Sometimes it pays off...

One thing that special needs parents don't think about or realize initially is the amount of time they will spend on the phone, sending emails, going to appointments, making appointments and arguing with providers/insurance about countless things. Doctors suggest "get a case worker!"  It's a joke. A case worker is another call I need to answer, another person less informed than me that I need to inform and commonly, someone I'm giving advice to for things they weren't aware of.  It's not their fault.  Dealing with special needs is complicated. And confusing.  It's trial and error.  You get a name, you make a call, you wait for a call back, then they don't know the answer, and you wait.  Over, and over, and over.

We've dealt with some pretty annoying (damn right frustrating) things in the past when it comes to advocating for Mason's needs.  I don't want to share specifics about one of our most recent situations, because we live in a small community, but sometimes advocating for your child makes you a down. right. PAIN. IN. THE. ASS. to people that aren't equipped to deal with the amount of negotiating and influence about to come their way from this passionate mom. And sometimes my well intentions screw up something for someone else and its unintentional and I'm sorry for that.  But I won't stop doing it...because I'm making sure that Mason gets what he needs.

We just started watching the show Speechless.  I encourage everyone to check it out.  Its a glimpse into what its like to have to think about every detail of every life activity for one of your children.  I'm not saying that most moms don't do this anyway, but special needs has you talking about feeding times, BM's, weird behaviors and adapting equipment more than I care to share.  It's just different.  And the show shows a mom that takes this to the extreme but I can completely relate to her passion for advocating for the BEST for her child. 

So yes, there are frustrations.  But then there are AWESOME days like today where all of your calls, follow-up, questions, dealing with insurance, getting denied, getting new funding and then dealing with the distributor that gives you 12 hrs notice about delivery, (ahh!) to get you what you need. Today it was a new car seat for Mason.

First thing I noticed - its massive.  Much bigger than we anticipated.  Oh well.  He'll sit in it until he's 18.
Second thought - I'm literally going to look like I'm driving down the road with a ginormous blue gummy bear sitting in my back seat.

But fuck it - its awesome and I'm going to drive it around with pride.

Besides that, Mason has been spending more time with his Ipad at school and learning its tricks.  Thank goodness for good teachers that can find dedicated time to spend with him to work on it. Chris and I are so far behind on using it at home, but we're banking on getting some time with UWSP for 1hr/week therapy starting this winter so we can dedicate time to learn it and maximize it for Mason.

I figured I'd share two quick videos showing you all the app and do some shout-outs all at once! (randomly picked folks, Mason doesn't play favorites.)

Next post: All my thoughts and feedback about our "no kids getaway" to Boston recently!!

We're Baaaaaack! (for many reasons this time!)

For those new to this blog, this was our communication tool for many periods throughout Mason's life.  This was our avenue to communicate to family near and wide during some of the struggles we've faced with Mason's medical complications - from the early struggles of learning about his chromosomal deletion to gaining weight and his heart surgery, and later learning about his brain disorder.  We discontinued after the first two years and brought it back when we were undergoing the decision to implant a pump to better control his muscle spasticity.  Looking back at that, it seems like nothing.  Every time something hard came up, we persevered.  We learned, we grew and our support system of family and friends helped us through it. We are so, so happy to report that the last 2 years have been full of many amazing moments with our family!  Mason is happy, healthy, growing and learning so much!  Other than minor colds and infections, Mason is growing and is already an amazing 60 lbs and 50 inches tall!

I can't even recap all the amazing things that have happened the last two years so I'll jump right to the main reason we're bringing back the blog....

"When you wish upon a star...makes no difference who you are...."

We are blessed, humbled and excited to share with everyone the news that Mason is going to be the recipient of a "wish" through the Make a Wish Foundation.  I've shared this news on snapchat and facebook with many, but my goal with the blog is to share with you all the journey we're lucky enough to go on and the process we're going through to get to the point of this amazing trip.  I don't want to look back on this blog and only see the hard times, I want to be able to reflect on the amazing times and this is absolutely one of those.

The WISH is not the only thing we should be sharing!  We have so many awesome things we're doing these days and I want to share it all.  This is our way to reflect on our many, many blessings.  Also, in a strange way, this is relaxing to me.  I actually really enjoy writing this blog and sharing times like this with you.

Often times life gets busy and we forget to take time to reflect.  My hope for bringing the blog back is that I will inspire one of you, if not many of  you, to do the same.  Touch base with old friends.  Make plans and reflect on your experiences.  Share your joys and your hardships.  We're all in this world together...let's enjoy it together!  Let's reconnect and catch up!

Much love to all,
Jen

Third Visit's the Charm?

Well, here we are, back at the hospital for the 3rd time this summer.  It's entertaining to see the staff's faces when they see Chris and I walking the halls and say "Hi" with that look of "geesh, back again/what could it be now/should I stop and check in?"

Chris got here at 6:15 am to check Mason in.  I showed up around 8 am after dropping JJ off at daycare.  Mason went into surgery around 8:30 and surgery started at 9:10 am.  They skipped Versaid today (which makes Mason sleepy and groggy and less upset when wheeled into the O.R.) thinking it wasn't necessary with the child life specialist.  She stated he struggled a little bit with the anesthesia gas but gave in after just a few deep breaths.

*Quick Rant*
K & M - Remember that Child Life Specialist from the first visit - the one that doesn't take a hint when you aren't interested in the conversation and talks in such a high squeal that you want to rip your eyeballs out?  Well she's back.  She came to give me an update in the waiting room and repeated herself like 3 times and I made it clear I understood the information and she just stood their awkwardly like I should have something else to ask her or say.  Nope. Third time here. I'm an expert.
*Rant Over*

Mason's procedure was done about 11:30.  The neurosurgeon said there is a slightly higher risk of infection and believes he might have a slight seroma by the pump due to the scar tissue from before. Its important that we keep the binding on nice and tight all the time to reduce this liquid.

When we got up to PICU, Mason was quite fussy because he woke up with 3 strangers on him.  They called down to the waiting room and said "Send up the parents right away" and we were able to calm him as soon as we got in the room with the Ipad. #shocker.  He is resting comfortably now watching some shows on the Ipad.

Dr. Meilahn was in soon after as she was in the PICU anyway visiting another patient.  She said that the O.R. was incredibly meticulous about everything they did today.  If they would accidentally brush up against something they would change gloves.  I'm hopeful they were extra extra careful and we can make this our last visit this summer!

I've included a picture and a short video of what Mason is up to. Right after I finished taping him he giggled, so he must be doing ok. :)

Yay!

Mason's staph bacteria is not MRSA!  It's just regular staph bacteria and will be able to be treated with oral antibiotics. Mason will not be able to come home until tomorrow once they finish his IV antibiotics and get cleared by Dr. Meilahn.  Hopefully early tomorrow!

We hope that the oral antibiotics kick the infection for sure, and that it does not interfere with us being at the lake over the 4th. They are antsy to put the pump back in as soon as possible (2 weeks) but I am not ready.  Chris said he is and is willing to stay at the hospital the whole time.  That idea sounds okay to me - I hate the hospital and the person it turns me into. I am still needing to be convinced though...

Today I'm sure is lots of daddy/Mason cuddles and mommy/JJ cuddles. I'm ready to get things back to normal and have us all home at night.

Happy Sunday!!

Day 3 (It's Sunday, right?)

Mason slept great last night!  He fell asleep hard at 8:30 and didn't wake up until they came in for a blood draw at 3:45.  I managed to get him back to sleep at 4:30 and he slept until 5:30.

He's being his usual, spunky self. I wish we could take him home.  The IV antibiotics are still every 6 hours - 10, 4, 10 and 4. Mason has been peeing up a storm and keeps wetting the bed. We tried larger diapers and he still pees through those also.  He's due for a really good bath and a bed changing, even though he just had all that yesterday!

Mason had his IV moved yesterday, after it got pulled mostly out.  His right hand was pretty swollen after they removed it.  They moved it into his left hand.  Last night, he was thrashing around for an hour or so and managed to have the IV disconnect, which leaked blood all over the bed, me, and him.  It took awhile to get it rehooked and all cleaned up and by this time I was pretty crabby.  The response time during the day has been less than ideal...and I know they have other patients (especially patients without family here) so I'm not sure if they are short-staffed or what. I know that my patience level deteriorates quickly as well when they don't move as fast as I would. :)

Daddy is coming over later this morning (just in time for the Brewer game - fancy that) - and its going to be a mommy & JJ afternoon, hopefully including a nap!

Tomorrow we will know for sure what the antibiotic plan is and whether we get to take him home or not.  We're hoping he can go home on oral antibiotics so our 4th of July plans aren't affected.  I think 4 days at the lake is just what he needs. :)

Progress

Mason has not had Ativan since 4 am this morning and is still pretty sedated. They gave him Tylenol but not other pain meds.  He's been very sleepy which has allowed me to squeeze in a nap too.  Chris was able to sneak away to get some work done at work and will come back today and stay overnight.  (I think he likes being able to cuddle with Mason and watch the Brewers vs. being at home dealing with our almost 2 year old's energy.) :)

We will be here for sure through Sunday until we know what kind of bacteria we were dealing with.  The infection was mostly around the pump, initial results do not show that bacteria went into the spine at all.  The neurosurgeon that did the procedure stopped by and said something about IV antibiotics for 3 weeks.  The thing about IV drugs is we either need to be inpatient or have a PIC line put in and visit the clinic/hospital for each dose.  I'm hoping he was just talking about the extreme in a worst-case scenario but we'll have more answers by Sunday.

I'm looking forward to heading home later today and spending time with my little JJ who I haven't seen since Tuesday!  Hopefully Mason continues to progress and we can bring his little sis over for a visit tomorrow.

A special shout-out to Megan for your help with JJ! Thank you so much!!  Also thanks to Mom for coming and keeping me company today.

Backtrack - What Happened?

Mason had surgery on 6/10/14 to have the baclofen pump placed. The procedure went well, his recovery in the hospital was awesome and Mason was discharged on 6/13/14 with no need for antibiotics.

On 6/22/14, we had family over for a grill-out.  Mason spent most of the night doing what he does often - hanging out on the living room floor watching cartoons.  Mason started showing irritability that night once we picked him up - we noticed tightness in his legs again and general discomfort around the site of the pump (it was tender if we touched it, and quite warm.) We decided to give Mason another oral dose of baclofen because maybe he was just extra tight after the long weekend. Mason had great difficulties getting comfortable that night and his temp started to increase. We gave him some ibuprofen, and about 9:30 that night, decided we wanted to get him checked in Marshfield.  About 20 minutes on our way to the hospital, Mason's fever broke.  It was a Sunday night, we both had to work in the morning, and we made the decision to turn back home. We tried to make him comfortable at home and eventually, he did get a little sleep. He was clearly very tight all night, almost like the pump stopped working or something.

I called the docs first thing the next morning to explain what had happened. Mason had follow-up appts scheduled that afternoon with neurosurgery and physical medicine anyway, so we decided to just keep those.

Chris took him to those appointments.  They also noticed the redness and swelling and decided to put him on some antibiotics and send him home.  They said if he had any discharge from the incisions to come back in right away.  After his first dose of the antibiotics, Mason was back to normal.  Happy, no temp, acting his normal self.

On Tuesday, I headed out of town with a friend.  I checked in with Chris regularly to check on Mason and all reports were "yes, he's doing great...happy."

On Thursday, 6/26/14, Chris called to say that Megan noticed some puss around the incision site.  This alerted him and he asked her to send a picture.  Once Chris got the pic, he sent it to me and we both thought - crap.  Not good.

Chris called Marshfield Clinic and they said to bring him in right away.  By the time Chris got here (3 pm or so), the site had swollen as if there were a baseball under his skin.  Keep in mind that Chris checked the incision that morning before he left for work so the swelling/liquid all happened in a matter of 8 hours. When he got to Marshfield Clinic, he went to neurosurgery.  A physician's assistant took a 4 inch needle and injected it into his belly and drew out 2 oz of liquid. Chris described it as snot-colored.  I'm thankful I wasn't here for that. I would have thrown up and passed out.  They sent it for testing and once results came back (high WBC), Mason was admitted.

Once up in pediatrics, they got Chris to sign all the consents to get him into surgery around 7 pm.  At this point, I was still out of town.  Chris assured me that there was nothing I could do here while he was in surgery.

Mason came out of surgery a little after 8 pm - in a great deal of pain.  The meds they used last time that worked awesome (Fetanyl) weren't doing the trick and it took a good hour to find something to help him relax. They finally gave him Ativan to help him relax.  I got here just before midnight and Mason has been pretty drugged and resting since then.

During the surgery, they took a sample of Mason's spinal fluid. They are testing it to make sure that the bacteria did not get into his spinal fluid - which could be extremely dangerous.  We are waiting on results.  They also did a smear of the bacteria to find out exactly what bacteria caused this infection and we hope to get those results early this morning as well.  That will determine the course of treatment.

Chris has been amazing dealing with all of this.  Not only was he dealing with all the nurses/docs/questions but the nonstop texts from me wanting updates until I got here.  I have not been doing so great with this.  I go from high anxiety, to having an emotional breakdown, all in private of course - I don't let people see me cry. I think I had my first panic attack on the way to Marshfield last night as reality set in that "this is our life."  I'm just fucking sick of it all.  (and I apologize Dad for swearing) but this blog allows me to be me -  raw in my emotions and I'm not always going to be able to hide that. 

Chris mentioned having the surgery again in a month or so to have the pump put back in and I'm just not ready for that. I'm pissed.  I'm frustrated.  I don't like being here and even more, I hate seeing Mason like this.  This is not the life I want for him - constantly in and out of clinic visits and hospital stays.  I am very aware that there are people that deal with much more than we do but I don't think that matters to me right now.

Thank you everyone for dealing with my emotions outpouring on here.  We really, really do appreciate all of your love and support and know that you are praying for him and wishing him the best.  Please don't take this post as a pity-party in any way...I just want it to be honest and real.

(Hugs)