Friday, May 29, 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 cause 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. 

Wednesday, May 27, 2015

Recovering From the Close Call

Since getting home on late Monday afternoon, Ian has been taking it easy and recovering from his weekend. He’s been sleeping, eating, and watching TV…having a few visitors…but taking it easy. He is currently on 2 liters of oxygen and we will continue to decrease that if he tolerates it. He is asking for dumplings so we know he is feeling better.

As for Brian, Becca and I, we have recovered as well and are all back to work and school.

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.

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 ativan and oxycodone, along with a phone call into his hospice nurse. She told us to give him another dose of the ativan and oxycodone 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 ativan and oxycodone, 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 oxycodone 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 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 day at a time, living for today. 

Happy Mother's Day

Friday, May 8, 2015

Follow Up With Spinal Fusion

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
...physical therapy
...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 have been doing a lot of thinking regarding Becca lately and what she must feel having Ian as a sibling, not just any sibling but a twin sibling to boot. I know what it is like to be Ian's mom and I have shared that many times I am going to try to share some of my thoughts on Becca.

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... 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

Thank You Universe

Watching Grey's Anatomy again on Thursday night and how everyone dealt with Derrick's death...there were a 2 different parts which hit me over other's. I wanted to remember them and share them with you...

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. ....

Owen: All that stuff you are managing, you are not supposed to be managing it.  You are supposed to be feeling it, grief, loss, pain, it is normal. It is not normal to you because you have never done it. It's a feeling, a feeling of grief, pain, you shoved it all down and you do drugs, instead of moving through the pain you run from it. It's tough. Dealing with being hurt and alone and afraid, this horrible feeling that is all there. I even run from it. I run off and I sign up for another tour of active duty. We do these things, we run off and we medicate, we do whatever it takes to cover it up, dull the sensation but it's not normal we are supposed to feel. We are supposed to love and hate and hurt and grief and break and be destroyed. And we build ourselves to be destroyed again. And 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. 

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. 

The 2nd part is at the end of the show when Meredith's is remembering her mother and Derrick...
I have to believe there is a way. There has to be a way to step off the carousel to start again. To start fresh. There has to be a way to leave all my ghosts behind. You are anything but ordinary. You have a choice. It's a choice I'm making to move forward. To move past this I can do that. I can do that. All I have to do is begin. 

Eventually, all I will have to do is to begin again...