(I recently realized maybe sharing our cleft journey could truly be of help to others, so I want to write about this time of change. Perhaps it will help someone else to avoid some of the pitfalls we have faced! Also, please pray for a family I spoke to recently who is expecting the birth of a child who will have a cleft and perhaps other complications. This family already has experienced the loss of an infant. I pray they are blessed with much peace and abundant health!)
This has been quite a year for trying to help things move forward with care Luke needs for his cleft.
When we realized a year ago that we'd reached the time for braces, we decided to investigate the cleft team at a hospital closer to us. The orthodontist with our current team is 1-1/2 hours away in good weather and traffic conditions. We have been with him since Luke was born, and we trust him, but braces require more frequent visits than usual, and Luke's school attendance is important to us too!
So, upon the recommendation of a doctor we actually saw at a cleft team appointment last Spring, I reached out to the orthodontist at a different, closer hospital last summer. She was amazing -- personable, caring, and helpful. We met with her, and continued to feel at peace with the decision to change teams.
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| This actually is a small mouse. In three days, the kids found a mouse, snakes, and a turtle! |
The orthodontist referred us to an oral surgeon. We met with him, and were told they would call us the next week to let us know what the two doctors agreed would be the best next step.
However, that conversation never happened. After a couple weeks, I called to check. Did they want Luke to have a bone graft now, or to move forward with an expander? No one knew.
I called, week after week, for a few months. I finally decided that hospital did not have time to give my son the care he needed, and that we would simply stay with our old team.
We moved forward with them, getting molds done and then waiting on insurance approval. After nine weeks went by, I called to check on the approval's status.
They hadn't heard back yet, and couldn't say how long approval would take.
This was unacceptable to me, as it was now March, and I had started this process with the other hospital in August. I was able to reach the insurance company's pre-approval department, which informed me they had just receive my orthodontist's request for the expander -- the day after I had called to check on its status (nine weeks after it should have been submitted).
Now I really didn't know what to do, or who to trust. Clearly communication wasn't perfect with either team.
I followed up by trying to make an annual cleft team appointment for Luke with his old team -- and learned the head surgeon -- and the entire team -- had switched to another hospital even farther away from my home! I have no idea why I hadn't heard about this change earlier.
Now I was at a complete loss as to what we should do, and I felt very alone in this cleft journey. I am entrusting these people with the care of my son, and neither group seemed able to manage even simple communication!
I decided to give the new hospital, the one closer to home, one more try. Maybe if we were seen as part of their team, we would be more on the doctors' radar, and we would be better able to communicate. I found a number I'd gotten nearly a year earlier for the cleft team coordinator, and explained my story, not without a few tears. Even though they are normally booked months in advance, she was able to schedule us for the next month. We arrived, and spent an entire day speaking with specialists and other professionals concerned about Luke's care.
The thing that broke my heart that day was hearing we were behind on moving forward with Luke's expander. (Can you imagine why?)
I was surprised to learn that he would potentially lose one or both of his canine teeth as a result of this delay. No one had ever mentioned that before! The oral surgeons can't perform the one graft until after expansion is done. And if those teeth come in before the bone graft, he will lose them because there isn't enough bone to support them.
This news was like a punch in the gut! After everything I had been trying to do to be proactive in Luke's care, he was about to potentially lose teeth because I wasn't able to move fast enough. I tried not to blame myself for not somehow making the doctors return my calls months earlier. That guilt just wasn't going to get me anywhere.
We had a very positive experience with the new team, despite the long day. I called the orthodontist's office the next morning to schedule an expander appointment. There was no time to lose!
Except they couldn't get Luke in for over a month. And even then, that would just be the start of getting approval for the plan for which our other orthodontist already had the insurance's OK.
Making things even more complicated, the secretary told me if I started with our current orthodontist, we wouldn't be able to switch to the new team at a later date. She said the doctor wouldn't want to see us if we had started care with another doctor.
This seemed so wrong! Luke needed to move forward in order to preserve his teeth. But by moving forward with the doctor who already had a care plan in place, I would be eliminating the possibility of later changing to a team and hospital so much closer to our home! One we liked, and had spent the entire previous day visiting!
I couldn't believe I had wasted more of our time.
This time, I didn't not want to give up without a fight. I looked online, and found an email for the new team's orthodontist. I wrote her about my concerns for Luke's need to move forward with care, and my desire to eventually transfer to her team for care.
You know what? She emailed me back the next morning and asked me to call her. I did, and the conversation exceeded my expectations.
She agreed Luke should move forward with the care plan already in place. She said she would be happy to see him when he was ready for the next stage of treatment. She thanked me for the clear manner in which I had discussed our situation in the email. She even gave me her cell phone number!
I am so happy I took these extra steps to reach out to the doctors providing Luke's care. I definitely wish I would have reached out in this way sooner, but looking back won't help. I am trusting God has Luke in His hands, and that somehow this timing is the best for Luke's care in the long run, probably in ways we will never see.
I feel more confident now about changing teams, since I know that when the hospital system is putting walls between me and the doctors, there are ways around those walls. That is something I had never experienced with my other team. Our other doctors had always been great about being available, and that was a resource I did not want to lose.
Luke finally had his expander put in place two weeks ago. Last Friday, I took him to the oral surgeon two have it screwed into place while Luke was under anesthesia. The screws are their method of holding it in place, since Luke's molars aren't all properly in yet.
Luke is so brave, and so resilient. By the end of the day last Friday, he was able to join us (in the double stroller with Nick) on a walk. The pictures from our time together have been placed throughout this post.
Smiling. Having fun. Spreading his contagious joy.
For now, that is Luke's job. (OK, we'll include school work and some chores in there as well!)
I am so grateful to be his mom, and to get to advocate for him through all of these twists and turns of life with a cleft. I wouldn't trade this boy and his smile for the world.
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| They are building a house next door to us. Imagine our joy when they began parking this truck right on our property line! Can you tell these brothers are also best friends? |
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