Wednesday, September 21, 2011

Surgery and Seizures

Monday was the big day..Peyton is FINALLY fixed!! Thankfully her surgery went according to plan.   The doctor said everything looked the way it was suppose to and they were able to successfully reattach her intestines.  I thought or at least I was hoping the worst was over..little did I know the surgery was going to be the easy part!  Her recovery has been brutal so far!!  I did NOT prepare myself for the pain she would be in.  Yes, they have been loading her up on pain killers, but she still has breakthrough pain.  At the moment I can’t think of anything worse than seeing my baby laying here in agony.  Even when the pain killers are doing their job, it still makes me sad to see her because she’s completely sedated and motionless.  It’s hard to believe that her motionless body is the same baby that just days ago was alert, looking around, and responding to my voice.  Now when she opens her eyes she just stares off into space not even noticing me standing there.  I keep trying to remind myself that this is only temporary and before I know it she will be back to my lively, curious, super observant, content little baby.
Unfortunately yesterday morning the day  after surgery Peyton had 2 seizures.  This was something I was completely not expecting, but than again I wasn’t expecting ANY of this!  Normally seeing this would of devastated me, but with everything I’ve been through these past almost 10 weeks it really didn’t phase me too much.  Yes I shed a couple tears upon witnessing this, but for the most part I’m pretty much numb to everything at the moment. 
The doctors were thinking and hoping the seizures were caused from her sodium and electrolyte levels dropping after her surgery.  Even though they believed they knew the cause of them it was still quite an intense day.  It seemed as if a different doctor was here every 5 minutes asking me every little detail about the seizures…I probably repeated the events at least 15 times.  Her arms and her legs shook very mildly, her eyes were moving around and she was drooling out of the side of her mouth. 

Luckily the nurses were able to stop them with a medication they explained was like a baby form of valium.  They ran tests including a head ultrasound to make sure the blood thinner she’s on wasn’t causing bleeding in her brain “THANK GOD it wasn’t” and they ordered an EEG.  The EEG consisted of 24 hour video monitoring of her and about 50 wires connected to her head to monitor her brain.   They also wanted to put her on anti-seizure medication, which is were my mommy instinct kicked in and I wouldn’t consent to because I didn’t think it was necessary.  Even after a neurologists and a neonatologist tried to explain to me that they highly recommended putting her on it I wasn’t convinced it was necessary.  I felt as though they had a possible cause for the seizures, which was the low sodium and electrolyte levels, and they were able to stop them with the baby valium.  The way I looked at it was if they were treating her by giving her more sodium AND they were treating her with the anti-seizure medication then how would we know which one was working to prevent any further seizures.  Thankfully, I feel like I made the right choice.  Her sodium levels are normal and she hasn’t had a seizure since yesterday morning!! 

Now I’m just waiting for her body to heal up so we can ease her off the pain medication and I can hold her in my arms again!!

Peyton recovering from her second surgery


  1. So glad that she is through the surgery. YOu are an awesome mama to stand up for what is right for Peyton and not allow doctors to continue to medicate if you feel is isn't necessary- go you! Cannot wait to see pictures of you holding your little girl. You have been through so much.... and it's amazing to hear how strong you are through your words. I continue to keep you and your family in my thoughts.

  2. Way to go with your mommy instincts!! It's a gift I tell ya. Glad to hear things are going well. I've been thinking and praying for you guys. Hope you get that sweet little one back in your arms soon. Hugs.



Related Posts with Thumbnails


17 months old (1) 20 week ultrasound pictures (1) 24 week ultrasound pictures (1) 2nd Annual Halloween Playdate (1) 30 weeks pregnant (1) 32 weeks (1) antibiotics (1) apples (1) applesauce (1) avoided a hospitalization (1) baby girl (2) Baby Girl Update (7) baby girl update (2) babysitting (1) belly pics (2) Big Boy Room (1) breastfeeding (1) breathe sticker (1) breathing treatments (2) bronx zoo (1) bulldozer (1) camera suggestions (1) Cereal (1) cf awareness video (1) cf cholocate chip cookies (1) cf mamas (1) cf medications (1) cf mommy skills (1) cf sucks (1) cf surgery (1) CFRI Conference San Francisco (1) chest cold (1) Christmas Morning 2010 (1) Christmas Photo Shoot (1) cirpro (1) Clinic Visit Update (3) Coupons (1) cpt (1) current medication and treatments (3) cvs (1) Cystic Fibrosis Masquerade Ball (1) date night with Rad (1) day trips (1) delta f 508 (1) dress up (1) Easter 2011 (2) Easter Egg Hunt (1) enzymes (5) exercise during pregnancy (1) extra treatments (1) favorite pics of 2010 (1) feeling defeated by cf (1) Finding out the cf dx for the SECOND TIME (1) fire trucks (1) First Birthday (1) flash back (1) Flash Me Friday (5) florida getaway (1) flovent (1) fun filled weekend (1) fun photos (1) fun times at the park (1) fun weekend photo's (1) Fundraiser (1) fundraisers (3) fundraising (2) georgia (1) getting rid of toys (1) Getting the amnio (1) good fortunes (1) great strides (3) halloween parade (1) healthy at last (1) helpful mealtime strategies (1) hiking (1) hospitalization (5) hospitalizations (1) How Radek got his name (1) hypertonic saline (1) hypertonic saline treatments (1) It's a Boy (1) it's a boy thing (1) jens wedding (1) July 2010 Clinic Visit (1) kind words (1) leaving for the beach (1) lessons learned (1) Light Up Shoes (1) loving toddler life (1) meconium illeus (1) minnesota (1) Mohonk Mountain House (1) monster jam (1) monster trucks (1) Months 1-12 (1) Musikfest (1) My Favorite Things (1) new cf clinic (1) new treatments (1) ng tube (1) nice weather (1) nicu (1) Nursery (2) October 09 (1) Our First Getaway (1) our trip to the pumpkin patch (4) outrun cf (1) outsmarting Radek (1) peyton is FINALLY home (1) Peyton's new hospital room (1) peytons 7 month pictures (1) Peytons newborn photo's (2) Peytons recovery (22) photo booth fun (2) photography contest (1) PICC line (1) pictures from the beach (1) Pictures from the NICU (1) playing in the snow (1) playing outside (1) please touch museum (2) plus side of treatments (1) Poop (1) pregnancy cravings (1) pseudomonas (4) pumpkins (2) punishment (1) rad and his cousin (1) Rad Meeting Peyton (1) Rad's trip to the Zoo (1) Radek and Santa (1) Radek Loves (1) radek loves to breathe logo (1) radek's current health status (14) Radek's Gene Mutation (1) Radek's Large Appetite (1) Radek's Sick :( (1) Radek's third hospital admission (1) Radeks Birthday (1) Radeks impression of our Mean Cat (1) Radeks list of demands (1) Radeks LOVE for Cars (1) Radeks WUS THAA phase (1) Rads first time using chopsticks (1) Rads Second Birthday Party (1) rainy day fun (1) raisins (1) recipe (1) salty skin (1) scuba diving (1) Setbacks (1) sickness (1) smoking (1) snacks (1) soap box derby (1) spring is right around the corner (1) stomach bug (1) swimming (1) synagis injections (3) team radek loves to breathe (1) thankful for cf (1) thanksgiving (1) the official cf dx of my unborn child (1) the possibilty my baby could have cystic fibrosis (1) the time out bench (1) Things we do for our kids (1) this time last year (1) three days to get better (1) tobi (1) trampoline to help clear mucus (1) vacation (1) Valentines Day (1) vest (1) weaned from the pacifier (1) Wordless Wednesday (8) worst week ever (1) Xopenex (1) Yo Gabba Gabba Live (2)

Total Pageviews