Day +26

We just finished our 2nd week back home and I guess it is time for an update. Nico has been very well. Here is what he wrote during that first week at home:

Been home for five days and all is well. No real problems, and as bad as I thought the eating part was going to be, it's really no big deal. I did not have to change anything, just no raw tomatoes, no problem. I feel really good, balance, eye sight, and overall thinking (feel smarter), has improved tremendously. My walking has also improved, although I can only walk really slow and not very far. I no longer wall and furniture surf to get around the house. No aid needed in house anymore, slowly but surely taking short walks outside with walker. Feeling some tingling in my hands right now, from the wrist down about 80 percent of the day, but I can deal with that. My appetite has been good and I weight the same as I did when I went into the hospital for HSCT.
 
As it turned out, the no raw tomatoes issue was never a point. We don't really know how this crept into his discharge orders. As Amy Morgan later confirmed, he can eat raw tomatoes as long as they are washed thoroughly. Here is what it says on the Discharge Instruction Note:

Diet (for 3 month): Avoid foods that may be contaminated such as salad bars and deli counters. Remember to wash all of your fruits and vegetables. Use separate cutting boards for raw meats. Wash your hands immediately after handling raw meats. Avoid raw eggs, meats and fish.

Other positive things that are happening: He walks up and down the stairs in our house without a problem. 

 

 

We made several shopping trips to the mall when the outside temperature hit 100°F. Something completely unthinkable before his transplant. He did not melt down like a snowman in the sun. He does not need much help anymore to do daily chores. I don't have to cut his meat any more. He can pour water into his cup without spilling it all over the table. His eyes have calmed down and he is now able to read. His vision seems to be better overall. But his eyes are still far away from being normal, they are still spinning around and he still has double vision when he takes off his glasses. But "they are not as annoying any more" as he says. He sleeps now during the night and is awake during the day. His energy level is really good.

He has started to do his daily exercises which consist of various stretching routines and special exercises to improve his balance. He is also using a resistance stretch band to regain more control over his arms and hands. 

He uses a rubber ball to strengthen his grip and also 2 golf balls to improve his fine motor skills.

During the 2nd week he got really ambitious and started to do squats to strengthen his legs. He is paying for his effort with sore legs right now, but he says it is all worth it.
Outside he is still using his walker, but we are going to try walking without aide on even surface outside pretty soon too. 

It is hard for him to be patient, he wants to go back to his home really badly.

Day +11

We are home!
Considering the problems at the airports we decided to get there as early as possible. We got lucky with the cab. It was a SUV and we did not have to fold up Nico's scooter. We took that as a good omen. 

The taxi driver dropped us off at the SWA side walk check-in and we checked our bags. It did not take long. The line at the security check was also not bad and we went through there in no time. 

Nico was able to go through the scanner with a little help. Usually they take him to a special area and pat him down and treat him like a 'moron' (Nico's words). 

Some fun at the airport, riding the escalator

Now we had plenty of time at the gate, we were about 2.5h early. The easiest check-in we ever had!

In addition, our flight left 1h later than planed. They were waiting for passengers from connecting flights. 

We got our preferred first row seats and met a nice young guy who took the 3rd seat in our row. Four hours later we touched down with a smooth landing in San Diego. Yoohoo, we are home!

Nico wrote a blog post during the night before we left Chicago:

I would like to thank everyone for your interest in my story. First night out of the hospital, it's 4:30 am now, I know it seems I should be asleep. After 3 weeks of not getting much sleep due to all the vital checks, getting hooked up to the IV machine, and taking meds multiple times through out the night, I guess my body has just adjusted to being awake. While being neutropenic I stayed in bed most of the time. Except for moving to the chair, to move a little bit, I was scared to injure myself and extend my stay at the hospital. Dr. Burt told me it was necessary to move around a bit, so I followed his instructions. Then your counts go up, and before you know it you get discharged. The only thing I left at the hospital is the MS. Now it's up to me to do the rest. Time to go back home and start PT.

Day +10

As I'm writing this we are already back home. My apologies to everyone for being slow with the updates.

I arrived at the hospital before Dr. Burt's rounds. Nico sat in his chair and had a big smile on his face. My counts are up and I'm going home,  he told me right away.

Shortly thereafter Dr. Burt with Amy Morgan and Dr. Han came in and confirmed that Nico could leave as soon as his PICC line was removed. 

We said goodbys. I got another hug from Dr.Burt and also Amy and I managed to get a handshake from Dr. Han. Dr. Han is very shy, I never heard him say a word. 

Nico told Dr. Burt that he is giving him a new nickname, unless he does not like it, he will call him the Miracle Man. Dr. Burt's answer: why would I not like it, I'm feeling humbled!

I suggested to Nico to get some lunch before we leave. He took a shower while we waited and I started packing his stuff. 

Around 11:30 am Coleen, the nurse came to remove his PICC line. The hardest part was to get Nico to shut up for a moment to count to three. I post a video, but if you are squeamish don't watch it.

Pretty long, hooch

It was not a big deal and did not hurt at all. The news of his discharge spread and everybody came by to say goodby.

Jessica and Aladid

Ashley, the PT girl

Coleen

We are not sure on her name, but I think it is Sabrina

Nico drove his scooter to the hotel and I pulled his little suitcase behind me. He was sooo excited to be out of the hospital. 

Free again, yeah!

He talked nonstop and I feared my head would explode. Thankfully he fell asleep for a while on the couch in our room.

I walked one last time to the Cafeteria in the Feinberg building to buy us some dinner. We had soup from Au Bon Pain. 

We did not get much sleep that night, Nico was way to excited about going home. We were not sure if we were able to fly out of Chicago, because there was some trouble at both airports. 

Someone had set a fire to the navigation system facility and most flights were canceled or delayed. But according to Southwest's flight status checker our flight on Saturday was still on.