Dan's E.R. Visit
A Room With a View
Dan's E.R. Visit
We arrived home from New York this past Saturday late in the afternoon. I wish I could say that our week’s stay was fabulous, but it was not. Daniel had to be taken to emergency on our second day. It’s a complicated weird and somewhat long story. Upon landing in New York on the Saturday before Labor Day, Daniel realized he had forgotten to bring his insulin. No problem… we called our friend to retrieve it and mail it to us with Next Day Delivery. She did but unfortunately Next Day on the Saturday before a Monday holiday means the delivery to the hotel wouldn’t be until the Wednesday following.
We got checked into the hotel and the front desk provided us with the directions to something called City Med that wasn’t not too far away; it’s a walk-in clinic type of place and we were able to get a new Rx for the insulin. At City Med, his glucose level was at 356 which is high for those not familiar with diabetes. I got the insulin filled and gave him 1 dose of one and a half dose of the other and his levels went the other way – in the wrong direction down to 42. Working through the night we were able to stabilize him back to the 100’s level and I was testing him through the night while he slept.
In the morning, Daniel was groggy but said he felt okay. I told him that we would just stay at the hotel and not go to the event we had planned; I felt that he just needed to rest and skipping the event wasn’t a big deal – we came to New York for other things that was to be a vacation. He said no and that he felt fine followed with a, “wait until I get out of the shower and I’ll let you know.” He did, so we got a bite to eat at the café up the street and then returned to the hotel for a quick rest before the event’s start time – 2:00pm.
We took our time both in leaving the hotel as well as walking to the event and arrived after it had started. Moving our way through the crowd, we found an entry through the fence and got ourselves inside and situated. Throughout our time there, I would look back at him and with a nod we’d acknowledge if he was doing okay. I think at one point we agreed he should go get a snack – I can’t remember now if he did or not.
After being there for about 3 hours, it appeared things were wrapping up and the event coordinator mentioned to me the same. At that moment, I turned toward Daniel and saw him wiping up something off the sidewalk – it was something he coughed up. Not vomit but something like aftertaste that didn’t stay down and spewed out. Yes, it was kind of gross and I didn’t fully understand that he was also having another glucose attack – he was talking incoherently while trying to explain to me why he was wiping up spew on the sidewalk.
We immediately left and I held both hands on the back of his shoulders while I guided him through the busy Times Square crowds. With each step, Daniel was getting worse; steering him felt like helping a stumbling drunk. In fact, two guys talking with one another as we passed said to the other, “that’s you next weekend…” as they chuckled on by. It was true, he looked exactly as if he was a drunk stumbling down the street.
We somehow got back to our room and again I threatened taking him to emergency. Again he pleaded no but when I went downstairs to get ice, I had the front desk provide me with hospital information. I bought some fruit popsicles and went back upstairs to see if I could get him to stabilize. The sugar in the popsicles helped bring him back mentally but he was coughing up half of whatever he was getting down. Exhausted, I let him lay down while I monitored both his behavior and sugar levels through the night. He slept soundly through the night and his glucose levels seemed to remain stable.
In the morning, Daniel was coherent, but he said he had chest pain. That’s it… we went to emergency at Mount Sinai West. There, the EKG was normal, so he wasn’t having a heart attack. Next was a visit to x-ray where it was discovered that some of that spewing of food caused bacteria to enter into his lungs, so he was diagnosed with double lung pneumonia. If you’re thinking, “omg, poor guy… how does that happen?” hold on it gets worse.
Next was an endoscopy to find out why he was spewing. This is a bit gross, but they discovered his esophagus had expanded and contained 2 liters of backed up food. Now you can say, “omg, how does that happen?” Nonetheless, once drained they found what was causing the blockage – a large ulcerated mass at the base of his esophagus just before entering the stomach. They took a biopsy, but the results were taking longer to come in than we had reservations to stay in New York. I would need to extend hotel reservations and the kennel for the dogs back home and… omg, don’t mention the cost of an extended stay at one of the most expensive hospitals in the world.
The team of doctors at Mount Sinai were understanding of our dilemma but they also had a patient that now has low oxygen levels because of the pneumonia and cannot travel without assistance. The patient is also now restricted to a liquid diet and because he cannot keep food down, he is getting weaker by the minute. They were suggesting various scenarios including flying a nurse with us on the plane because when flying, due to cabin pressure changes, your oxygen level drops. Having Daniels oxygen drop further would require portable oxygen. Well, the airlines don’t allow oxygen tanks to be in operation during flight so now what?
I’m the one that suggested, “What about that portable device I saw on television? The commercial about the unit the you carry on your shoulder…” I can’t believe it wouldn’t be the first thing the doctors would suggest but oh well. Regardless, it’s called the Inogen One and it is FDA approved as an airline carry-on. However, I did discover that different airline carriers have different processes for approving a passenger to carry as well as getting it through the TSA. A longer story shortened; the doctors approve us to travel home to seek additional treatment only IF we get Daniel this machine. They get the hospital’s social worker to start helping us locate and process whatever needed to be done.
It’s no secret that the medical industry in the USA is pretty messed up and likewise is Medicare. We were able to locate the Inogen device through a national vendor however, going through Medicare would take a 30-day approval process. The cost of this unit with Medicare paying would be over $3,000 and since we didn’t have 30 days to wait, we investigated renting the unit through a medical supply house. That too would take a 30-day approval process through Medicare.
Okay, obviously we need to forget Medicare and deal with whatever they might reimburse later. The non-Medicare purchase price for the Inogen-One is roughly $5,500. Because the battery charge is only good for 4 hours and our flight home is 5 and a half with an additional 2-hour layover, we needed to purchase an additional battery – cost at $500.
Daniel and I each carry a credit card set aside for emergency. The accounts were opened, and they are active, but they’ve never been used. They’ve never been used because we keep the activation sticker on the physical card that we carry as a reminder it is for emergencies. Well, I’d say this is an emergency, so I called and activated the card. We are now the proud owners of an Inogen-One portable oxygen device. Maybe we can resell it on e-bay someday. This thing does not recycle or compress the air around you, it creates oxygen inside itself with bombarding ions or something. It has no filters to change and there’s nothing to do but to turn it on and keep the battery charged while using.
With an authorization letter from the doctor in New York to fly, we somehow made it home safely this past Saturday. Of course, it’s the weekend and we cannot get in to see our primary care doctor until the following Monday. Remember Daniel must remain on a liquid diet and he’s having trouble with that. Trying to keep yogurts and applesauce down isn’t working so we are back to clear broths. We made it through till Monday and got in to see our primary, but the biopsy results were not in yet. We are instructed to continue doing what we’re doing and if we need to check back into a hospital, we should pick whichever one we feel most comfortable going to.
We made it through Monday and even Tuesday. Today is Wednesday but it’s 2 o’clock in the morning so I won’t know how the day will look until later. Yesterday, with the help of a friend of 40-years who is also a doctor, we have a referral to a highly respected oncologist here in the valley. I called to schedule a new patient appointment and of course they’re booked through November. Pulling some connections, our doctor friend contacted the oncologist directly and her office staff is trying to schedule something for us this week. The problem is, we need the biopsy results posted from Mount Sinai hospital in New York and that hasn’t happened yet. The doctor in New York called us yesterday and discussed verbally the results but it’s not posted to the portal as of last night.
They prepared us in New York that despite not having the biopsy results before leaving, it looked ugly and we most likely needed to follow up with an oncologist as soon as we got home. The doctor’s phone call yesterday confirmed that it is cancer. I forgot to inquire which kind but I’m sure once it is posted to the portal, we’ll have more information to provide to the oncologist. I’m sure they are waiting for those results prior to booking an appointment for us as well.
Anyway… life sucks sometimes, doesn’t it? It’s just that for Daniel, he already has multiple sclerosis and is additionally dealing with an encephalopathy on his brain caused by toxins from the 18 different medications he takes. So yeah, life sucks sometimes but we’ve always gotten through tough times and this time will be no different.
That’s as much of an update as I have for right now.
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An Update on Daniel is located at: http://motojicho.us/blog/index.php?daniel-s-update--1
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