TGInotThursdayorF

I’m supposed to have a community quilt post from Ray but I am moving that to tomorrow evening so I can share the latest Kramer family news:

You know the old saying, TGIF, Thank God it’s Friday. Well…I’m changing that up to TGInotThursdadyorF as in Thank God it’s NOT Thursday or Friday. I’ve had kind of a crappy end of the week.

The last two days were a mess. I was very ready for the sun to set and welcome a weekend.

Here’s how things started…Kayla called me on Thursday at 6:50 am. Typically she doesn’t call that early so I figured something was up. It was. She had been driving Jasper to childcare listening to him cough and decided she was turning around and going home.

Kayla explained that a little girl at childcare got RSV and was worried Jasper had caught it. If you all remember, Jasper ends up in trouble if he gets a cold as it often turns into pneumonia.

A side note for those who aren’t familiar with RSV:
“Virtually all children get an RSV infection by the time they are 2 years old. Most of the time RSV will cause a mild, cold-like illness, but it can also cause severe illness such as

• Bronchiolitis (inflammation of the small airways in the lung)
• Pneumonia (infection of the lungs)

One to two out of every 100 children younger than 6 months of age with RSV infection may need to be hospitalized. Those who are hospitalized may require oxygen, intubation, and/or mechanical ventilation (help with breathing). Most improve with this type of supportive care and are discharged in a few days.”

I could hear Jasper coughing in the background and I told her I thought she did the right thing. I suggested getting an afternoon appointment to take him in case he spiked a temp.

A couple of hours later, sure enough, Jasper spiked a temp. Kayla had called for an appointment and that afternoon they went in. It turns out that Jasper had an ear infection. Kayla told the doctor a girl at childcare had RSV. The doctor seemed to not think that was a big deal. Then Kayla pushed a little and asked for the test. She wanted to make sure it would be okay for Jasper to go to childcare and didn’t want to risk exposing others to RSV, if Jasper had it, as kids who have it are supposed to stay away from other kids for five days.

They ended up taking the test. They said the results would be back that evening. In the meantime, Kayla’s cold had kicked in and was glad that she’d likely be staying home from work the next day with Jasper so she could rest too.

About 7 pm Thursday night they called. Jasper did have RSV AND has COVID. WHAT?? Jasper had covid. Kayla didn’t even suspect that nor did the doctor. The doctor didn’t even plan on testing Jasper for RSV. They only tested because Kayla requested it.

UGH. Well, that left Kayla and Spencer doing their own contact tracing. Japser had been with Grandpa Jerry in the combine. Jasper had been at childcare. Kayla had been teaching at school. So many calls to make and now Kayla had lesson plans to write…plus, Kayla was now worried she too had covid.

Friday Kayla was tested and she had covid. Spencer so far has no sickness at all.

I was happy to get a video from Kayla on Friday morning of Jasper.

That’s enough to make me feel a little better about him. On Thursday he had just laid on Kayla all day.

Now to more of the Kramer family medical journey…

On Kalissa’s drive to work on Thursday night we decided it was time to get to the bottom of whatever was going on with my doctor. I wrote THIS blog post explaining everything that had went on since my appointment on September 23rd. Please go back and read that for a refresher or if you are new to this story.

So from where that story left off. I never heard back from the person that last called me and asked if I had contacted my insurance to get the PET scan approved and there were no doctor’s order for one. That phone call happened on September 29th.

By Friday the 1st, I stitll hadn’t heard from anyone so I sent a message on the online portal. I explained that I had done everything I could on my part and that I was told by everyone I contacted that there was no order from the doctor. I wrote that in the afternoon at naptime. I heard nothing that day….nothing on Monday, Tuesday, Wednesday, or Thursday.

On the portal system it says that people that are messaged will get back to you in 2-4 business days. Well, Thursday at closing made four business days and I had heard nothing.

Remember this PET scan was supposed to happen ASAP. UGH. This is not my idea of ASAP…but what’s girl to do when you’re at the mercy of others.

Kalissa ended up calling in on Friday on her way home from work. She talked to someone who actually listened. The person made her very hopeful that something was actually going to happen. She assured Kalissa that she would follow up with this and would get to the bottom of it all. She was starting with paging my doctor.

YAHOO!!

Never underestimate the power of an awesome secretary. Since this whole runaround started she has been the only one who actually did something that was helpful.

Kalissa volunteered to do the calling for me and I’m so grateful. It’s super hard for me to do it during childcare hours. The kids are so unpredictable. If you have kids, you know how terrible kids can be the minute they know you’re on the phone.

Kalissa relayed to me what the secretary said and then her and I over the phone made a list of questions to ask my doctor if she did call. Then she laid down to sleep. She had just worked an overnight shift.

About a half an hour later I was in the middle of changing a diaper and the phone rang. I was sure it was my doctor. I ran for the phone with the diapered baby in tow but no pants on the baby.

It turns out is was Kalissa. My doctor had called her. I ended up finishing putting the baby’s pants on as we talked. Kalissa said I might want a pen to write what she was saying down so I herded Gannon, who had followed me into the bathroom out. I found a pen and pencil to write what Kalissa was saying.

About then I heard scratching on the bathroom door. I had locked Rosie in the bathroom and paused long enough to get her out.

Kalissa continued to tell me the saga and about then Gannon pushed a chair up to the cupbaord, grabbed a box of Nilla Wafers and dumped them out all over the floor.

Then, after I got off the phone, Gannon ran to the bathroom to go potty, slipped and fell. Apparently Rosie had peed on the bathroom floor in her distress of being locked in the bathroom. As I was finishing cleaning that up, Gannon went potty in the little kids potty chair. He grabbed the potty chair insert to dump it in the big toilet, and Gannon spilled his potty all over the bathroom floor that I had just cleaned.

This is exactly why it’s so hard for me to make any phone call during childcare.

So are you wondering what the doctor said??? To be honest, in the middle of all of that I could barely remember what Kalissa and I were talking about. Here is the note she wrote in our family messenger group.

“Bottom line – Mom does need a pet scan – her number went up a little more than she would like – they want to rule out a bone lesion – if insurance doesn’t cover the PET scan then she will get a head neck and pelvis CT scan which will also check for bone lesions just as good. Dr Ryder is even more suspicious that we will find something but she says that would be good because we know what we are dealing with and can treat it. So imaging in the next few weeks and then appointment with doctor after imaging.”

I messaged my doctor back and forth a few times. I wanted to clear the air on my end of it all. I know mistakes happen and I am sure she knew nothing of the run around that was happening.

I was a person who fell through the cracks. As frustrated as my family is with the whole incident, I am glad if it was going to happen to someone, it happened to me. I am pro-active when it comes to following up and making sure my medical needs are addressed. I know others might have let it all slip and not do anything until a follow up visit.

So how do I feel about it all??
Okay. I’ve known this is a possible road I could go down. After all, my cancer, if it spreads, typically goes to bones or lungs. I certainly wish we weren’t concerned about possible spread to my bones but as my doctor said, if it has, we can finally found it and hopefully can treat it.

I’ll keep you posted on Jasper and Kayla…and me. Eli, our daughter Kelli’s little guy, is doing much better. Still some coughing but all in all, good.

Update: When I got my mail over the weekend, there was a letter from insurance. My PET scan is approved. Now I’ll watch the patient portal to see when it is scheduled.