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| With Daddy after getting gowned up for surgery |
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| Being wheeled over to holding |
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| Last cuddles from Mommy before surgery |
Francis and I sat in the Day Surgery waiting room and tried to distract ourselves with magazines and such while we waited. Dr. Sigalet came in at 9:30am to report that surgery was over, and it all went well. Such a relief, such good news to hear. She had been taken to recovery and we would be called in about half hour or so to see her. They paged just after 10am, but only one of us was allowed into recovery. She had woken up and wasn't settling so they ask a parent to come in for comfort. I went in and she had already settled to sleep, so she didn't fuss for long. They had her on oxygen to maintain her sats. I held her hand and breathed her in and felt so grateful that it was all over and I didn't have to worry. After about 15 minutes I traded with Francis, I knew Daddy wanted to see his little one so I didn't want to keep him waiting. About 10 minutes later he came out and she was being wheeled over to her room on Unit 3. Our home away from home. Many nights spent in Unit 3 last year, here we are again. Being welcomed back by the kindest nurses who take such good care of Taylor.
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| In recovery |
She slept ever so peacefully for a long time. We held her hand, gave her kisses and just watched her. And of course took pictures of what Francis calls her second belly button.
Taylor actually had two procedures done, they also put in an IVAD (Implanted Vascular Access Device) that will be used for her monthly IVIG treatments. An IVAD is a small device placed under the skin and into a vein. Fluids, drugs, or blood/blood products can be given to your child through it as often as needed with less discomfort and less chance of infection than occurs with a traditional intravenous catheter (IV). Since the IVAD is placed under the skin, once it has healed, swimming and bathing is not an issue. To put it in, Dr. Sigalet made two incisions, the first to locate the vein into which the catheter was placed, and the second to make a pouch for the access portion of the catheter. Once her dressing is removed, the only thing you will see is a small "bump" under the skin where the portal is placed.When she goes in for her IVIG treatments, they will put a numbing cream at the site, then a special needle will be put through the skin into the IVAD to "access" it. Following the treatment, saline and Heparin solutions are used to flush the port. Heparin is a drug that keeps the blood from clotting in the catheter and blocking the IVAD. Once the Heparin has been flushed, the needle is taken out.
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| IVAD site on her chest |
For the g-tube part, the tube itself is actually passed down the throat and into the stomach. Then a small hole is made in her abdomen through to the inside of her stomach and they pull the tube out through the hole. The end of the tube that remains in her stomach has a mushroom cap that holds it in place against the wall of the inside of her stomach. They pull it snug from the outside and secure that end with a bolster to within a dime's width of her skin. So the tube sort of has a nut and bolt on each end that keeps it in place. It is not physically attached to the stomach wall or to the skin on the outside. Over the next 6 weeks that hole, or tunnel, going through her skin, fat, muscle and stomach will heal much like how the hole in your ear heals after getting your ears pierced.
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| G-tube coming out held in place with bolster |
Karen from Home Nutrition came to do some teaching in the afternoon. She went through all the skin issues associated with having a g-tube. There are 4 potential skin problems associated with having a g-tube; skin breakdown, infection, yeast, and granulation tissue (which by the way is really gross). Karen went through all the steps and treatments for each of these issues. And they can happen at any time, not just when you first get a g-tube. She also went over the two ports on the tube and how to connect the feeds, how to administer meds, flushing. Then she went over cleaning the site. We have to do this once a day, just using a cloth and warm water, cleaning the skin all the way around the hole, and then twist the tube a full 360 degrees, which is part of the healing process.
We also talked with Karen about a portable pump for feeding Taylor. The one we have right now (that we've been using for her NG tube feeds) attaches to a pole, it's big and heavy and extremely awkward to go out with. So feeds during car trips and outings are very difficult. She told us that they have very few of the portable Infinity pumps, and they are reserved for the kids that are on continuous feeds. Shortly after she left, Karen returned with an Infinity pump for us! She had gone to the office to find out the pump situation, discovered that they had 12 on hand, so she decided to give us one. This is amazing. So she sat down with us and went through how to use the pump, it's awesome. I talked with two friends on the weekend who said that the Infinity pump is life changing, the one thing in their little ones' complicated lives that is actually easy. We are so grateful that we got one. Behold, the BMW of feeding pumps...
When Taylor woke up from her long, peaceful sleep yesterday she was pretty unsettled. I think it was a combination of being really hungry, feeling really tender around the two surgery sites, and the anaesthetic wearing off. She was pretty wimpery and moany. Sad little cries.
She did manage to settle eventually and had a pretty good night. She woke up this morning and was pretty fussy on and off for a few hours. She finally settled soon after Francis got here, maybe she just needed to hear her Daddy. Karen returned to finish up our g-tube teaching. The first thing she went over was the emergency kit. And we better not ever have to use it, because that would mean the g-tube got pulled out. So there would be an open hole in Taylor's tummy spilling out stomach contents and likely blood. That is where sheer panic will take over. And it's a good thing that the emergency kit comes with detailed step by step instructions to put a new tube in, cause we'll be shaking all the way through it when it happens. But we inserted NG tubes every week, so surely we'll manage this too if need be!
Karen brought us one month of supplies and went through the order form with us so that we know how to place our monthly order through Home Nutrition. Same process as with the NG tube supplies, just different stuff. All covered. Love where we live. Francis is particularly happy about the feeding bags. We used to use them for 3 days. At the end of the first day you have to do a thorough bag clean which involved several steps, then it was put in the fridge overnight. Same on the second day. But on the third it was thrown out. With the new bags we get to throw it out every night, no evening clean anymore. Because of Taylor's ketogenic diet, after just one feed goes through the tubing has a grainy residue that sticks to the tubing, even after a rinse. So with the special diets, they now provide one bag per day. So that nighttime task is off the list...hmmmm what shall I replace that with Francis? Can't leave you off the hook that easy!
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