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Sunday, September 4, 2011

G Tube Surgery

The day was finally here, Carter was scheduled to have a PEG, which is a G Tube placement.  It is a simpler surgery and less invasive overall, so we opted for that.  We went in on Friday around 11am and they took his stats (23 lbs and over 33 inches long; 8% in weight).  Then we changed him into his pajamas and waited in the pre op waiting room for a while.  Then the anaesthesiologist came and explained how she would be putting him under with a gas mask and she would be with him the entire time.  Then the doctor and his assistant came and told us to follow them.  Carter had been napping on me and then sort of woke up a little when I handed him over to the anaesthesiologist.  I was quite nervous and also sad.  I know this was the best option to help him gain weight and not aspirate, I just didn't know what to expect afterward.  I hoped my little guy would still be the same.

We waited in the other waiting room for about an hour or so when they called our name to have one of us go back.  I went back through the blue then the yellow doors to see him.  He was still asleep but I guess had woken up a little.  The nurse was keeping track of his heart rate, oxygen etc while she waited for him to wake up enough to go to the RTU (rapid treatment unit).  While I was there, Carter woke up a little but seemed extremely agitated.  She had to give him quite a bit of medicine to calm him down.  He has this tendency to hold his breath and go blue when he is in pain before he will cry it out.  It can be scary to watch, and he kept doing it that the nurse had to put a mask on him, which he didn't like.  To take I break,  I then switched with Chris because it was hard for me to watch.  I went to eat something, and then we switched again.

Finally, after some prodding and waiting (about 2 hours overall) Carter was awake and mostly pain free.  So then the nurse wheeled his bed-crib as we followed her to the RTU.  We were in room 106 and they started to set us up.  Carter wanted to sit up and he seemed pretty cheerful at this point.

When I first looked at the site, where his hole was or stoma as the nurses call it, it wasn't as gross as I had pictured.  I won't show you here, but it wasn't too bad.  Things had gone well, the actual incision only takes 7 minutes or so.  He played a little with his favorite toy while lounging, and we met our nurse and tech for the night.  They came in every few hours or so to check his stats and such.  They had regular IV fluid going, but then switched to PediaLite at about 6 pm through the G Tube.  I set it up so I could learn, and it wasn't too bad.  Since he seemed to tolerate it well, they switched to PediaSure.  They ran it all night long for 12 hours, at about an ounce (30 cc or ml) an hour.  We are starting out low so his stomach can tolerate it.  They did his meds around 9 pm, and Chris helped with that.  One parent had to stay overnight, so I asked Chris if he could.  I hadn't been sleeping well recently anyway, so I wanted to go home and get a decent night of rest.  Chris's parents and 1 sister Angela brought us dinner and visited for a bit.  My parents have been in St George and Lake Powell for quite a while, so they weren't able to be there for him.  They did call me from Powell that night to see how he was doing.

I went home and slept quite well, and came back in the morning about 8 am.  Chris was still sleep, but Carter was in his crib wriggling around.  He had had some pain during the night, so they had given him Loritab and such.  He seemed happy to see me, and his night feeding went well they said.  At about 10 am, they came in to start a bolus feed, which just means they do a feeding in like 45 min or so.  I helped hook it up, but I didn't yet know how to work the pump.  He did well, and it went in in about 40 min it was 4 ounces.  Then the wound nurse came in and helped us change his dressing and clean him with sterile water and q tips.  You do this once a day for the 1st 8 weeks.  She gave us some more training, then gave us our emergency kits.  Then the nurse came in and gave us final instructions, paperwork, and formula to get us through until I can get to WIC.  We gathered everything, asked our questions, and went home around noon.

We got home and soon had to get ready for another bolus feed; he has to be fed every 3 hours during the day so a total of 4 bolus feeds.  Well, we didn't have our pump yet, so we had to do it with just the big syringe.  Needless to say, it did not go well at all.  We hadn't actually done it before, just seen it in pamphlets or shows.  It started pouring in way too fast, and Carter started screaming from the gas and pain.  Before we could clamp the tube, it all came pouring back out all over our couch and Chris.  Not very fun.  Carter screamed off and on for a while while we tried to figure out what to do.  We kept the tube unclamped so the gas could escape and the food, but it wasn't coming out super fast.  We tried to take some out with a syringe, but not much came out.  The nurse was on the phone with us trying to help us, while we were trying to stay calm (not really).  We gave Carter some Loritab and he finally calmed down a little.  He was given a priesthood blessing, and in the meantime, I was chewing out the home health company to get our pump there pronto.

The delivery came, but I guess you need a nurse to help set it up and tell you how to use it.  I was pretty mad at this point at the miscommunication.  We didn't dare try the syringe again, so we tried giving Carter yogurt but he didn't seem hungry.  The nurse finally came about 8pm, so Carter hadn't eaten since 10 that morning.  She set it up, showed us how it works, and helped us do his 3 meds, and then set up his night feed.  She said she would come back in the morning to help with his first bolus feed, and then gave us their 24/7 number and left.  Well, we heard his monitor beep an hour later, it had stopped.  We tried calling the number, and while waiting to hear back, Chris figured it out.  The nurse had set it to run for just an hour instead of all night.  Well, it took them 40 min to call us back.  Good customer service?  I think not.  Not a good thing if I really need to talk to them.  The machine ran smoothly the rest of the night, and we woke up in time to turn it off.  It will shut off automatically so no air goes into his stomach.

The whole night time process of getting his meds in him and all the flushing of water and clamping and un-clamping took almost an hour.  I was pretty exhausted by the end of it, and frustrated.  Since Chris works nights, I will be doing this night routine all by myself.  I know things will get easier over time, but I am pretty scared about the whole thing.  I am worried that if I forget to clamp the food will go everywhere.  I am worried he will pull it out during the night (yikes!) or something.  It's such a big change and I'm feeling overwhelmed and scared.  I can't really get help from family because they need training too.  I hope we can get the hang of this, and quick.  I don't foresee us ever being able to go on dates again.  They have a backpack you can take around with you, but honestly, who wants to set up a feed and have to flush and clamp and unclamp in public?  Or at someone else's home?  He has to be hooked up to everything by his bedtime which is 8....I'm just feeling pretty down about the whole thing.  My mom has been out of town for almost a month and I miss her.  She will be home soon, and hopefully once I train her she can help me at night for a while.  We also need to switch some of his meds from tablets to liquids so it will go much smoother.  If you don't see us on Facebook or church for a'll know why.  I am tethered to my mini hospital at home.


  1. Heather, Heather, Heather! My heart aches for you! You, Chris and Carter have been through so much already! I wish your mom was there for you. Can I help you today or tomorrow at all? Call me if I can! (801) 298-0817. I put all of your names on the Temple Rolls ever time I am there! Love and hugs to you!

    Aunt Debbie

  2. Oh goodness Heather that just sounds so stressful! I'm so sorry you are going through such stress right now. Just remember what you were saying earlier,it will get better, it's just rough right now but it will get better. Good thing you are all so strong to get through it together! You are always in our prayers!

  3. Thanks you guys! Things are going a little more smoothly, but it's still alot of work.

  4. WOW! I haven't read your blog for awhile but I really needed to read it tonight..I seriously think you are an angel to have been blessed with this precious boy and the capability of raising and taking care of such an angel. I love that you are always smiling in your pictures and I think your little boy is seriously SO cute..he just has a spirit about him you can tell he brings so much joy to you and your family! I admire your dedication to Carter's needs and he is so blessed to have you as his mom. You need breaks so that's great that you have help from family! Your blog really helps me keep perspective and appreciate being a mom. Keep updating I love to read and learn more about 1p36. You are in my prayers this can't be easy but you can do it!