Friday, May 29, 2015
Wednesday, May 27, 2015
Monday, May 25, 2015
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
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.
Sunday, May 17, 2015
Monday, May 11, 2015
Sunday, May 10, 2015
Happy Mother's Day
Friday, May 8, 2015
Today we went back to DuPont for a follow up with Dr. M. It was a great visit. The x-rays were impressive, just as impressive as the originals. We will continue doing everything we have been and go back in July.
When we got the report from Dr. M after Ian's surgery, he informed us that Ian's bones were weak. Because of that we spoke with one MD, who works with people with short stature but not with people who have bone issues without short stature. He recommend we see Dr. B. So today after seeing Dr. M, we had that appointment. It was interesting. We learned that based on Ian's history, he most likely has low bone density (childhood osteoporosis). Ian has 3 out of 6 risk factors.
*Disuse: Immobilization (lack of weight-bearing exercise; wheelchair bound)
*Long-term steriod use
*PPI (proton-pump inhibitor) used for GE reflux
So what can we do about this...
1. Eat foods high in calcium (milk, yogurt, cheese)
2. Use those bones! Get on your feet.
...if able: weight bearing exercises using walkers, gait trainers, transfers
...standing exercise: 30-60 minutes daily
...increase physical activity, such as walking, as tolerated
3. Sunshine exposure for vitamin D: 15-20 minutes daily. After 20 minutes in the sun, sunscreen should be applied.
4. If lactose intolerant:
...use lactose enzymes
...try hard cheeses and live culture yogurt.
In addition, add vitamin and mineral supplements to meet daily dietary reference intake (DRI).
So what we have decided is to add liquid vitamin D and calcium to his daily routine. We will be stopping the pediasue he has been using the past month in the hopes he will begin to eat a little bit more by mouth. Brian and I decided a while ago we did not want to do feeds through his gtube, allowing him to continue to eat by mouth. We will continue to check in with Dr. B through emails and phone while seeing him again in a year.
It was a great visit to DuPont today.
Sunday, May 3, 2015
I did a little bit of reading on the internet as well as some books I have purchased over the years. How do you think you would feel, how do you think your children would feel if the other one had a disability. I am not sure if matters the severity of the disability, more just the fact of having one.
From reading things there are good and not so good times with having a sibling with a disability, yes just like with having a sibling in general. I remember when I sent a photo to Becca at camp this summer of Ian swimming for the 1st time in years. From what I was told by those who showed it to her, her reaction was priceless, extreme happiness and joy, so proud of him. Then there are the times when Ian goes into the hospital or just had his surgery...extreme fear and worry, along with anxiety of the unknown and if he would make it through.
Then there are the feelings of anger, resentment, jealousy, embarrassment, guilt, sadness, scared, anxious, loneliness and stress. Yes, I know that other pre-teens and siblings have the same feelings regarding their siblings, however, in most situations others can understand why they have those feelings. Having a sibling with special needs makes it harder to find others who can understand your feelings and have some of the same ones.
With anger, resentment and jealousy...Becca feels that Ian gets all the attention, or that the rules and responsibilities aren't fair. She is sometimes resentful because she can't do things she wants with Brian or I. While we do our best to explain to her why things are the way they are, sometimes we don't even understand them so getting her to understand...yea doesn't happen. In addition, we do our best to get her to places if we can't be the one to take her but as we all know having mommy or daddy there with you is better.
Embarrassment and guilt...there are feelings which Becca has not actually shared with us but I can only imagine she has them...most of the people who come to the house are people who have grown up with Ian and Becca, so they have seen the changes and know what we have been going through. Becca has not brought any new friends home since starting middle school, there is always a reason why not too...
Sadness...you can see this on her face from time to time...trying to have some family time is hard. We can't play games like others, whether or not they are board games or Wii games. We can't go for walks and play outdoors like other families. All of our family time has to revolve around Ian and what we can manage with him.
Scared and anxious...this has changed over the years as Becca has developed as well as Ian's disease has progressed. It took a while for us to help Becca realize that she was not going to get PCH1A, that being a carrier of the VRK1 mutation is different then getting the disease. There have been times when Ian is having a rough morning and getting Becca to school is hard, she is afraid and anxious to leave the house for what could happen. Both kids are completely aware of what is going to happen to Ian, and that has all of us scared about what our family will be like in the future.
Lonely...."no one understands what it's like" these words have come out of her mouth, many, many times.
Stress...all of the above adds to stress as well as feeling like you have "to be good and not cause any trouble". Brian and I have tried to make Becca's childhood as "NORMAL" as possible, but is that really possible.
All is just too much for a child to have to handle...but there is no choice but to handle it, for her and for us....we just do and continue to move forward.
Saturday, May 2, 2015
The 1st one is a conversations between Amelia (Derrick's sister, a neurosurgeon) and Owen (the chief MD at the hospital as well as a possible love interest of Amelia). Amelia is a recovering drug addict.
Amelia: I have a Baggie full of black market oxy codeine in my jacket pocket. And I'm trying to decide whether or not to take it. I've got the dead Derrick thing completely managed. I know people are worried. Since he has died everyone has been looking at me waiting for me to fall apart or freak out or just become a mess. Like some bomb everyone thinks is supposed to go off. My mother has been calling 3-4 times a day. Jasmine has been calling everyone. Makes sense. It's natural. Every man I have ever loved has died including my baby. Thank you universe. So it should be like Greek tragedy turned to stoned bad crack crazy but I am good. I got this. I'm fine. I'm telling you I am amazing. I'm saving lives left and right, I am putting butts in the seats in that OR gallery. People are fighting to hear me lecture. I am entertaining joke, joke, joke. I am funny. I am fun, I am a party I am doing I'm great. I'm handling the dead Derrick thing really well. Except today I yelled at Richard; he was only trying to invite me for coffee. And then I went and scored a bag of oxy from this junkie doctor. ..... It was fine. It was managed. ....
There are times when I run, we all run, but more then not we feel and we deal because we have to...but many times I am heartbroken...I know I will become more heartbroken as times goes on but eventually I will come back and continue to deal, because all that is human, that is humanity. That;s being alive. That's the point. That's the entire point don't avoid it. Don't extinguish it.
Eventually, all I will have to do is to begin again...