On Sunday Aidyn turned 2 months old! His corrected age is really 3 weeks. Take your pick. A good friend organized a thoughtful fundraiser benefit for Aidyn, and it was a success on Sunday. There was a silent auction, bake sale, activities and live music. It was hosted by Poor Red’s Station in New River, AZ. There was a nice turnout and everyone enjoyed themselves. Aidyn and I couldn’t attend, of course (we’re in Boston), but I felt like I was there since we used our webcams. People were able to see Aidyn on a TV screen hooked up to the Joey’s laptop. It was very nice.
Aidyn is continuing to do well with his treatment here in Boston. We arrived on Sunday, May 24th and admitted Aidyn to Children’s Hospital Boston at noon, May 25th. We were in such good spirits when we arrived. Aidyn had a big boy bed set up for him and he was lucky to have the room to himself (2 kids per room). The nurse changed Aidyn’s central line dressing and weighed him, he went up to 2.9 Kg, or 6.4 lbs. She let us know that his Omegaven was ordered. We saw Dr. Puder walk passed the room and we acted like we just saw a celebrity. Dr. Puder is a celebrity to all of us parents whose children have suffered the effects of TPN use. We loved him already. He came in and was so personable. He was happy to get Aidyn in so young; he’s one of the younger babies on Omegaven. We were impressed with the fact that Dr. Puder took his time with us and was in no rush to be off somewhere else. He ordered x-rays and labs to be done right away. The x-ray showed Aidyn’s Broviac placement was good. When we returned from the x-ray, the Omegaven arrived. He was started on Omegaven for a 24 hour period at first, then at the usual 12 hour dose in the evening. The labs revealed Aidyn’s total bilirubin level was 8.1 and the direct level was 5.9. They had gone up since his last labs were done at Banner Desert (total was 5.5 and direct was 3.6 on May 18th). Dr. Puder said this was most likely from the blood transfusion Aidyn received the day he was discharged. Transfusion blood contains broken down red blood cells, hence bilirubin. Dr. Puder almost never administers blood transfusions, even for surgeries.
The next day Aidyn had an Upper G.I. done to determine how fast food moves from his mouth to his small intestine. He drank the contrast and it passed quickly. Good news! The next day, Aidyn was started on feeds, 5cc’s of breast milk 3 times a day. He loved feeding from a bottle and he had no problems at all. The day after, Aidyn’s feeds went up to 10cc’s. While in the hospital, his Lovenox therapy was addressed. He had an echocardiogram done. The clot found previously at Banner Desert seemed to be gone. But there was a concern about the area around the tip of the broviac placement near the heart. Aidyn’s Lovenox dose was increased several times during the hospital stay. The staff made sure we were well trained in giving the Lovenox shots and preparing the PN and Omegaven with the pumps before being discharged. We anticipated having Aidyn in the hospital for 48 hours, but it turned into 4 days instead. The hospital most definitely is not in a rush to send their patients home. We appreciated that very much. Our stress level was low for the first time since Aidyn’s diagnosis with NEC. Before discharge, we were able to find a place for Aidyn and me to stay while he is seen outpatient. We were fortunate enough to be placed with a wonderful family, the Mills, who donates space in their home to families in medical need through Hospitality Homes.
I do not have my own transportation (nor would I want to), so I either take the Greenline train or a cab (in bad weather) to the hospital for appointments. So far, we have been with the Mills for three weeks. The first appointment with Dr. Puder on June 3rd went well. Aidyn had labs done, a weight check and a visual exam. He gained weight (not sure how much), appeared more alert and the bilirubin results showed an increase, as expected. It tends to go up before going down when being treated with Omegaven. The total bili was 9.4 and the direct was 6.7.
Last week we went to Aidyn’s first CAIR clinic appointment as well as had a barium enema and another echocardiogram done. The enema was to determine how much of his colon was left. It showed a good amount left, but the doctors were unsure if there were any blockages or narrowing. At that time, Dr. Puder offered to reconnect Aidyn’s small and large bowels when his direct bilirubin goes down to 2. We were excited to hear that it could be done while he is here being treated in Boston. The echo confirmed that the clot previously seen in AZ was gone, but the area near the tip of the central line was still unclear. It was decided that Aidyn be treated therapeutically with Lovenox since he now has a history of clots, has a central line and still has an opening in his septum that could allow any bit of possible clot to float elsewhere in the body.
The appointment with the CAIR team (Center for Advanced Intestinal Rehabilitation) was thorough and lengthy. During the visit we saw the nurse for Dr. Puder, the dietician, the PN nurse, social worker, Dr, Duggan, the pediatric gastroenterologist, Dr. Jaksic, the pediatric surgeon, and a few others. The plan was to up Aidyn’s feeds 12cc’s 5 -6 times a day, increase his PN volume, to start weaning off the PN and hopefully find a way to keep his ostomy bag from leaking and changing it everyday (should be able to stay on for at least 3 days). For now, Aidyn is off his TPN for one hour everyday, totally unhooked! He loves getting fed by mouth and is always wanting more. With labs from last week, his total bilirubin went up again. The total was 9.9 and direct was 6.8. Wednesday, he saw Dr. Puder again. He had his labs drawn from his broviac and was weighed. He is 7.3 lbs! We talked again about reconnecting Aidyn. I can’t wait to be rid of the ostomy and all the trouble it gives. Aidyn’s color is looking a little better and his eyes are too. His activity level is wonderful. He’s not just a sleeping baby anymore. He stays up for a good amount of time, engaged in my talks with him and very curious as a baby should be. He is even cooing with me and his little bear friend. The lab results from this week are better. His total bili is 8.7 and the direct is 5.8. Yay! The bilirubin is down hill from here.