Paradise Island……sigh!

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Paradise Island……sigh!

Oh Paradise Island…it is the make believe place I live where everything is perfect, amazing, cheery, sunny, kid not sick, kid doesn’t have Autism……I’m skinny all the time and they serve endless Grey Goose and soda with lime!

In real life when I am having a crappy day and am talking to my friends I always end my conversation with “how awesome is Paradise Island?” Let me assure you as I have said a few times on my blog before, I appreciate every challenge I have been faced with on this journey, however sometimes my kid just simply needs a god damn break.

If you have been following his story you know that we went from high dose monthly IVIG to low dose weekly SCIG. The SCIG lasted 2 1/2 months but it made his tics worse and his speech didn’t improve which is something we saw from IVIG. Yes it did keep him “healthy” as far as not catching a cold but otherwise SCIG didn’t work for him.

3 weeks ago we started back on high dose IVIG. It was a 5 hour protocol via an IV infusion and he did ok until he made himself barf that night due to being too full (so he says). Since then he has learned to swallow pills so I no longer have to give him the “applesauce cocktail” of meds.

Yesterday we were supposed to start his second IVIG infusion since being put back on it. His AMAZING DEDICATED Nurse Rachel showed up. Let me just say that this Woman is beyond amazing. Not only is she a Mother herself of 4 kids but I truly believe she considers my son her 5th kid. She is so heartfelt and we have become very close friends along this journey the past 2 1/2 years. Without her I would simply be lost….

So Nurse Rachel came yesterday and we poked WK the first time and his vein collapsed. Mind you, I had been hydrating him for 48 hours prior with TONS TONS TONS of fluids (Water, Gatorade, Flavored Water, etc). We then poked him 2, 3 and 4 more times all of which his veins collapsed meaning they gave out, his arm turns hard and no medication makes it thru his veins. Mind you this entire time WK never cried, never flinched and never did anything except hug his blankie and ask for me to hug him. If you don’t think he is the Warrior Kid yet, here is yet another example of a kid not crying after being poked 4x in 30 minutes with an IV.

We decided he was done and that we would try again the next day. So I continued to hydrate him yesterday until Nurse Rachel came back the following day. Ironically in the day of a life, we had an appointment with his Psychiatrist early the next morning where WK was acting out of his mind. He was literally flopping himself on the Doctor’s floor, being loud, not paying attention to the questions asked of him, etc. This is the 1st time in 2 years where his Doctor (who is world renown) said he was concerned about WK’s behavior. I mean don’t get me wrong, I am not a dummy……..CLEARLY I knew WK was out of sorts.

So Dr Psychiatrist added an additional ADHD medication to the already complicated medication regime. Ok so whatever, what is one more pill for this kid to swallow? I mean crap……for reals…….oh Paradise Island, how I freaking LOVE you!

Still with me? After we visited Dr Psychiatrist, WK and I came home to meet Nurse Rachel who was already set up and awaiting our return. WK happily sat down in the chair with his blankie ready to be poked as he knew that I was going to buy him some stupid a** crap on his iPad that cost $99.99 (i.e. gems for some APP). We got the IV up and running on the first poke with his medication but had not started the extra saline fluids he needs in order to combat side effects of the IVIG medication.

Well Nurse Rachel and I decided we were going to add a second IV line to introduce the Saline bag of fluids which is supposed to run before and after the medication to decrease potential side effects, which if you need a reminder are typically like Chemo side effects (barfing, nausea, fever, etc). So the 2nd vein blew out right away and then the vein in his other arm blew out 15 minutes later. So now we have had 6 veins take a dump in the last 24 hours. Wk turned to me and said “please Mama no more pokes.” I bursted out crying because my little man used his words so appropriately to tell me he was all done. I was so disheartened and so scared because in my heart I knew what was going to be the outcome of this crap.

I called his Doctor and got an Emergency appointment this afternoon and my gut was right, WK needs a surgically input Port under the skin of his chest wall where they IV line can connect to. It is basically exactly what a Chemo patient gets in order to tolerate the multiple IV lines of medication. FYI shall I remind you that I am also dealing with Autism and ADHD while dealing with this crap? Like this kid needed anything else more to deal with. How funny that a complete stranger today said to me quote “wow your son is so friendly and so happy.” Meanwhile I am thinking “hell yea he is…and if you you knew what he went through the past 24 hours you would nominate this 11 year old for a big time award.” Not sure about you, but the majority of people I know don’t love needles and here I have this AMAZING 11 year old kid who never cries, never flinches and never complains. Wow. Really wow!

So the future for us looks like this. He starts back on the SCIG this Sunday morning with 6 grams versus 5 grams of medication. We have to revert back to the weekly SCIG until I can find the right Pediatric Surgeon at the Children’s Hospital Orange County who can put this Port in a timely manner. So we have to have the evaluation, pre op, operation and follow up……I am think at least 4-6 weeks? In the meantime sure he is going to have some medication infused in his body but the SCIG makes his Tics substantially worse:(

Paradise Island. Sure I am #blessed in a lot of ways but my kid didn’t get to ride his bike outside today, my kid didn’t get to have a playdate or go swimming. Instead my kid was at Dr Psych and then Dr Infusion only to find out that the infusions are going to get much worse.

Yep guess what? I bought WK whatever stupid upgrades he wanted on his iPad today. And guess what else? I am going to buy him whatever the hell he wants on Sunday when most families will be at the pool or beach and my kid will be locked up in his house hooked up to some medication through his stomach for 6+ hours.

Oh Paradise Island……how amazing you are in a LOT of ways but seriously this week you can SUCK IT!

#warriorkidrules #pidd #pandassyndrome #autism

ps-2nd Surf Camp was super duper fun and here are a few photos and videos to prove it! WK surfing with his awesome Surf Coach, Blake Michaels!
WK and his Surf Coach Blake

Warrior Mom Getting Down Too!

Mom loving her son!

Mom loving her son!

Warrior Kid surfing by himself:

12 Comments

  1. Becky says:

    WK you are a trooper! Strongest, bravest, toughest kid I know! We follow your story and are always praying for you. Your strength and courage help us put things in perspective on the daily. We LOVE watching you surf and seeing that infectious smile in all those great photos on FB!

  2. Mike Rose says:

    No kid could have a better mom! much love to you and your family, fight on Warrior Kid.

  3. Katrina says:

    Warrior Mom your strength and his strength are incredible. You guys are phenomenal and I love you!!!

  4. Gabriela Haimes says:

    Keep up the good work Mama! You are an amazing Mom!!! Hang in there 🙂 Your boy is an amazing kid and you guys deserve the very best! Hugs and kisses to both of you xoxoxo

  5. Kathe van Hoften says:

    Wow you and WK are amazing and I am praying for you both! You are both a true inspiration.

  6. Cindy Viadella says:

    WK is amazing. So is his Mom! xoxo

  7. Karli says:

    Hang in there WK! Mattie can’t wait to visit you when you are feeling up to it. You can get through this, you too WM. Sunny days are ahead on that Paradise Island. Remember, God only gives to us that which we can handle. I know it isn’t fair sometimes, but there is a learning lesson in all of it somewhere. Argh!

  8. Hengi says:

    I love you and pray for you. My heart is broken.

  9. Michael Pinx says:

    What a courageous Mom & child! Good luck with the upcoming procedures.

  10. Kat Fisher says:

    WK, you are amazing, a hero and the strongest kid ever. Mom, you are inspiring, super woman and supported and loved. Sending prayers for all that is coming up.

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