Jaron wanted to show off his G-tube!

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!

Day 4 at Emanuel

The result of the pH probe study is that the acid reflux medicine he is already taking is helping control the acidity.  The GI doctor is recommending we try Prilosec instead of Prevacid and remove Zantac from the medication lineup.  The next thing to try is Regalin, which helps the stomach empty quicker to hopefully alleviate the pain he is still having during and after his feeds.  The GI doctor also determined that he will need the least invasive gastrostomy tube, which can be done in a small procedure with a one night hospital recovery.  We are scheduled for that procedure on Monday at noon.  Hopefully we will be released to go home tomorrow so that we can all get some much needed rest this weekend before the tube goes in.  He will go home for now with a nasogastric tube which he has been using since Monday evening.  I will need to have the pump sent to my house and learn how to run it before we leave.  I believe it is the same pump we will use for the g-tube feedings as well.  It's going to be a whole new world.  We have been reassured by many different people that feeding will go much smoother and that a g-tube is no big deal.  I am looking forward to not having the stress of force feeding him by mouth especially when he really doesn't want it and he chokes on it or cries.  I just want him to eat safely and grow!  Thanks for your prayers!

quick hospital update

It's late and the baby is sleeping so this should be quick.  Turns out he was definitely aspirating, it was very obvious on the x-ray.  They made some phone calls and sent us upstairs to the Pediatric floor of Emanuel Hospital to be admitted.  He got a nasogastric tube which is a temporary source to feed him with a tube in his nose that leads down to his stomach.  They are doing different tests to determine the severity of his acid reflux.  There are several different options which I'm too tired to explain but I will let you know what they decide and when they plan to do it when I know.  For now we sit and wait and try to get him to gain weight.  The kids came to visit today.  They have a neat sibling hospital visit program.  The kids got bags of hospital stuff (gloves, face mask, hospital bracelet, bandaid, syringe), a cloth doll with a little gown on, a beanie baby, and then a hospital play set (like you can get at Toys R' Us).  It was great to show them Jaron's room and see that he's ok.  They made cards with their Auntie Katy so we taped them all over his hospital crib!  We walked around the Children's Garden at the center of the hospital and they even got to make little butterfly masks.  It was great to have them here!  I'm lucky to have a NICU nurse for a sister! Melissa spent the night with Jaron last night so that I could get a good night sleep at home and wake up to the kids this morning!  We are so blessed in the midst of all these challenges!

Because Jaron is not gaining weight and he has had this cough for 4 weeks (possibly due to aspiration), the doctor's are starting to talk about a g-tube (=A gastrostomy tube that leads directly into the stomach through the abdomen to feed and give medications).  He will have a swallow study on Monday to determine if he is aspirating his formula.  Basically, they will put a substance in his formula that shows contrast on an x-ray machine.  While he is drinking his bottle, a speech pathologist and x-ray tech will watch where inside his body the formula travels.  If it goes down the proper pipe then great, but if some of it gets down his breathing tube and into his lungs then it is called aspiration.  If he is aspirating at all, they will admit him into the hospital immediately and prepare to put in a g-tube within the week.  Hopefully this is not the problem and we can continue to feed him by mouth.  But if he doesn't start taking more at each feeding and gaining weight, we will see a GI doctor and consider the g-tube anyways.  This is very scary for Brian and I to even consider but we want to do what is best for Jaron.  

Also, tomorrow Jaron is going to be sedated to get an MRI.  This will give the neurologist a better idea of how severe of lissencephaly (smooth brain) he has.  We'll let you know how these next few appointments go...

We had a great time at the family beach cabin near Pacific City!  We were so excited to take Jaron to check out the sand for the first time!  I think he liked it :)  It was a very restful, 3 day, family getaway with grandparent's, great grandparent's, auntie and cousin.  We had a campfire with s'mores and even went to climb and jump down the giant sand dune.  Jaron stayed with Papa at the cabin.  It was so funny to watch my little 4 and 3 year old girls climb that huge "mountain"!  Hannah, especially, got some wide-eyed looks from people at the top.  She's a mere 27 pounds so she looks too tiny for such a feat!  On our way out of town, Jaron's pediatrician called to tell us we'd been given the wrong acid reflux medicine (which explained his aversion to eating and increased crying/arching) so we had the new one called in to Lincoln City.  A minor hiccup in our otherwise great vacation!