Grammy traveled to Manhattan with us for William's pre-op appointment. After Fred had strategically packed the call FULL for our anticipated 10-14 day stay, we were had good weather for our trip into the Upper East Side... Shortly before our approach to the George Washington Bridge, we received a call from the social worker at Sloan saying there was no room for us at the Ronald McDonald House. Just as I started to panic, she said the hospital would put us up in a hotel nearby until room became available at RMDH. She gave me a hotel name and address... and by golly, mom and I found it! We were so proud....that is until I entered the swanky lobby and the clerk told me we did not have reservations!
The social worker's timing couldn't have been better....she ended up calling me back before I could find her number in my contact's list. Ronald had one room available!
We settled ourselves and all shared a valentine donut. As silly as it is, this picture is so nostalgic of the days when William was a BIG eater!
The social worker's timing couldn't have been better....she ended up calling me back before I could find her number in my contact's list. Ronald had one room available!
We settled ourselves and all shared a valentine donut. As silly as it is, this picture is so nostalgic of the days when William was a BIG eater!
William especially enjoyed nibbling on his beads at the Mardi Gras party in the cafeteria. It was mom's first experience at the House's cafeteria. You see so much heartache seeing all the sick kids.
Given our pre-op appointment wasn't until the afternoon, we had plenty of time to ventured around and give Grammy her first tour of our NYC stomping grounds. We did some shopping along Lexington Ave...hitting a book store (to pick up a NYC visitor's guide, of course!), a children’s clothing boutique (fun to look, but beaucoup bucks, holy cow!) and a great toy shop.
William was a good little explorer that day...all bundled up! You can tell he really likes the busyness of the big city.
Watch-out Upper East Side....its Grammy & William!
William had loads of blood work drawn, an exam by the NP and we proceeded with a meeting with the surgical NP, Angela. She described in detail what to expect from the surgery. She explained it is scheduled for 9am, so William would need to be there by 6:30am. Nothing to eat or drink after midnight (yikes...how would we get through the night....this boy is accustom to nursing nearly all night long!).
The surgery was expected to last a minimum of 6-8 hours and possibly longer, even 10 hours. Angela then gave a very detailed account of what to expect on surgery day. She began a realistic description of how William will look after surgery. He will be brought by ambulance to the PICU at Presbyterian Hospital (across the street from Sloan), since there is no pediatric intensive care unit at Sloan. He will have severe swelling, be kept on a ventilator for 2-3 days all while being kept sedated with his eyes taped closed, he'd have a chest tube and likely an abdominal drain in place. Then there are all the monitors, IVs and an NG tube to decompress his stomach. It was clear the team certainly wanted families well-pepared for what to expect.
Enter Dr. LaQuaglia....and every changed instantly. We went from a serious conversation to suddenly an intense, gut-wrenching one....
Dr LaQuaglia proceeded with a detailed account of the surgery he would perform. He reviewed William's CT and MRI scans, comparing the pre-and post-chemo images in a split screen. He pointed out areas of concern and described all the major veins and arteries involved as “swimming” in the tumor. There was a noted decrease in the size of William's tumor after the two rounds of chemo, however his tumor had finger-like protrusions still intertwined around vital organs, blood vessels and nerves, making William's a very complicated surgery. Dr. LaQuaglia also pointed out that the scans showed considerable calcification from shrunken tumor areas and a lot of inflammation, both of which complicate the surgery. He planned to put in an additional port line for blood transfusions.
Of course, we can't forget about the spot on William’s liver...after all, that was a driving force in the decision to do the resection at this time. The area of concern was not on the surface of the liver but inside the it. If possible, he would plan to do a core needle biopsy; otherwise a wedge biopsy would be required.
Dr LaQuaglia reassured us that William’s tumor was not the largest he has seen.
Thank God...that is certainly not the contest you want your baby be first in...
...but he did reiterate that William's tumor was a very large, complicated mass in a small body. He repeatedly discussed the risks and used the term "life threatening surgery."
Honestly, this is a position no parent should have to be placed in to make such a decision on behalf of their child....it is just not right... I felt numb every time I looked down at William, who by then had fallen asleep on my after nursing.
Dr. LaQuaglia kindly gave mom and I plenty of opportunities to ask questions, all of which he answered thoroughly. He stressed several times how involved William’s surgery would be, explaining that if the risk were to become too great, he would withdraw. In the end, the only question I could ask was, "Are you sure he is ready for this?....Is this really the right time? I mean, we are making this decision based on the information provided by you....is this really the right thing to do?"
Dr. LaQuaglia calmly nodded and quietly said, "I believe so."
Last but not least, they swabbed William’s nose to test for non-symptomatic flu due his runny nose, just as a final precaution. We could leave no possible source of complication unturned.
We left the 1pm appointment at about 5:30, our heads spinning...spinning..... with all the information....
Dr. LaQuaglia insisted on holding William, played with him and made a true effort to bond with his little patient. With all respectfulness, this showed a lot as to his character, despite the intimidation factor and his well-earned bit of arrogance. Truly awesome....
1 comment:
I can't believe it's been a year already... so much has changed for your little champ! I'm so glad those days are over, and he's showing signs of feeling better! I'm so thankful that he's doing better, and your lives aren't in the insane limbo they were in a year ago! I'm grateful to God for blessing our family with Nicholas and William - their spirits and personalities are so inspiring!!!
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