Monday, August 22, 2016
Friday, August 12, 2016
|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|
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!|
We are all back under one roof!
Sunday, July 31, 2016
Friday, July 29, 2016
Tuesday, July 19, 2016
Wednesday, July 13, 2016
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
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.