to think we were only both married for one week.
I have no idea why, but I woke up at 3am and had to call. Everything was status quo. Apparently around 3:30am all his sats and oxygenation dropped, and no one knew why. I have so many notes from that day. The summation of all of it was that he was holding on by a thread. But he was surviving. And there were more questions than answers. The nurse told me that his Arterial blood gas (ABG) was recovered, she also felt his pupils were slightly move reactive for her that day. I liked her, and it was her last day as a nurse in the ICU. She had been an ICU nurse for years, and on Monday she was starting a 9-5 research job at the hospital.
I got a lot of great photos of the wedding all day from Shruti and Stacia, my other two close friends from college who were there. They were instructed to “live stream” the wedding for Tim and I… Tim would have loved that. There was a thing to write them a letter for them to open later, and my friends transcribed it from us.
Also got a cute video of D in a box zooming around with my sister this day.
Sunday, June 4th
This was the day I wrote the “What happened?” post that I included in the “the beginning” post. I just realized I needed to write it. To level set, to summarize, and explain how we got here comprehensively.
A ton of notes about drugs, machine settings… his liver enzymes went up, they stopped the tube feed, planned an ultrasound of his abdomen… the blood cultures came back and were still positive for yeast 😦 (I literally drew that sad face in my notes… he got blood, at 1:30pm, he got platelets. They re-positioned him at 2pm and his sats dropped again. The micro lab in the hospital couldn’t identify the type of yeast, so they were going to send it out to have it examined, but also treat for the most common type of yeast (that found in thrush, diaper rash, vaginal yeast infection, etc. ) All his counts were down, they needed to keep giving him blood products, not sure if this was caused by the Rituxan or the underlying cancer. When I called that night, my favorite nurse was working. The one from New England, who played hockey. Tim would have loved talking to her. I kept hoping he would get to…. She said he got more blood products, and now two antifungal meds, the micafungin he’d been getting since 5/16, bit now also, Voriconazole as of today (6/4).
Monday, June 5th
This morning he finally got an early morning ultrasound. I know it wasn’t the most important thing for a Sunday, but it felt like a shift for me, the day before I had to keep asking. Now, of course it may have just been a change in the style of the attending. On Monday morning my favorite attending was back. That felt like such a relief to me compared to the weekend. There had been no progress in weaning him off the ECMO. He got the ultrasound of his abdomen/liver before I arrived. They started feeding him again. I was also very interested in what Dr Ershler had told me about the repeat flow cytometry to see if the Rituxan (chemo drug) was doing its job… Dr Dhanani told me they should do a repeat flow cytometry today by Dr. Ershler’s order. The vent was very noisy that day, and Tim was coughing. Dr Dhanani told me the fungaemia (yeast/ fungal infection) was not surprising due to zero immunity… but bad. He said the statistics (of survival) are not good, but they aren’t giving up! He was bleeding at his A line, they started the nebulizer to help his breathing. They told me he would get a bronchoscopy the next morning around 9am with “Dr Bobby”… they did a liver ultrasound, described it as “sludge”- nothing new, no gallstones, but had to be sure they weren’t’ missing anything. This is why this attending was my favorite…At 6pm there were issues with the CRRT (kidney/dialysis machine) and up on the ECMO settings before I left. On the repeat blood culture there was still yeast. I called around 9pm and spoke to my favorite nurse who told me he was getting more blood products.
This day I also got an email from A’s teacher… reporting that she was still doing well, but had been asking her and the assistant teacher for more hugs recently, and she was wondering if she might share the story with the school counselor for A’s age and the administration. I was so worried about them. I said YES! Absolutely! Please! I am open to any and all resources
Tuesday, June 6th
My favorite attending showed me an X-ray… re-stated there was nothing more that he’d like than to get him off of ECMO. Around 10am he got the Dr Bobby bronchoscopy.. he “did well”… got a lot of old stuff out. ECMO settings still high. Around 11am Dhanani texted Dr. Ershler for flow cytometry… at the morning meeting he had said he forgot. Today he got Granix, prescribed by Dr. Ershler to boost his white blood cells. They also discontinued the Valcyte, they think its less important and may be contributing to his decreased white blood cell count.
They June 1 blood culture had trouble identifying the fungus. Sent out to an external lab… The June 3 and 5 culture identified it as “candida fungus.” The lab will test what drug will best treat it. He may already be on it (the microfungin and Vfend).
Wednesday, June 7th
This should have been the third chemo day… couldn’t do it due to the fungaemia. Dr. Ershler told me once the fungus was gone, they would restart the very next day. They needed to closely monitor his white blood cells, which were extremely low. I was told Dr Bobby would bronch today. I wrote down so many medication levels. Tim’s dad and I spoke to Dr. Adam Pearlman – kidney doctor. He was there in the very beginning, and had one of the most amazing bedside manners I’ve ever seen. As I mentioned, if I, or anyone close to me, ever have/has any kidney issues, I will seek him out again. He told me that they were still using the CRRT machine for fluid removal, but at a much lower “dose” of mechanical kidney therapy. They were seeing a lot of kidney improvement. They would probably not consider removing the CRRT until “next week”… it could help the fluid removal with medical therapy (ie diuretics to help him pee a lot) but that could also hurt his recovering kidneys, so they would wait. He siad if the fungus continues to be an issue they could remove CRRT to get the lines out, but… the ECMO was really the big “line” issue and weren’t able to remove that. Later, for insurance reasons I had to get ALL the notes, and I remember reading Dr Pearlman’s notes. I don’t have them here – they are in the filing cabinet in the basement… but my impression of them was along the lines of “kidneys are not the issue here… they are making improvement, but won’t do anything… need to see if he survives everything else…”
I spoke to Dr. Katagaha – the Infectious disease doctor we had had since the beginning who had been away recently. She told me that she wasn’t happy about the fungaemia development, but it was not surprising (chemo attacking his already weakened immune system further). She said it was “not a game changer.” I liked her a lot. But in retrospect, where hindsight is 20/20 vision… that’s precisely what it was for Tim.
They did an echiocardogram (sp?) looking for puss on thrombus… academic, wont change treatment. The academic stuff still enthralled me. Could they learn anything from this tragedy that would help others? I grasped at any straw. About the fungus, I learned that the 6/1 blood culture came back from the lab identifying the fungus as “cyberlindnera fabianni” and te 6/3 labeled it as “candida pelluculosa.” I felt Tim would have enjoyed that his fungus included the word “cyber.”
Around 3:20pm, Dr. Bobby did the bronchoscopy. My nurse told me it was very bloody. Dr Dhanani really wanted to test coming down on the ECMO, but decided to wait for the next day. He said the circuit (which is how he always referred to the whole ECMO setup in Tim was harboring the fungus, and need him off of it! (whether or not that is for good or they need to put him on a new circuit.) Dr Dhanani tried to be positive with me but he also tried to be realistic…his sincerity was always so apparent. He told me there were so many potholes we could fall into. The frontal lobe is tricky, but Tim is young, many neurons could regenerate. HE said supportive family is critical. The thrombus int he heart.. the fungus/yeast will grow so long as there is all this plastic (lines) and no immunity.
The flow cytommetry results were in with positive results. The previous showed only monoclonal B cells or lymphocytes, and now they showed polyclonal B cells. <- This is all they would tell me this day, because the Hemotologist/Oncologist had to be the one to interpret the results, but spoiler alert: basically the Rituxan was doing its job. Getting rid of those bad B cells that were going crazy and multiplying and taking over all the space of the good cells!
Thursday, June 8th
This was the day I started reading to Tim full force. I read to him a book he had by his bedside. He had talked to me about it, but I started it from the beginning. And I read every single moment that I wasn’t pumping. When I arrived, I learned that his white blood cells barely budged up. That they were waiting on Dr. Ershler’s interpretation of the flow cytommetry.
Most importantly, when I arrived, I think slightly later than normal, I saw Dr. Dhanani talking to people in the hallway about another patient, and excusing himself to follow me when he saw me go by. Much as speaking to him was a highlight of my day, always… I knew this was bad news if he was rushing to see me. He told me that they had to put a tube “pigtail” in his chest… they had noticed he was not oxygenating well, and an x-ray showed he had “sprung a hole in his lung.” He showed me the detailed before and after x-rays. This was helpful. This was a routine thing to happen for someone on a ventilator so long. The vent pushed air in so forcefully… He told me he was talking to a Dr in China. Tim was the only person in the world with this combination of disease and therapy. In retrospect, I understand the therapy was only because of his age… normally this mix would be considered a lost cause… but his age… they were trying so hard to save him. He told me it would be him or Dr Desai quarterbacking. He said “When there’s a fire, everything burns”
Dr. Ershler told me he was encouraged by the flow cytometry results, wished they could check the marrow of the spleen. He said he suspected we had not cured the disease in two treatments, but that they were going in the right direction with the Rituxan (based on the flow cytometry.) There were no more monoclonal b cells, only polyclonal. AS soon as the white cells were pushed up by the Granix, they will do the next Retuxan dose – they won’t wait a day!
Friday, June 9th
Tim’s eye pressure and optic nerve size had increased so they wanted a CT. He got a head (only) CT scan at 10am. His ICP was up. Overnight he had an afib that lasted about 20 minutes, his blood pressure tanked, so they went up on the Levo and some other BP meds again. I spoke to Dr Pearlman again, who said he was anemic, talked to me about acid / base, working together, carbon dioxide in our kidneys and lungs, hyperventilating. It was a long conversation, I only jotted a few things down. I spoke to Dr. Katagaha who told me she was handing over to Dr. Ambardar, that his latest cultures grew out both funghus and a new bacteria, graham positive this time, so NOT e coli (like it was in May when we came in)… they were going to give him Benadryl and Tylenol first and then a new medication called Abelcet, and they were discontinuing the microfungin and Vfend. They were introducing a new medication for blood pressure called Albumin… At 4pm I spoke to Dr Dhanani and he told me they were needing to transfuse a LOT more, but they couldnt see where he was losing the blood (was it in a circuit?) but even if they find it, they can’t operate with his white blood cells going up and down.. if they find the infection and fight it, it could kill him, but if his immunity never recovers, then….. He said he’d like a CT scan to see what’s going on, why the right side pressure was higher, but it’s not emergent.
The nurse this day told me that she spoke to her husband about me reading to Tim, about how its something they would do. I forget all the things she said, but it was a straw I grasped at… someone taking something in to their own life based on the observations of ours. She also told me as I was leaving – trying to get home for D’s bath and bedtime – that they were out of platelets, and Dr Dhanani was trying to get some released… she called me at the end of her shift… I always had my phone sound up then when I wasn’t at the hospital, and I was in the process of giving D his bath, I only answered because it was the hospital number – she called just to let me know he did get the platelets and blood products he needed. I really appreciated it
Overnight they changed the ECMO circuit (not canulas which would require a trip to the ER) and they changed the CRRT machine. They got another CT scan.
Saturday June 10th
The day. This was they day I had to accept the end was here. Now, reading back on all of this, where hindsight is 20/20, its clear why I accepted it so quickly. I always knew… it had been building. I chose to ignore it. What else could I do and still survive getting out of bed every day, feeding my children, loving my children.. pumping milk for D? Others had taken away so many of the daily logistics, but I still had to survive… breathe in and out. Be strong enough to get all the information from the medical professionals, and put on a kind and loving smile for my children. Be their mother. Already, I had to be both of us.
Amid the bad news, there were always moments of hope – everyone always gave a little hope. Plus there was the recovering kidneys, the fact that the Rituxan was actually working to improve the cancer!.. but… but.
I will always remember my conversation with Dr. Dhanani that day. I described it in my “The end” post. But I’ll describe again here, in slightly more detail from my notebook notes…Over Tim’s bedside, Dhanani told me the CT scan was OK, no more bleeding, just some inflammation. Talking to me over Tim, he told me to tell people to go to Woodburn, and give platelets. (I asked a friend to take me that day…. I had been putting it off while others gave to be there at his side, but I felt it was my duty.) He said now it’s up to Tim. We are in a war – there are so many soldiers…. every one we could destroy individually, but they are all together.. all the soldiers “and I’m standing here with a revolver.” He then asked to speak to me away from Tim’s bedside. I don’t ever remember him doing that before. He said “I am asking the palliative care folks to talk with you to prepare. You’re an engineer, so I take you on this academic roller coaster with me… We’ve tried everything. The academics hate that, because then you have an anecdote. The data is against it. But how do you get new data?… Learn something…. We’ve already written new protocols because of Tim (how to dispose of lines for ECMO with chemotherapy)”… He talked about how his colleagues thought he wasn’t being objective… he was too invested… he might even get pulled off… all of this I am vigorously nodding at him Yes! All of this! Try everything! Get new data! Make my Tim the one who beats all odds! He is my Tim… he is THEIR father. Its all he wanted – he has to live to be their father! And then.. then he said it and everything in my world changed forever:
“I wouldn’t be doing my job if I didn’t tell you Tim is dying.”
Those words set everything else behind the scenes in motion. Those words brought my family in town, all his best friends to the hospital. Dr. Dhanani also said “if he goes into cardiac arrest, I won’t do CPR.” I didn’t ask him to. It was so obvious to me how devastating this was to this man who didn’t even really know us. I am always ready to fight. I had been fighting for 26 days. I had asked Tim to keep fighting… I had begged him to forgive me for letting him do all of the things. He would have hated it all.. to be on life support? He would have despised it… and yet I had begged it of him, compromised with myself that he’d do anything to survive to be there for his children, to see them grow up… but I could not ask him to keep fighting when it was so clear the battle was lost.
I will also always remember my conversation with Dr. Pearlman as well… he told me with all sincerity that if the King of Jordan was in the United States, and this happened to him, he would have gotten no better treatment than Tim did. I remember in that hallway, pouring out some of my heart to them. Thinking out loud, that I wonder if it wouldn’t have been better that if this was the end result for it to have happened that first day so he didn’t need to suffer for 26 days… but no, right there in that moment, I changed my mind. That would not have been better. This was his last gift to me. 26 days ago, I was a different person, I couldn’t understand. I never would have been able to accept… my eyes filled with tears, talking to these two men who talked to me like an intelligent person, not just a sad wife on the verge of being a widow. These two men who looked at me with such compassion and understanding, not pity.
They felt like family by then. All of the nurses and doctors and technicians I had spent the most time with those last 26 days. I felt more at home at the hospital at that point than I did in the walls of my own house… it felt impossible to explain to all the people who loved me… who were caring for me and for my children at home, what it was like at the hospital… having that time with Tim…
I did go to a small room to talk to the Palliative care doctor. I found out she also lived in my neighborhood, also had a son with the same name as our son. Her name was Dr. Heinz. I asked her to speak again to Chief and I when Chief could get there after the Nationals game he was at with A and a million National Capital Region girl scouts. She made me calm from my frantic immediate impression that I couldn’t possibly leave Tim’s side for an instant until the end… I talked a lot about this in my “The end” post. She talked about “transition to comfort,” she talked about who I needed to tell, who needed to come… She later told Dr. Dhanani that i understood. That I was “OK.” I can only imagine how some people react. And I get how OK I must have seemed compared to some. Because I understood. I understood and I accepted right away. Although, I wasn’t of course, “OK.” I know too well, and I knew it then, that it was very unlikely I’d ever be OK again.
Sunday, June 11th
Return to the hospital at midnight… just like we had 10 months before together for the birth of our son… this time with his father, to get to him. For the opposite of a birth. I described all of this in my “The end” post. I don’t think I have any more here that I could add. Dr. Desai was on that night and I was relieved it was him. He had been with me at the beginning. I knew he was affected. But he was professional. And he did what I needed, he said what I needed him to say.
I couldn’t have asked for better care for Tim than he received at INOVA Fairfax hospital. I am grateful we had moved close to that hospital less than 2 years before.
I’ll say this. In life, if you live a very full life, you are likely to hold someone in your arms as they breathe their last breaths. Likely, it will be someone you love with your whole heart, your entire being. I hope, for your sake, this is at the end of your very full life. It is something nearly indescribable. It is something you can’t possibly understand if you haven’t been there. It is both terrible and beautiful at the same time.
I wrote this monster post for my children. I want you to know, when you ask, when you are ready for answers – what these 26 days were like… and I come back to the quote from the Deathcab for Cutie song from my first “The hospital time”” post:
But I’m thinking of what Sarah said that “Love is watching someone die”
So who’s going to watch you die?…
I would always encourage you to love big, love hard, don’t hold back. Love, no matter the cost. I have loved hugely, and I have payed the ultimate price, and yet I say… Love is always worth loving.