A Long Day

Busy, long, overwhelming day with Ben. New hospital. New doctors. We shared Ben's story a dozen times to the medical, nursing, pulmonary, cardiology, and ear/nose/throat team. Our nurse Erin was wonderful with us. Ben's blood work, complete blood count, showed his #s to be good including his RBC and PLT which had been off when his blood was super thick. Cardiology did another ECHO ultrasound to assess the pulmonary hypertension. It didn't show much change. There was some dilation of his aorta and right ventricle. The doctor gave us this very thorough and lengthy explanation which was was helpful but I was so delirious and hungry at the time I barely took it in. But bottomline like I said there was nothing new or overly concerning. Nothing to explain his shortness of breath and the scary episode from the night before. Next we waited and waited for the ear nose and throat team to come back and put a scope (camera) down Ben's throat to assess for any anatomical reason that could show any constriction or narrowing of his airway. Meanwhile it had been like 10 hours since Ben had breakfast. He was irritable, hungry, and annoyed rightfully so. Painful to watch as he struggled to breathe or calm himself down. We dipped his pacifier in sugar water like 50x and held in his mouth. If it fell out, he'd have a complete meltdown. So anyways finally at 7pm they came. The scope showed dried secretions/mucous (likely from the drying oxygen) which thankfully they removed and I swear he's breathed easier since. They also noted his trachea seems loose, not as stiff as it should be but sometimes in sick babies who are small this happens and they grow out of it. Of note, the viral panel they sent of Q-tips from his nose came back negative for some common viruses which is good. Hopefully he didn't pick up something at the pediatricians office after all. Speaking of which she called me from her cellphone to check in which was really nice. I'm sleeping here again tonight. This unit feels like the Ritz Carlton. Ben has a private room. Unlike NICU where he was one of 8 babies in a room. There's a comfortable cot to sleep on, a sink in his room, and a bathroom around the corner. It's luxury to me. I have everything I need to pump milk and be at Ben's side. Fortunately MGH is 10 mins to Charlestown too. I could honestly walk home it's only 1.5 miles. Matt went home for the dogs of course. Tonight I had a special visit from my friend Ciara. Her brother John was diagnosed with leukemia on the 2nd day he was born. Ciara donated her bone marrow to him when she was 5 and her brother was 8 months old. He underwent lots of chemo and the bone marrow transplant. (Note: this is exactly what I do on my floor with adults) This was back in 1988 when Mother Teresa last visited Boston. She came by the hospital. She kissed Ciara's brother all over, blessed him and her family and gave them a miraculous Mary charm. She told them to pray "Mary, Mother of God, make my baby well" John is in complete remission today. It has been passed to other kids who have needed it over the years. Ciara lent us this beautiful charm and prayer for Ben. The picture shows it. She also gave us a beautiful wool blanket from Ireland that I'm sleeping in now. A tough brutal afternoon made better by tonight. So thank you Ciara and Sullivan family. This meant so much to us and Ben. The dude got to eat again, we snuggled and had a bed bath. I pray the teams come in tomorrow and decide we can head home. I don't know what else work up they were going to do. We'll find out. Ironically this article about NICU parents on Huffington Post just came to my inbox. I cried reading it as it could not be more accurate of these past 3 weeks. If you have time, take a peek. http://m.huffpost.com/us/entry/6071208 />