Messy Miracles in the Making. . .: Quality versus Quantity

Messy Miracles in the Making. . .: Quality versus Quantity: Quality versus quantity. . . what a complex and sticky little concept.  It’s so different from case to case.  We’re currently faced with ...

Quality versus Quantity

Quality versus quantity. . . what a complex and sticky little concept.  It’s so different from case to case.  We’re currently faced with this issue for two of our children.  It’s not the first time we’ve faced it, nor the last, but is never easy.   Sergio has many things going on that constantly cause us to stop, rethink, and determine if what needs to be done is worth the degradation of his quality of life.  Most times it is, sometimes, it’s not.  As such, the hospital has been wonderful in coming up with new protocols never tried before just to save us from so many hospitalizations.  From drawing cultures and labs at home, to starting emergency interventions and key antibiotic therapy without the need for a trip to the ER and admission to the hospital (provided he is stable and “ok”).  We are also looking at Quality v. Quantity issues for Joshua as well.  His port has stopped working, he needs a new one.  He is developmentally not able to do it while awake.  We were incredibly blessed to have our wonderful oncologist go down to interventional radiology and “make a case” for him to get his port in IR under general anesthesia.  We’re just awaiting a date.  With the new port, we have decided to move his IVIG infusions back home.  He wants to try it.  This results in some significant changes in who and how he has his port accessed.  It also opens the door to trying new interventions for his neurological issues that affect his bladder.  This may allow us to circumvent the need for more traditional approaches but will significantly impact quality versus quantity. 

Sergio

Well, we made it through the holiday without an admission.  That’s not to say we made it without an infection, just that our new protocol that allows me to begin the same treatment and lab work the ER and hospital do; at home, worked.  This prevented another 4 day admission when he began running a fever the day after Thanksgiving. 

Sadly we’ve made several more changes to accommodate our young son’s ever changing, and failing organs.  Lately it’s his kidneys.  I’ve been watching his kidney numbers go up more and more.  His BP likewise has begun a steady upward climb.  The little boy who had low blood pressure his whole life, now has high blood pressure.  We know his kidneys are at fault, but don’t know how or why. . . just like every other thing that goes wrong with him.  There are no books that you can read, no websites that condenses his particular constellation of issues into a nice neat article and then delves into the treatment for those issues.  Nope, not Sergio. 

He is now tethered full time to both hydration and TPN, this means he’s lugging around 6 pounds of pumps, tubing and bags of life sustaining medications.  We had to move him from a backpack to a rolling bag (and if you know Sergio, this is not an easy feat!).  Last night he had to have repeat doses of morphine because his bottom was so sorry he wouldn’t sit down.  It is a side effect of the severe diarrhea that comes with the antibiotic he has to have.  So we augment his treatment with pain meds, acid reducing pastes on his poor bottom and we blow dry the skin with a blow dryer.  It’s a sight to behold.  It’s sad, it’s frustrating and it’s reality.  Yet, my baby has NO IDEA that this is bad.  He has never known anything else and when It’s over, it’s over.  He returns to his potato head stealing, microwave waving, water drenching activities as if he hasn’t a care in the world.  He is in the terrible “twos” or “threes” phase right now.  Complete with foot stomping, evil eyes, yelling at and door slamming.  It’s such a spectacle you can’t help but laugh, which makes him madder if it results in me quarantining him to his bedroom (mind you, this is the worst place in the world for him, as it’s off of the kitchen and bathrrom . . . aka, microwave, tub, sink, dog bowl heaven.  And no, morphine does NOT make him sleepy and all dopey, it just makes him feel well enough to act just like himself.  J

Joshua

Joshua has a neurogenic bladder and bowel.  This is a result of the first surgery to remove his brain tumor.  It was significantly worsened by the epilepsy surgery that further disturbed the areas that have the nerves that control the neurological aspects of bladder and bowel control.  As such, he feels like he HAS to go all the time.  I mean 20+ times a day.  Sometimes, he actually goes.  Most times, he can’t.  I get frustrated.  He gets frustrated with me and doesn’t understand why I get upset.  You see, he seizes the most in the bathroom.  It’s the least safest place in the house for him, yet it’s where he has to stand the most.  I has broken doors, showers, and even a faucet.  He has had the shower bar fall on his head causing more issues and he has torn up his side and back up falling against the door jamb and shower door latches.  There are treatments but it necessitates having to undergo invasive and very uncomfortable testing which he does not want to go through again. It hurts and it’s always very abnormal.  The permanent solution is a stoma in his abdomen that he can use to catheterize himself so he empties his bladder completely, thus eliminating the never ending sense of needing to go.  This is where the quality versus quantity comes in.  We have opted instead to pursue adding hydration via his port each week to improve actual bladder function.  Joshua is not happy about having to have his port accessed for days at a time, but he also agreed it’s better than the testing and if it works, then great.  If it doesn’t, then we’ll revisit our options.  His original diagnosis of brain tumor and subsequent treatments have taken a terrible toll on his body.  He has unrelenting seizures, neurogenic bladder and bowel, cataracts, severe developmental delays, severe hearing loss, osteoporosis, and ADHD.  Yet, he happily sits by the fire every night and watches the same re-runs of Disney shows over and over.  He is Peter’s shadow and never far from daddy when he’s home.  Loves having his finger and toe nails cut.  Manages to make it so his hearing aids “don’t work” an awful low despite reassurances from the hearing aid store that they do, in fact, work well. 

      The rest are doing well.  Tray blew away his transplant team when they saw how tall he had gotten.  He is now 5’10”.  He’s officially taller than me.  He is still growing and will be in a size 13 sneaker by winters end.  He has been having high blood pressure for a while now and finally the agreed It was time to address it.  So he’s started a blood pressure med, though it doesn’t seem to really be a high enough dose, as his pressures are still too high.  Will tweak the dose this week.  Overall, he looks amazing and feels even better. 

       Nettie has many aches and pains.  Her severe knee infection 2 years ago, set her back almost 10 years in terms of physical abilities.  In an effort to lose weight and get back some of the function she has lost, she injured her elbow, causing severe tennis elbow.  It’s very painful and though she had instant relief from a cortisone shot, she did not follow instructions to rest the elbow for at least 2 weeks.  Instead, because it felt good, she jumped into more exercise than ever.  Now she’s hurting badly again.  Not sure what else there is to do to help her.  L

       Cody is doing great, other than taking a very hard fall down our hard wood stairs today.  Pretty bad back contusions and elbow bruise, but he’s running around with my rain coat on and my hair dryer (a new and better zombie killing gun says he).  He’ll live. 

        Marriela is in heaven as her Elf on the Shelf, Dennis has returned.  For me, that means leaning heavily upon my night nurse to remember to move that dang little guy around.  Today I was truly impressed, Dennis was in a hammock, hanging from my dining room light. . . such ingenuity! 

     Peter and I are tying up this semester of school.  I am only 18 credits from my advance certificate of Ed.S (Education Specialist).  Sergio is making it very hard for me to contemplate what to do with my new found skills and education, but we’ll work something out.  Peter will be starting his internship with Vera House, an organization that works with abused women and children.  He will be full time in the spring and upon completion will be ready to work as a Mental Health Counselor.  So exciting!!

       On December 16^th, I will be having surgery on my rotator cuff.  I have done the cortisone shots, PT, ice, and heat to no avail.  I’m in pain all the time and MY quality of life is severely impacted which then impacts my children and that is not ok.  As such, I will have an impingement release, tendon repair and a bone spur removal.  I can’t wait!!  How said is that!!  So Christmas should be fun.  Working hard to have the buying and wrapping well underway by that point!

Well, that’s it for now.  Merry Christmas to all and a Blessed New Year. 

Renee

And summer is gone. . .

Time just keeps on moving along.  So much to say, literally.  Yet trying to identify those aspects of summer that really need to be shared (well, I find it necessary to share; I suspect most could care less. . . that's ok. hehehe) is hard.

The kids are back in school.  Joshua is "back" in 11th grade, eventually he'll catch on that he should be out of school at some point,thus far, he's content to just keep on keeping on.  Tray is sort of "back" in 9th grade.  He is in 10th grade BOCES but, because he goes for a half day, he could only fit in one 9th grade regents course, necessitating him to stay at the 9th grade building for his Global History and English courses.  So he is, on paper, a 9th grader but don't let him know that!!  LOL  Marriela is now in 7th grade and thus in the middle school.  She is doing superbly thus far! I'm incredibly grateful that the transition has been smooth thus far.  Home, that's another whole story.  Cody is in 4th grade and just started an instrument.  He wanted the tuba, but he wasn't granted the genetics for large lips and thus couldn't use the mouth piece, therefore, he was moved to the baritone (a smaller version of a tuba).  He loves it and is very good if I say so myself. Although the only notes I can discern are all made using a variety of key combinations that aren't on his actual practice sheet, but hey, sounds good to me!  He also went out for Student Council.  Really??  Where did this overachiever nonsense come from?  When asked what he would do to promote school spirit, character education and community service; he offered that every class that raises $20 towards a charity of their choice can have a pajama day. Now, for me, wearing my pj's to school was nightmare level stuff, but today kids think its awesome!  He then went on to say, if they raise $40 they can also have a Pokemon Day. I'm pretty sure we departed from school spirit there to Cody spirit, but he was thrilled with his suggestions and wrote them down with pride. Sergio is "back" in 1st grade.  By time he leaves elementary school he'll have mouton chops and a mustache and maybe 4 feet tall.  He'll be a bad ass "little person" who eventually will use some sort of device to swear at me.  I'm confident of that.  And Nettie, well, she called to say "HaHa" to them all on the first day of school like any respectable big sister would.

Thus summer was also the tale of several not-so-fun hospital stays followed by an incredible Make A Wish trip.  I'm going to do a whole update on the trip someday, it really deserves it's own dedicated posting.  But suffice to say, it was AWESOME!!

I graduated from St. John's University with my M.Ed. in Education Administration.  I was also successful in completing the bazillion requirements to be re-instated as a certified teacher of students with speech and language disabilities.  I have since enrolled back in school at Liberty University in their doctoral program.  I am looking forward to a day when I'm no longer in school, but also realize that I may as well use this time, when Sergio is not stable, to achieve things that will lead to bigger and better things in the future once he is stable.  Peter will be finishing his MS in Mental Health Counseling this spring!  What an accomplishment for him and he will pursue work immediately.

Yeah, there is so much more.  I just can't think of it all now. . . really, the couch about 3 feet from me is literally calling my name, I swear I can hear it whispering "come lay down and take a nice nap before you finish reading Socrates. . .shhhhhhhh."  That dang couch it's a terrible distraction.  Sigh, I am going to resign to its calling.

Till next time!
Take Care and God Bless,
Renee

The Hail Mary's. . .

We've all seen them.  The dramatic end of the game play that makes it or breaks it for the team.  A desperate attempt to make the impossible possible and pull away a winner rather than a loser.

Well, we've been doing that for 20 years now with our kids.  Throwing up those Hail  Mary's and then praying.  Praying we land the basket, hit the infield or make the net.  Tomorrow is another Hail Mary.

Truth be told, I'm positive there is a God.  You know why, because the majority of our Hail Mary's have worked!  We've been faced with two impossible choices and after making one, praying it was the right one.  Whether it was leaving a DNR in place for Nettie or choosing to revoke it and push her through another life crushing infection.  Or choosing between a life taking cancer or a life taking treatment for Joshua.  Or putting our newly adopted son, Trayvon through another open heart surgery only to know transplant was not possible if it failed at that time.  And even the impossible decisions of quality now v. quality later in life.  We've had to decide whether or not to use medications in our daughter that cause neurological issues in people the longer they are on them.  Doing so would give her the chance to see life in a more stable and rage free manner but may result in life changing complications in her future.  Not doing so meant holding my daughter daily as she raged for two or more hours.  What kind of life is that.  What kind of choices are these??  Shitty vs. shittier.  That's what they are, plan and simple.  But you must make a choice and so chose we did.

Today we had to chose again.  We chose to wait for a single blood culture tomorrow morning.  The result, positive or negative, comes with risks and concerns for either outcome.  We, as a team, decided a positive means Sergio will need a new line.  That means removing this one and leaving him without one for 3 days and then praying hard we can put a new one in.  A negative means we get to go home.  But, knowing that when we turn off the antibiotics, we may be facing another life threatening infection like the one we just went through.  Both choices are crappy choices.

I know there's a God, because he's held me up as I've stood an listened to the doom and gloom of doctors for one child after another.  I know my sweet daughter that was to be is smiling down from Heaven, happy and whole.  I know God has my back and though bad things happen, I also know he's not making them happen.  He's pulling us through the shortcomings of this life.  He loves Sergio and doesn't want him to suffer but that's the world we live in, the answers just aren't here yet.  So he'll hold me up as we make choices to give my precious boy both quality and quantity and wait for the "answers" to come.

Nettie has proven that we've made some good choices.  I signed two DNR's (Do Not Resuscitate) orders for my baby girl.  Each time they were to be activated, I look at her and just knew it wasn't the right time.  She'd give us the signal she's ready to go, it wasn't my call to make.  The same for Joshua.  Despite the grim statistics and the side effects of the meds, and the life long disabilities that may occur or the chance he may need to battle another cancer caused by the treatment of the first. . . once the info was shared, we told the Dr. we'd only accept positive reports from that day forward.  We were going to live like it was all going to work and he was going to survive.  If we had to face another potential outcome, we'd cross that bridge when it appeared.   And Trayvon, we decided it was the wrong time to move to transplant, despite the misgivings of the transplant team.  We had hard decisions to make, and harder ones to live with if we were wrong.  In all of these cases we were right.

Our luck, time, whatever will run out one day.  We'll be faced with such an impossible Hail Mary it won't be realistic to hope for success.   Until then though, I think we'll just keep throwing them up and praying they're going where they need to be to make us a winner and not a loser.  I just hope God isn't keeping score.  :-)

With love,

Renee 

How Hot Can You Get???

Even at 106.1 he was trying to smile in the ER.

That was the question Sergio decided he was going to try and answer for us Friday evening.  Now, this child has gotten "hot" before, up to 106.5 and I don't really even bat an eyelash, as long as he's getting the medical intervention he needs. . . but, Friday was a different story. We landed in the ER at 3:00 am due to a fever that was moving rapidly and he was looking very sick, very fast.  It earned him a trip to the PICU.  During the day the docs and nurses kept saying how good he looked, despite the fact that I kept saying it was highly abnormal for him to sleep all day and his heart rate was very high for him.  At 7:10 pm he decided to see how hot he could get. 

He had just reached 107.3

107.3.  That's how hot he can get.  I pray that's the hottest he ever gets again.  It was the highest temp of the new PICU, where we were thank God when he pulled this little stunt, but not the highest of the hospital.  The record was 108.1 for a little girl with a massive abscess in her abdomen.  They drained it and immediately she recovered and was on her way.  That's impressive.  Sergio's wasn't so easy. He shook harder than any seizure I've witnessed.  He cried out in agony as his body was violently put through a temperature change of over 8 degrees in less than 15 minutes.  He turned purple as the blood vessels clamped down to preserve his organs and his heart rate sky rocketed to over 200 beats a minute.  Yea, he spooked a few diehards in the PICU Friday; including me.

 It's the line again.  That damn, lifesaving, life giving, and potentially life taking line; the one that feeds him because his gut just refuses to work for some unknown reason.  The line that keeps him growing, thriving, hydrated, and fed.  Pair that line with a gut that is full of bacteria, as we all are, and a gut that likes to just share those bacteria with his blood stream, again for some unknown reason, and you have disaster.  These disasters happen about once a month again.  We do get breaks (the longest one was 18 months!) where he stays infection free, and then bam!!  We get stuck in this vicious cycle that is trying the best of the docs here. . . and me.  

I consider myself a pretty good problem solver.  I like murder mysteries and often solve the "mystery" of a movie before the end. I like games like Words with Friends, because they make me think and I love my medical apps that give me a case and I have to solve it (I've gotten pretty good too LOL - thinking of charging $20 for advice at this point!).  But I've lived with a walking, breathing, strong headed medical mystery now for over 6 years and I can't figure the answers out.  That's a kick in the gut. I can solve random crap but not the one that really counts.  

Sergio can't talk.  But he can communicate beautifully.  Sergio is smart, but he'll make you think otherwise if it means you'll ask him to do less. He'll play smart if it benefits him to do so.  Sergio can read (not at grade level, but can read words), he can spell, he can count he can problem solve and is incredibly resourceful in devising ways of getting to his water sources.  He is sly and creative and is his own favorite comedian (he literally will sit in his bed and crack himself up with evil little thoughts! LOL)  He is an integral part of our family.  The nurses that care for him in our home, love him like he was one of their own. 

Two days after his little fever fest.

The nurses in the hospital argue over who will have him to care for.  Why do I say all this. . . because he’s worth the fight.  He’s worth the time, energy and mental anguish to pull him through these awful infections again and again.  I often look at Sergio and think; “Do the doctors see what I see, and do they think we should fight as hard as we do?”  I never let my mind think the unthinkable, that maybe just maybe, this disabled little boy isn't work the money or time.  But, their actions speak louder than my worries.  They fight like hell to keep him going as I fight like hell right along with them.  The doctors have pained looks on their face each time we have to talk about replacing a line, or what to do with this severe infection or how do we keep this from happening.  They just don’t know either.

So in the end, the mystery stays just that, a mystery.  My little spit fire who loves his naked, backless potato heads (preferably in water).  My naughty little man who sticks his tongue out at everyone now because he knows it gets a rise out of virtually anyone that works with him.  My mystery man who has mastered the best primal growl you’ll ever hear from a human when he doesn't like the outcome of a plan he had devised.  And as everyone knows, a mystery is just waiting to be solved and so I will. . . hopefully it will be in time.  

Days of Summer....

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”

― Washington Irving

            It’s pouring out and the house is quiet. . . the two noisy ones are at summer school.  Thought it was  a good time to put some words to “paper”.  Marriela has advocated that I take up Vlogging.  I think not.  There aren’t a lot of pics of me out there and there sure as heck not going to be videos floating around the world of my mug talking with my irritating nasal voice.  Oh my.   So I’ll stick with the Blogging, which she completely disagrees with.  Sigh, sorry to disappoint sweet girl!

This was supposed to be the update following our incredible Make-A-Wish trip to the indoor water park.   Sergio became very sick and spent 8 days

Sick little man.

in the hospital instead.  But he defies the odds and the antibiotics, despite not

Sprinkler time!

working for many days, have successfully cleared the infection once again.  I asked his doctor the odds of saving his line, he said it was 50/50, but Sergio has won the 50/50 coin toss over 80% of the time, so he would never bet against him.  J  That’s my boy!! If only we could put that good luck into something far more productive than saving central lines! 

Anyway, back to topic at hand.  We didn’t get to go on the trip.  We are looking at trying again the last week of August.  We started a new method of giving his Immunoglobulin treatment and so far it is going very well.  He is now getting it via little needles in his tummy and a pump pushes the IG into his tissues where it absorbed over the next week.  We repeat this weekly rather than going for one big dose IV each month. The IV method was causing severe reactions that were also resulting in hospitalizations so I didn’t think quality of life was being met the way it should be.  Praying this helps with infections AND decrease the reactions so we get all the positives and none of the negatives. 

The first fireworks the boys have seen.

The rest of the kids took the news of a delayed trip better than we anticipated, especially a certain little brown girl who doesn't handle change well at all!  I did cushion the blow by scheduling her Hawaiian themed birthday party for the local public pool.  This was a nice distraction and now we’ve been researching Luau themed birthday supplies on every site we can find.  Summer school, and the anticipation of several other fun things have helped create the distraction we needed. 

Thinking of making one of these for home!

Enjoying our turkey legs!

This past week we took four of the kids to the Renaissance Festival.  Tray, Cody and Marriela really loved it!!  Marriela got so much more from the shows than we anticipated.  Cody and Tray loved all the armor and other crazy outfits people looked just a tad too comfortable walking around in.  Joshua went to Casey’s Place Medical Respite where he decided he should keep them on their toes and started seizing badly at the park.  But they gave him his rescue meds and he pulled though and stayed the rest of the weekend.  He LOVES that place and it’s the only place he can go safely.  Sigh. 

This week we are leaving for four days to the Brian Bisgrove Home of Courage in Owasco, NY.  What an incredible gift for our family.  I’ve talked of this incredible place before, but please know this is really is the closest thing we’ve had to a relaxing family vacation in six years.  We did go for four days

Last fall at the Home of Courage

last summer to Lake George and had a great time!  But, it was intense, I was running 2 antibiotics for Nettie’s severe knee infection, 2 antibiotics for Sergio’s recent line infection and all of the other meds and IV stuff that is routine.  The Home of Courage is just relaxing.  There is no pressure to “go” anywhere.  Just hangout, fish, shoot bb guns, put together puzzles, cook out and get as close to “camping” as we can without risking the kids.  I am looking forward to it!!!

The week after that, Cody is going to a Ninjago Lego camp, then Tray leaves for a week for his Camp Hope with Heart near NYC and the week after, Joshua goes to his Camp Hole in the Woods camp for 4 days near Lake George.  THEN we hope to take the kids on the Make-A-Wish trip as Sergio will be suffering from severe cabin fever by that point!! 

Tray and Cody are very into “Zombies” and how to survive an apocalypse. I asked them to research the CDC site and find a list of 20 items they would need to take in an emergency to survive.  A few of their answers. . . brace yourself for the well thought out ideas. . . don’t be shocked if you didn’t think of some of these. . . ready??  A teddy bear, Bo and Mazzy (our dogs), a “blunt object”, toilet paper, a note to say good-bye to the family, food, a bandaid (just one apparently is all you need for a zombie bite), layers of clothes, a book to read, and the best. . . berries.  I’m pretty sure they both spelled batteries wrong,

A day at the park.

at least I’ll just hope that was their thinking.  Clearly they will not be surviving well for too long in the event we need to really leave in an emergency.  There were some good answers (with some prodding) like their meds, a knife, some water, etc.  LOL  Marriela just said not to worry ‘cause we’re going to Heaven soon anyways. . . this is a running theme with her, should I be worried??  She has plans for my pictures, our house and my ashes!  LOL 

The kids are all doing well.  Tray is so healthy and strong and his last biopsy in June was perfect.  Cody has had almost no issues with his asthma and he is excelling at his Jui Jitsu.  Joshua has actually been doing very well relatively speaking.  He has about 3 seizures a day, mostly when he first falls asleep or early in the morning hours, or during naps.  But he is happy and well otherwise.  Nettie is doing very well and is always busy.  She comes over every other Sunday and next week is going to restart attending Church with her new worker (at her request).  I love her so much!  She will be going with us on the Make-A-Wish trip and she is very excited about that!  Marriela is doing well.  She is growing, healthy and mostly happy.  Recently however, we are dealing

Loving the pool!

with a lot of “anxiety issues” and an over focusing on recurrent worries.  Starting a very mild med to see if we can reign some of this in for her, as it really upsets her when she can’t “turn her brain off” on a worry.  She has to talk about it, share it and just overall obsess and it is very upsetting.  This results in tears and anger at her “brain” and the panic like symptoms she develops as she becomes upset, such a difficult cycle to break, and it hurts my heart to see her struggle with it so much.  But overall, her summer school has been great and she is so excited about her birthday party!  Trying to keep her focused on the things to come.  Sergio is

First days of summer

doing well.  When he’s not sick, he’s well.  He is going to summer school, and the gets a little water play in every day (more than he should, but he’s very resourceful!) 

Well, this is long enough for today.  Sending love and peace for a wonderful summer everyone. 

Renee

Messy Miracles in the Making. . .: Just a little update

Messy Miracles in the Making. . .: Just a little update: So much happens in such a short time, it's hard to keep up with it all via this blog.  I guess I should do it more often.  So here'...