Having a sick child sucks in many ways, with one exception… it brings out the giving, caring, nurturing, supporting side of people. We have been in awe with the out-pouring of love since Isla’s diagnosis! We have never once felt alone. This whole situation has taught us a lot- to be present, to love and cherish every day, to not dwell on why things happen, to appreciate all that you have no matter what, to love unconditionally, to accept help when you need it and to pay it forward when you have the means. Last year we spent a total of 9 weeks(!) in the hospital, and although most people reached out, I know there were others that wanted to do something but didn’t know what to do. If you ever have a friend or friends child land in the hospital, and you aren’t sure what to do…here are a couple of ideas:
1- Just be there! Take time out of your busy schedule to check in on them regularly. Show up in person, call, text or email. Whatever you are most comfortable with. Keep doing it even if they don’t respond. They can hear you and feel your love but may not have the time or capacity to reply. You aren’t bothering them, you are helping them, so keep doing it.
2- Try to avoid saying, ‘Let me know if I can do anything.’ It’s kind of an automatic response… It is a very nice gesture, but even if you really will do anything, most likely they aren’t going to let you know. Choose something to do and tell them you are doing it, and just confirm that it’s okay. Some ideas- go to their house and rake the leaves or shovel the snow or take out the trash. Ask for a key so you can take the dog on a walk or to the kennel. Arrange a food train, just ask for email addresses and set it up at mealtrain.com. Raise some money to help offset costs. Send them a care package. Donate money to their cause in their name. Send them a gas gift card. Hire some house cleaners. Get them a massage, etc. (All of these are things people did for us. We were astonished and relieved… it helped so much!)
p.s. Isla update- she is still responding well to the meds. She has a follow-up appointment on 3/14, so more to come!
Matt and I have always been planners… plan activities for the day, plan meals for the week, plan vacations for the year, etc. When we got pregnant, we did what most couples do- we set a birth plan. It was informal… not even written down actually… but we knew the plan was to have a natural birth. People always tell you to be flexible because often times you can’t follow your birth plan, but quite honestly I thought we would be fine since our plan was pretty high level. Well, that didn’t happen… and if you know us or have read earlier posts, we had a scheduled C-Section instead.
After Isla was born, we set a plan for her care. I would stay home for 12 weeks and then we would have family come and help for 6 weeks and then she would go to daycare. We made it two weeks into her daycare stint before she got sick. Since then we realized that Isla is just not a good candidate for daycare, and really with all of her meds and SubQ and Oxygen, a nanny isn’t even realistic. One of us has to stay home. Based on our current situation, it makes more sense for Matt to stay home, so he recently informed his employer and is officially a stay at home dad!
We have had family and friends in town for a while to help out, but just yesterday our last house guest left and it was Matt’s first official day home alone with Isla. I have always known that he would be such an amazing stay at home dad, and on day one he blew my expectations out of the water. I came home to a list of what they did together and an amazing home cooked meal. Isla and I are so damn lucky!
The switch to SubQ went really well. We put the SubQ site in her left arm the day before the planned switch. They recommend doing it one day in advance to make sure there is no site reaction, and luckily she didn’t have one. Here is a picture of the site in her left arm and you can also see the PICC line in her right arm.
We had one day to go until we could get that PICC line out, but Isla decided we needed a little excitement, so she pulled it out that night. It had been working it’s way out, so we weren’t too surprised, but we had to go to the ER to get an IV put in and hook her medicine back up. Not too fun, but we all survived!
The next day we hooked her medicine up to the SubQ site and they monitored in the hospital for 24 hours. Everything was fine until about 24 hours later she was favoring her right arm and was extra fussy, so she was clearly having site pain. That lasted 24 hours, and since then she has been doing really well. The new pump is so much easier to manage. It is about the size of a pager and it comes with a case which we clip to her pants. It already feels like less baggage. Now… if we can just get her off the Oxygen.