Week 1 with G-Tube

Jaron got a G-tube on Monday July 19th.  On the way to the hospital he was having cluster seizures called infantile spasms.  We called his neurologist and she ordered an EEG to be done after the G-tube placement.  They only took 45 minutes to put the tube in and called us in to the recovery room because the nurse was not able to calm him down.  He just wanted his mommy and a rocking chair!  We were admitted to the Pediatric floor for an overnight stay.  Back to our home away from home, we saw the same docs and nurses from last week.  Then the horrible part began...  I was trying so hard to be calm and trust that everything was going to be ok, but honestly I felt sick the whole night before and all day.   When we got to our room he was obviously in pain and when he's hurting it just escalates until he cannot calm down.  They were giving him morphine every 2 hours and I could tell it wasn't helping.  He basically just looked doped up and was still crying hard.
(Background: The neurologist prescribed him Ativan for breakthrough seizures when he first began having them.  It is a medication for anti-agitation and we have used a drop twice before when he was crying and couldn't be consoled.  I believe it kept us from going back to the ER on both occasions because when he is sick and gets really upset (screaming), he doesn't get enough oxygen and starts turning blue.  Another reason we are so thankful that my sister is a NICU nurse and can advise us on these issues.  So the medicine, it only takes a drip, makes him fall peacefully asleep.  But we are VERY selective about using it! I'm kind of a  medicine hypochondriac, I avoid even Ibuprophen unless I'm desperate.)
So our parental opinion/gut feeling was that he just needed some Ativan, not more morphine.  As we are learning, parent's aren't considered to know best in the hospital, we had to fight for it.  Actually Jaron fought for it.  The EEG tech came and started to prep him for the EEG but he was so upset she rescheduled for the next morning at 8:30, she knew there was no way she was going to get an accurate reading.  I called the neurologist on-call to see if they could order the Ativan but they said they needed a call from one of the hospital docs to request it.   Meanwhile, our nurse was calling the GI doctor and Brian heard her telling the doc that we just wanted more meds.  This is about 6 hours post-op and Jaron was not getting better, he was  much worse.  Long story made shorter, he got so stressed he had his worst seizure yet.  It was very scary and I was in the hallway yelling for some one to do something because my baby wasn't breathing!  He was turning blue, full-body stiffening, eyes rolling back, grunting, arching, not breathing, foaming at the mouth...  It was awful.  FINALLY, they brought Ativan.  It took 30 more minutes for him to slowly loosen his muscles and calm down.   If they won't listen to desperate parent's, they better listen to a baby coding!  Fortunately, it was time for the nurses to change over and we got a much better listening/understanding nurse for the night.  And, more importantly, our baby boy was sleeping calmly and peacefully.  And he has been fine ever since.  (He had Tylenol with codeine twice and was on regular Tylenol the rest of the week). They let us use an extra bed since there was not another child in our room, so Brian and I both got a bed and a decent night sleep.  The next morning, the sweet EEG tech came back and he calmly allowed her to hook him all up and do her test without a peep.  By 2 in the afternoon, we were on our way home.  2 out of 3 of our hospital stays have been traumatic.  Please pray for God's covering in the visits to come!

We are so thankful to be home, once again!  He was very sensitive the first few days, he didn't even want me to hold him but he seems to be adjusting well.  He was smiling and talking to the kids this morning as they danced around him and made funny noises!  I can't even express what great JOY he brings to our house!  He requires a lot of my time and attention and is often crying for reasons we do not know, but he is so precious and when he smiles, EVERYONE is excited!

Surgery day with NG tube in his nose

All wired up for the EEG, what a trooper!