OUR NURSE SEARCH

We were still on a high from our special Mother’s Day visit and then we got a call about setting a care conference to discuss the next steps in order to get home. Caliyah’s needs are so complex that her team is large, so we had five of her specialist on the call. They felt she was making great progress, all her scheduled surgeries had been done, and now it was all about lowering her vent settings and us getting trained. They shared that we could talk departure once we finished our training. That was amazing news. We had to slow down our training because it was becoming a lot while Rome was onboarding. So we called our respiratory therapist instructor and scheduled out our last five classes, so our official earliest date for discharge was set for June 10th!

At that time our care coordinator social worker called and said she would be working closely with us now that we had a discharge date. I did not realize how intensive the checklist was to go home but we talked almost every day for the next month with a new task, calls, and paperwork for me. She warned me that the biggest obstacle I would endure was finding nurses, and she was right! We first had to get our insurance to approve private in-home nursing, I could talk for hours about how difficult insurance can be but I won’t. Just know you pay those premiums but you still have to fight for this type of coverage. 

Rome and I had three hands-on trach care classes before we got to our room-in test. The classes were all about emergency scenarios, from CPR, emergency trach change, and more. I would check in with our care coordinator every few days to hear that we didn’t have any bites on our case for nurses. There are six local nursing agencies, you share your general medical needs, hours you are looking for, and then wait! Yes, Wait! You know me enough by now that I am not the type to wait for results. I add action to all that I do, so I made finding nurses my job. I created a detailed video that I posted on Instagram, Facebook about searching for a nurse. I wanted them to see Caliyah, get to know her parents, get a feel for the work environment since the current listing was so impersonal. I went into serious mama mode and looked up hashtag- #seattlenurse and then sent the video personally to people. One woman was so generous that we spoke on the phone and she shared my video to her Facebook nurse group and we got our first hit! A woman reached out to me the next day and we did an informal interview and she was perfect. She was actually working with a girl who had the same strand of Pfeiffer Syndrome for the last two years. I got off the phone and knew she was heaven-sent, she was supposed to be apart of our family, and after many obstacles, she ended up being one of our four nurses!!!

That didn’t happen without lots of headaches. We had an agency that was totally dropping the ball. We had found four nurses that were interested, interviewed them, and then sent them to our agency for them to their rounds of interviews and hire them on. Well, the nice thing was since we had already spoken to the ladies they gave us insight into what was going on. The agency was failing to follow up with our nurses, missing scheduled interviews, and not communicating any of this to us. They would say things are looking good and feel like you will go home on the 10th, just to find out none of it was finalized. Just like we had done in the last two weeks of my pregnancy, we switched nursing agencies two weeks before our discharge date and they were such professionals.

They came to our home, did a tour, got to know us, and then went back to the office and looked through their database of nurses and had three interviews for us set up three days later. They were a blessing! The way they cared for us, the thoughtfulness in their approach was also seen in the quality of nurses they sent our way. We still needed two more nurses for the night shift and they all had to be trained but we hold on to our June 10th date.