A lot has happened over the last 5 1/2 months. Aidyn had his central line removed, lost nursing through the state, he had his first real cold, got a stomach bug, was hospitalized for dehydration, and started battling with weight fluctuations. It has been a rollercoaster ride, for sure.
Towards the end of April the whole family flew to Boston for Aidyn’s CAIR appointment. It was an extra special trip because it would be a turning point in Aidyn's care. It was the first time all four of us have traveled to Boston together. We stayed six nights this visit, five of which was with the wonderful family in Brookline. They always make us feel at home.
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| Flying to Boston |
Aidyn had a consult appointment with Dr. Puder the day after we arrived. Dr. Puder had not seen Aidyn since last September, so he was thrilled to see an active, happy boy playing in the hall upon his arrival. He took the time to go over Aidyn’s progress, weight fluctuations, future cares and of course, down to earth chat. Dr. Puder was happy to make the suggestion to have the central line removed. He checked out the granulation tissue growing out of the CVL site and told us the surgery would be easy. Dr. Puder was just as excited as we were to have the CVL removed. He said that typically, in a case like Aidyn’s, TPN would most likely continue for another year or two. It was a very enjoyable appointment.
We reminded Dr. Puder how grateful we were to have him in our lives. He remembered what we told him when we first contacted him over two years ago by recalling our story. How Aidyn’s initial doctors told us he most likely wouldn’t live past the first surgeries and if he did, that his quality of life would be poor. How transplant was the only option for survival. We were told several times we could remove life support and let Aidyn pass away in our arms. And when Aidyn fought hard and was nearing discharge, we were encouraged to put Aidyn in a hospice home for terminally ill children. Instead, after discovering Omegaven, we took Aidyn home and boarded a commercial flight to Boston five days later. And the rest is history. We were probably the most troublesome parents for those doctors where he was born; I hope they saw that we were the best patient advocates they had ever come across. And one day, hopefully soon, I will send an update letter to that hospital, directed to the NICU. They must know that each patient deserves any and all treatments that are available out there before giving up.
At the time of clinic in April, Aidyn weighed 10.2 kg, or 22.4 lbs. But before clinic, Dr. Puder removed the CVL and granulation tissue in surgery.
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| Pre-surgery, still a little tired, especially with the three hour time difference. |
We were excited that the time was near to be able to give Aidyn a real bath! Aidyn did well during and after surgery. Within 30 minutes of waking up we left the hospital for lunch across the street and headed to clinic after that. The team was happy to see how far Aidyn had come. There were smiles all around. The plan was to increase food and fluid intake and come back in two months to be sure Aidyn was progressing.
The next few days were spent going to the Children’s Museum, the Aquarium and and spending time with my brother and sister, and her family.
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| Children's Museum |
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| The Aquarium |
The day before leaving Boston was Easter Sunday. Our host family invited us to Easter service and Easter dinner. Their three children, two teenagers and preteen, even set up an Easter egg hunt for Alyssa and Aidyn. They had so much fun, especially Alyssa. The home we stayed in was built in the 1890’s and is three floors with a finished basement and finished attic. Alyssa loved going up stairs from the main floor to continue the egg hunt.
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| Easter with the Mills. |
Our trip to Boston in April was an enjoyable one. It was a start of a new life without a central line for Aidyn, for all of us.
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| It was a beautiful Easter Sunday. We enjoyed a walk and nearby park. |
