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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

cookery





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!

Sunday, July 31, 2016

HOUSE ARREST

I just finished reading the book House Arrest. This book has many similarities, yet many differences to our lives. It is about a middle schooler who ends up on house arrest for stealing a wallet in order to try to help his family. His baby brother has a trach and nursing needs, yet due to certain circumstances, they can't get everything he needs. Timothy, the middle schooler, must write in a journal regarding his feelings and what he has learned being on house arrest while reflecting on why he stole the wallet. Some of the feelings and emotions he comes across, such as feeling like he was on house arrest before the court ordered house arrest because of his brother, or the feelings of needing to try to find a way to fix his brother. I started to wonder if these are some of the feelings that Becca may be having. For many reasons, we don't go out as a family very often. When she has activities, most of the time we find others to take her, as someone needs to be with Ian at all times, how does that make her feel, does she really understand why we aren't the ones to take her? How will all of this affect her when she gets older? My hope is that she really gets it and our family situation will help mold her into a wonderful person, a caring person, one who helps others regardless of the situation. My hope is that as time goes on she does not resent any of this and it helps to mold her. My hope is that she comes to terms with it all and has others to share her feelings with...to not feel like she is on HOUSE ARREST.

Friday, July 29, 2016

Happy Places

As of Monday morning at 8am, Becca had arrived at her happy place.  So far I have seen a few pictures, all with a smile on her face. Otherwise, no news is good news!
As of 11am, Thursday morning, Ian arrived at his happy place. Me being me I have checked in and am happy to report he's doing well, as is Dovid, his new counselor. Below is the painting which was made for his room, simply amazing. 
Here's to the kids having an amazing time at Camp Loiuse and Camp Simcha Special!

Tuesday, July 19, 2016

Vacations

The end of June and into July, Becca got to go on a wonderful vacation to Alaska with her Nana and Poppop and her cousins. Below is a photo of the dog sledding. They got to do some once in a life time things as well.  Ian asked for a vacation since Becca was getting one, well how does Ian get a vacation, he goes to the Gilchrist hotel. So today he was dropped off for his vacation. Below you can see him tucked in and watching a movie. By each of them getting their own vacations, they are both also getting some mommy and daddy time. Treasure, Dream, Live!

Wednesday, July 13, 2016

Pulmonary Appointment

Every 6 months Ian gets checked out by his pulmonary doctor. You never know what will happen, although sometimes I have my feelings about it. Today was a fantastic appointment. Dr. S was extremely happy with Ian and what she saw. His CO2 level was 44 (normal is 35-45). His O2 was 100. Very stable on the HME. He has been off of antibiotics for about 5 months and doing well. Dr. S made no changes to Ian's treatment plan or his vent settings. And best of all,

HE WAS CLEARED FOR CAMP!

Smiles all around after the appointment. We go back in 6 months.

Tuesday, July 12, 2016

Migraine vs Pain

I am a frequent headache/migraine suffer, and last night was just another one of those times. As I laid in bed trying to fall asleep, my mind wandered through the pain. It came on and off, sometimes slight pain others horrible. All I wanted was for it to go away...for sleep to come over me. It got me to think about Ian and his pain. How much pain is he in regularly? How does he deal with it? My heart hurt when I thought about it...I felt like my pain was nothing compared to what he goes through on a daily basis.

According to http://www.mayoclinic.org/ 
A migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and can be so severe that the pain is disabling.

According to http://www.ninds.nih.gov/
Pain in its most benign form warns us that something isn't quite right, that we should take medicine or see a doctor. At its worst, however, pain robs us of our productivity, our well-being, and, for many of us suffering from extended illness, our very lives. Pain is a complex perception that differs enormously among individual patients, even those who appear to have identical injuries or illnesses.

One of the biggest struggles for us with Ian at times is pain management. When I get a headache/migraine, I know my medicine and sleep will help it to feel better and eventually go away. For Ian, depending on the day, depends on what helps him to feel better, I don't think the pain ever goes away. I believe he has always and always will be in some kind of pain. Sometimes it is as easy as giving him one dose of pain medicine while other times it takes multiple doses of multiple pain medicines. And getting him to take a nap, well that is another challenge, unless its medicine induced. 

I am not sure where or why I am writing this except for the realization that the next time I have a headache/migraine, I will try to remember my pain is minimal compared to what my little man goes through on a daily basis. I will also try to remember the next time Ian's in pain, his pain threshold is probably relatively high and work through it with him.