Years ago - it feels like a life time at times - Dr. E and Jacob’s ENT doctor was arguing if Jacob needed a tracheotomy or not. In the end, the ENT doctor sided with Dr. E. to not go for a tracheotomy as long as we started nursing care for Jacob at night, so we could make sure Jacob was safe despite severe sleep apnea.
That is how we started with nursing care back in 2007. We had a night nurse come in 4 nights a week to basically monitor Jacob all night long. It was with mixed feelings we opened up our house to this nurse. We were thankful to finally be able to sleep without having on Jacob’s monitor all night long, and waking up multiple times per night - sometimes every hour - to check on him as his pulse ox was alarming due to low oxygen level or low or high heart rate. At the same time, it was a bit weird to have a stranger in our house as we were sleeping. I also remember that it was hard to get used to having this person come in right when we had put the kids to bed, needing to socialize with her every night, when the only thing Joakim and I wanted to do was relax after a long day of work and taking care of the kiddos.
Today, we are very thankful that we started down the path of nursing. We have had a few nurses that were not a good fit for Jacob and our family, but we have also met some of the most wonderful people through our nursing care. We are still in contact with Shannon, who took care of Jacob for a few years 3 days a week. She was his nurse, but she was also playing and singing with him all day long. She took him to school. She went for walks. She taught him to do “high five”. Shannon was the one I talked to when I had a concern about Jacob. Shannon was the one I also went to for advice when it came to Sarah. She became a partner in raising my kids, and I am forever thankful to her for that. She had to leave us due to a physical accident, but we still see her, and her daughter babysits Sarah.
Today, we have two nurses who take care of Jacob. On team Jacob, we have Gemma and Libby. We can honestly say that we have never had such a great team for Jacob ever. Their skilled nursing care is excellent. We know that Jacob is the nursing agency’s most medically fragile patient, but I have never felt that they are scared about the responsibility they have. They have gotten to know Jacob, and are willing to adjust to whatever Jacob needs are as Jacob is changing. We feel that it is also not just about nursing. They care about Jacob as a person, and want the absolute best for him - whatever it takes. They kiss him, they hug him, they read to him, they sing to him, they do art projects with him, they take him to school, they go with me to Jacob’s doctor’s appointments - whatever it takes.
We know that they are in our house 5-6 days of the week because of Jacob, but they have both grown on all of us. If we are at the berry patch picking flowers, Sarah wants to pick flowers for them as well. When we are in Sweden, Sarah reminds me that we need to bring back gifts to both of them. When we bake or cook in the house, Gemma gets goodies with her home, and Libby has them with her 2 am tea. When Sarah goes to bed, she asks if Libby will be with her brother tonight, hoping that she will also bring some more candy for the candy bowl. When Sarah comes home from school, she wants to know if Gemma is home or not. If she got her way, they both would simply move in with us!
For Joakim and me, they have given us some freedom that we haven’t always had. I could never have gone to Sweden this summer, if Joakim wouldn’t have had the help from Gemma and Libby. We could not go up to the mountains and leave Jacob behind, if we couldn’t trust our nurses 100%. We can do date nights, and know that our kiddo is completely safe. If he does need to go to the ER, we know he will be in the ER, and we will meet one of them there with Jacob. We never have to doubt their commitment and love to Jacob.
For me, they are complete partners in the care of Jacob. I will take any of their opinions or thoughts seriously. In addition, they are the ones I go to for advice when it comes to Jacob or life in general. They know a lot about us. They have seen us in crisis when Jacob is fighting with pneumonia or seizures, and they have shared with us moments of joy such as us all going to a baseball game together this summer. Whenever we have family visiting from Sweden, they are completely blown away by them.
With us having no relatives in the US, I think I can say that they have become our extended family. Whatever we do, they are never far from our thoughts. They are many times the first ones we talk to in the morning or before we go to bed. What first seemed to be a necessary evil to keep Jacob safe has turned into some really great relationships that we hope we keep forever.
With love to our extended little family,