FAQs: An Update

Well, we have been here a lot longer than any of us have anticipated…so, it’s time for a quick revisit to the answers to see if they have changed or been rethought at all.

Where are you sleeping? On the same crappy bed, but it seems to have gotten a lot crappier over the past several weeks. We are still both staying each and every night here (also meaning that our parents are still shouldering the load of watching Ezra – and doing it beautifully, if I might add). Unfortunately, beds don’t seem to grow over time – no matter how much you wish for it. The good news is that our oft-wondered question has been answered in the affirmative: If you through-hike the Appalachian Trail, do you think you could stand months on end of sleeping on a thermarest? Ok, that has never been a question that has seriously been asked, but still the answer remains the same…and the thermarest might even be more comfortable.

How is the cafeteria food? Although the ketchup situation resolved itself with the help of friends from Ohio, the overall food situation hasn’t improved. We have broken out of here for a few meals, and we have had family bring us some stuff; but 7 weeks of eating away from home is getting really old no matter how you cut it. We have found some ways to cope by bringing stuff in (cereal, snacks, etc), but we are still often limited to the offers from the kitchen staff downstairs – I can confirm that they have a very limited vegetarian selection….and I know that both of our digestive systems have undergone a reconditioning that will hopefully make them tough enough to handle the most remote food options after this.

How’s the drive? Well, you’ll have to ask our parents that question. Due to a combination of Liam’s condition and the weather over the past two weeks, we haven’t gone home. We just don’t want to end up that far away if we are needed here…and a lot of snow on the roads have really hampered any thoughts of going somewhere other than the occasional local Target run (it isn’t the snow that we are concerned about, but the fact that we would end up 35 miles away with slow driving people in our way). Since we haven’t been able to go home, our folks have been more than accommodating in figuring out a way to get themselves and Ezra up here almost everyday – which is always a remarkable bright spot in the day.

Showers? I think that we have figured out that the earlier you go, the warmer your shower is likely to be…which is somewhat confusing to me since we are in a 24-hr hospital. It’s bizarre that they are apparently on a limited water supply that would rival most residential home systems. When we were still going home pretty often, it was nice to be able to shower there and do the things that take more time and space (good clean of hair – for Ahna…the jokes about me are too obvious, a shave, etc); but since we are showering here, we are forced to make due with what we have…and Ahna can confirm that blow drying a head full of hair in a steamroom is annoying at best; and I can confirm that trying to shave using a sink with an automatic faucet that times out and stops working after a little while will make you want to say a lot of four letter words.

Do you get sick on those elevators? Still no, but we are completely sick of the elevators. There seems to be one that breaks down fairly often, leaving the vast majority of people fighting for space on the other one….and because of this, you can count on stopping at each and every floor each and every trip up and down. We do try to take the stairs when we can (even though they are completely out of the way…very poor design), but sometimes after that cafeteria food it just isn’t that good of an idea.

How are you doing? If you’ve been keeping up with the blog, you could probably come up with the appropriate answer to this question. Still mostly the same, but really stir crazy right now…and really wanting to be back home. We have found a game that we have been playing back and forth to occupy some of our time (Words With Friends…do you have the app? If not, go get it…and let me know your username…maybe we can play sometime).

Update on the nurses and the pumps….not really an update to a FAQ, but an update none-the-less. A few days ago I did a posting about the pumps in the rooms and mentioned how it seemed that the alarms would inevitably sound whenever our nurse was unavailable. Since then, it was nicely brought to my attention (insert throat-clearing noise and sneaky look to another person here) that perception doesn’t always meet up with reality….and that the majority of the time the nurses are really and willing as soon as that alarm sounds. Because we truly have the best nurses available, it’s time to smile and not insert the sarcastic humor that would normally go here.

Comments

  1. Beth in Michigan says:

    We love you each!!! Advise from someone who has spent way too much time in hospitals as staff and with patient families in difficult moments: take turns once a week and shower at home. It is the 2 hours a week that nourishes the earthly element of your soul when those four walls close in. Bring back takeout and Ezra from your excursion. You still have the courage that your other half is holding the piece of your heart called Liam and all those alarms, nurses, residents, doctors etc will keep you posted if anything changes via phone.

  2. love and courage from us.

  3. I am thoroughly impressed at how well you have kept your sense of humor, you two! Thanks for the update, especially about the through-hike. I have been meaning to ask, but thought it was bad timing…”/ loveyoumeanit!!!

  4. Hi Ahna and Oren,

    I’ve been reading your blog’s daily and want to compliment you on how positive you are. These are the most difficult of times for you both, and your families etc.

    Ezra must think this is a fun time and enjoying a great time with Grandma & Grandpa’s and friends respectively I am sure. Needless to say he is just one handsome and adorable son…….his personality is from ear to ear. I loved his singing of the ABC’s to Liam.

    Your thoughts on Ronald Mc Donald house are true they do so much for many families. Just wanted to let
    you know that when the RMD house was being built here in Sacramento that the meeting planning organization I belong to did a major fundraising event for them.

    Myself n another gal co-chaired it called “Mc Tux de Luxe” black tie optional dinner at a MCD’s restaurant, we tented the parking lot and served dinner right from the restaurant.
    It was a great event we served Big Macs, fries, pies etc and raised about $15,000.00 for the house.
    It was a fundraising project I had carried with me for years and finally got to do it. 🙂

    I myself am having a difficult time too my best friend for 50+ years has just been diagnosed with stage 4 liver cancer and is not doing well. She is in Houston which makes it even harder.

    So I just wanted to send a note your way and tell you that you are in our thoughts and prayers.
    Marie & Ron

  5. We continue to keep you in our prayers and thoughts, always close in our hearts. Sending you much love and strength!

  6. dee and eric says:

    thank you for the update – you are, as always, in our thoughts and prayers.

  7. Stephanie Lerner says:

    Saw Ezra today at Peggy’s…my goodness he is just as cute as ever and just so sweet. You guys are amazing parents to Liam and to Ezra, not to mention just truly amazing people.

  8. Drew Francis says:

    We are thinking of you and praying for courage and the remedy for ‘stir crazy.’ 🙂
    Love Drew and Jan

  9. Maybe someday we’ll hike the AT through! Thanks for all the updates you give. We’re all thinking of you…

    “If you’re going through hell, keep going…”
    -Winston Churchill

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