I had no idea what I was up against when I brought Maaike home. Thankfully it is doable, but there are definitely some things I wish I had known before.
1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home. They are not coming empty handed. They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies. When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital. So have someone clear out a closet. And take home any bins they offer you at the hospital to organize all that stuff.
2. Take notes. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail. On our first night home the RT didn't leave until midnight. I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.
3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home. I was therefore alone in my car with Maaike in the back seat. Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way. Don't drive home alone. I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.
4. Don't discharge on a Friday. It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.
5. Just say "yes". If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it. An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home. I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way. I don't know what I would have done without their generous offering. We needed every single one of those meals and all the leftovers to make it through that first month. If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. Just say "yes".
6. Take time to just be a mom and not your child's nurse. This amazing advice came to me from another trach mom Somer. She said, "