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.

Surgery & Test Details

What a roller coaster! We left early in the morning and fed on the way out of town. Almost instantly, I worried about one of the girls who seemed to be in labor – Really? It was 5 below! There was nothing I could do, so I decided to let nature take its course. AND… Nothing happened.

We were early getting to PCMC. We got all checked in and were taken to Pre-Op. Jaydon and Jay sat down and played with the Xbox. It was HILARIOUS! Jaydon kept hitting Jay’s shoulder “Stop it Dad!” and “Dad, you’re in my way!” I just sat there and chuckled.

The anesthiologists came to get Jaydon. He did great until they went through “the doors”. Then, he panicked. Poor kid. Jay and I went to eat lunch in the cafeteria. My sister Angi was waiting for us when we got back upstairs. She sat with us and we chatted while we waited for the phone call. The call came and I went into PACU. Jaydon was crying for mom. My heart melted. When I leaned over his  bed, he gave me an awkward hug and started screaming for his dad. Only one parent is allowed in PACU. Poor kiddo!  We spent about 30 minutes in PACU before being moved into PostOp. Jay was able to meet us. Jaydon clung to his dad’s hand. He was crying and telling his dad how much he loved him. He was in a huge amount of pain. After the Lortab kicked in, he relaxed and fell asleep. Jay was also able to catch a few winks.

We spent about 2 hours in the PostOp unit waiting for our 3 o’clock appointment for the CMG test. All the tests were completed and we got several questions answered. A normal bladder looks a lot like a balloon. It should be smooth and stretchy. Jaydon’s looks like and has the texture of crocodile skin. It is hard and lumpy. We also were able to determine that the sphyncter is what is causing the issues. His are too tight. They aren’t receiving the correct signals from the brain making it nearly impossible for him to relieve himself (either way) without some sort of assistance. It was determined that he will need some sort of assistance emptying his bladder for the rest of his life.

There was no reflux of the dye from the CMG into the kidney. That indicates that the valves and tubes(ureters) are functioning correctly. His kidney looks good but not great. We are still looking at a kidney transplant, but it won’t be happening “soon”. We are meeting with Nephrology (the kidney specialists) on Thursday. The next surgery will be sooner rather than later, but we don’t have a date yet. We’re still operating on “doctor time”. This surgery will involve creating a channel or a path into his bladder.

We’d like to thank everyone for their thoughts and prayers and kind deeds. The outpouring of support has been awesome and means so much to us as a family.

Minor Surgery Scheduled for Tomorrow...

Well, we officially have our times for tomorrow.  We check in at PCMC at 10:30 in Same Day Surgery.  Depending on the surgeries before us, he’ll be taken back for the scope & catheter placement at around noon. This procedure is scheduled to last around 30 minutes. Then, we’ll meet up again in recovery where we’ll hang out for a few hours. At 3, we’ll go to the testing room for the CMG (bladder function test). That test lasts about an hour.

At this point, it looks like we SHOULD be done with everything by 4ish. We’ll see how Jaydon is feeling at that point. We may decide to spend the night in Salt Lake. Our stay may also be dependant on how many errands need to be done.

This round is relatively simple. The more indepth things start happening a little later. We really appreciate all the thoughts and prayers from everyone.

** We'll be traveling to SLC every week for the foreseeable future. It takes a minimum of $100 per trip just in travel expenses. This is putting a strain on our finances. We're not starving, we're just juggling. If you could possibly spare a dollar or two, we would be most grateful. Thanks to those of you who have already donated. It has helped quite a bit - more than you know! **

Mean Monster Mommy Moments

The past two weeks have been full of Mean Mommy Monster Moments starting with taking my child to the doctor for a “routine” checkup. Several of these Mean Mommy Monster Moments included when I got to hold down a very strong 10 year old so that labs could be drawn, procedures could be completed, etc. I’ve also had more Mean Mommy Monster Moments when I’ve had to “encourage” this 10 year old to take the disgusting meds or I’d be forced to “help” him take them.

For the most part, he’s been really good about taking his meds, doing his school work, drinking more liquid than I care to measure, emptying his own cath bag and much more. Jaydon has had a rough week this week because he’s had to miss school (another Mean Mommy Monster Moment). He really, truly LOVES school and has been extremely excited when the aide comes to tutor him.

This morning dawned with yet another Mean Mommy Monster Moment. Jaydon woke up to tell me that is hip hurt really bad. He was even walking like an old man, hunched over and shuffling. I'm sure the hip pain came from overcompensating muscles as he limped along. I'm also fairly positive this limping has aggravated the scoliosis in his back. He has had good days and bad days and yesterday, we noticed that he was limping more than usual and seemed to be in pain. When questioned, he’d deny any sort of pain. When he woke up, I herded him toward the shower and helped him get in. He balked and insisted he didn’t need a shower. I’m of the firm belief that a lot of problems can be fixed by spending time relaxing with hot water beating the problems out of your muscles or by sitting in a tub with the hot water (and possibly bubbles) soothing aching muscles with gentle waves.

I almost immediately found one source of pain as the catheter tubing had inched down his leg to the point where it was pulling quite a lot. The tube isn’t fastened with medical tape. We are using CoBand or VetWrap because of the laxatives that are in use. The medical team had decided that this option was the best due to the hygiene issue and I totally agree (suppressing a shudder at the thought of the other way).

Jaydon used up quite a lot of the hot water. After he was dressed, I insisted on him completing the chiropractic exercises even though his hip hurt. **Insert whining, crying, weeping and wailing here *** Again, the Mean Mommy Monster reared its ugly head and had its Moment by saying, "I don’t care if it hurts! You’ll feel better after you’re done!" Wouldn’t you know it? He did feel better and is now walking almost normally through the house. 

I hate having to play the Mean Mommy Monster, but knowing that these Moments are helping my children grow or feel better tend to ease my distain for them. I’m grateful for the times in my life in which I’ve needed to be tough in order to get through them. I’m sure there will be many more such Moments in the months and years to come. I’m thankful that kids forgive so easily and forget – for the most part – that a Mean Mommy Monster resides at our home.

Post-Appointment Update

Medical Update –  We were a little late getting to the hospital yesterday. We got hung up in Outpatient Registration because only one lady was on duty. THEN, the lab didn’t have orders for us. GRRR! We hustled down to Medical Imaging (Jaydon decided he needed a wheelchair because the catheter was pulling funny). I must have put my phone down on a chair while I was helping Jaydon or when I was calling Urology about the labs. We got called back for the ultrasound and in the little room, I discovered the missing phone. After searching through the bag, I went back to the waiting room and found a sweet little child playing a game. I had to break his heart while I took my phone back. Poor kid!

We have truly seen one of God's miracles this week! The ultrasound looked GREAT! I was amazed at the difference. The radiologist was even astounded at the immense change! Last week, the kidney tissue was compressed into nothingness (almost). Yesterday, there was visible tissue almost throughout the entire kidney! I was almost doing “the happy dance” as demonstrated by Snoopy on the Peanuts cartoons. 

We drove the wheelchair back to the lab and had a struggle there. You’d never guess Jaydon had such strong arms! He fought like a tiger, but in the end (with 3 of us working together) the labs were drawn.

In Urology, we met with our regular doctor; last week we had the Nurse Practicioner (who is wonderful). Dr. Cartwright is one of the best Urologists in the nation! He explained everything to us, talked specifically with Jaydon, and complimented us on how well Jaydon was doing and adjusting to the catheter. The lab results show that the creatnine levels dropped from 2.4 to about 1.3!  This is still quite high, but Dr. Cartwright is hopeful that the levels will continue to drop. Apparently, the issue is with the bladder, not so much with the one remaining kidney. This is a very good thing! We may still be able to delay the inevitable transplant until well into his teenage years and hopefully after most of his growth spurts.

We will be doing a minor surgery on Friday next week. We need to see how bad the bladder is and what its capability is. During the scope, they will be placing a Suprapubic Catheter to facilitate drainage until we can do a more indepth surgery. Jaydon has had one of these catheters in the past, so I’m slightly familiar with them. The tube will be placed through the skin on his stomach directly into the bladder. Like a Foley Catheter, it will be held in place by a balloon. It will also drain into a bag. The up-side is that it is FAR less uncomfortable than a regular catheter and will allow him to be slightly more active. All this will be done under sedation – in other words, he will be asleep. I only wish they would put me out at the same time! I think I might be able to get some rest! When Jaydon comes out of sedation, he will be taken in for another test that tests the amount of pressure within the bladder. We won’t know until next Thursday afternoon what time we’ll need to be there.

The school has made accommodations for Jaydon to be homeschooled. We are having a bit of a learning curve on how to get everything done, but it will come together. Either he or I receive phone calls almost daily to see how everything is going and how he's feeling. 

I’m very grateful for everyone who participated in the fast or prayed for Jaydon! I have truly seen God’s hand in everything we have done this week! The wonderful ward angels provided some much welcome help yesterday and my visiting teachers created an excellent meal. Thank you to everyone for everything! Your support and love truly has been felt across the miles!

Yet Another Update

Medical Update – Things are moving! YAY! So much so that I’m not going into details because some of you may be eating. What are you thinking? Eating by your computer is not good news! You might spill milk, or get crumbs in the keyboard, or something. Anyway! Jaydon is doing well today. He’s up and walking around and is taking a shower. In a few minutes, he’ll be dressed. He’s doing better than me this morning!

Family Update – The other boys are happy for another day away from school. They don’t start back until tomorrow. Macady is happily playing with her dad. Jay didn’t sleep much last night which means he’ll be sleeping pretty much all day so he can go back to work later today. Me – I’m still hanging in there. I’m holding it together for the most part. My house is another story. I’m of the opinion that I can’t clean while the kids are home.

Writing Update – I signed up for a writing challenge with Tristi Pinkston. Her challenges are fairly flexible in that she’s a mom also and understands when life happens. My goal is also fairly flexible taking into account for the days where I’ll be at the hospital with Jaydon. My plan is to write 1,000 words per day OR edit a chapter of A Little Push To Happiness. Last night, I was able to sprint with Lisa Asanuma. She let me vent and gave me a cyber hug and all was well in my world. I’m very grateful to her for helping to light the fire under my couch and get me writing again. I need creative outlets.

I’m very grateful for those who participated in the Fast & Pray for Jaydon event on facebook. Your prayers were felt as if strong, warm arms enfolded me in their loving circle. The many emails, texts and phone calls are also very much appreciated.