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. 

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!

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!

Playing Catch Up!

So much has happened in the past several months! The first and by far the most fun - we added our new little angel to our family! Macady Lyn is an amazing precious little bundle of joy. Even though she takes up a lot of time, I thoroughly enjoy having her in my life! The boys have adjusted well to her also. She is a bright shining light and is keeping everyone happy. My dear husband was able to bless Macady. Our closest family members were able to attend and walked into Sacrament Meeting JUST AS the bishop announced that we were blessing her. Needless to say, we were a little freaked out for a few minutes!

Next, my grandma, who is 90 years young got into a rollover accident. She's fine! she broke 2 bones in her hand, lost her glasses and one earring and was extremely worried about the cantaloupe that seems to have evaporated, disappeared or was spirited away by aliens along the side of the highway. I was tasked with caring for her during the day while my mom was at work. Things went well and she healed enough to go home. I love my grandma to pieces and am very grateful that I wasn't working while she was visiting. It eased the burden on my mom's shoulders considerably.

 Our beloved chiropractor - Dr Michelle - moved away. While I'm happy that she found happiness, I'm sad that she left us. She is an amazing person! HOWEVER, she did leave us in very capable hands. We love Dr Eric! He specializes in chiropractic as well as physical therapy. He is also a GUY and can relate to Jaydon's needs. He placed a special order for a physical therapy aide from Australia and was able to give it to us at his cost. Jaydon seems to want to please Eric so he doesn't even balk when I tell him it's time for his daily exercises. He even goes the extra mile and does more repetitions than he has been told to do because he wants to have Dr Eric tell him how much he's improved.

 Our bathroom remodel is almost done. It has taken so much longer than any of us anticipated! The plumbing in this house is a DISASTER! The PEX pipe didn't get clamped right and the hot water sprung a leak. This caused a chain reaction. In order to shower, wash laundry, do dishes, etc. I had to climb on the dryer and turn the shut off valve. When we were done, I had to remember to turn it off quickly. The floor under the water heater is GROSS. Under the dryer, it is squishy! We're hoping at this point that it didn't ruin the floor we just put under the new tub! BUT, finally, that part of the plumbing is fixed. As soon as we get the money scraped together, we are going to replace the entire network of pipes under the house. Hopefully, with the swagbucks project, this overhaul will come about much faster.

I have been working on eBay and a website called Swagbucks.com trying to earn enough points to convert to paypal cash so that I can pay for my LDS Storymaker's Conference Registration without making my family starve for 2 months. I was over halfway there until this week when an unexpected emergency occurred and I had to raid the paypal balance to make the necessary payment. I cried for days before I finally made the payment, knowing that I didn't have enough time or resources to make up what I had just spent. The day before I made the payment, I discovered a Human Resources report at work with my name on it. Apparently, I have VACATION hours that need to be used! What a blessing! With the hours I can claim on the next few paychecks, I'll be able to pay for both my registration AND Christmas!

 Well, I think that about catches everything up... with a few minor things being left out. Happy Month of Thanksgiving!