Good News

I forgot to mention Aidyn's lab results. His total bilirubin is 7.9 and the direct is 4.9! Just 2.9 more points down to go for the direct bilirubin! Aidyn's red blood count is up, meaning he's making new red blood cells. He's absorbing his iron supplement well, so his iron level is great. All other areas are also good. We tested his thyroid since his newborn screening in AZ resulted in abnormal results. His thyroid levels tested normal. We're hoping Aidyn's direct bilirubin will reduce to 2 in the next couple of weeks. Aidyn's skin and eyes are looking better each day. His behavior is that of a typical baby as well. All good things.

Second CAIR appointment

Yesterday was Aidyn’s 2nd CAIR clinic appointment. We discussed Aidyn’s growth rate and his weaning from the TPN for an additional hour.

Aidyn weighed 3.39 kg (7.5 lbs) and measured 20 inches. Good growth, but not at a rate the team is wanting. He is not going up the growth chart like before. It’s unsure what Aidyn may be losing from his output, so the dietician will be adding more nutrients and calories to the TPN starting next week. Hopefully, this will get him back on track. We will keep the feedings the same, 15cc’s of breast milk 5 – 6 times a day.

For about a week, Aidyn had been off his TPN for one hour. He was fed a bottle 20 – 30 minutes before being unhooked. He seemed to do ok, but it was hard to tell. The time he was taken off is usually a time he naps, so his slight irritability and sleepiness looked like he was just tired. However, there were a few days where Aidyn appeared scared and a little shaky. Yesterday, I was able to really observe Aidyn off TPN with better judgment because he had a 3 – 4 hour nap right before being unhooked. Well, after a half hour, Aidyn started to act agitated and his hands were a bit shaky. With a pacifier, he was better, but wanted to either sleep or just look off into space (he is usually curious, looking around when awake). Today I talked with the PN nurse, Denise, and she suggested we put Aidyn back on the TPN for the 24 hours until we come to the Wednesday appointment next week. We will look into testing his blood sugar while he’s off TPN. We’ll take baby steps.

Wednesday, Aidyn smiled at me for the first time! Not a gassy one, a real one. It’s funny, I wasn’t the first to receive his smile, his bear was. It’s been with him since he was in the NICU in Arizona. He’s like a little angel watching over him. Aidyn is enjoying the play gym I got for him. In just a couple days, he figured out how to move the dangling toys. I’m very proud of him.

Thanks again everyone for all the positive thoughts, prayers and support. It keeps Aidyn and the family strong.

ER visit

Happy Father’s Day! It would have been great to spend Father’s Day as a family, but I am glad Joey is able to spend it with Alyssa and a good friend who flew out to AZ from Maryland. They are spending the day in Sedona. It’s a great place to get away from all the stress.


Yesterday wasn’t one of my good days. Aidyn has had continual problems with his osomy bags leaking. I had to change it three times! The 3rd time was the last straw for Aidyn. He cried so much his ostomy prolapsed. This had happened before, but it didn’t come out as much and it went back to normal within the hour. I called Dr. Puder and he reassured me this can happen and that the ostomy isn’t threatened as long as the color stays red or pink. He instructed me how to push it in. I could go to the ER if it wouldn’t return to normal. Well, after 5 ½ hours, the color got darker, I couldn’t push it back in and the ostomy was bleeding enough to change the color of the output. I called the on call surgeon, explained it all, and was told to come into the ER to have a look. The ER doctor examined the ostomy and decided to consult with Dr. Puder’s team. The on call surgeon, Dr. Hamilton, was chosen to take a look with a colleague and wouldn’t you know it, the ostomy returned to normal. I started to feel foolish, but everyone said I did the right thing. I love how attentive Children’s Hospital is with our concerns.


We continue to have more leakage issues today, but we are less stressed. I guess Aidyn cannot sleep on his stomach until he is reconnected. Which means more sleeping in Mommy’s arms…but that’s always o.k.

Admission into Children's Hospital Boston

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.

Omegaven

Let me continue the details of Aidyn's journey. When we did research on Omegaven we were very excited and relieved. We were determined to get Aidyn this experimental treatment. We told the nurses and doctors about it at Banner Desert. All but one had not heard of it. In fact, Aidyn’s main neonatal doctor had seen it used in a hospital in New York, so he mentioned it to the pediatric gastroenterologist. She looked into what it would take to get Omegaven to the hospital for Aidyn and also left a message with Dr. Puder of Children’s Hospital Boston to see if we could have the treatment remotely. She also left a message at Seattle’s Children’s Hospital and UCLA. The only message returned was from Dr. Puder from Children’s Hospital Boston. In a detailed email, he said he could treat Aidyn in Boston, get housing and the Omegaven would be paid for by the hospital if the insurance didn’t cover it. While waiting to hear back from the other hospitals, somehow the Peds G.I. thought we weren’t sure what we wanted to do. We found that out when Joey started making calls on his own to different hospitals. We were very disappointed and angry that this message was somehow portrayed. Joey left a message with Dr. Puder and received a call back from him. Dr. Puder was so easy to talk to and very personable. The doctor had his team make the necessary contacts for our insurance and details for Aidyn’s admission into Children’s Hospital Boston. We were in good hands.

Meanwhile, the hospital Aidyn was currently in seemed quick to have Aidyn discharged…we were not very comfortable with the hasty preparations. We had no training in the hospital to take care of Aidyn’s TPN and pumps. I had two days to learn how to inject Aidyn with Lovenox, something that is done twice a day. We honestly thought the hospital was going to keep him a little longer to observe the clot Aidyn had. Plus, we were not prepared at home. Aidyn was discharged from the NICU and hospital on May 19th, weighing 6 lbs 2.79 oz. Let me add that when Aidyn was discharged, he was taken off his TPN for 2 hours. He had never been off of it during the hospital. I find that a dangerous thing to do, he could have had a terrible low blood sugar issue.After a couple of days being home from the hospital, Dr, Puder had called to say he wanted Aidyn admitted to Children’s Hospital on the following Monday. We were very excited. We somehow managed to get plane tickets and a hotel for Sunday, May 24th. We did have a scary moment on the way to the airport. As we pulled down our street, I noticed blood coming through Aidyn’s IV lines. We hurried back at the house, called the home health nurse (who had been on the phone on and off with us for over 24 hours, due to pump problems) and in a panic changed his tubes out. The nurse arrived and changed his central line cap. We feared this would happen during our flight, thank God it didn’t, at least not until we got to our hotel room. I changed everything out again and hoped we would have an uneventful night. The next day, Aidyn was admitted into Children’s Hospital Boston for treatment. We were so relieved. Aidyn's doing well, by the way.

Catching up, April and May

Apologies for not updating. Life has been extremely busy. We must catch up on what has happened in April and May. Let me rewind a bit. I forgot to mention that during the week of Aidyn’s surgery recovery, we requested he get an ultrasound to rule out problems in his brain. The doctors felt he probably didn’t have any major brain injury issues, but still ordered the ultrasound. The results were good, no apparent damage such as bleeding or lack of oxygen. Around the 27th of April, Aidyn had an echocardiogram done to see if there was a possibility Aidyn had a clot from his heart that could have contributed to possible circulation issues of the small intestine. It could help in determining why Aidyn got NEC. Well, a small clot was found in his superior vena cava. But, since his blood flow was very good around his heart, the doctor’s ruled out a problem there. The neonatal doctor’s suggested treating the clot with medication, but the cardiologist said that since the clot was small, there was no need to treat it. Another echocardiogram was done about four days later, but it had grown a little. This time Aidyn was given Lovenox, a blood thinner. We were told he would be on it at least three to four weeks. Aidyn also received an ultrasound of his abdomen to be sure there were no other clotted areas. There wasn’t. So, the NEC has no known trigger.


On May 1st, we met with the transplant doctor and the coordinator of University Medical Center from Tucson. It was discussed that Aidyn would have to be 20 – 22 pounds and stable before he could have the intestine and liver transplant. He would probably be 1 to 1 ½ years old when he was given the transplant. It seemed so long. The transplant coordinator had bad news. Our insurance doesn’t cover small bowel transplant. We were shocked. They said they could appeal the insurance company, but would have to wait until Aidyn was closer to getting the transplant. That put a damper on the weekend. There had to be another way, I thought. I remembered the morning of the consult, talking with a kind lady while we waited for our transplant consults. She mentioned that a woman at UCLA was allowed to use an alternative lipid for use with the TPN, but it came from Europe somewhere. During the weekend I began to search for an alternative to the TPN. I found Omegaven.