Time stopped four weeks ago today when the doorbell rang just before 5:30 in the morning. A
mother’s worst nightmare. The police. An accident. My son Michael. Very serious. As we discovered later, a car in front of him (on the highway) lost control and rolled. He hit either that car or a part of that car– and then, at a stop, my son’s car was hit by another vehicle. The accident closed the highway for seven hours.
As bad as he looked, I felt deep inside that he would be o.k. And that’s what I told the doctors and the chaplain they sent to me. He was going to be o.k. He was going to be o.k. And gradually – they believed it too – as each day proved that this was the direction he was heading – to recovery. Two weeks of hell. Two weeks he does not remember. But he is now a walking, talking miracle! – who I am so extremely blessed to have in my life; to have
back home, where I can just stare at him.
After two weeks in the hospital, he was ready for rehab –where he recovered for another eleven days before finally coming home just two days ago. He is a miracle. An absolute
miracle!! All the prayers – God listened. One of his many doctors came into his room a few days before being released to rehab. He said to me, (while looking at my son) “We weren’t expecting this.” Remembering what I told him and everyone in the ER that day, that he would be o.k., he said “You were right.”
While in the hospital, he lost well over 25 pounds. He couldn’t eat, obviously. He couldn’t even drink for the first 11 days. His jaw was severely broken, and couldn’t be repaired until the
10th day. His nourishment was a saline drip. He did receive a feeding tube for a few days –until he pulled it out – on a Saturday. And ‘no’ they could not put it back in on the weekend, as those who do that are not there on weekends. Huh??!!!! This was a BIG hospital !! It actually didn't go back in until that Wednesday when he was finally able to have his jaw repaired – (and no –as extensive as it was – they did not have to wire it shut). The next day, he drank some, ate some jello –and whoo hoo – he was able to talk. Before this, it was so hard to understand him, causing great frustration for him. But xrays showed that the feeding tube wasn't in the right place, so still no real nutrition... And it never did get fixed. He actually managed to pull it out a couple days later - and that was it for the feeding tube - because he could start eating.
So, over the next few days, as he started eating (soft foods, of course) – I started more complaining. “Where’s the nutrition?” Great surgeons, yes – but my thought is ‘FOOD! NUTRITION!’ Let’s strengthen his body for all this work he’s needing to do to get back on his feet!. Dinner came in: Chicken broth, juice ‘cocktail’ (basically not juice at all), jello (more sugar) and sugar packets (what these were for?, I had no idea). I asked, “Is the broth gluten free?” She made a call – and out went the broth. Apparently not. Wow! – and no replacement
brought in! Breakfast the next morning was the same thing. So they took the broth away.
He had been hungry at different points and now – hadn’t eaten in so long. He had very little appetite. A friend brought in protein drinks. Yum! He liked those! Ahhhh… nutrition! The
hospital brought in milk and ice cream. It was VERY frustrating! Why does a person have to ask for Ensure! or some kind of protein or nutritious food?! Why do family and friends have to bring it in? And what about the person who doesn’t have someone fighting for their nutrition?!! He did – finally, receive something else. I asked the girl who brought it in “What’s for dinner”. She took the lid off and said with a smile, “Gluten free tomato soup.” Not “tomato soup”, but “gluten free tomato soup”. YAY. She was looking out for him.
So then he gets moved to rehab – where they were to work him – so of course he needed nutrition, right? Three hours of therapy a day: physical therapy, occupational therapy and speech therapy. I spoke with the dietitian his first day. Yes– they can handle a gluten free diet (along with his mechanically soft diet). I gave her a couple packets of gluten free gravy mix – and put his name on it.
He was given a menu for each day, in which he was to mark the items he wanted. Apparently the menu included cereal – because his first morning he ate Rice Krispies (and NOT the GF kind) - (I was not the person spending the night that night) and even after talking with one of the nutritionists, the next two mornings included (Kellogs) corn flakes. Really?! I was spending the night at that point, so was glad I was there to catch this. I sent them back each time, of course –with some words. I bought a big box of GFRice Krispies and attached a full page note stating that THIS was gluten free “please do not bring any more nonGF cereal on his tray.” His appetite was still greatly lacking for most of that first week – due mostly to the drugs he was on – so most trays went back with very little eaten. But let’s face it – It was also very unappetizing, bland food! When the narcotics were no longer needed for pain, and he got hungry – another milestone to rejoice!! YAY! his pain was no longer severe!!!!! and YAY!!! - He had an appetite! His sisters brought him a favorite“Qdobas’. A naked burrito. He was a happy man! The girls shredded apart the chicken – and he LOVED it! He loves meatloaf, so I added
quinoa as the filler and onions and green peppers all pureed – along with soft cooked broccoli. He enjoyed that. When I actually went back to work and came in during his dinner that first night – I was shocked and majorly P.O.ed. He took the lid off the plate and there was his dinner - cooked carrots. JUST COOKED CARROTS!! What if I didn’t bring that meatloaf??!!! On the side was ice cream and milk. This was all he chose. Entrees weren’t
even offered on his menu. And no one saw to it that a protein was added. I called – and was told this would be fixed. The next night – SAME DAMN meal! I asked him what he had for
lunch. Cooked apples, ice cream and milk. I was told on his first day, by the dietitian, that he can write in “gluten free pasta, chicken or tuna salad, hamburger or cheeseburger (chopped)”. That needed to be prewritten on his menu!! I wasn’t staying there 100% of the time and I don’t know if they bothered to come in and make sure he knew that he could “write stuff in” – especially when they received his menu with an incomplete meal checked off.
On my way home I called and left a message with the dietitian and the head of the facility; the CFO. I was already planning to come in the next morning – so she met with me. She expressed embarrassment and shame that this happened – and I got promises that this would be taken care of. He told me later that he received shredded chicken – plain, dry, shredded chicken – no gravy. Actually, the gravy packets I sent were never to be seen on my son’s menu or plate. He enjoyed the chicken and dumplings I brought in. Of course, there was no refrigerator for ‘nonsealed’ ‘homemade’ food. If he had to stay any longer, I would have stomped into someone’s office and remained there until a fridge and microwave were brought into his room so he could at least keep and heat the food I brought in!
On his discharge day, a few days later (2 days ago) – his Saturday menu was sitting on his tray (which he wouldn’t need – but I took it anyway). It STILL did not include an entrée choice for lunch or dinner. Basically –it appeared – that they have a main menu, from which they just delete items that are not gluten free. No replacements made. In the bread choice column is listed only “margarine packet”. In the ‘appetizer’ column (on each menu he received’ was V-8. Wow – now that’s appetizing! I wrote a “nice” (not-so-nice) letter, attached it to the menu and it will be going in Monday’s mail to the CFO. I included information for local gluten free bakeries. I stated that REPLACEMENTS need to be made for the person with food allergies. You can’t just remove the items not allowed. I added that I challenge any of them to eat what
he was offered for two weeks. It was a nightmare enough for him to have this horrible accident. They had no idea what his reactions were to gluten. I explained in my letter that if he was like some others and vomited with gluten contamination – wow! With the broken jaw and swelling he already had –This would be a catastrophe!
My son, fortunately, will make a full recovery. He’s been home all weekend, with friends visiting; laughing until it hurts (darn broken ribs). He even went out for a milkshake with some last night. SO GOOD to see! SO nice to be crying tears of joy!
His stay in rehab lasted less than two weeks. But what about another with food allergies whose stay might be much longer?! What about someone who might not have someone like this mom who will stomp in and say “This isn’t right?!!” And – honestly, my stomping wasn’t near as hard as it should have been. But, as anyone would understand – I wasn’t all together for a big part of this past month.
How awesome is it to have my son back home? Words cannot describe. We are truly, truly blessed to have him back. If you are a praying person, please include Michael in your prayers, and his passenger, (also Mike) who is still recovering in rehab.
(Michael was my positive inspiration for Adam in Adam’s Gluten Free Surprise. I had also
followed his gluten challenge on ‘Adam’s’ Facebook page this past summer. And, the blog I started just a couple months ago, making connections between celiac and circumstances in my personal life, included a blog specifically about him that I posted just three days prior
to the accident