Teaching

Well it's been quite a day!

Unfortunately Taylor had another rough night, up crying from just after midnight to 2am, and then again quite early in the morning. The nurse vented her tube and quite a bit of air came out so I think her tummy was just full of gas and she was uncomfortable. I'll have to remember that trick next time it happens. She finally pooped on her own, so hopefully the continuing constipation issue is beginning to resolve itself.

Taylor's ketogenic dietician came by this morning, so I shared with her all the aspiration stuff from yesterday. I did feel better this morning after my emotional night. She helped me out with some questions to ask:

1. Could Taylor's swallowing have been affected by the tube, therefore affecting the result of the study, and thus the aspiration?
2. How clinically significant is this aspiration when she has no history of aspiration pneumonias?
3. Could her newly increased seizure activity play a role in her current ability to swallow?

She was very helpful in my feeling much better about the outlook of all of this. There is a carb-free thickener that we could use to thicken up her fluids, so it would not interfere with the ketogenic diet. That is good news. This could possibly be as simple as thickening up her formula, which will have to be done gradually. Coming home with a tube is still our reality, but maybe it's just going to be for a short term.

Rounds didn't really have much new on the list, phenobarbitol started last night for the seizures, and a follow up EEG to happen Friday. Taylor's ketones were way too low this morning (1.5 when they should be over 3, ideally in the 4's). In discussion over rounds they discovered that the phenobarb had been ordered as a liquid, which is a syrupy, liquid full of sugar, and therefore NOT ketogenic diet friendly. Crap. So they corrected the order and tonight it was sent as tablets to be crushed and mixed with water. Only other thing of note from rounds was that what has to happen before we can be discharged, is parent teaching with the NG tube.

I had dodged that bullet for 12 days since the tube first went in, but today it caught up with me. We know now that we are definitely coming home with a tube. For how long we don't know, but indeed we are. So the time to learn how to remove it, put it in, and use it has arrived.

My Dad was here visiting when the nurse from Home Nutrition came down to do the first of three teaching sessions. She told me that the last part of today's teaching was to have me remove Taylor's tube and put a new one in. O.M.G. I asked her if she brought a bottle of wine for me to consume after I did this. Sadly, her answer was no.

So she went through the steps with me:

1. Wash hands
2. Cut Duoderm in a rounded teardrop shape about the length of your thumb and apply to cheek with narrow end just under the nostril
3. Cut Tegaderm in half lengthwise
4. Measure and mark tube - Place the end of the tube on the tip of the nose and measure to the ear lobe and then to the midpoint between the breastbone and the belly button. Make a small mark on the tube with a red Sharpie marker. Do it again to make sure your mark is in the same place, if so then make a solid mark around the tube with the Sharpie.
5. Bundle baby - Using a blanket, tightly swaddle with arms tucked in to her sides
6. Remove old tube - Peel the tape and duoderm off all together starting at the outside edge farthest from the nose, once it is all off and the tube is free, pull the entire length straight out with one quick motion.
7. Lubricate tube - Close the cap on the NG tube, and cover the tip with water-soluble lubricant.
8. Insert tube and tape - With child lying on her back and head straight, gently insert the tip of the tube up and angled in, then lift arm and start pushing the tubing in quickly (while holding your breath because at this point you will be FREAKING OUT). If the tube curls in the mouth, don't be alarmed (yeah, whatever!), just pull the tube out and start again. If you are not able to forward the tube, do not force. Pull back slightly and try to insert the tube again. When the red marker line reaches the nostril, the tip of the tube should be in the stomach (and you can breathe again). Have partner hold in place at nostril and across cheek while you tape it in place over the duoderm.
9. Check placement - Withdraw fluid from the stomach by attaching a 30mL syringe to the end of the tube. Using a 30mL syringe is important because if you use a smaller one it could collapse the tube. If you withdraw stomach contents, it means the tube is in the stomach, and placement is good. Gently inject the stomach contents back into the tube as they contain important body fluids and enzymes that your child needs. Flush with 5mL water to clear the tube. If you are not able to withdraw any stomach contents, try again lying on left or right side or sitting up. If still unable, inject 5mL of air quickly into the tube and try again. If you are still unable to withdraw fluid from the stomach, remove NG tube, reinsert and check placement.
10. Cuddle baby (**to apologize for the trauma that you have just put her though!!!!**)
11. Coil tube and tape to clothes behind the shoulder (this is to avoid chance of strangulation)
12. Enjoy a LARGE alcoholic beverage (okay I put this one in myself 'cause I'm sure it would help)

Happy to report......I....DID....IT!!!! And I have a witness, Dad was here to back me, thanks for sticking around for the excitement! Francis...study up on these steps, tomorrow it's your turn!

12 days ago I thought, "there's no way in hell I'm going to put one of those into her". But today I did it. I was shaking like a leaf when it was over and cried, but I did it. Yay for me. Oh the things I never in a million years thought I would learn and do, little Taylor is teaching me along the way. You've brought out strength in me little girl that I didn't realize I had. I love you so very much.

After that was over Taylor's Physiotherapist Jeanette, and her Occupational Therapist Andrea came to our room and took us down to the sensory room for half an hour. Taylor was surrounded by all sorts of different lights, a very nice distraction after subjecting her to such trauma with the tube change, and a nice change of scene from the hospital room. Thanks you two for the little break!

The inpatient OT didn't make it up to see me until 4pm, so we have set a meeting up for 2:30pm tomorrow. I'm a little disappointed that a feeding plan hasn't been organized yet, but it was still a productive day with the teaching and all.

Mom arrived tonight with her arms full. She found some toddler size winter sleepers at Costco, very exciting! Cinnamon buns for breakfast, mmmmm. More laundry all clean and folded. Turkey soup for tomorrow. Banana bread, trail mix, tea bags, sugar and a teacup. A bag of my favorite oatmeal cookies from the bakery at Sobeys. Cutlery, cause I can never find forks around here. Beef stew for her and I to have for supper and a stainless steel water bottle filled up with......RED WINE!!!! I'm sure we violated some sort of hospital policy with that one. At any rate, we enjoyed a delicious supper here in the room complete with a paper cup of red wine. Lovely!