Day 16: Some Plans Change

Another day that went pretty darn well. I shed a few tears last night about our GI doctor leaving Oakland Children's and the thought of starting over and then something dawned on me. Why is Naomi still being followed by GI? She has no reflux, she has some constipation but pediatricians all over the world deal with that without GI consult, her weight is good, it is only the g-tube that keeps her with GI. If we don't have a g-tube we don't need GI and Naomi is proving that she no longer needs one, so I asked the nurse practitioner to come see me today. She and I talked and she agreed that Naomi doesn't need to keep being followed by GI and she totally understood my desire to not start over again, we talked about taking Naomi's tube out and she agreed that it could be done here. We discussed the two ways to do it. One is we simply pull the tube out, just like I would at home when I change it and we then cover it with a pressure dressing and allow it to close on it's own. The positives it involves no surgery, no anesthesia and is very quick and easy. The negatives, it leaves a bigger scar similar to a second belly button, it can take awhile to close and it occasionally reopens later and for some it never closes. The other option is to have a surgeon cut out the stoma and stitch the skin closed. The positives it leaves a very small scar, it doesn't reopen, it is fully closed right away. The negatives it involves general anesthesia and all the risks that come with it. After all this discussion I decided that unless James disagreed that we would go with the surgical route. It allows us to be done the quickest and with all the granulation tissue that Naomi has at first it wouldn't shock me if we would have to go this route eventually. The Nurse Practitioner was going to call the surgeons office here to see if there was any way that they could do it next week and I called our pediatrician to see how quickly it might be able to be done at home and we would talk again later. The Nurse Practitioner called and said the only time the surgeons here could do it was next Friday. As of right now we intend to stay until early next week and that would mean extending out stay but Naomi and I have nothing going on all of next week as we had cleared out schedules depending on how long the outpatient portion might last. After a long, very good, conversation with our pediatrician we decided we are going to stay and have it removed! She basically said, get that thing out! Naomi is doing great and doesn't need it, and it would be a lengthy process to get in with a surgeon there and let's remove it and move on. So in the morning I get to tell the nurse practitioner It's a go! We will go home without a feeding tube! Oh and I did discuss with my husband too, for those of you wondering and he was part of the decision made!

Daddy got to be in the driver's seat at most of the meals today. Breakfast was amusing as Naomi pulled some great stalling stunts. She showed daddy how well she can count.....a lot. She would have gone on and on had he not finally caught on to her creative stalling techniques. Not to worry when he figured out that one, she pulled another and another but we still go the meal done and she ate great! Other than the white milk, that is and will for awhile be a work in progress. I ditched daddy for morning snack and he and Naomi did it alone in the room. I didn't give him much choice but knew they needed some time to figure out meals themselves and hey the therapists did that to me the first day, all's fair when your kids have feeding challenges. At lunch daddy was dealing with car troubles so it was Naomi and I and one of the therapists. One thing I've been wanting to know is how is this going to work when Naomi transitions back home and to school so I ordered a meal that would closely resemble what I might send to school for lunch with all preferred foods and we went to the busy cafeteria and sat down with my lunch too. I portioned the food out onto her plate, sat it in front of her and said "Here's your lunch," and then gave no prompting after that to see what she would do. Well she proved what I already knew. Naomi can eat great but right now only with one on one prompting. She was done after eating a handful of Goldfish crackers and some diced peaches and hadn't drank a sip. She needs much more than that for lunch so I coached her through the rest of lunch and put talking to the school on my list of things to do. Afternoon snack was daddy and the therapist while I was off talking to the nurse practitioner. I think they did great and hopefully daddy is feeling more confident with coaching Naomi through meals.

The highlight of Naomi's day was in the afternoon in the playroom when Donald Duck and Caroline Sunshine (Tinka from Shake it Up) came to visit. Naomi was very excited to share her Shake it Up bunny from Build a Bear that she got for her Birthday with Caroline. Naomi also got to hang with the CHOC radio folks again this evening and her request this week was "the Itsy Bitsy Spider." I'll take spider's any day over a fighting 5 year old. I cannot believe that I haven't had food thrown at me or been hit, other than a missed high five, in four days.

A little aside for all you who have ever had your kid hospitalized, pay attention to the medications your child is given, Naomi gets periactin every night right before dinner. Tonight when they brought it they scanned her arm band and the med like they always do then handed me the med like I ask them to, so I could give it to her. I was just about to giver it to her when it struck me that the medicine was light blue. That wouldn't be alarming except that the periactin has been a yellow color every night that we've been here. I looked at the syringe the label from the pharmacy had her name on it and said periactin but I told the nurse she wouldn't take it without checking it out. The nurse called down to the pharmacy and the periactin the pharmacy has is yellow. They sent up a new dose and are looking into what was sent up instead. Mistakes happen so vigilance is key.

Day 16 17kg and nothing through the g-tube.