Saturday, August 09, 2014

Summer: Part 2

(continuation of Summer: Part 1)

I had been waiting in and around the hospital all day during Arnie's surgery, and I was exhausted. I wouldn't be able to see Arnie anyway for hours since he was in recovery and was pretty out of it. I decided I would wait until Saturday to see him, and headed home. I think he might have called that night, but I might be imagining it.

Saturday morning, I headed back in (during this whole process, I became very adept at driving into the Mass General which is in a rather inconvenient location in Boston). Arnie was in the surgical ICU, mainly because his blood pressure was unusually low, probably due to some meds they gave him during the surgery. Again I lose track here, but the next time I visited, Jordan was with me. Not sure if it was Sat. or early Sunday that they released him to a regular room, and White 7 (White Building Floor 7) became our home-away-from-home.

Arnie wasn't taking in anything orally for about 4 days because they needed to let his intestines/stomach rest and recover from the surgery. He was able to walk, so we took many walks around the floor. The nurses and other staff were amazing, caring, helpful. Arnie's spirits were high. Jordan and I visited him twice, sometimes three times per day. By Wednesday, he was taking clear liquids, and if he was able to tolerate a full liquid diet (thicker liquids), we were hoping he could go home for the 4th of July.

On Thursday morning (the 3rd of July), he was craving two things: a Coke, and a vanilla milkshake. His surgeon laughed and said he could have some Coke as long as his NG tube was still in (nasal-gastral tube). He had a few sips, but said it didn't taste as good as he remembered. Then I bought him a vanilla milk shake, and he had some sips of that. He was now on "full liquids" which meant soups, jello, smoothies: anything that he could drink through a straw. He was released, and we went home. It was the evening of the 3rd of July, but none of us felt like going to see the fireworks. We were all exhausted.

On Friday, he really wasn't feeling great. He felt like he had reflux or heartburn, and was very uncomfortable. Something just wasn't right all day. In the evening, he had a small amount of vomiting. That was one of the signs that something was amiss. He called the surgery service and they said he'd better come back to the hospital. So at 10 pm that Friday night, we all climbed into the car and drove back to Mass General ED.

The doctors ran some tests, and he was admitted for observation for 24 hours. Jordan and I headed home at 4 am. Driving back home at 4 am was the strangest thing I've done in a long time.

The next day, it became clear that Arnie wasn't going home after 24 hours. He was still very uncomfortable, and he had started getting very violent hiccups that wouldn't stop. He was back on an IV and wasn't allowed to take anything orally again. He was very weak. This time, Arnie's good attitude had faded. He was frustrated and angry. Nothing was really wrong physically: there was no blockage or infection, two things that they were worried about. It was just that his body wasn't ready to process food or even liquids yet, and he had to wait for his body to heal.

This time, the hospital stay was torture. Arnie was miserable. The hiccups came and went. When he had them, he couldn't sleep, so he was exhausted. Sometimes the hiccups went away, and he tried to sleep during those times. Jordan was at day camp that week, so I spent most of my days sitting and visiting with Arnie at the hospital.

Each day, in addition to walks around the floor, we would bundle Arnie into a wheelchair and take him outside the hospital for some fresh air. If Jordan was there, he loved to push the chair and feel like he was helping.

It's a bit of a blur, but finally things started improving, and they started giving him tiny bits of clear liquid. Then he moved to larger amounts of clear liquids. The hiccups were subsiding. Things looked good, so they released him to home (on Friday July 11) but still on clear liquids after 2 full weeks in the hospital. He was exhausted and weak and depressed.

Arnie was glad to be home, and slept a lot. His "meals" consisted of different liquids: broth, jello, juices, and something called Ensure Clear (yum). He basically drank his meals and then slept. This went on for several days. They had instructed us to continue the clear liquid diet for a week. I was starting to worry that this wasn't providing enough nutrition for him. He was so weak and tired, and had lost close to 30 pounds.

On Monday we went to see Arnie's primary care doc, who agreed that he needed more to eat. We started with very soft, high protein foods like Greek yogurt and scrambled eggs. It felt good to be able to give him real food finally. Within a few days, he was eating almost everything, including some chicken and fish. The only thing we were avoiding was things with fiber (uncooked fruits and vegetables, and whole grains), as this would be too hard on his healing intestines.

I know this is way too much detail about diet and such, but that was our life during this time. What is okay to eat? Will his body be okay with this food, or will it reject it again? Will he have to go back to the hospital?

So this pretty much takes us to today. Arnie has now been home for 4 weeks. He is doing a little better every day, and slowly regaining his strength. He is still tired, and isn't sleeping as well as he'd like. He is slowly regaining his personality and sense of humor. He is now able to read and concentrate, things he couldn't do a few weeks ago. He was hoping to go back to work part-time, but that hasn't worked out, so he will start back full-time during the last week of August. It's really hard for him to be out of work for so long. Arnie loves his work, and not working is very difficult for him.

For me, it has been so hard seeing him struggle with his recovery from this surgery. He has had a number of surgeries over the years, but I've never seen one take such a toll on him. My personal opinion is that the two weeks he spent without receiving any nutrition to speak of was really hard on his body. He was receiving fluids and medication at that time, but no nutrition. I think that's hard on one's body.

The other thing I'm really not happy with is that the hospital staff are putting the blame on us for the need to be re-admitted to the hospital. In reality, we followed their instructions and he only took in things that went through a straw. I believe that he really wasn't ready for a full liquid diet when they released him, and that he needed more time to heal. Having to go back into the hospital was demoralizing and made his recovery so much harder. I'm not sure it could have been avoided, but I wish the second hospital stay hadn't happened, and I wish they didn't insist that it was something that we did that caused it.

Finally, I'm proud of myself for staying strong and handling everything during this time. It's not what I would have chosen for this summer, but I did it. In addition to all this, I had to deal with the upstairs bathroom construction which took twice as long as it should have. I am hoping to take myself on a little vacation at some point in the near future to relax and rejuvenate.

Many, many people were so helpful and supportive during this adventure, and I really appreciate all the emails, calls, texts, food donations, and everything else that people did for us. I think we are nearing the end of this incident as Arnie gets stronger and recovers, although I think it may take months until he is really himself again.

Thanks for reading this very long 2-part post.

Friday, August 08, 2014

Summer: Part 1

This has been a very strange summer.

It started out fairly normally. As we often do, we started the summer with a family vacation that includes my extended family (parents, brother and sister-in-law and their kids). This year, we were heading to Nantasket Beach, a vacation spot on the south shore of Boston at which that we'd spent every summer as kids. It was going to be a very nostalgic vacation.

Back home, we had arranged for our upstairs bathroom to be redone during this time to minimize the inconvenience of being shower-less for a number of days. The plan -- to which now I just have to say "man plans, G-d laughs" -- was that Jordan and I would stay with the family in Nantasket and Arnie would head back home mid-week to deal with the contractor and the bathroom while he worked, and that he would be with the family on the weekends.

Everything started out fine. And then it didn't.

On Wednesday, which was my birthday, Arnie called and said that he went to the minute clinic in town because he was feeling lousy. We both had colds, so I wasn't that surprised, but then he said something about needing more testing. "What?" I was trying to understand. Something about blood in his stool. Anemia. "What?" I was still very confused.

After a few phone calls, it became clear that something else was going on besides a cold. Arnie had blood in his stool and he was anemic. He was at his regular doctor's office, and he was going to need an upper GI at our local hospital. I needed to head back home to take him to the hospital for the test.

I quickly threw everything into my suitcase. Jordan decided to go with me. Luckily it is less than an hour between Nantasket and home.

I actually can't remember what happened next. The next thing I remember is taking Arnie for the upper GI test. When it was over, we met with the GI doc. Arnie had a "bleeding nodule" in his intestine which was the cause of the blood in the stool and the anemia. This needed to be removed. The doctor thought it might be able to be done laparoscopically. He was going to check with the surgeons there. In any event, Arnie wasn't leaving the hospital. He was admitted.

Again, I don't remember much except that Jordan and I visited him a few times in the hospital, and we arranged with my brother to meet halfway so Jordan could re-join the family the following day. I was staying for the duration.

Arnie and I waited much of the next day (Thursday) in his hospital room. Eventually, the doctors decided that Arnie needed a more specialized surgeon, and that he needed to be transferred to the Massachusetts General Hospital. Finally, in the early morning hours, he was transferred. I headed over there in the morning. We met the surgeon, Dr. Ferrone, who would be performing his surgery. She was setting up a team for the surgery, and didn't know when it would all come together. Suddenly someone came in and said: it's happening in 15 minutes.

This was Friday. Arnie was in surgery from around 1:30 pm until about 7:00 pm. I waited in the family waiting room, walked around Boston, and waited some more. I sent text updates to family and friends. At around 5:30 or 6:00 one of the nurses called to say the operation was almost complete and was successful. It wasn't until after 7, though, that two young surgeons came to speak with me.

What Arnie had is called a GIST: a gastrointestinal stromal tumor. This kind of tumor is rare, and it's more common in people who have NF1, which Arnie has. They got all of it out, and hopefully he wouldn't need any follow up.

Little did I know that this was just the beginning of this journey.