first babysitter

We found a babysitter!
Until a few weeks ago the only people who had ever watched my children were family members (we are very lucky!). Even if JT didn’t have allergies and asthma to contend with, I think I would still prefer my kids to be with family members when they couldn’t be with us. And with the allergies, it always felt like too much of a responsibility to put on someone who wasn’t family. Even still, Chris and I recently started thinking that it would be nice to have someone outside of the family to babysit just once in a while. For a long time it was only a thought, but recently we got to know my niece’s dear friend, Colleen, and the thought became reality. The first thing that got me thinking was that my kids just loved her right away and I could tell the feeling was mutual. On top of that it’s obvious that she is a hard-working and trustworthy girl, she works full-time while attending college and last month when she was maid of honor in my nieces wedding, she was immensely helpful. So we asked if she would ever consider watching the kids and she said yes! She and the kids were both so excited, and we were too! Finally finding someone outside of the family that we could trust was such a huge relief.
Of course, when the night came, I was nervous but I made sure to be organized and keep Colleen informed and that helped to settle my nerves. I had her come about an hour early so that I could go over all of the information without feeling rushed. I also wrote everything down so that she didn’t feel like she had to memorize everything I was telling her. I explained all of JT’s allergies, his asthma and their symptoms. I showed her how and when to use his medications and we went over the chain of command in an emergency. One really important thing I did was to leave out a basket of JT safe snacks and told both Colleen and the kids that they were only to eat food from the basket so that there would be no chance of a mistake. I also fed the kids dinner before we left so that she would not be responsible for a full meal. I tried my hardest not to overwhelm her but I’m sure it was still a lot for her to take in.
We went out for dinner and had a really fun time and more importantly things at home went great! The kids were not only safe and healthy but they had fun. I honestly would have been happy if they had sat and watched a move all night, but they did crafts and played games instead. The kids loved having Colleen watch them and we love having another reliable person to call if we need a sitter for the kids. We are looking forward to having her back, but not as much as the kids are!

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Play-date Dilemma

With JT now in Kindergarten and making his own friends (rather than just playing with the children of my friends), the subject of play-dates is coming up all of the time. Of course, we have done play-dates before but I’ve always been there. Now that he is 6 we are entering the world of the “drop-off” play-date. I’m sure for lots of parents this change is downright blissful.  While for some, including myself, the idea brings on instant anxiety. A few free hours of unpaid child care while your child plays and has snacks with friends actually sounds really great. But, I tend to be a little on the nervous and overprotective side anyway, now throw in JT’s allergies, asthma and medications and the thought of dropping him off leaves me a wreck.

Let’s just say Molly was old enough and going to a “drop-off” play-date. With no medical issues to think of I would still be nervous about plenty of things. Will this family supervise my child like I would?, Will they be in a safe place?, Is the family reliable?,  If they are gun owners, do they store them safely?, Are they good people? Now add in JT’s medical complications and I’m adding questions like: Is this family clean?, Do they have pets?, How do they handle food?, Will there be exposure to peanuts or eggs?, Will they recognize an allergic reaction?, Do they understand how serious this can be? On top of that is the responsibility I would be putting on another parent. In order to drop him off I need to teach that parent what foods to keep away from JT,  what signs to look for if an allergic reaction is starting , how to use an epipen and how to give JT his inhaler. That’s a lot to ask someone I’m not paying!

For now, we are laying pretty low on the play-date front because I’m not feeling ready for it to evolve into the “drop-off” stage, but I don’t think it’s doing JT any good. I know I need to think about that next step, but how?

So, parents who have been through this, how did you do it? Or did you not do it? What advice do you have for a little-bit-nervous, maybe-slightly-overly-protective Mom?

Changes

After JT’s stay in the ICU at Children’s Hospital (read about it here) we had to make a lot of changes. We didn’t know for sure what had caused his “status asthmaticus” but we knew that we would do anything within our power to keep it from happening again. The list of changes was long, but necessary…

  •  We met with a new allergist. We had seen an allergist previously who wasn’t willing to do any testing on JT because his skin was so covered in rashes he felt like he wouldn’t be able to decipher the results. He also told me that JT was more likely to die on the way home from that appointment in a car crash than to die from a food allergy. Maybe so…but still. And that was the only info he gave us. So, we found a new, much more competent and knowledgable allergist. He’s wonderful and helpful and listens. He did some tests and we learned of some new allergies to add to the list. These included beef and some environmental allergies (mice droppings, dust mites and we learned just how severe his cat allergy was)
  • We met with a pulmonary DR. Just one time, actually. Between his pediatrician and allergist we pretty much had covered what needed to be covered, but it did take one appointment to be sure.
  •  We now had an asthma action plan. We knew exactly what to do in any possible breathing scenario.
  • JT was prescribed Flovent. I think it’s a life saver. Since being on it we hardly ever have to use his rescue meds. We also have been able to reduce the amount of Flovent he takes by half! Yay! A possible sign he is outgrowing the asthma?
  • We upgraded from a nebulizer to an inhaler with a chamber. The sheer convenience of this was amazing. Not lugging around a huge nebulizer and feeling like we couldn’t go places without electricity (ie…the beach) was so freeing!!! Also breathing treatment sessions going from 20 minutes to 45 seconds was awesome!
  • Because of his severe dust mite allergy we started encasing all of JT’s pillows and even his mattress in special dust mite covers (get a good one that totally encases the mattress). It’s gross, but unfortunately no matter how clean you are, everyone has dust mites. ugh. This helped a ton! We also wash anything that isn’t encased (sheets, blankets, stuffed animals) in a hot water wash once a week.
  • Fortunately we already had hardwood floors, had we had carpets, they would have come up.
  • Here is the big one…ready? It was the hardest and made the BIGGEST difference. It was so, so, so hard. We gave away our two precious, much-loved cats 😦 I had asked many DR’s “Do you think the cats are causing any of this?” and they would hem and haw or say “maybe” because we didn’t know the severity of the cat allergy. I loved my kitties and felt like I couldn’t abandon them like that and if I had to,  it couldn’t be MY decision. So, when the allergist finally said “you have 2 months to get rid of your cats” they were gone in two weeks. I sobbed driving each of them to their new home. I am so fortunate that they were able to stay with family members (Thank you Mom and Keith!!). I was one of those people who would have told you that her cats were her “babies” but when you have a real baby and that baby is hooked up to what feels like a hundred machines and a DR. tells you that some kids don’t make it through what he is going through, that goes out the window. Yes, I loved my cats…still doesn’t compare.

In the end something (more likely a combination of everything) worked. JT is a much healthier kid. He went from wheezing and needing his rescue medicine several times DAILY to hardly needing it at all! We went from visiting the ER every couple of months to not needing to go at all in the past 4 years!! And although he still develops rashes it’s nothing compared to what his skin used to look like. We are all so much happier and healthier and calmer!!

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!