Updates & "Official" Diagnosis

Our appointment was SUPPOSED to be Thursday. We arrived at the UofU Hospital and checked in at the lab. While we sat there, I watched the minutes on the clock tick away. With each passing minute, I grew anxious as we were drawing dangerously close to our appointment time and the labs still hadn’t been drawn. When we were ten minutes late for our appointment, one of the phlebotomists came out to talk with us and to let us know that they didn’t have the orders for Jaydon’s tests. What? I had talked to the nurse and verified THREE TIMES where we were supposed to have gone for the labs. I got on my phone and started calling the clinic. The lab’s Problem Resolution Specialist was actively working to fix the problem as well.

“You’re late for your appointment,” he said.

“No, really? The lab doesn’t have an order. Can you help?”

“Our records show that no orders have been sent since Dec 2009. Why has it been three years since we’ve seen you?”

“Um, technically, it’s been 25 months which is approximately eleven months short of the three year mark. But that’s not the issue. Can you help with the lab orders?” (Honestly, I lost the paperwork and when I tried to call, the person managing the scheduling desk was slightly less than helpful-but that’s water under the bridge).

“Oh sure. Please hold.” Insert nauseating hold music here. Again, I watched the minutes tick away as the life on my phone’s battery drained. Finally, the gentleman came back on the line. “You’re supposed to be at the PCMC lab. Why are you at the U?”

“I verified three times yesterday over the phone that THIS is where we were supposed to be.  (deep breath) Fine. We’re only 20 minutes late for the appointment. We’ll run across the bridge, down the elevators, get the labs drawn, then rush to the clinic.”

“Well, our policy is if you’re 15 minutes late for the appointment, you’ll have to reschedule. I’ll let the front desk know what’s happening for you.”

At this point, I was fighting back tears. I gathered up Jaydon’s legos and turned in the pager, explaining that we were at the wrong lab. Then I started to push the wheelchair through the crowded lobby when I hear someone calling “Ma’am! Please, wait!” Normally, when this happens I don’t even turn around, assuming they mean someone else but that time I did. One of the phlebotomists came running after us. “We have the order! You’re up next.” Gratefully, we turned around and headed back to the lab. Becky Mellor is one of the best phlebotomists working at ARUP. She draws blood on the PICU babies. She decided she could draw for Jaydon. She did such a great job that no one had to hold him down AND he didn’t scream. That is a minor miracle!! Thanks to all the primary children & teachers from our ward who were praying that his labs (and appointments) would go well.

We rushed to the elevators and down to the clinic. The secretary smiled her sickly sweet smile and told me she’d be right back. When she returned, she said “Take a deep, cleansing breath.” At this point I rolled my eyes, knowing there was bad news; we were only an hour late for the stupid appointment. “Unfortunately, the doctor is totally booked today and can’t see you. Not to mention that the lab results won’t be available until at least late afternoon. Let me call the scheduling desk to see when we can reschedule you for.”

I felt like I had been kicked in the jaw. We had made arrangements for the two kids in school to spend the night, driven for three hours in a blizzard and freezing rain, imposed on my sister’s hospitality, braved the traffic in SLC just after a storm (taking your life in your hands there) and you’re telling me we have to reschedule?! NOT COOL! The secretary sat stoically as I listened to the spiel from the scheduling desk. Then the dreaded words, “The first opening we have isn’t until January 31^st.”

At this point, I was in tears and pleaded my case. “We will go to whatever clinic we need to. We’ll sit there until the very last appointment if we have to. We can spend the night and camp out at a clinic tomorrow on the off chance that we can be squeezed in somewhere. Please find something. Please don’t tell me that I drove three hours just to get labs drawn.”

The keyboard clicked through the line and I was put on hold as the woman searched. The secretary got up and whispered that she’d be right back. She was gone only for a few minutes. When she returned, she asked for the phone which I relinquished. She said both into the phone and to me, “The doctor can see Jaydon tomorrow at 2 here in the Transplant Clinic. We’ll squeeze him in.” Further instructions were given and waves of relief washed over me. I gathered up our belongings and wheeled away.

After my sister, Nicole, finished her classes, we decided to leave the older boys with her husband, Jeff. We took the two babies and went out for ice cream. I had made arrangements for some 4H rabbits to be picked up and delivered to her house. We ended up with a beautiful family of French Lops and a pair of chocolate colored Rex Rabbits. They are beautiful and have great body tone. I can’t believe they were free! And... back to the important things…

We spent another night at Nicole’s house. We left an hour early for our appointment, determined not to miss it this time. It only takes about five minutes to get to the U from her house. We had barely walked into the office when they called Jaydon back. He was determined to wheel himself around. He didn’t give himself enough clearance through the doorway and mashed his knuckles. The nurses all jumped in to get him bandaged up. I think he hammed it up a bit – just sayin’.

The dietician came in to discuss our options. Jaydon was trying to get me to buy pizza so that’s the only food he told her he ate. I managed to convince her that we didn’t eat pizza all the time, but only barely. Jaydon sure is a character! According to the labs, Jaydon is a bit anemic so he gets to take iron supplements. He isn’t on any dietary restrictions yet, but we need to watch his protein intake. The dietician also gave us some recipes for low protein, kidney friendly shakes. Most of these are made with liquid coffee creamers. I bought several different flavors on the way home. Jay’s reaction was, “Who started drinking coffee? It looks like a coffee house in here.”

The doctor came in to talk to us. Two years ago, Jaydon’s kidney function was just below 50%. The labs just after Christmas indicated he was down to 20%. After the Foley was in, function jumped back up to 30%. Yesterday, the labs indicated function was down around 25%. All the other labs and markers look really good, but his creatinine levels are still quite high. The good news is that the high levels may be because he was really sick on Monday and Tuesday. The doctor feels that he is/was probably a bit dehydrated. We will really be pushing fluids to keep him hydrated and to keep the fluids pushing through his little system to flush out the toxins.

The bad news, Jaydon’s current diagnosis is Chronic Kidney Disease (CKD) Stage 4 resulting in Anemia. CKD inhibits children’s growth, bone density, ability to create red blood cells, ability to transfer Vitamin D into a useable substance, and makes a person extremely tired. The doctor, while really friendly and great about answering questions, doesn’t have answers. We are still running on doctor time in that we don’t have enough information to determine the best course of action. We will be re-running the labs in a month and will be back with Nephrology (kidney specialists) in three months unless the labs look odd. We have been told that we will be doing dialysis and probably a transplant, but we don’t know when.  This isn’t new news, we’ve been aware of this possibility since Jaydon was two.

No, we’re not on a transplant list yet.

No, we don’t know when the next surgery will be.

No, we don’t know what’s happening in the near or far future.

Am I keeping my head above water? Most days. Sometimes, I have a straw and am learning how to snorkel. Other times, I’m diving deep and looking for my scuba equipment. I’m relying heavily on my family, friends and God.