Monday, August 22, 2016

Blue Man Group

Having a bat mitzvah is a special thing, a huge milestone. Becca and one of her best friends, Bethany, had theirs weeks apart from each other. Heather, Bethany's mom, and I decided we wanted to do something special for the girls...memories to last. A day with moms in New York, seeing a show, Blue Man Group. It was just not seeing them, front row seats, meeting them afterwards...and they do talk! Becca got one of the pieces of art work they make during the show and Bethany got a pair of drum sticks used during the show. After the show, we walked to Max Brenners for lunch, below you can see the dessert the girls picked out. After all, how often do you get a day like this. One of the best moments for me was when the girls said, the only thing that could have made the day better was if Ian was there to share in the day! It was a wonderful day, getting some mommy time and best friend time. Mazel Tov to both girls!

Friday, August 12, 2016

An Exciting Three Weeks

 July 25th started the 3 week adventures in our house. Becca left for Camp Louise, her home away from home for 3 weeks. As always we were there when the gates opened at 8am.

Leather making - can't wait to see the finished product

With her bunk

Giving and getting hugs


July 31st started Ian's 2 week adventure at Camp Simcha Special. We were on the road at 6am and at the camp gates at 11am.

It was raining outside so they made him a "ghost"

Getting ready to go fishing

Enjoying the fish he caught
Boat ride

Both kids were finally in their happy places. Saturday, July 30th, Brian and I were on a 6am flight to Texas to visit friends. We were at a happy place as well. We relaxed, it was a nice 4 days. We arrived home late on Tuesday night. Back to work on Wednesday.

Then Thursday, August 4th, the adventures continued. Around 2:30pm, my cell phone rang and it was the medical director from Camp Simcha Special. Never a good thing! He began telling me that Ian was not feeling well, it started Wednesday night with a plug, needing to be bagged and a little bit of oxygen. Thursday morning, he told his counselor he was cold and needed another blanket, well that was unusual for him so Dovid (his counselor), told the nurses and they took his temperature and it was 99. The nurses listened to his lungs and he sounded course. An extra pulmonary treatment was done and still his lungs did not sound good. Plus his temperature was now up to 100.5. They decided to drawl some blood for cultures, start him on an antibiotics and get ready to transfer him out to the hospital. Well my computer was shut down within minutes. I asked a few more questions and Dr. Van (the medical director) said he would be in touch as soon as they had more information. My phone call to Brian pretty much went as follows: "they are transferring Ian to the hospital leave work and meet me at home. Call me from the car and I'll fill you in." Shortly after I got home, Dr. Van called to let me know that the hospital on New York did not have a bed and they knew we had been to DuPont before (one of the doctors at camp works at DuPont) so they were going to medivac him there.
Ian's view from the medicav trip!
That was good news for us because the drive to whatever hospital was going to be horrible regardless but driving 5-7 hours as opposed to 1 1/2 hours, so much better. Brian and I packed in a record time of 15 minutes...and in the car we went. We were getting updates from camp, the ambulance was leaving camp, the helicopter was taking off and would land in 50 minutes. We were hoping and praying we would get to DuPont before Ian did. During this time, we found out that Dovid was still with him and would be making the trip with him, thank g-d he was not alone. Once in the car, we began making other calls to family and some friends to let them know what was going on. I also called Camp Louise (where Becca goes) to let them know but for them not to let her know. We wanted them in the loop because we had no idea how things were going to go. We got to DuPont about 5 minutes before Ian. Ian looked horrible. His temperature went from 100.5 to 104. He was bright red and burning up. There were lots of people in the room working on him. He was barely moving air in his lungs, so it was time for a trach change, he would get cuffed trach as opposed to the uncuffed trach he normally has. The cuffed one would prevent any air leaks. When they pulled out his trach it was more than 1/2 plugged. The respiratory therapists said that he sounded much better once that was done. Still not out of the woods. Camp had already given him a dose of antibiotics before he left so they were going to keep him on the same one until they had an idea of what they were dealing with. His chest X-ray showed pneumonia or atelectasis (lung collapsed or a part of the lung collapsed) or both. In addition, Ian's IV access is so poor so they placed a central line in his groin area. His temperature came down some with Tylenol. Thursday night, Brian and I both stayed in his room with him, over all it was a quiet night and he slept well. Friday, was a lot of conversations with other hospital staff. Working on getting a plan together and waiting to see how Ian would respond to the antibiotics. The doctors decided that they were not going to do X-rays every day because watching Ian's reaction to treatments would give us a better indication of what he was doing. The blood cultures were growing staph so we knew at that point it was a bacterial infection and the antibiotics should start to work soon. Also based on the definition and criteria of sepsis, Ian was sepsis. His temperature was still going up and down. Ian slept most of the day. The social worker was in contact with the Ronald McDonald House and able to get a room for us. My parents and sister came up on Friday as well as did one of Brian's brothers and our nephew. Friday night was quiet and everyone slept well. Saturday was quiet, Ian slept on and off most of the day. One of my best friends from college came to visit us on Saturday night. He was changed back to his home vent settings as well as his home vent. He tolerated it all very well. Sunday, came my parents and Brian's parents for visits and again Ian slept on and off. Ian was happy to see everyone. Saturday afternoon, his trach was changed back to his baseline one (the uncuffed one). He tolerated that well also. Sunday afternoon, Ian was transferred from the PICU to the regular floor, always a good sign that home is coming soon. Once on the floor, everything went smoothly, they had gotten his cultures back and knew what staph it was so they were able to change him over to oral antibiotics.  Monday morning at rounds, went well and it was decided that we would be discharged and going home. We arrived home around 5:30 on Monday, August 8th. Ian is doing well and enjoying the visits he has been getting.

We know we have let everyone know that going to the hospital it not in our current hospice plan, however part of going to camp means we need to reverse that and allow him to go. We reminded Ian of this so he was aware were remember he said no more hospitals. Now that we are back home we are back on with our hospice plan of no more hospitals. 

Becca came home from camp today and was informed about Ian's adventures so we are okay with everyone knowing at this time. For those who knew of Ian's illness, thank you for all of your support and keeping our secret. For those of you who did not know, thank you for understand why we did not share until now. 

We are all back under one roof!

Remember to treasure, dream and live!