The wait is over. Aidyn is off TPN and Omegaven! We had our CAIR clinic appointment on February 10th and we were given the go ahead to stop all IV fluids. I was shocked! I didn’t realize it would be cold turkey. IV Hydration is only as needed. Aidyn has been doing so well and it’s been almost three weeks. Last weekend he needed fluids, but that’s for another post (explained below). His weight probably hasn’t changed much since his weigh-in in Boston. It was 10.42 kg, or 22.9 lbs. We actually had to wait an extra month to find out Aidyn would be off TPN. The original Boston appointment was set for January 13th, but all flights were cancelled due to the Nor’easter. We scheduled for two weeks later, but after a lot of thought, we cancelled so we wouldn’t end up being stuck in Boston. Finally, another two weeks later, the appointment was set. Boy was it cold! Aidyn got to see the snow. He loves the outdoors, even when it’s full of snow and cold. If you can believe it, the next week, while we were back home and attending the appointment with the local GI doctor, Boston was hit again with more snow. Dr. Ursea expressed her happiness on how far Aidyn has come during our local appointment. She reminded me that Aidyn’s weight gain would be slow for now. The nutritionist said he only has to make up an extra 200 calories per day with the loss of TPN. Sounds easy, but when you have a toddler whose eating all day anyway, with a threshold for volume, it can be tricky. I have realized this new, wonderful change, this new leaf means another adventure. The learning and researching continues. This turn in the journey with Aidyn has made us happy and excited, yet it is a little scary. We will see how he does over the next month and if all goes well, Aidyn’s line will be pulled by Dr. Puder during our April visit! He’ll be two years old by then and ready for a new chapter.
Our goal for Aidyn is to increase his oral fluid intake and calorie consumption. We must make up for what Aidyn would have been getting from TPN and lipids. I am searching for calorie dense foods he can tolerate. As was mentioned in a previous post, Aidyn had both the skin prick and skin patch allergy testing done and was found to be sensitive to beef, cow’s milk and possibly wheat. A recent RAST test was done and I got an unofficial, over the phone result read by the nurse. It appears Aidyn may have sensitivities to peaches and bananas, too. Giving up beef is easy, but finding alternatives to cow’s milk and wheat that contain a lot of calories is difficult. Of course, Aidyn gets most of his calories from Elecare, an elemental formula. He is easily taking 21 – 23 ounces of that daily. Sometimes he may have a few ounces of goat’s milk or coconut milk, too. Here’s an example a typical day of eating, which includes supplements, vitamins and meds: 730 am – 120 - 150 mls (4 -5 oz)of Elecare, fish oil (1g of DHA/EPA), Ursodiol 930 am – breakfast: goat cheese, corn tortilla, avocado, ¼ - ½ tsp coconut oil, vitamins 12:30 pm – 120 mls Elecare 3:30 pm – 120 – 150 mls Elecare, 1 g fish oil 6:00 pm - dinner: rice with Braggs amino acids (like soy sauce), chicken sausage, toddler carrots, maybe fish oil 8:30 pm – 120 mls Elecare, ¼ - ½ tsp coconut oil, Ursodiol, Lovenox injection 11:30 pm – 150 mls Elecare
Aidyn also eats turkey, pork, deli meats, eggs, tomato or spaghetti sauce on pasta or rice and peas. He snacks in between with foods like: pasta, pretzels, potato chips, cookies, goat cheese, bread and tortillas. We stay away from most fruits and veggies because of the sugar and fiber contents. He does have a little applesauce with his enzymes, though. He eats gluten free foods, just like his sister (she was unofficially diagnosed gluten sensitive when she was two). I use Smart Balance original Light “butter” since it’s non-dairy and coconut oil in cooking. Before each Elecare drink, meal or snacks with protein or high fat, he is given Creon 6000, a pancreatic enzyme. He also drinks at least 8 ounces of oral rehydration solutions (ORS) in between. I do not use Pedialyte for ORS because it seems Aidyn doesn’t tolerate it well. I think it may be the sugar. Instead, I make his ORS from a recipe I found on the internet. It uses rice cereal in place of sugar. The recipe is as follows:
• 1/2 cup dry, precooked baby rice cereal • 2 cups water • 1/2 teaspoon salt
I combine the ingredients in a blender until well dissolved and smooth. It’s thick, but drinkable. It is refrigerated and thrown out after 24 hours. I think it works better for Aidyn since the rice absorbs slower than straight sugar.
I have been attending a monthly webinar series in nutrition for short bowel syndrome called Maximize Health, through Aidyn’s medical supply company. ThriveRx is great because they aren’t just a pharmacy providing medicines and supplies, but a company that provide educational nutritional support with the help of their pharmacists, nurses and dietitians. The series has been helpful in knowing what percentage of proteins, fats and carbohydrates belong in his diet.
Right now, the challenge is trying to separate Aidyn’s drinking from eating. He tends to want more to drink the later part of the day. I spread Aidyn’s drinking by offering one or two ounces at a time and distracting him with playing, books or walks (or whatever). Of course, that’s not always possible and he will drink a large amount and then “dump” a half hour later. I do offer him drinks when he’s not asking for it in an attempt to hydrate him before he’s thirsty. It will be easier as he gets older to make him understand that it’s best he drinks his fluids more slowly, especially when he can communicate to me better.
This video is from back in November, when he was trying Goat cheese for the first time. He ended up eating quite a bit after this video and it's one of his favorite foods.
A little over a week ago, I brought Aidyn to the surgeon’s office to have the stitches removed that we’re still firmly in place around his broviac. The hefty, knotted end of the stitches was cutting into his skin and the skin started weeping. As a result, granulation tissue started growing around his line. Sounds like a repeat of last year. Anyway, the surgeon prescribed Aidyn Keflex since the site looked infected. He said to use it for two days and call back in three to four days to see if the wound culture sample he took grows anything out. So we started the meds a week from last Wednesday and that Friday. In the meantime, Aidyn started showing signs of bacterial overgrowth over the weekend resulting in a lot of stool volume and getting dehydrated. I had to use IV fluids for the first time in 19 days since being off TPN. Monday, I was instructed to continue using the antibiotic since the wound culture came back positive with some staph cocci gram positive bacteria growing on it. The site looks better now, but the tissue is still growing.
Aidyn really had a hard time since he was stooling so much and then getting lots of gas once we restarted the antibiotics. He lost his appetite for a couple days and he couldn’t take the Elecare full strength at first. I am sure it’s because he was dealing with bacteria die off from the Keflex killing off the overgrowth in his gut. He is back to normal now, but we will see what happens in the next few days since he had his last dose of antibiotics yesterday morning. With this experience, it shows us what we may have to deal with when Aidyn gets sick and looses fluid without a central line. We may just have to hospitalize him for fluids in the future.
Dehydrated and off track.
When we had our Boston visit last month, I asked the resident surgeon on staff that day if he could remove the stitches. At that time, Aidyn had layers of Iodine covering the exit site on the line. Stella, our respite nurse, and I had been slowly getting those layers of Iodine off the line each week during dressing changes using hydrogen peroxide. With doing so the ends of the stitches around the line were able to move more freely.
Taken 1/07/11, before the we dissolved the iodine and stitched came off.
Anyway, the resident surgeon did not feel comfortable removing the stitches, but he did shorten a couple ends. Looking back, I think if the stitches were removed when I requested it, Aidyn probably wouldn’t have had the granulation tissue growing. Here I thought removing the layers of iodine from the broviac site would make it better, but really, it made things worse. I just have to leave those thoughts alone now. There’s a reason it happened this way, I just don’t know yet. Hopefully it will not become a problem anymore and that we can wait until next month when we go back to Boston to deal with the line. Hopefully it will come out.
