Saturday, December 31, 2011

Weekend Update

A fast for Jaydon has been set up for tomorrow. If you could participate, we would truly appreciate it. Jaydon’s name (and our family in general) has been added to the prayer roll in at least the Logan Temple. We are very grateful for the support we are receiving from everyone!

Medical update – Jaydon seems to be doing well. He is very tired and hasn’t been able (or willing) to void much from his intestines. We are continuing with the prescribed cleanse items to facilitate this. The catheter is working like a charm and is draining quite a lot of liquid from his little body.

In addition to this trial, it seems that everyone has felt the sudden urge to be sick at the same time! I’ve never been more grateful for Gatorade and Coke as I have been this week. My washer and dryer have been going full time keeping up with the sickies. Thankfully, no accidents have happened on my carpet (yet). Oh how I wish I had hardwood or laminate floors! It would make cleaning up after the various messes so very much easier. Such is life though! I’m grateful I have a place to live and my family surrounding me with their love and support. I’m constantly feeling love, hugs, thoughts and prayers surrounding me, cocooning me, comforting me.

Writing Update - Because I was sick last night, I had some really amazing thoughts about the book I'm working on. It should be good. I've been jotting things down all day today. I'm hoping I can snuggle up with my laptop a little later today and get some work done on it. We'll see how it goes. 

As this year comes to an end and a new year is knocking at the door, I'm reminded that I have been truly blessed! I have a wonderful family. I have a nice, warm, comfortable home. I have a job that is very flexible - allowing me to take time off for my family. I have awesome friends, neighbors and coworkers. I have the ability to read and write, to craft stories, to have creative ideas, and to be able to act on promptings. I cannot imagine living anywhere else.  This community, this state, this country, this world - Thanks be to God for everything I have, everything I am and everything I can be!

Wednesday, December 28, 2011

Kidney Issues - Part 2

Jaydon is doing quite well today. His attitude is exceptional. I need to get over it and follow his example! I’ve had my crying moment and I’ll be much better.

I’m thankful for my boss. He’s made exceptional accommodations for me.  I was able to write several pages by hand in a notebook yesterday as I was playing the waiting game. I’ll get them transferred to my computer as soon as I am thinking clearly.

I had a very long discussion with Jaydon’s doctor today. Our next appointment in next week. At that time, we’ll do more lab work, ultrasounds, x-rays, etc. We’re looking at another surgery to put in a stint that can have a catheter inserted so that his bladder can be drained more effectively.

We are in the “hurry up and wait” stage. Hurry and get everything ready, then wait until we can get the test results. Hurry and insert the Foley catheter, then wait to see if there is irreparable damage or if we can take an aggressive set of actions to try to save what we can. Eventually, we will be looking at a kidney transplant.

I’ve done my crying. Tomorrow is another day. I’m hoping to get some writing done while we play the waiting game. One blessing that I didn’t anticipate is that with the Foley in place, we won’t have as much laundry. I won’t have to wash 2-3 loads of bedding each day. I may accidentally be able to get caught up on some laundry.

There have been many asking what they can do to help. At the moment, PRAY! I appreciate all the prayers we can get. We are looking at many, many trips to Salt Lake.  Financially, this will be a burden. I’m glad my family and friends are rallying around my family at this time.

Kidney Issues - LONG Update...

 Because of the many requests and my unwillingness to keep repeating myself, I’m posting what’s happening & any updates on my blog. Just a warning – parts will be a bit graphic because of the medical nature. I’ll try to write it so that it doesn’t offend…

History – Jaydon was born with Post Urethral Valves (overgrown valves under his bladder). These valves succeeded in holding back the urine and refluxing (backwashing) into his kidneys. When we finally caught it, his left kidney was badly damaged. Jaydon has endured several surgeries in his 10 years. The first was a “Rotor-Rooter” surgery to remove the overgrown valve. The next was the installation of a Suprapubic Tube and the next was a Vesicostomy. The last two enabled the bladder to drain continually, taking the immense pressure off his tiny kidneys. The right kidney recovered slightly but the left didn’t. In order to prevent the kidney from becoming cancerous, we had it removed.

June 2011 – Jaydon was diagnosed with a 15% curvature of his spine. This curvature is in an area that affects the nerves for the function of his internal organs. Pretty much, nothing under his stomach works right. We have been working with an excellent team of Chiropractors who have helped to align his spine better and we’ve been hoping that the procedures would help with his other issues.

Yesterday (12-27-11) I took Jaydon to Primary Children’s Medical Center for what should have been a routine checkup. We went into Medical Imaging and had a wonderful tech perform the ultrasound. Jaydon’s kidney and bladder were HUGE! After several pictures, Jaydon was sent to the bathroom. He returned and more ultrasound pictures were taken. Unfortunately, his organs were still extremely distended. Due to the pressure of the retained liquid, there may be irreversible damage to the kidney OR the tissue in the kidney may be compressed. After speaking with the doctors, we were given 3 options. Jaydon could learn to catheterize himself, they could install a Foley catheter or they could do a surgery installing a channel in which he would be able to catheterize himself and drain the excess urine. We decided that the Foley would be the best bet. Jaydon was so upset, he was almost hysterical. I immediately went out and found a nurse to request for an LDS elder.

This wonderful volunteer gave us both blessings. I know it won’t be an easy road ahead, but I’m determined to follow the advice I was given. I need to remember that I have many friends and family, both seen and unseen comforting, praying and loving me, my kids and my family.

Our fast began. Jaydon wasn’t able to eat or drink anything in preparation for the procedure. We were instructed to return to Medical Imaging where we would get more x-rays. Then, we were to report to RTU (Rapid Treatment Unit). X-Rays were taken and poor Jaydon is so extremely backed up, we are doing a massive colon cleanse. No wonder the kid doesn’t want to eat! We arrived at RTU and were shown to a room. The anesthesiologist came and talked to us, then the nurse told us that the Urology team had been called into an emergency and our procedure would be postponed for about an hour.

We made a quick trip out to the car for more comfortable clothes. When we returned, we were told the emergency didn’t take as long as they anticipated and we were next on the list. Yay! Apparently, next on the list means another hour. Finally, at about 5:30 or 6, the medical team invaded the room, administered the “loopy drug”, drew labs and started to prep Jaydon. They used a brown cleaner and poor Jaydon thought they were chopping off things that needed to remain attached. The poor kid was hysterical! It took 3 guys and me to hold him down. They started with the Foley and discovered the size they had was too big so they had to go get smaller sizes. They tried twice more with different sizes before they got one that fit. POOR KID! The whole time, Jaydon was screaming and fighting. Once they got the catheter in, EVERYTHING started to drain. He filled 500 cc’s in less than an hour-and the urine was still draining! That is more than a typical adult would pee.

At this point, we weren’t sure if we would be spending the night. Everything depended greatly on his labs. After everyone left, Jaydon was fine, loopy, relaxed, etc. And still, we waited. We were able to order room service after Jaydon kept down some milk. The nurse came in right after I placed the order and she said “Oh! Once he’s done eating, you can go”. I was thinking “Cancel the dang order and I’ll pick something up on our way out of town”. The discharge paperwork and Jaydon’s meal showed up at the same time. Then there was the snafu with the medication. The doctor forgot to call it in for us – so we waited – again. And since the regular pharmacy was closed, I had to go to the inpatient pharmacy. Since the inpatient pharmacy is in the bowels of the hospital and because of the lateness of the hour, I had to have an escort. We got to the pharmacy and the tech said, “We don’t have anything for Jaydon. The last time you filled with us was in 2009”. REALLY? The nurse took over at that point because I apparently looked like I would snap – who knew? They found the Rx and said “It will take us about 20-30 minutes to get this ready for you. REALLY? I had just waited that long only to find out that they didn’t have the blasted thing!

Happy place… happy place… happy place! We returned to the room and again WAITED! Finally, we journeyed back upstairs to the pharmacy and got everything in order. Jaydon was able to walk out of the hospital and out to our car. He slept all the way home.

If you’ve seen Jaydon on a bad day, he looks similar to a starving child from Ethiopia or someplace. His stomach is very distended and he’s quite skinny. His comment last night was “I have a NORMAL stomach! LOOK!!!” At the moment, he has a positive attitude. We're all working on that one!