The scariest night of my life

JT’s birthday is coming up and while his birthdays bring back great memories of family, friends and fun they also bring back memories of the scariest night of my life. JT spent his second birthday in the ICU at Boston children’s Hospital and each year I am reminded of how blessed we are. Not just blessed to have our son with us but also blessed to have one of
the best pediatric hospitals in the country nearby. His second birthday is one that he will thankfully not remember, but one that I will never forget.

On the night before JT’s second birthday we put him to bed just like any other night. This was at a time when we were using a nebulizer with pulmacort twice a day and still requiring albuterol nebs at least once daily, most days it was more often. JT was always such a trooper sitting through those treatments! He woke up at around 11:00 that night crying and wheezing. This was not unusual. We gave him his rescue treatment but it didn’t help. Again, we had been through this before. We got dressed for our trip to the ER, just like we had plenty of times in the past 2 years. Once we were in the car though, I knew something was different. His coloring was starting to go really gray and he couldn’t keep his eyes open. I yelled to Chris to hurry to Melrose-Wakefield  hospital because it was closer than Winchester hospital, which would have been our first choice . We ended up getting a police escort for the last few minutes, but if I learned one lesson this night it was this….If you are in doubt CALL AN AMBULANCE! Looking back I should have called 911 right from the start. If, God forbid, a night like this were to happen again, that is just what I would do. We arrived at the ER and waited at the front desk, but no one came. After what felt like forever (it was probably 2 minutes) I barged through the triage rooms and yelled “my son is having trouble breathing and NO ONE IS HELPING ME!”. The nurses apologized and we were taken to a bed. A nurse checked JT’s oxygen, his levels were terrible. So they did another albuterol treatment and gave him some oral steroids. Still, he was wheezing, breathing really rapidly, retracting and just working really hard to get a decent breath. After the meds we were off for some chest x-rays.  A few hours and nebulizer  treatments later it was obvious that things were bad and we weren’t getting any answers. They decided he needed to be admitted, but not there. So off we went by ambulance to Winchester hospital.

By the time we arrived at the second hospital it was JT’s birthday. I’m sure I would have felt really terrible about this if I hadn’t been so terrified. We went through much of the same routine here. Oxygen levels were still awful. Albuterol wasn’t helping. He got an IV. He was grayer, limper and still not talking.  The DR and nurse did a lot of walking in and out of the room. Over and over, in and out. They looked very concerned and we were so scared. About 8 hours into this ordeal the DR said to us “I just want you to know that some children do make it through this.” What???  SOME CHILDREN???? Did that mean it was more likely that he would not make it through this? We were beside ourselves and didn’t know what to think. She told us his condition was too severe for him to be admitted there and we were to go to children’s hospital by ambulance. But things were getting worse and after a few minutes it was decided he needed to go straight to the ICU at children’s and then the decision was made that an  ambulance wasn’t enough and that children’s own Critical Care Transport Program (which is basically a hospital on wheels complete with an EMT and 2 RN’s) would come to get him.  The critical care program is reserved for critically ill children, and that meant my child was critically ill.

But I thank God that they came! They swooped in with confidence, and knowledge, and support. There was no looking concerned and walking in and out and in and out. They took control of the situation and gave JT a constant nebulizer treatment. He would finish one dose of albuterol and they would start the next and after 15 minutes of being in that vehicle and receiving this constant albuterol JT pointed to a monitor, looked at me and said “Mommy, is that a tv?”!!! He spoke! For the first time in 9 hours! I immediately felt such a flood of relief. We weren’t out of the woods yet but I knew at this point that we were headed in the right direction. He was in good hands!

The nurses on board warned me that once we got off the elevator at the hospital we would be swarmed, and we were! It felt like hundreds of people were waiting for him. Within minutes he was wheeled into a huge room and there were people over him swabbing, listening, watching and hooking him up to all sorts of monitors. It was overwhelming. But I continued to feel some hope that neither of the other hospitals could inspire in me. His oxygen levels were still horrible, his coloring still gray, but the wheezing had stopped and he was talking on occasion. He was finally able to rest. Tests were run but still there was no concrete answer.

After he rested for a bit, a woman walked into his ICU room and made our day. She brought in a gift and balloons! Someone had learned that it was his birthday and the hospital gave him an amazing present!! I can’t say enough about how wonderful the entire staff was. The critical care transport nurses (who in my mind were the most instrumental in his recovery and whose faces I will never forget) came back twice to check on him. He had his own individual nurse who was pleasant even though JT’s oxygen alarm must have gone off every minute our first night  in the ICU. Every nurse and DR we dealt with was patient and kind.

After 3 long and hard days in the ICU we were able to be moved to a regular room. And after 1 night there we were released with a diagnosis of status asthmaticus (a life-threatening asthma attack that does not respond to standard treatments). We were given new medicines, an asthma action plan and orders to see an allergist and a pulmonologist. We made a lot of changes at home too and I’ll share a post with those in a few days. Seeing your child go through something like this is incredibly difficult and life-changing. But, we were on our way to JT living a much healthier life and he hasn’t had a severe asthma attack or been back to the ER since!


Dairy free ice cream

For Christmas this year my parents got me the ice cream attachment for my Kitchen Aid stand mixer. I asked for this specifically so that I could make dairy free ice cream treats for JT.  Although he is able to have some sorbet and popsicles, there are not a whole lot of options for him in the frozen treat category. Now we can make our own “ice cream” at home… Yay! I can’t wait to experiment with different flavors. Maybe this year I will even be able to serve cake AND ice cream at his birthday party!

We tried our first batch last night and it was a success. The kids loved it. JT was thrilled to be able to have “real” ice cream! It’s always amazing when you can give a kid like him, who has so many allergies, the experience of eating things that other kids talk about and get to eat all of the time. Hooray! Oh and the kids had a blast helping me too, although making ice cream requires alot of patience!

My Favorite Helpers!

My Favorite Helpers!

My new ice cream attachment

My new ice cream attachment

I found the original recipe for dairy free marshmallow ice cream at picture perfect cooking. We did have to make a few changes due to JT’s soy and egg allergies. In the end I couldn’t decide exactly what the “flavor” of this ice cream was. Sort of vanilla, marshmallow, banana-y. It doesn’t matter anyway because it’s good and it’s smooth and surprisingly creamy! This is how I adapted the recipe:

Marshmallow Ice Cream

2 cups dairy free rice milk

10 oz. mini marshmallows

1 can coconut milk

1/2 cup sugar

1 large jar of baby food bananas

2 tbsp. vanilla

In a large microwave safe bowl heat marshmallows in microwave for 30 seconds at a time until melted  (leave room in bowl as they expand quite a bit). Add in rice milk and stir well. In a small saucepan heat coconut milk almost to boiling. In a seperate small bowl mix sugar and banana together. Mix Banana and sugar mixture into heated coconut milk and then whisk into the marshmallow mixture. Add the vanilla and stir. Refrigerate overnight ( I tried to cut corners and skipped this step, it was a bad idea, it’s necessary). Process in your ice cream maker according to directions. Once processed it will be like soft serve, freeze overnight for a hard ice cream consistency.

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Allergen free sugar cookies

I’m finally getting around to sharing our sugar cookie recipe…better late than never right? And besides, sugar cookies are great at Christmas, but I think you can enjoy them all year round. Hearts on Valentines day, shamrocks for St. Patty’s day and eggs to decorate for Easter (especially good for those with egg allergies who can’t decorate the real thing!). The original recipe came from an old Parent’s Magazine’s Christmas Holiday Book and was adapted to be allergy free by my Mother-in-law, Jan, just like the gingerbread cookie recipe.

Sugar Cookies
1 1/2 Cups sugar
1  Cup dairy and soy free Butter (we use smartbalance with flax)
One big jar baby food bananas
1 1/2 teaspoons vanilla
3 1/2 Cups sifted all-purpose flour
1 teaspoon baking powder
1/2 teaspoon salt
Cream sugar and butter until light and fluffy; beat in banana’s and vanilla.  Sift in flour, baking powder and salt, blend well.  Pat into a ball, wrap in foil or plastic wrap and chill until firm.  Divide dough and roll out on floured surface, cut with desired shapes.  Bake on greased cookie sheet or parchment paper in preheated oven at 375 until edges are golden, about 5 to 7 minutes. Enjoy!