Timeline of Septic Shock

January 20th
I receive a call, Sergio has a fever.  Off to the school I go, get him, draw labs, cultures, start antibiotics.  He gets hotter and hotter.  I give a dose of toradol and Tylenol.  He finally cools down.

January 21st
3:00 am, my phone rings.  Sergio is 103 degrees.  I come to his room and find him shaking violently as he spikes one of his very high temps.  His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids.  His heart rate is in the 190's.  I know he has a severe line infection (thanks to his usless gut).

4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105.  I've already started everything needed for the sepsis protocol the ER uses.  So we sit and wait for a room, while he cooks and I watch the monitor.

6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something.  She orders a bolus of fluid.  We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.

7:00 am the PICU doctor is consulted, Sergio is looking septic.  Orders more antibiotics.

3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well.  Cultures are positive for a gram negative bacteria called Klebsiella.  It is his arch nemesis.  It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.

January 23rd.  Sergio looks wonderful.  He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed.  We go home at 3:00 pm on two antibiotics.

3:30 pm I arrive home, he is shivering.  I quickly find ways to justify the shivering and try to reassure myself that he is ok.

5:00 pm Sergio has a temp of 101.5.  Take a deep breath, cry that it's all starting again just 2 hours after discharge.  Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".

January 24th
12:05 am  Phone rings.  Sergio is spiking quickly and he is shaking violently again.  Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.

12:30 am Sepsis protocol restated.  The antibiotic stopped prior to discharge, restarted.  Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.

3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs.  He is doing well and seems to be responding.

January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions.  The attending physicians are convinced he has a clot.  We head to CT scan to look.  He looks off but nothing specific.  CT all clear, just Sergio's body doing strange stuff without explanation as usual.

January 26th
9:00 am Sergio is not himself but he is no longer "sick".  Very sleepy, but once up, plays hard and walks the halls.  Has some respiratory stuff going on.

3:00 pm - Looks much better.  Causing trouble, playing in the sink.  Going home on two antibiotics again.

January 27th - Had a good night.  Doesn't look like he feels well in the AM though.  Run some errands, to return to Sergio running a fever.

11:00 am - Back in the ER for the third time in five days.  This time, he isn't bouncing back.  Several boluses giving.  Spikes to 105.4.  Given Tylenol.  Cools down, looks a bit better.  No room in the PICU so sent to regular floor.

3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future.  He is moved to the PICU as a full PICU patient.

6:00 am - Sergio is now on maximum dopamine support to keep his pressures up.  Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm.  Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while.  The fluid is catching up though and his lungs get "wet' and he struggles to breath.

3:00 pm - Finally go to surgery.  Line removed.  Return to room on high flow oxygen and real struggles to breath.  Chest x-ray looks worse.

January 28th - Struggles to breath continue.  Blood pressures are very, very high (170/110) due to fluid overload.  Wean off of Dopamine to help bring B/P down.  Give lasix to help pull some off.  Needs several potassium infusions to keep it up.  Give does of IVIG to help boost his immune system as it has crashed in response to this infection.

January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days.  Breathing is better, but still needing O2.  Develops awful cough.  Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.

January 30th - Feeling better.  Cough continues.  Cultures are negative so we stop all antibiotics. Getting more potassium.

January 31st - Fever returns to 103.4.  All antibiotics and steroids are restarted.  More potassium.

February 1st - Flu A positive.  Someone in the hospital gave him the flu.  More potassium.

February 2nd - Cultures are neg. so we stop all antibiotics and steroids again.  On Tamiflu for the flu.  No longer needing any O2. Still getting potassium infusions daily.

February 3rd - Fever returns to 103.7.  All antibiotics and steroids are restarted.  Frustration abound for everyone.  White count plummets.  More potassium.

February 4th - Sergio is looking good.  Playing, happy, more energy.  Decision is to wait one more day and discharge on all antibiotics if still good.  Increased Sergio's potassium in his hydration and TPN to maximum amounts.  One more infusion.

February 5th.  - Sergio GO'S HOME!!!

We are now over 5 days out from the completion of his antibiotics and thus far doing great.  Praying all this is behind us.

This is a boring recount of what it's like for my sweet baby.  He goes through so much just to live, be happy and play.  He doesn't care how sick he "was" as long as he feels good again, he moves on.  That's the reason I fight so hard for all of my kids.  They WANT to live.  So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.

More interesting posts to come soon.

Love,
Renee

Long lost update. . . .

WOW!!  It’s been a long time since I’ve updated my blog.  I’ve been remiss in my duties keeping you up to date on the latest and greatest from the Curkgang.  I’m sure you’ve all be waiting on baited breath for the daily going ons in our home and life (insert eye roll).  Actually,  I’m pretty sure you could live the rest of your lives having never seen another update from me, but heck, I’m going for it anyway JUST in case someone out there can’t survive.  I’d hate to be responsible for the early demise of one of my faithful reader s (all 13 of you I think) J . 

So what’s going on. . . . a lot and not much.  I’ll start with our littlest one (in size only, as his attitude MORE than makes up for that).  He had a rough patch back in January with a nasty three week admission, several trips to the PICU and eventually the loss of another central line.  That line was replaced with a PICC (peripherally inserted central catheter) in his upper bicep.  Since that time, he’s had an amazing run.  There have been two fevers episodes (scares) but both were successfully treated at home with our wonderful protocol that allows me to do it all without going to the ER. 

With this run of health, Sergio has successfully toilet trained during the day!!!  Not without some interesting twists because that’s just Sergio.  First, he’s discovered he’s now his own producer of liquid (water) to play in!!  Wah Hoo!!  Yesterday he was playing in his bucket of water and it wasn’t quite as full as he wanted, soooo he filled it up more, by letting loose a bladder full of highly dilute urine.  He had a devilish smile on his face as he proudly looked at me solving his own problem.  Needless to say, he’s not left unsupervised for any length of time now. 

On another Sergio front, he received the topper to his bed!! Now he is safe and secure in his bed.  He had learned how to stack pillows and blankets to pull himself over the top of his bed (which is level with my chin, thus high off the ground) and we were terrified he was going to topple head first out of the bed.  With some searching, I was able to secure a couple of grants to cover the $2,000 enclosure.  These special needs companies make a killing on these much needed products.  So frustrating! But, he’s now safe and sound. 

Ok, onto Nettie who has big news to share too!!  After her knee infection, 5 week hospital stay and a major decrease in mobility due to the now scarred knee, Nettie’s physical health has taken a hit.  While in high school, we choose a power chair for her.  This was to help her stay in pace with her peers, to be higher, thus more approachable, and to decrease the fatigue of moving all over the large building using a manual chair.  She had access to a school bus and ambulette service to transport her in the power chair.  However, once she graduated, moving the chair from the house was impossible (we do not have a van with a lift).  The new funding from Albany does not allow her to access the ambulette service (wheelchair van taxi’s) if she has staff that can transport her.  Obviously you’re never going to find staff who own their own wheelchair adapted vehicle!  So, we requested a manual wheelchair.  It was flat out denied from the insurance.  The one she has now (the one in many of her pics) is a typical hospital wheelchair and it is causing severe back and neck pain.  She is now requiring bracing of her neck and back to prevent further damage.  So, rather than take up a fight I was going to lose, we opted to take a different approach.  Annette’s card business has allowed her to purchase several items to help her remain independent.  She has purchased new braces for her ankles (the ins. Only covers one pair every 2 years and she needed new ones at 18 months), shoes to go over the braces and has almost enough for a three wheeled adaptive trike.  We decided to start a KickStarter campaign to try and promote her card business and raise the funds she needed for her wheelchair!  It was SUCCESSFUL!!!!  She raised enough to purchase the wheelchair, card making supplies and maybe a new computer to help her produce her labels faster.  She received a small Cricut (scrapbooking machine) for Christmas two years ago, but has never had a computer to use it with.  She’s so excited about the new things she can do with her cards with this machine and computer!!  We were blown away by the support, but honestly, this child deserved it and I’m so happy she was successful. 

Joshua and many other Special Olympians were honored by the Liverpool Lacrosse team.  He wore one of the players jerseys and were presented on the field!  What an honor!  Joshua is also going to the PROM!!  I’m not sure with who yet, he doesn’t have a date secured, but we’re working on that.  He’s very excited to go.  This mama’s heart is breaking and bursting at the same time.  Such a passage of rite but, it signals a finite time remaining for school before we must face the reality of adulthood.  Joshua’s unique combination of needs will preclude him from working independently. . . ever.  He is not a highly motivated individual (unlike Annette who, once she gets an idea in her head is unrelenting until she achieves it).   The future is just around the corner now, but we’ll take it one milestone at a time. 

Tray is doing phenomenal in school and in health.  He has joined the track team and is doing shotput and discus.  He is enjoying it tremendously. This summer we are looking for activities to keep him busy and not glued to the computer games.  He’s not really ready to work yet (developmentally or maturity) but he’s close.  I’m going to find some volunteer opportunities to work on those skills needed for employment.  He’s also going to his heart camp this summer, though he ages out next year!  So hard to see my “babies” growing up!! 

Marriela is thrilled she is not attending summer school this year.  Though she qualifies, she made the announcement that she will NOT be going because she is in middle school and no longer needs to do baby things.  Her newest obsession is sextuplets.  S
he is determined that she is going to have said sextuplets (“either she will have them by pushing them out or she will adopt sextuplets” – at least she’s flexible in the methodology of obtaining this brood of children).  With the concept of sextuplets comes the need to locate and write down EVERYTHING that she may need for six babies at one time.  6 seated strollers, Chevy Suburban that can fight six children, six car seats, six sippy cups, six swings, six white cribs, etc. etc.  Ohhh, and she’s moving to North Carolina.  She’s going to live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a hot tub and she will be contacting Mr. Congel to close Destiny Mall here in Syracuse to open one instead in North Carolina.  Good luck with that my sweet girl.

Cody is getting ready for another Jui Jitsu tournament right here in Syracuse.  He’s ready, just needs to work on those double leg take downs and controlling the clock.  He’s advanced so fast in this sport.  He’s also doing intramural basketball in school.  Last night I took him to his Spring Fling dance were I saw him dancing unabashed and in no less than TRIPLE time of the song playing.  He does everything fast – including dancing apparently.  I even witnessed the only “worm” in the room, yes, it was my son in his white shirt belly down on the cafeteria floor.  Ewwww.  A mean round of Pokemon card trading and the dance was over.  It is so wonderfully odd to have a “typically” developing child!

Peter is done with his courses and only has his internship remaining.  However, there is an issue between his university and the State of New York and all students in NY must delay their internships yet again (already delayed it one semester, now it will be two).  That leaves a quandary.  To remain active in the program, he needs to continue taking courses; however, he has completed all of the necessary courses AND 12 extra credits.  We are working with the university now to see what compensation and alternative plans they have to accommodate these students.  Peter has also successfully passed his hypnotherapy course and is now a licensed hypnotherapist!! He is busy setting up his business model and securing an office to begin servicing clients.  So proud of him!!!

Finally, the one and only, myself.  I am finishing up two courses right now that will finish next week.  Then I start the last of my two remaining courses.  I’ll be done at the end of August and will be conferred my Ed. S. degree in Education.  I too have started my own business.  As an ardent opponent of the testing madness occurring in education today, and a local advocate for the refusal movement (which, many of you may have seen, was highly successful in NY) I have decided to open my own Education Advocacy practice.  Education Advocacy of CNY will be up and running by the end of May.  I have several families I’ve already been working with and know that this is a huge area that needs to be addressed.  I am so excited to be done with school and putting my skills to work finally!!  This will allow me to customize my schedule, work from home or the office Peter uses and allows flexibility in my time to meet all of the kids needs while still making an income.  The best of all worlds!! 

So, that’s where we are.  Could have totally lived without these 1700 words in your day I suspect.  Rest assured, it’ll be another gap of time before my next update so you’ll have lots of time to recover. 

Take Care and God Bless,

Renee 

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.