Wow, I have been really neglectful of this blog! A busy life, I suppose, and no developments with Dylan's allergies left me with little to write about. However, now I am sitting in a hospital room watching my little guy sleeping peacefully at last, and I have both the time and the topic.
Fortunately, Dylan is not in the hospital because of his allergies. Hand, foot and mouth disease has been going around his daycare, with eight of the ten toddlers in his room coming down with this nasty viral infection. We thought Dylan was in the clear, but unfortunately on Friday night he started complaining about pain in his mouth and wouldn't drink his bedtime milk. He went to bed okay, but woke frequently through the evening hours. I ended up sleeping in his room to be there to help him resettle if need be. After all the resettling he slept through from midnight to about 730am. When we got up in the morning I asked to see his mouth, and when he opened it and stuck out his tongue I saw a huge lesion on the side. With a sigh I realized that Dylan was number nine.
Saturday was a bit of a rough day. He still had a bit of energy, had a little bit of soft food to eat and some ice cream and water, but was definitely not himself. He went down for his nap at the usual time, but I had to resettle him twice and he woke up fully quite early. After this short nap he wanted nothing by mouth. We gave him some Tylenol by suppository to help with the pain, and tried unsuccessfully to convince him to let us put some orajel in his mouth to help his "owies". Fortunately, the Tylenol did help some, and he ate some ice cream and drank some apple juice. We put him to bed Saturday night happy that he had had some fluids and were naively hoping that the worst was over.
Boy, were we wrong.
Saturday night was awful. AWFUL. It was like going back to when Dylan was three months old, at the height of his eczema and sleep troubles. I was up resettling every 30-45 minutes. The longest stretch of sleep we got was from 2:45-5:30am. I stayed in his room again, but really just dozed in between fixing his blankets and rubbing his back. He woke Sunday morning in a relatively good mood, but that changed with his first sip of diluted apple juice - one small sip, and he covered his mouth and tears welled up in his eyes. He covered his mouth and shook his head every time we offered him anything from that point on. I changed a moderately wet diaper at 8am and gave more Tylenol, hoping that it would have the same effect it did yesterday. No such luck. Soy milk, water, apple juice, gatorade, freezies, ice cream; by cup, straw, bottle, spoon - everything was summarily rejected. His mouth hurt him so badly that he wasn't even speaking; he was pointing and nodding or shaking his head to communicate. We were quite worried at this point, and called Telehealth (our provincial health service allowing you to speak with a registered nurse) to get advice. After going into detail and answering numerous questions we were told that he should be seen by a doctor within 4 hours. It was right at naptime and he desperately needed sleep after the previous night, so we decided to have him nap and then take him to be seen.
He had a great nap: I only had to resettle him once, and I actually had to go in and wake him at the 3 hour mark. When he woke up I offered diluted apple juice and water again, both of which were rejected. Mike started getting our bag ready for the hospital when Dylan noticed a plastic water bottle that I had left out on the side table; I had been drinking it during his nap. He pointed to it, and Mike asked if he wanted some. Dylan nodded, and he proceeded to drink about one third of the 500mL bottle. Mike and I were so excited, thinking disaster was averted and we could deal with this at home.
Then poor Dylan threw it all up.
So, to the hospital we went. Thinking that maybe we had just allowed him to drink too much water too quickly, we allowed him smaller sips from the water bottle. That was thrown up in the car on the way to the hospital, and then again in the hospital waiting room. We arrived at the hospital ER right around 5pm, and we were taken to a bay by about 6:30. Because of his dehydration and refusal to drink an IV was ordered and we were admitted to the paediatric ward at 8:30pm. Blood work, a throat culture, more vomiting, and three attempts to get an IV into him left him with a panicked look in his eyes that I hope never to have to see again. I fell apart during the IV process, sobbing when I was supposed to be comforting him. Fortunately Mike was there and held it together when I could not, rubbing Dylan's head and whispering comforting words when I was too much of a mess to do anything but hold his hand. We got back to the room and got settled, and after picking up some needed items for us Mike went home to get some sleep before having to work today. After watching several episodes of Go Diego Go on my laptop Dylan finally fell asleep around 11pm. To say it was a restless night would not even come close - between the IV, the strange bed and room, and the nurse having to check his vitals twice through the night, I spent the night comforting and resettling. He fell into a good sleep in the wee hours of the morning, only to be awoken by a team needing another blood draw at 6:30am. After that rude awakening, being held down in tears yet again, Dylan was certainly not going back to sleep. He pointed to the laptop, so we watched more Diego and Dora. He certainly looked much better, and according to the paediatrician his lab results looked great. We can go home as long as Dylan can drink some fluids and keep them down.
The problem being that he won't even open his mouth. Water, apple juice, pedialyte, freezies, jello are all being rejected again, shaking his head and pointing to his mouth. During this process I have discovered that reasoning with a confused, scared, and sleep deprived toddler is about as effective as reasoning with an inanimate object, except that the toddler keeps crying to go home. So here I sit, finally having gotten this exhausted little guy to sleep, just hoping that after a good rest I can get some fluids into him so that we can get out of here. I don't even have wireless access at the hospital (not willing to pay for it when I am praying that this is a short stay) so I'm just typing away while he sleeps. I've already had to resettle once, but he's been sleeping for a little over an hour now so I'm hopeful.
Shockingly, this already long entry really is supposed to be about Dylan's allergies. I started typing thinking that I would just make our journey to the hospital a quick paragraph but out everything came. I think I needed to do it though - I've been typing through tears and I feel like the weight on my shoulders has lifted slightly, though I still close my eyes and see his begging eyes staring back at me. My only hope is that he forgets all of this, though I never will. My heart goes out to every parent who has had to go through this and worse with their child. We are fortunate in that this is our first hospitalization; some children have had to go through this in spades and I cannot even imagine... Children should not have to be this strong.
Given Dylan's refusal to drink anything at this point, I got a visit from a very nice woman in charge of food services at the hospital. She came in to discuss Dylan's allergies with me and what food options would be available to him. Although he is on a clear fluid diet now, she wanted to take the opportunity to get things sorted should he be offered food at some point. She was very pleasant, knowledgable, and helpful (as one would expect) but I was a bit stunned after our exchange. She had his intake form which listed his multiple allergies and the seriousness of his reactions and wanted to discuss options with me. I explained that he could not have food that even listed "may contain traces" of milk, egg, or peanut. She asked if soy milk was ok, and I confirmed it was, and she went on to say that all of the bread available is MCT of milk, all pasta is MCT of egg, and that they make nothing in house so our options were going to be limited and bland - she couldn't even confirm if any "spices" could contain mustard. Dylan's options should he get to a solid food diet will include plain rice, plain chicken, plain fish, plain veg/fruits, and puffed rice breakfast cereal.
I absolutely DO NOT plan on being here long enough to get to that point, but our discussion left me with many questions. What if, God forbid, we were hospitalized more long term? I know that Dylan's mustard allergy is uncommon, and given that mustard can be hidden in ingredient lists I absolutely understand that it is safer and easier to give him plain food and allow me to season it with salt/pepper and anything I bring from home. I have no issues with that at all - one cannot expect a large food service operation to be able to cater to every single possible food allergy. However, his other allergies (specifically the dairy and egg) are top 10 allergens. Given the shocking increase in food allergies among children, I am stunned that there are not safe options available for breads, pasta, breakfasts, etc. I don't expect Dylan to get a specially modified version of whatever meal is being served, but the unavailability of a basic food item like bread is upsetting to me. More and more children have diagnosed food allergies, and dairy and egg are among the most common. At what point will large food service operations take that into consideration? At what point does it become cost effective to have a dedicated production line that is top 10 allergen free? The problem is that there's no pressure for them to take it into consideration.
Allergen free foods are stocking the supermarket shelves of even discount stores because there is a market for it. Allergies are on the increase, so it is in companies' best interests to produce food to cater to individuals with food allergies. We will spend our money on products that are safe for ourselves and our children. The pressure is there for those companies - our dollars. The pressure isn't there for large food service operations. They have their contracts with hospitals or retirement homes or airlines, and there is little for the food allergic consumer to do but settle for the plain chicken and rice because we have no other option. Why should the food service operations go to the trouble and expense of a dedicated line when there is no pressure, financial or otherwise, to do so?
So, Mike brought in some bread from home, and some margarine too, because there are no dairy-free spreads available either. And as I stare at my little man I can only be hopeful that our stay here is a short one.
Edited to add: We ended up being in the hospital another night - the little monkey just wouldn't drink anything so they couldn't allow us to go. Fortunately this morning, after some Tylenol and coaxing, he was able to eat some puffs and drink some water. He started talking and asking for more, and his demeanor perked right up. Off came the IV and here we are! :)
