A Little Divorce With That Dialysis?

Please excuse the huge gap in posts.  We have had a LOT going on.  Sonshine's dad decided a girlfriend was just what he needed to get him through the next 25 years.  Mazel Tov.  It's always a classy move to cheat on your family for 13 months before you accidentally get caught and have to come clean.

Everybody went into a tail spin.  It was a lot to get adjusted to.  Sonshine and his sister really got knocked for a loop.  One of their counselors explained it to them like this, "Everything that you have known to be solid and unshakeable in your life, just imploded."  Yep.  That about covers it.  As a parent you think that if you get them through the toddler years and the young years that you might be home free when it comes to divorce fallout.  They took it so hard.  If I hate him for anything, it's for that.  Two years have passed and they still are having to get their minds around the fact that their father has put himself and someone else above concerns about their educationand their mental and physical health.  I watch my 21 year old daughter struggle with OCD and anxiety while she tries to put herself through college.

Sonshine can't even apply to schools because he can't get the application fees from his dad.  We all just keep swimming.  I was clearing 500.00 a month when the ex left.  Now it's 1400.00.  Progress.  Still not enough but we'll get there.  It is painful to watch them both come to understand what their father's emotional and financial limitations are toward them.  As children, we all come to that understanding.  Theirs came sooner than I thought it would but they are great people with a nice reserve of positivity.  They are going to be fine. 

Sonshine's sister has a job now that she loves.  Sonshine has started a business with the son of a very nice man that I have been seeing.  It's not the family that we were used to, but it feels good.  The bf taught Sonshine and his sister how to change the oil in their cars.  He just taught sis how to replace her brakes.  She feels empowered and capable.  I am reminded so many times now of God's grace.  His simple ways of blessing us and keeping us connected to what is really important.  Lord, I know I don't say it enough, but thank you.

Have a Heaping Helping of Hemodialysis

Well, much has happened and I thought about taking the blog down completely.  Everything seemed too personal, too painful, too difficult to put into words.  Sonshine was being monitored each week after he left the hospital and after a few test results that showed that creatinin and BUN levels might be heading back where we were hoping, everything started to slide off the cliff.  Lab levels of everything started to go up and the doctors at one time had Sonshine on 3 different blood pressure medications just trying to get it down.  Finally, Dr. Cheam, Sonshine's Pediatric Nephrologist said it was time to prepare for hemodialysis.  We left the office in shock.  I don't think there is any way to prepare yourself or someone else for news like that.  I do know that Dr. Cheam could not have done a better job.  We left the office that day with a referral to a vascular surgeon and the promise that the office staff would work with us to get some radiographic films of the veins in Sonshine's right arm and hand.  The next day, we were at the radiology lab for the films.  Torture to watch since Sonshine didn't have any place that hadn't been poked with a needle in the past few weeks.  Once they placed an I.V. in his hand, they were injecting dye and taking pictures.  The radiologist was an ass.  He didn't come in until Sonshine was prepped, on the table and ready to have the dye pushed.  The dye made Sonshine violently ill and although he had not eaten, was dry heaving and feeling awful.  The doctor was visibly annoyed.  Sonshine was sobbing.  My 16 year old man cub broke down and I could do nothing to help.  They got the films that they needed, packaged them up and sent us out the door, films in hand to visit the vascular surgeon. 

The vascular surgeon saw us on Wednesday and wanted to do the surgery to make the fistula on Friday since he was leaving for vacation after that.  We were the last surgery on what was a very long day of procedures for the surgeon.  Never, never, ever be the last patient for surgery.  In addition to the fistula, the doctor would be inserting something called a PermaCath.  A catheter that has two lines (one arterial and one venous).  The dialysis nurses would be using the catheter until the fistula was mature and could be used for dialysis.  A fistula is the joining of a vein and an artery.  When that happens, the vein has to grow and get bigger to accommodate the increase in blood flowing through it.  The patient has to exercise the hand and arm to get the vein to increase in size.  Once the dialysis nurses feel that it has matured and the vascular doctor has examined the patient and given the clearance, the nurses will begin to "train" the fistula. 

Change Is The Only Constant...

Change has been the norm around here lately.  February 12, 2012 Sonshine went into the hospital for elevated Creatinin levels.  He was just trying to skip some school and fake being sick so he could come home from school early since his sister was coming home from college and his brother and fiance were coming in from Seattle for a couple's shower that we were throwing for them.  (This he revealed to me later in the hospital.)  His teacher sent me a text and told me that he didn't look so good.  I also got a text from Sonshine saying that he had been sick at school.  I picked him up, called the pediatric urologist who said let's not mess around, given his history, blood tests, urine tests, and a kidney ultrasound happened faster than you can imagine.  Around 4:00 p.m. Nurse Linda from the office called to say that the creatinin was around 4 and he flunked his test.  Get him to the hospital.  Enter the Pediatric Nephrologist.  Nice man but whenever he's around it's because things are definitely not good.  Disturbing news.  Tears.  More tears.  Even more tears.  The kidneys are failing.  Could happen quickly from here, could happen relatively slowly, but they are definitely failing.  Blood pressure is way up.  My 16 year old is going on 3 different high blood pressure meds.  A week in the hospital.  In the middle, throw a couple's shower and get right back to the hospital.  We are lucky to be able to be at a hospital connected with Children's Miracle Network.  It enables us to stay near home and for Sonshine's friends and girlfriend to walk to the hospital from the high school after school and visit.   Starting the last week or so of February, we are at the nephrologists office once a week.  Blood work weekly, urines weekly.  Blood pressure won't come down where the docs want it and I can see my son's legs starting to really get swollen.  the kid's arms look like a pincushion.  I would do anything to trade places.  Anything.  I pray, I beg, I'm angry, I'm sorry.  We are told at the beginning of April that we are heading toward dialysis.  Watch the numbers some more.  BUN and creatinin, phosphorus, potassium, systolic, diastolic.  Take the medication every 12 hours.  Oh, by the way, you will have to show 6 months of A+ medication taking dedication as part of the process to qualify for a kidney transplant.  Oh my gosh, transplant?  We go to Disneyland.  Really?  Yes, really.  The kid loves that stinkin' mouse and right now as far as my husband and I are concerned he can have whatever he wants.  To be continued...

Ahh, the girlfriend...

Merry Christmas! Happy Hanukkah and Happy Holidays! Today the family is out for about an hour and I wanted to update the blog. My New Year's Resolution is to find time in the days and weeks to come to more frequently update this blog. I want to be a way for other moms to reach out and I want to welcome those relationships into my life.
Sonshine and his sister are both home together while high school and college are both on break. It is music to my ears to hear them laughing and even to hear them arguing. At least the house feels alive. When they all start to leave the nest no one tells you that it is the noise that you miss the most.
Sonshine visited the urologist and was told that right now he is holding his own. The numbers from the blood work are still not "normal" but that might be too much to ask for these days. He is catheterizing every three hours during the night (because I set my alarm and wake him up) but during the days my concern is that he is distracted and that too much time is passing in between catheterizations. Unfortunately, at 16 he has to be an active part of the process when it comes to keeping his body healthy. Sometimes I do think that he gets discouraged and wonders what the point is. I hope that is not the case. The big news is that sonshine has a girlfriend and he likes her very much. Getting to know her and trust their relationship is a big step for me as mom. As long as he is happy and she treats him well, I will do my best to include her in the things that we do as a family. The trouble right now seems to be finding a balance between respecting their need to spend as much time together as possible and our family needing to carve out time to come together as family during the times that my daughter is home from college. If anyone has a playbook for that please let me know.
For now it is one day at a time. Anyone who tries to plan further ahead than that has a better grasp on life than I do.  Update on the girlfriend:  She has definitely grown on all of us and they have been dating for almost a year.  I am thankful that they both have each other and that she is such a sweet, loving, girl.

Celebrate Each Day!

Well my son requested that his dad take him to the Pediatric Urologist. Not because he doesn't love me but because we got the bad news together last time and he can never have both of us with him at any doctor's office because it just stresses him out to have both of us asking questions and he would rather just deal with one of us plus the doctor. Evidently, according to what my two guys tell me, sonshine was about to go on the transplant list and begin dialysis. But the new blood test numbers were half of what they were a month ago and the doc was pleased. He wasn't the only one! There are so many things that you could say made an impact. Of course there is the fact that there were many people praying for him. We have seen it make a difference when nothing else could. The fact that he has been catheterizing every 3 hours, (mostly) has made a huge impact. We could tell by the absence of any urine leakage that we were on to something.
At the end of the day, I don't really care what it's attributed to. All I care about is celebrating today and each day that my boy is able to terrorize me with his snarky teenage attitude. I love him and I know that under that crusty little teenaged boy beats a wonderful, loving heart. He loves his dogs and is going to miss his sister terribly now that the time for her to leave for college is here. On this night, while the family is sleeping for the last time all together under the same roof, I am grateful, so incredibly grateful for the days that have been celebrated here together in this house with these children who think they are grown already and my husband whom I love.

Today I Need To Know I'm Not Alone

My son is back from Disneyland where he visited for a few days with his sister, father, and 2 family friends. Every time he comes back from being away for even a day, I'm always struck by how much older he seems to me. While he was gone he managed to take his morning and afternoon medication without me reminding him and to self-catheterize every three hours without his bladder exploding.
Tomorrow we take in the weekly urine sample to be evaluated for infection and the day after that we have the big appointment with the pediatric nephrologist. Last month we were told that his numbers indicating kidney health and renal function, specifically the BUN and Creatinin were much higher than they should be and that they indicated a renal function of about 30%. We have been working so hard to keep him on a three hour cathing schedule hoping that it would take pressure off his kidneys and that the numbers would return to a more normal range. We are also working on taking weight off and hoping that it will relieve some of the load on the kidneys as well. It is always such a struggle for children that are in a wheelchair. Weight is an issue for everyone these days but especially when your physical activity is limited. Now that he is 15, it is not as easy to simply take him to the physical therapist, he has to want to go or he just simply refuses to participate once he is there. Working out at the gym is something that he enjoys doing with his dad. Hopefully, we can get him on the bus for doing a little more of that.

I'm starting this blog because I would like to know that there are other moms of spina bifida teens out there going through some of the same challenges that I am. Ideally, it would be great to be a support group of sorts to one another. I guess today I just need to know that I'm not alone.