Mason's G-tube

Mason finally got a G-tube! I say finally because he originally was supposed to have the surgery the first of November but then he got pneumonia...so we waited until he was all better and rescheduled for the end of November. 10 days before the scheduled surgery he got diagnosed with Infantile Spasms and got hospitalized.  He got put on the ACTH injections and we had to wait until 2 weeks after he was done with the injections to schedule surgery again! So 3 months later he finally got the surgery! We didn't want him to have surgery until he was healthy enough but boy was it a pain to have to keep rescheduling!
We had to be at Cleveland Clinic at 6 am so we had to leave our house at 5:15. My amazing friend Teri came over to our house at 5 so we wouldn't have to wake the girls up early.  She stayed at our house all morning and got the girls all ready for school and drove them around.  Thank you Teri!
I was pretty impressed with how efficiently everything ran when we got to CC at 6 am.  Mason's surgery was scheduled at 7:30 ( he couldn't have anything to eat after midnight) and I was expecting to be sitting around waiting forever like I have had to in the past when I've gotten surgery.  However, after getting all registered and getting our pager we were in pre-op at 6:30! The nurses checked Mason all out and asked questions, then the anesthesia team came in and went over more stuff. I was pretty anxious because a poor child in the room next to us was extremely upset (probably starving) and I was worried Mason would be so hungry he would start crazily crying too but he just slept in Casey's arms while we waited for everyone to come talk to us. At about 7:15 Dr. Seifarth (pediatric surgeon) arrived and went over what the surgery would entail. He said they would perform the surgery through endoscopy.  He would put a camera down Mason's throat and into his tummy to identify where the G-tube should be placed. Then he would make a small incision and place the G-tube. He said in about 5% of kids he cant place the tube through endoscopy so he has to go laproscopic through the belly button.  I handed Mason to an anesthesia resident and they sent Casey and me out to the waiting room. We got our first page at 8:00 saying that surgery started.  Our next page at about 8:30 said Dr. Seifarth couldn't place the tube endoscopically so he had to go through the belly button (of course). At about 9 Dr. Seifarth came out and talked to us. He said everything went well with the surgery but he had to put a lot of air in Mason's stomach (because its so small and never had much food at one time in it) to get it to reach the wall of the belly to be able to put the tube in. He couldn't get it far enough so he had to go through the belly button to see better.  He told us Mason will probably be in a lot of pain from all the air but he should be able to pass it and be fine.  We got to go back to the PACU to see Mason in recovery.  He was already awake and just looking around.  After about an hour in recovery we got transferred to our room where we would stay overnight.

 

 When we saw Mason after surgery he just wanted to stare at Casey and listen to him.  Its was so sweet.

 Mason in the PACU.  He got a few stiches in his belly button, and a few in his tummy to hold the stomach wall against the belly and to hold the g-tube in place.

 Our room ended up being the same exact room that we stayed in for a week when Mason got his NG tube! It was fun to see a lot of the same nurses who helped us 4 months before.
We could start feeding Mason through his G tube at 3 that afternoon, but he could only have 10ml an hour for 4 hours (he normally gets 100ml every 3 hours).  Then 20ml an hour for 4 hours. He handled the 10ml just fine but when the nurse switched him to 20ml he started throwing up. He kept retching even when he didn't have any food in his tummy.  He started to act like he was in a lot of pain so the nurse started giving him morphine which should have calmed him down and made him fall asleep but he just seemed more uncomfortable. At about midnight he started acting really uncomfortable. He was super stiff, his legs were straight out and his feet pointed and his arms straight out and his hands clenched.  He kept moving his head back and forth while he was crying... he did this for about 2 hours.  The nurse paged the hospital pediatrician to come check him out because she thought he might be having seizures. He had no idea what was going on so he ordered an EEG. The EEG techs came at 3 am and put the leads on Mason's head.  After being awake for about 6 hours Mason finally settled down and slept for about 20 minutes then he started doing the same thing ALL NIGHT LONG.

 

  I ended up sleeping through his cries because I was so exhausted.  At 7 am the surgery resident came and checked Mason out and said he looked extremely bloated and he'd send Dr. Seifarth up to see us when he was out of surgery.  Dr. Moosa came in too and said the EEG didn't show any new seizure activity, just his normal spasms and hypsarrhythmia. That was a relief! I had been a crazy mess at 3 am worried that Mason had new seizures and wondering if I made a horrible mistake subjecting him to surgery, I'm glad my worries weren't justified.
That morning Mason kept throwing up.  He still seemed very uncomfortable and it was so sad! I couldn't soothe him because when I held him it seemed to make him more uncomfortable. Later that morning Dr. Seifarth came and said we needed to stop all feeds and vent (leave his g-tube open to let air out) all day. He also said the morphine probably made him more bloated so he could only have tylenol from then on and he had to have gylcerin suppositories and tylenol suppositories every 4 hours to get his bowel going to push all that air out. He also said we couldn't leave that day since Mason wasn't tolerating feeds.  I was fine with that because I didn't want to go home and have Mason get dehydrated and end up having to go back to the hospital.

 

 Thankfully I learned from past hospital stays that snap jammies are a must in the hospital.  He had his IV coming out of his right foot, pulse ox on his left foot, tube coming out of the center and EKG monitor on his chest. Good thing he didn't really feel like moving around too much because he wouldn't be able to!

 

The next morning Mason was doing a lot better and Dr. Seifarth came in and said Mason could start feeds again but we would slowly have to get back to his normal amount.  He wouldn't get back up to his normal amounts until that night so I just decided to stay another night to make sure everything was good (and so I could have more time to have the nurses take care of Mason!).
After a long stay we ended up leaving on Thursday afternoon, and Mason has been doing really well. He's been tolerating his feeds and he seems so much happier without the NG tube, and less gaggy and raspy. I've been loving the G-tube already.  It's so much easier to give meds through, and I don't wake Mason up every time I hook up his feeds.  He hasn't seemed to be in any pain and the g-tube site is healing well.  Overall everything has been great! Now we get to focus on controlling those nasty seizures.

Dr. Seifarth took out Mason's stitches the last day we were at the hospital, but all those red dots were stitches. When Mason needs to eat we just hook up the extension into the button and feed him. When he's not eating we can unhook the extension and close up the button.  The button is really soft silicone and is really low profile so it doesn't stick up much.