Just Breathe

We’re home!  And we’re trying to catch our breath (and our sanity!) after our crazy and nerve racking week.  Thank you all, so much, for all of your wonderful thoughts and prayers for Sam and our family.  They are so appreciated.  God has blessed us with such wonderful friends and kindness from strangers.  This love brings such a smile to my face and gratitude in my heart.  Where would we be without you?  We are so glad that you are in our lives.

As many of you know, Sam suffered a seizure last Friday morning, which required a call to 911 and a trip to the Riley ER in an ambulance.  While taking a bath, Sam told me he wasn’t feeling well, and as I tried to help him out of the tub, seemed to become confused and disoriented.  After laying him on the bathroom floor (and on the Red Rug!) became unresponsive (but still breathing), which required additional help, thus the call to 911.  Thank goodness I was actually dressed (so to not scare the paramedics/doctors with my morning outfits and bedhead), for I hopped right along with him in the ambulance for the trip downtown.  Funny how on TV the ambulances seem to race to the hospital. Ours seemed to travel at a snails pace!  I drive faster to Target than they did to Riley!  Once there, our nurse Abby and ER doctor, Dr. Collins (who were WONDERFUL!), worked to get his port accessed and began running many tests on Sam to determine what was going on…including an EEG to monitor seizure activity.  When it was determined that he was still having little seizures (although not physically noticeable) more meds were given to calm things down.  Sam was transferred to ICU where he spent one night and then transferred up to the fifth floor where he stayed until he was discharged Sunday afternoon.  The cause of his seizure?  They couldn’t say for sure, but attributed it to the fact that he had a brain tumor (even though it has totally been removed by Dr. Boaz in June), brain surgery and radiation and tinkering around in there can cause seizure activity.  I guess that is a lot for a little brain to handle.  Duh!

Monday was spent playing catch up while Sam rested on the couch.  It was great to spend all day in our jammies, catch up on some laundry, watch movies and rest and catch our breath after our eventful weekend.  Around 8:30pm Sam got up to use the rest room, and upon returning to the couch, fell head first into the coffee table resulting in a large goose-egg bump and a bruise to go with it on this forehead.  It was soon apparent to us after engaging Sam in conversation, that he was confused again…sometimes able to answer simple questions, sometimes not.  Back to Riley we went and I nearly cried when I saw the waiting room in the ER!  Every seat was filled and most of the people in there were wearing masks.  (Hello flu season!)  Not a great environment for someone with a compromised immune system.  Luckily, a nice police officer standing by went inside and told the staff about Sam and they rushed us back immediately.  And guess who we saw standing there?  Abby the nurse and Dr. Collins the ER doctor!  The same wonderful staff who had cared for Sam a few days before.  This was such a blessing for they knew his story and what meds he responded to.  Truly, I felt blessed.  After another CAT scan (he had one on Friday too) to make sure there was no bleeding on the brain due to his fall (all clean-all looked great) he was hooked back up to the EEG to monitor his brain activity.  Again, Sam was still having seizures and they gave him medication to stop them.  This time, it took a lot more meds to get them under control.  Once stable, he was transferred back to the ICU where he spent three or four nights (sorry…kinda lost track of time here) and then back up to the fifth floor until he was discharged again Monday afternoon (Oct. 26th).  During this time, Sam had some vision problems.  He frequently informed us that things looked “dark and blurry” and that I had a big tooth and looked funny (I really couldn’t argue with him here…I was operating on minimal sleep and hadn’t brushed my hair or teeth for that matter in a day or two).  After frequent visits from the neurologists and an MRI, it was determined that Sam was suffering from high blood pressure that caused some swelling in the back of his brain, causing pressure to build, resulting in a seizure and some vision problems.  As stated in the previous post, the name they gave to this condition is called PRES (an acronym) with the “R” standing for “Reversible.”  Slowly, Sam’s vision returned and although not totally back to normal yet, is much better.  (I’d say he’s about 95% there!)  After consulting with Dr. Pradhan (we love Sam’s oncologist!) a new theory popped up as to the cause of these seizures…Sam’s steroid use.  Sam has been on steriods since May 29th to calm the swelling in his brain down due to the tumor (before it was removed during surgery), to help calm his brain down after surgery (had swelling) and to help with swelling of the brain due to radiation.  Even though Sam is still on a small dose and we continue to try to ween him off this drug, it can obviously take its toll.  We’ve been in the process of weening him for some time now, but each time we take a step down, Sam gets violently ill.

As parents, we wear many hats, don’t we?  Teacher, taxi driver, caregiver/doctor/nurse (I’ve become very profecient in this department as of late! I’m wondering if I’ll get an honorary certificate of medicine when all of this is over), chef, housekeeper…just to name a few.  A new one has emerged for me as of late…child advocate.  While making one of my frequent trips to the public restroom on the fifth floor, I noticed a sign up in the parent lounge.  It was titled, “Being Your Child’s Advocate.”  It went on to say the following:

*You are your child’s greatest advocate!  You have the ability to be the voice for your child who cannot or does not feel comfortable speaking for him/herself.

*If you do not want 10-15 doctors entering your child’s room to discuss the patient’s treatment plan, say so.  If you have questions about treatments or why doctors are taking a certain course of action, say so!

I must say, I live by the philosophy that you get more with sugar than with vinegar.  A warm smile and a pleasant tone of voice can get you a long way in most situations.  And for the most part, I consider myself a pretty laid back person. (Are those of you who know me best cracking up at that last statement????) But after getting the run around from a few new doctors about Sam’s new bacterial infection that he contracted during his second stay in the hospital, and not treating him soon enough in my opinion–She appeared!  In the past, I have always been able to tell her to be quiet and go away, but this time, it was not to be.

During her visit, I think she was a bit short with the doctors a few times for she wanted answers and she wanted them now!  And…she wanted Sam’s newly diagnosed bacterial infection treated immediately-not waiting six hours to administer the medicine he needed, for he was in a lot of pain and had been for two and a half days.  I’m sure her facial expressions weren’t the friendliest either for I think she raised her eyebrows a few times and she didn’t seem to smile much.  All these distractions reminded me that we have crossed paths a few times before, but she mainly had made a guest appearance at my house occasionaly-never at the hospital. Honestly, I would much rather keep our relationship distant or non-existent, but unfortunately, she does come around from time to time.  Who is she you ask?  She is not really the kind of ‘friend’ you want to share with others. She has a way of spoiling things, and its the kind of personality that one is not proud of.  My husband even has a name for her….Bratty Erica.  And she visited the other day.  :(  Thank goodness she didn’t hang around long, for no one likes her.  I know I don’t.  She was Sam’s advocate alright…but after getting the run around and hearing her child in pain for a few days, didn’t go about it nicely.  I am happy to report that Batty Erica has left the building and I hope she doesn’t return anytime soon.  And Sam’s bacterial infection?  It is gone too!  Hooray!

Sam is still weak, but hopefully improving each and every day.  He is wobbly and needs our help getting up from the couch, using the restroom and getting around.  He tires easily.  He needs his blood pressure checked at least twice a day to make sure it stays where it should be.  He is on more medication than I care for him to be.  (Where are the days of just one Flinstone vitamin in the morning??  Gosh, how I miss those days!) He is also still vomiting a couple times a day, which is frustrating…for everyone.  He desperately wants to do all the things seven year olds should be doing such as riding his bike, having sleepovers, playing football-but can’t…and it breaks my heart and sometimes my spirit.  He is due to begin Round two of his big chemo November 3rd, which I am not too excited about, but Dr. Pradhan says that if his numbers are up, we are ready to go.  Our Sam is such a strong, tough boy and one of the sweetest little guys we know.  I’m sure we’re biased, but we think he is simply amazing.

Through all of this turmoil, we continue to keep our eye on the prize…getting Sam healthy again.  It’s what keeps us going-that and our faith. One day at a time.  We just try to win each day one day at a time.  Perhaps this time next year we’ll be back to just one Flinstone vitamin in the morning and Sam will be back to doing what “eight” year olds do and that brings the biggest smile to my face and warms my heart.