Aidyn is officially a toddler! He turned one year old on April 14th. We had a little family party for him. He was a very good sport with the party hat. A couple of weeks later, we celebrated again with the grandparents, uncle and cousins.
According to his NICU doctors, Aidyn either would have died by now or would not be living a good quality of life. They couldn’t be more wrong. Aidyn has been a survivor from the beginning and has the quality of life any child could have under normal circumstances. It is most likely he will never need a small bowel transplant; he is just doing extremely well! Aidyn is cruising all over, gets into everything, and is fully interested in food and eating. He loves music and sways to the beat. Baby talk and singing are heard throughout the house. He is full of energy and is just a happy child. One day, this life of tubes, dressing changes and Lovenox injections will be a distant memory.
Wearing a buggy mask.
First Haircut by Mom. Not bad.
Enjoying a snack. Mmmmmm.At Aidyn’s appointment with his AZ G.I. doctor last month, it was decided we keep Aidyn’s TPN the same so he could get over what had been bothering him. The Dr. finally diagnosed Aidyn’s tummy troubles (although we had been waiting to hear back on some stool studies done a couple weeks before). Just as I suspected, he had bacterial overgrowth. It’s possible picked up a virus while traveling to Boston the end of March. The signs: smelly and loud gas, gurgling stomach noises, weird breath, more loose dirty diapers and a dip in appetite. Bacterial overgrowth is common among people with short bowel syndrome especially those who have no ileocecal valve, like Aidyn. This valve is between the small and large intestines. It keeps the bacteria from the large intestine from backing up into the small intestine, where the body’s immune system is. In the case of bacterial overgrowth, it overtakes the beneficial bacteria in the small intestine. Typically, for a person with a normal gut, it can be kept it in check by adding probiotics to the diet, but it is recommended we not use probiotics for Aidyn until he has his central line removed. Even the good bacteria may possibly migrate into the blood stream, potentially causing a line infection.
Aidyn was prescribed the antibiotic Flagyl and symptoms improved right away. He did have a side effect, watery stools. After 4 days I stopped the antibiotic. Aidyn was clearly getting dehydrated. I called Dr. Ursea’s office and left a message for the nurse and in the meantime, I called Danielle, Dr. Puder’s nurse in Boston. She offered to help get more saline hydration bags sent for Aidyn but wanted to wait until Dr. Ursea’s office responded. The office did respond and agreed to stop the antibiotics, but didn’t address the hydration. During the call, I explained to the nurse my concern; I expected another call back about arranging for more saline. No call. I ended up emailing Danielle at 3am after Aidyn still had a dry diaper (this, after his 7th hour of TPN infusion). Danielle called first thing in the morning and told me she arranged for hydration bags to be sent with the home supply company. We all were definitely disappointed that the local G.I. office failed to help. After Joseph called Dr. Ursea’s office, we figured out there was a breakdown in communication between the staff and doctors. Dr. Ursea called me personally from her cell phone after Joseph called. She apologized and said she would do what she could to improve the way things were handled. Thank God for Children’s Hospital Boston. They have always been there for us and always come through for Aidyn.
A week from last Friday we returned from our CAIR appointment in Boston. As usual, Aidyn made the staff happy with his good weight gain, overall health and activity levels. He weighed 19 lbs 13 ounces and measured 72.6 cm. We talked about how Aidyn doesn’t like baby foods as much or baby cereals at all. We will continue to add more foods to his diet and also introducing milk solids to see if he tolerates it. They recommended Aidyn reduce his TPN to 4 nights a week at the same volume of 625ml 12 hours a night and Omegaven 4 nights a week increased to 90 mls. His IV fluids will be 3 days a week, lowered to 500 mls a night. The team feel he should consume more fluids with the drop in IV fluid volume and also eat more to make up for the drop in TPN.
Taking the train and a walk to Children's Hospital Boston.As I said, Aidyn is very interested in what we eat. He’s eating diced pears, peas, diced carrots and green beans, rice bread, rice crackers, chicken, sweet potatoes, potatoes, rice and avocado. He loves banana, but doesn’t tolerate it well. Now that summer is around the corner, we have introduced pedialyte throughout the day. He still drinks from a bottle. Getting him to transition to a cup is challenging. We are trying sippy cups, but all he wants to do is bite them, as he is still teething. He is getting a top “molar” in, so there’s tons of gnawing and drooling.
We did have another visit with Dr. Ursea this past Tuesday. She was overly attentive, probably because of the communication mishap earlier in this month. The nutritionist and the doctor were hesitant to reduce Aidyn’s TPN since his weight gain was slightly under the goal, but they know Boston is managing Aidyn’s care and wrote the new orders anyway. I am glad they complied. If it appears Aidyn isn’t gaining enough weight, it’s easy to add the TPN night back in. Joseph and I are willing to go for it. The doctors here in AZ and in Boston wean TPN in different ways. In AZ, volume is reduced first, and then they remove TPN nights. In Boston, they remove TPN nights and replace with IV fluids, then wean totally from IV fluids. The goal for complete weaning of fluids is still set for the end of this fall. We’re staying positive.