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Monday, May 25, 2015

A Close Call

Today started out like any other.  Ian was at Gilchrist still finishing up his respite weekend so we took Becca out for breakfast before going to pick him up. Half way through our meal we get a call from the nurse at Gilchrist. She tells me that Ian has taken, as she put it, a turn.  I ask what specifically that means and she tells me his heart rate is irrational, SATs are dropping, very lathargic and hard to arouse and they can't find a pulse.  So I ask what that means and she says you want to come down here.  So Brian gets the check and within five minutes we are in the car and on our way down to the Gilchrist center in Howard County.  During the drive I'm trying my best to stay calm and to make sure Becca is calm all the while not watching the speedometer, yes Brian was driving.  We get to the center, park and run in and to his room not really expecting what we are walking in to. When we enter his room Ian is awake and seems alert. His heart rate is in the 120s, somewhat typical for him, and his SATs are mid to upper 90s and on 4 liters of oxygen.  Ian's Gilchrst doctor and nurse have been called and are on their way in.  While we are waiting and talking to Ian, Brian notices the nebulizer is hooked up incorrectly to Ian's vent tubing.  We ask the nurse about that and are informed as far as she knows it has been that way.  That basically means Ian has not received necessary albuterol treatments most of the weekend.  Without these treatments the chances of Ian going in to distress greatly increase because all of his secretions are building up inside him.  So for the next couple of hours we work to reduce the "damage" that has been caused by this and Ian responds very well.  So well in fact that Gilchrist was able to arrange an ambulatory transport for us to get Ian home.  At this point, here we sit while Ian is resting comfortably at the moment and try not to think about how close we came to losing our precious little man today.  Yes the next few days will be rough as we continue to treat what has been caused but we'd rather do that then not have him here with us.

We had a few good conversations with a few of the staff and they are already working on how to make this situation a learning experience...

Treasure, dream, live...

Sunday, May 24, 2015

Imperfectly Perfect Weekend

This weekend Ian went back to the Gilchrist hotel, for some much needed respite for all of us. When Brian dropped him off he asked Ian if he was ready for a break from mommy and daddy....his smile was huge and priceless.
Friday night, we took Becca out to dinner and then met friends at The Cow...oh how we love The Cow!

Saturday was the color run. It was a blast to walk the 3 miles with Brian and Becca. We are still getting color off of ourselves. 


Saturday night was a night for staying home and playing games with a friend.
Sunday morning, Brian played golf with friends. Becca and I went for a walk with a friend and then it was home to relax for a little bit. Becca spent the afternoon with girl scouts working on her woodworking badge. 

The day finished with some crabs and ice cream.



Not sure what tomorrow will bring except for a ride down to Gilchrist to pick Ian up and to find out how the rest of his weekend has gone. 

It has been an imperfectly perfect weekend...

We have checked in on Ian at the hotel and he is having a grand time....after all what happens at Gilchrist stays at Gilchrist.

Radical Faith...

 I have been reading the book The Grief Club: The Secret to Getting Through All Kinds of Change by Melody Beattie. If you have been reading my blog over time as well as know me, you know I have read plenty of self-help books to get through our journey. The following paragraph hit home with me...I have struggled over the years with why this happens, faith, what I believe in...well I can now say, radical faith it is....

Radical faith is different from the simple faith many of us had, the faith that says, If I do good things, then only good things will happen to me. If I'm a good person, people I love won't die. G-d will protect and take care of me and the people I love. Radical faith is bold. It's not squeamish, fundamentalist, judgemental, or blaming. It's courageous. It says, I can be a good, loving, decent human being and still be vulnerable to tragedy. My world can be shattered in a moment. Life can be viciously cruel, but it's still worth caring about. Disasters happen to other people and they can happen to me, and it's nobody's fault. When we surrender our defenses, our innocence becomes restored. Faith then becomes a matter of will, something we declare. I will have faith in life, we say. We laugh again. Our hearts are stronger then we think.

It's not easy to have faith when we're burning in the fire. We're not all going to get our miracles. More times than not, the miracle we get is life as-is and no guarantees. Plain faith, the kind most of us have been schooled in, applies to tomorrow. It says, Things are going to be okay-if and when we get our happy ending. When we talk to someone who has been where we are, we get the courage to have radical faith-the extraordinary kind. It's powerful when somebody looks us in the eye and tells us we can do it and we are okay, because he or she has been where we're at. Our bodies respond right down to our cells. There's enough disaster and pain in our world. Make a contribution. Give people some hope.

Monday, May 18, 2015

Slow Improvements

Ian has made slow, small improvements as the day has gone on. We have been in touch with our hospice nurse (Nurse E) and MD (Dr. H). Dr. H does not think it is Ian has an infection as when he gets them he gets them and spirals quickly. She feels that he is showing slow improvements and he should continue to show improvements. According to our nurse today, he has eaten ok and napped well. In addition, she said the best medicine is oxygen and to be liberal with it. She also said to make sure he is getting plenty of fluids as not enough can cases plugs and for the secretions to be thick. So we continue to move forward with what we are doing and hoping we see the steady improvements. 

Sunday, May 17, 2015

Rough Weekend....Life Goes On

Things were great on Friday night when Ian went to sleep, however, things quickly turned Saturday morning. Ian's night nurse was doing his AM treatments (nebulizer, chest vest, and cough assist), when he decided for his oxygen levels to drop.  After an extra cough assist treatment, we pulled a muscus plug, this was after putting him on 5 liters of oxygen. His heart rate was also elevated to the 160's. We gave him adivan and OxyContin, along with a phone call into his hospice nurse. She told us to give him another dose of the adivan and OxyContin and hour after giving it the first time and that we could give it every hour if needed. Through out the day we continued with the adivan and OxyContin, as well as the oxygen. We were able to get him down to 3 liters but would have to put him back up from time to time. Through out this life must go on, we have visits from cousins and grandparents. As well as our annual Easter Egg hunt...yes I know Easter past but this was the date that worked for our neighbors who put it on for the kids every year. Becca got to spend some time with one of her friends late in the day and even slept out. I got to spend some time with a friend as well who came over for dinner and just to hang. Ian kept us on our toes through all of this. He had a good night sleep, remaining on oxygen and a plug out this morning,  As I am updating this, he is down to 1.5 liters of oxygen and we have not had to give OxyContin today. Becca is at her Girl Scout Tea with her cousin and Brian is there working the kitchen.  Ian and I are home, watching tv, getting our feet rubbed...oh wait that would be him getting them rubbed, me doing the rubbing...folding laundry and getting ready for the week...after all life goes on. 

Monday, May 11, 2015

Causes of a Headache - by Brian

Almost each and every day we suffer from some sort of headache whether it be a slight pain in your head or a really bad migraine. Typically we relate a headache to many different factors such as stress, lack of sleep or even dehydration. We all use different methods of relieving this discomfort and such by taking medication, being in a dark and quiet room, etc. But tonight I learned an all new reason behind why someone would get a headache or pressure in their head. So there I am in Ian's room, writing with him in his journal and he makes a comment as how he doesn't like the pressure. I ask what pressure and he says the pressure in my head. Logical thing to ask next is if he has a headache and he says no.  So I ask why he has pressure in his head. Ian didn't really know what to say and I asked him if it was because of all the information and knowledge in his head. He promptly replied yes that's it. And I told him that's why we were writing in his journal to get some of those thoughts out of his brain and to relieve some of the pressure. Even with that Ian still grimaced and said he doesn't like the pressure. I told him that's what happens when you know so much. So next time you have pressure in your brain just remember it may not be an actual headache. It could be all the knowledge and information in there with no more room. So write some things down to make room. Otherwise who knows maybe your head will explode from the pressure.

Sunday, May 10, 2015

Mother's Day

Mother's Day means different things to different people. Whatever it means for you, I hope you have a very special one.

For me Mother's Day holds different meanings. Through different avenues, I have met many different mother's... A very special mother's day to all those who have lost...may your little ones memories bring you joy today. A very special mother's day to all mom's out there, may today bring more memories for you to hold dear. For those who have lost their mom, may her memory help you to make more memories. 

12 years ago, I celebrated my 1st mother's day weekend by bringing Becca and Ian home from the hospital. After spending 2 weeks in 2 different hospitals, and 1 week back in the same hospital, 3 weeks after they were born our family of 4 was home together. Having everyone home was wonderful and a Mother's Day for the books. Each and every Mother's Day, I have with my family of 4 on earth is incredible..however, I try to remember that each and every day I have here with my family of 4 is incredible (we will always be a family of 4, I just know that one day it will be in a different way). 

Becca and Ian's B'Nei MItzvah is exactly one year away....May 8, 2016 (Mother's Day)...OMG...when I started this blog today I did not realize this. Last night, I started going through our millions of photos, putting them into a special folder for a montage or photo album (we have not exactly decided what we are going to do yet). For me this was bitter sweet...I loved seeing all the old photos, all the old memories, all the things we used to do together....it was a harsh reminder of what this disease does to one's body, one's family, one's life...but it was also a reminder that we are all here...one day at a time, living for today. 






Happy Mother's Day