The care that Mark requires at home is done solely by me and my husband. Besides the two of us, the only other person that can perform all of Mark’s daily care is my mom (Grandma Lelani). She has been trained on everything from connecting TPN to changing the central line dressing. Now if she only lived closer than two states away!
In the beginning, we only had to do a Clean Intermittent Catheterization (CIC) every four hours during the day and at night. So his daily care was minimal. After he had his ostomy and central line placed (at almost 2 years old) it was a little more labor intensive to provide his care at home. We still have managed to provide all his care at home without an in-home nurse. On nights that Mark is connected to TPN; we get him connected and do a Foley catheter. For now, this is done 4 days per week. In the mornings we disconnect him and take out his Foley. Every 7 days (or more frequently as needed) we change the dressing on his central line. I am the one that typically does the dressing change while my husband provides much needed assistance and keeps Mark occupied (although his IPad is typically what keeps his attention). Every 3-4 days we do an ostomy bag change (or more often as needed). We also do a CIC throughout the day on an as needed basis (which means depending on how much Mark wants to go on his own). We have a standing appointment to meet with his GI Specialist and have labs drawn every 4-5 weeks.
I have remained working so Mark has been in some form of daycare/preschool almost his entire life (since he was 4 months old). Originally, his daycare was only blocks from my work and I would go see him at least twice during the work day to nurse him and do his catheter (every 4 hours). It wasn’t super difficult for me to find a daycare. I only had one that was horrible and not a good fit for Mark’s additional needs. None of his daycares have done any of his care. I’ve always had to go to cath and do anything with his bag. It is definitely different since Mark isn’t connected to TPN during the day. If he was connected during the day we talked that we would likely hire an in-home nurse or I would stay home completely.
Now he attends preschool and I make sure his bag is empty and do a catheter when dropping him off. His teacher will contact me to come back early if his bag gets full during the day, but he is typically at school for 4 hours. It is definitely exhausting working while at the same time being concerned with how Mark is holding up at school (in regards to his bag, dressing, etc.). We have had to do more than a couple “emergency” bag changes at school due to a leaky or popped bag. As Mark gets older it seems that this happens less often since he is more capable of notifying his teacher to call me. In a couple years we are going to have to figure out how to manage him attending Kindergarten and what that means for his care.
We have never been given the option of having an in-home nurse to care for our son. To be honest, the idea never even crossed my mind until meeting other families with MMIHS kiddos. For our family, for now, I think that having no outside help is what works best for us. I’m most comfortable knowing that there are only three people (except during lab draws and hospital stays) who are handling his central line care. We used to have his central line dressing changes done once a week in the POU and he really struggled with having different people change his dressing. He always has done much better at home with just one of us doing the care. Although, maybe a night nurse wouldn’t be so bad so I could maybe get a decent night’s sleep!