This is the story of Whitney getting her G-tube. I will try to make it basic and to the point.
Wednesday morning we feed her Neocate Jr. Unflavored formula till 1 AM. From 1 to 6 AM she got a slow drip of clear Pedialyte. We gave her the normal Prevacid and Sildenafil at 6 AM as instructed by the cardiac anesthesiologist the night before. We were all packed the night before with what ended up to be WAY to much stuff! We got to Phoenix Children's Hospital around 7:30 AM to check in. I signed a few papers, and the Dr.'s and nurses reviewed the day's plan. The resident surgeon (still in school) said they would leave the NG tube in and use that to feed her at first. Then her awesome surgeon said that they are going to take the NG tube out and just feed and give meds through the new G-tube. So after we all made sure we were on the same page they took her back. I was not able to go to the O.R. with her like I did when they did her cardiac catherization a few months ago at St. Joe's Hospital.
Driving around in a car while we waited.
Whitney must have felt safer in the car because she did not cry.
All smiles before they took her back.
Then my mom, my husband, and I waited in the crowded waiting room. They took her back at around 9 AM (right on schedule). The surgery it self would only take 30 minutes and getting her asleep and all set up another 30 minutes. I assume both of those thing took longer then they expected because she was in there for two and a half hours. Some of that time went to doing an echo. I requested they do one then because she was "due" for one and it's so much easier asleep. I actually got that idea from another mom's blog! (Whitney has a tiny arterial septal defect (ASD) and a Patent ductus arteriosus (PDA) and a small left pulmonary artery from her birth defect). So around 10:30 AM the surgeon came out and said everything went great! She did it laparoscopicly through her belly button (eww). Put a camera in and found a really good spot. She also saw that some of Whitney's intestines were stuck to each other but that that is nothing to worry about. So the surgeon walked us up to the floor where Whitney will stay and we waited in that waiting room. When they were all done with her and she was settled in her room waking up they called us to back there!
First picture of her G-tube! It's a Mic-key, 14 french (diameter) 1.5 (length)
They kept gauze around the whole time. It did bleed and they would change the gauze, and it seemed like every nurse would put it on differently! Whitney did pretty good, she was druged up and cranky. Around 4 PM they started her on a slow drip of Pedialyte till 9 PM. Then we took her for a long ride around the floor in the wagon, she even walked a little but was really wobbly! She really liked to ride in the wagon and get away from her crib. We pretty much held her all day between the three of us. At 10 PM they started her on a slow drip of Neocate Jr. till 6 AM. They kept her on Morphine that day. She did not throw up so that was really good! Everytime the nurse would clean it or start a meal or give a medicine, we watched her and then did it our selves. You need to do this so you can learn quicker and get different opinions from the different nurses, when they feel your comfortable doing it your self they will let you go home sooner. My awesome friend came to visit us that evening after my mom went home. She brought us a ton of good food! My husband ended up staying the night with me. :)
She loved the wagon but still would not let go of her pacifier!
Trying to entertain/disract her with favorite toys and movies.
The next day. These aren't the best pictures of her g-tube but like I said, they had it covered with gauze. They weened her off the morphine and now gave her hydrocodone (Vicoden) via g-tube. It's good to get her weened of it soon that she doesn't need her IV so she can go home sooner! She mostly just laid around that day (what else can you do!?). She sleept on her daddy for 3 or 4 hours and also on me for a while. Then Gramma came and she slept with her till we were able to go home! Basically, after much disscusion, they decided that they wanted to see 2 feeds/meals. So they kept with our home schedule except gave her less volume... 60 mL's for 2 hours = 120mls = to 4 oz. They did that twice (every 2 hours) and she didn't throw up! I will slowly increase it at home. Whitney has had an NG Tube for 9 months you know, so for us the G-tube was easy to learn. You just have to lock the extension on to the button and hook up the bag of formula. Flush it at the end of each meal. Everything was good with Whitney and they let us go home the next afternoon! We were already set up with the home nutrition company and with no new meds, discharge was pretty quick.
I packed all of her feeding supplies like the pump, extra bags, bottles of water, and formula ( I needed them last time for her cardiac cath) but these nurses and Dr. used there own, and that was fine by me! I packed Whitney's medications, lots of outfits, shoes, socks, and hair bow's for her and a whole bag of toys! The hospital had most of that stuff and we kept her in the hospital gown till it was time to go home. We knew that this trip/hospital stay would be covered by insurance because we meet our deductible a while ago. That is why we used their medications and formula. I brought entertainment for myself like books, sudoku, and music but didn't use them because I was Too preocupied and taking care of my daughter and learning and reading about the G-tube! I had to bring my own pillow and blanket though (hospital's is thin and scratchy) if I were to get any sleep.
Whitney preferred to sit in the big comfy chair rather than her crib
All she was hooked up to was the G-tube and IV. All the other wires are just monitors!
Kangaroo Joey pump and 500 mL bag
Pulse Oximeter
After all is said and done it really wasn't too bad! It wasn't fun but I believe it will be worth it in the long run. Just make sure you do a ton of research if your thinking about getting the G-tube. It really helped me to read other blogs about it. There are tons of "pages" on facebook with mom's or dad's that will answer any question about tubes and feedings. I was able to prepare for a couple of months. This was my decision, I weighed the pros and cons. Please let me know if you have any questions or concerns! But of course every child and experience is different, I have learned!
