Exhausted, overwhelmed, but encouraged

Today has been quite a day for us.  I gained a newfound respect for our NICU grad moms who are discharged with 2-3 pages of appointments, many scheduled on the same day for "convenience."  It is beyond exhausting. We had a full day at the hospital starting at 8am. When we left the hospital at 4, we felt like we had experienced several days in just a few hours.  We left the Yawkey Inn and walked about 6 blocks to the hospital. Jacob enjoyed the walk as the snow was piled up everywhere! They do a great job clearing the streets and sidewalks quickly, so it was really a nice walk.

Our first and longest appointment was at the Vascular Anomalies Center for their multidisciplinary clinic. We were there for several hours, and saw a battery of doctors.  We spent the most time with the general surgeon who specializes in BRBNS, performing all the lesion removals and intestinal surgeries. We also talked at length with the Interventional Radiologist, and the Internal Medicine doctor who manages all the medication therapies for BRBNS patients. We saw a dermatologist as well, and spoke with several people about research they are doing for BRBNS. It was very overwhelming for us and for Jacob, as there were as many as 10 people (besides us) in our exam room at a time. The specialists came in and out throughout the morning, but surprisingly, we really did not wait more than about 5 minutes between. Jacob did great throughout, I was so proud of him!  He does not like his personal space invaded, but really tolerated all the exams well.  He was ready to go though by the time we were through. Luke was thoroughly not impressed, and slept almost the entire clinic. We left and grabbed something to eat, and came back for preop testing at 1.  We spent the next 2 hours there, seeing a nurse practitioner and anesthesiologist, as well as taking care of admitting paperwork for Jacob's surgeries Wednesday. Jacob was so tired at this point, we struggled to keep him awake.

From there we went to the lab to have preop bloodwork.  The doctors ordered him to have Coags drawn (clotting times) which requires much more blood than just a finger stick. Jacob was not happy at all about this turn of events and put up quite a fight.  By the time we left and caught the shuttle back to the Inn, it was after 4:00.  I'm not sure I have ever seen Jacob so tired in his entire life.  We all passed out and slept til 7:30.

So after Skyping with Asa & Elena, we went and ate dinner at 9pm.  Needless to say the boys are a little off kilter on their schedule and are still up, but maybe they'll sleep in.

Thank you all for all the thoughts and prayers you have given us today, we really are doing well. My mind is still swimming with all we learned today, and I'm not really capable of articulating at this point all we heard, but once things settle down, I will give an update on the specifics.  But I will say, overall we are encouraged by all we heard. More than anything, it's such a relief to see people who are used to this, and not in awe of it's novelty.  It has given us much hope to see their optimism for Jacob's future and their ability to treat him and help us.  We know who is in control of Jake's life, but are thankful for the knowledge and experience given to this team of doctors, and the solidarity with which they approach these difficult cases. To be honest, we hope we don't need them very much, and Jacob's disease stays well under control, but it's a relief to know what they are capable of doing, and the research they are doing to learn more about this complicated condition. The hospital had a quote on the main hallway wall that was very encouraging and truly embodies all we have experienced here thus far...

"We dwell in Possibility - a place where once impossible discoveries and innovations are becoming world changing realities."

I hope that the discoveries they have made and continue to make keep my baby's future as bright as he deserves. We are so thankful to be here and thank you for sharing our journey and praying for today's miracle.