Sunday, December 4, 2011

Skyler is doing so well.  Luckily we caught the infection early before it made its way into his bloodstream.  It was just localized in the tissue surrounding the sites.  I thought the redness what just a reaction to the steri strips that they placed on there, kind of like the reaction he had when they took out his chest tube.  I wouldnt have taken him in if he hadnt have woken up that morning with the whole left side of his face completely swollen.  I knew right then something was wrong and took him to the E.R.  They confirmed that it was infected and that it would have to be removed immediately.  They also did an ultrasound of the area and his neck and found a blood clot on the line. Thats what was causing his face to swell.  But with them removing the line they said that would most likely take care of the blood clot without having to use blood thinners.  A couple hours later Skyler was back in the operating room again to remove the brand new port. 

I sat in the waiting room and bawled.  Its the worst feeling to know that the decision you made is what's causing your child pain.  I beat myself up for awhile but then I realized that if I had to do it all over again (not knowing the outcome of course) I wouldnt change a thing.  I did my homework and had consults with multiple doctors, and the surgeon and have talked to many moms of kids with ports.  I also couldnt keep torturing child with dressing changes every four days if I had the option not to.  I also wanted to give him the best opportunity of living as normally as he can these next three years and be able to bath and swim again.  Obviously it didnt turned out how I wanted but thats one thing I have learned in this world, nothing is for certain.  You have to make the best rational decision you can and pray for the best.

Skyler woke up from this surgery in a lot less pain this time.  He actually didnt need any sort of pain medicine for two days.  They admitted him to ICS and started two strong IV antibiotics.  This admission was so different than the others that we have had.  Since the infection wasnt in his bloodstream he wasnt having any fevers and was doing so well.  For some reason I wasnt worried, I had a calm feeling the whole time (which is something so new to me in the hospital) and we just had fun.  We saw nurses that we love and I was able to talk with other cancer moms that I have come to know.  We played hide n seek and made crafts.  The only hard part was with no line in his body that meant they had to start an IV in his hand.  He actually had three started because they kept going bad.  He also had to wake up to a finger poke every morning so they could do his labs.  By the end, the pokes were not a big deal to him anymore.  He said that he would much rather get pokes everyday than have a line in his body.  He thought it was so cool that he didnt have any sort of central line and asked me "So does this mean that Im a normal kid now?" 

They were able to send us home on oral antibiotics so he didnt have to stay for a week in ICS for IV antibiotics.  He has a drain in his chest and gauze still packed in there that I have to pull out everyday.  Each morning I have to pull out a half inch of the gauze and put new bandages on.  Tomorrow they will take the drain out and place a picc line in his arm because he has an LP and chemo the next day.  He has had plenty of piccs before but has never come home with one so it will take some getting used to.  We have learned to adjust to new things though and make the most out of what we have been dealt.  They will place the picc under fluoroscopy so they can watch on a screen where they are placing it.  An IV team could actually come in and do it in RTU with his LP, but with his history we decided to do it this way.  Its been a long week but it hasnt been that bad.  Im used to infections making him deathly sick so this infection has been ok to deal with.  That seems strange to say but I have realized that it could always be worse.  Thank you so much for all the kind words and concern, it means so much to me. I am so lucky to have such amazing family and friends!!

That is the drain in his chest and the gauze I have to pull out.  He now has some more battle wounds to add the many he already has.  Looks yucky huh?

I also want to say congratulations to my brother and his beautiful wife who had a baby the same day Skyler got his port out.  She had to undergo an emergency C-Section and the baby will have to remain in the NICU for a couple weeks because he was very early but they are both doing really well.  Jen and Skyler were actually in surgery at the same was a crazy day.  I am so happy for them and am so excited for this new addition to the family.  Little Ashton is absolutely perfect and so adorable!


*suzie said...


i am unbelievably relieved to hear that skyler is doing better and recouping! My goodness, that kid is seriously my hero, no kidding. congrations to your bro and sis in law on their new baby!

Erin said...

I'm so happy and relieved to hear that things are going well and that you're at home again. Skyler is one brave kid! It's so great that you caught the infection so quickly!!


Anonymous said...

Ya,, so glad to hear that he is doing so well,, you and Skyler are the bravest people I have ever known. You are doing a wonderful job!!! keep fighting!!

zachs mom

susi and adam said...

Crystal.... you could totally be a nurse and you would be an incredibly good one... I can't believe all that you are able to do for Skyler. So glad it wasn't as bad as it could have been. He sure is a miracle in so many ways! By the way I posted on your sister in laws blog... definitely know some of what she is feeling!

Jen Beckstrand said...

I feel kinda famous being on your blog! jk Such a crazy day for all of us! So crazy that we were in surgery at the same time too. Means that Ashton and Skyler are meant to be buddies! Thank you for your strength and example. I think about you all the time, and don't know how you do it day in and day out. You are amazing!

Eisha said...

such a roller coaster! :(

Margaret said...

I have been following your blog a year and I wanted to give you a link to a post I wrote about Skyler. Both of you amaze me. I know I haven't comment before but I have been reading and praying for your son.