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My Versatile Blogger Award!

I have been honored with an award nomination from Grateful Mama. It is the Versatile Blogger Award! The rules of accepting this award are to share 7 things about myself and to nominate 7 deserving bloggers. So let me see what I can think of to share.

 

versatile-bloggeraward

  1. I am a music composer and have an aspiration of writing a Broadway style musical which profits would be contributed for research of Fanconi Anemia (my son’s rare disease), Cancer & other rare diseases.  My initial concept has the show titled “Cure” the musical experience.
  2. I have sang on stage at the Metropolitan Opera House. There was thankfully no audience as it was during a backstage tour. As we walked across the stage I stopped in the center and belted a few bars. The guide said no one had ever done that before. Always glad to be the first! Everyone laughed.
  3. My 2 year old son inspires me everyday with his fight and will to survive.
  4. I Love Walt Disney World, I proposed to my wife in front of Cinderella’s Castle, we honeymooned there, & our son’s name is inspired by Walt.
  5. I am a runner, my goal is to run the Walt Disney World Marathon in honor of my son.
  6. My outlook on life and values have dramatically changed in the past two years.
  7. While my life is now full of struggles and challenges (mentally, medically, financially) I still feel that my life is rich and full of purpose.

I am not certain that I really am worthy of this award, but I am honored to be given this. I do have the following 7 blogs to nominate that I feel are very worthy. These blog writers are very inspirational and passionate about the subjects the write about. They always give me great ideas and sometimes the extra push I need to take a step. I hope everyone will take some time to read these. You will likely find a new favorite blog. To the winners I selected, thank you for what you do and how you help me.

  • TherExtras is a therapist with great experience and suggestions for parents of children with special and medically complex needs.
  • HauteSingleMama has an amazing & inspirational story
  • ParkerMama is a very strong advocate for her child
  • Sneakpeekatme always has something witty and positive
  • Kadiera another trach mom I can relate with very well
  • DanaSearsFam is a hoot! sassy & witty which I suspect how she stays sane with a medically fragile child, and a ridiculous medical system
  • wavetree another now former (hurray!) trach dad who obviously cares a great deal for his daughter.

While there are others that i read that are deserving as well, these stand out to me. I hope each of them will accept this award as well I hope you find a new favorite. Happy Blogging!

 

Thanks for reading my point of view, http://www.twitter.com/fatherpov

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It has been a few weeks since I have posted, but it has been unavoidable. I hope that I am comprehensible tonight. My reason for returning tonight is a 12 year old little boy, who shares the same rare disease as my son is at home tonight with his family in Hospice. With only 3,000 patients worldwide it is devestating when any of them pass. This little boy though is special. He has touched so many with his heart. One of the most thoughtful and selfless of anyone I’ve ever met. Because my son is unique in the eyes of the doctors and researchers because of his anamolies and issues it has been difficult to find anyone elase with this disease similar to him. This little boy, Nicholas was close. He too has had many of the same issues growing up. His Mom comments to me all the time how seeing and hearing things about my son always brings back memories of when Nicholas was growing up. He became a beacon. An older child with this dreadful disease that we could envision our son being. All the things he was able to do that at the moment seem like a fantasy to us. Still it provided hope for what I envisioned my son’s future to be like. Having a quality of life.

Now this beacon is in his last days, maybe hours. His Fanconi Anemia caused an aggresive form of Leukemia with no treatment options available because of a type of lung infection colonization that could not withstand the extreme stress and toll on the body of a Bone Marrow Transplant. This little boy has fought so hard and overcome so many odds for so long and now he lays waiting to be called from this earth. Seems so unfair to have to fight and suffer like that. While I have spent time at my son’s bedside on several occassions uncertain if he would survive, knowing that agony and pain makes it unfathomable to consider KNOWING your child will take his last breathe soon. My heart is heavy for this family. Why do children have to suffer and die? I have quite literally held my son for most of the day. Thankfully, at jsut 18 lbs despite being 2 1/2 years old has its advantages. Especially for times like these. Living with the burden that you are expected to outlive your child is very difficult. While you try to focus on the moment and the positive the thought still remians in the back of the mind. I wrote about that in an earlier post about making tomorrow something to look forward to rather than dread. Days like today however make that task very difficult to achieve. May God grant Nicholas a few more special moments with his family and embrace the family with peace during this very difficult period. I leave you with a story that was shared with me today about facing death.

A sick man turned to his doctor as he was preparing to leave the examination room and said,  ‘Doctor, I am afraid to die. Tell me what lies on the other side.

Very quietly, the doctor said, ‘I don’t know.  ‘You don’t know?  You’re, a Christian man, and don’t know what’s on the other side?’

The doctor was holding the handle of the door. On the other side came a sound of scratching and whining, and as he opened the door, a dog sprang into the room and leaped on him with an eager show of gladness.

Turning to the patient, the doctor said, ‘Did you notice my dog?  He’s never been in this room before.  He didn’t know what was inside.  He knew nothing except that his master was here, and when the door opened, he sprang in without fear.

I know little of what is on the other side of death, but I do know one thing…
I know my Master is there and that is enough.

I wish that children did not have to suffer with disease, sickness, pain, and death. Parents should never have to watch their child die. Please join me as I pray for this child and his family and for ALL families faced with this burden.

Thanks for reading my point of view(with a heavy heart),

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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Personifying a Paradox

I apologize for the lack of blogging the past week. It has been a stressful & busy week. Tonight I will provide you with a little reflective childhood humor.

When I was growing up I thought I knew everything! I even had a logical answer for the age old question parents always ask their children. “If your friends jumped off a bridge would you?” My response, “yes, because they must know something I don’t !”

That my friends is the personification of a paradox

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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Today was one of those days where kept biting my tongue to keep from saying, “What else can go wrong today.” That is not something you say when you have a medically complex child.  Fortunate for me none of the ever rising issues directly were related to his health. I needed a drink by 10 am it was so crazy. I’m certain the lack of sleep had absolutely nothing at all to do with making my overall mood and disposition.

It began with my son’s ventilator and pulse ox alarms ringing through the night. Of course the nurse has no idea why, but strangely after blaring for minutes and getting up to investigate out of concern when I would make it to his bedroom they miraculously ceased. After the 6th time in 3 hours I got a bit irritated and made the wife investigate afterward. How horrible of me and I apologized this morning to her for that. I was really close to just sending the nurse home and caring for him myself, as I have done on many a night. For each time she would be reading her book and my questioning of why was always answered with a shrug.

“Nice, glad to know you are paying close attention to my son.” I mumbled on my final visit.

The morning report was not any better. Apparently, the medicine port on his G-tube had, “come open, but only a small amount got on his clothing.” She did change him, but upon looking in the bed and seeing a soaked stain on the sheets off from where he was sleeping I went over to the laundry basket to see how small a spot. It was more like dollar bill size. Keep in mind my son is a whopping 17lbs and 27in long so a dollar bill covers the length of his torso. I was furious at her diminished assessment of the amount of feeds lost not to mention the fact that his sheets were still soaked.

That was followed by my son’s speech therapist calling saying that she had not left her home yet and would be 20 minutes late. Which I stated wold not work because we had occupational therapy scheduled right after. Speech decided she could overlap and co-treat, but would have to cut us short so she could catch up her schedule. WHAT? Did I hear that right? You want to slight my son to make up for your inadequacies and inability to be punctual. That’s the spirit of early intervention. Then OT calls says she is running behind as well, by 45 minutes. I nearly cancelled as we still had cares to finish before noon, when my wife would need to leave for work, both of which require two people. Trach tube change and a post surgical dilation process we are in the midst of.  Instead of 45 minutes late she ended up being 90 minutes. Then the pharmacy call telling us a prescription refill is ready that should have never been filled…long story, but essentially they shorted us 10 mL on a 1 day med, only giving us 12 1/2 days worth. I asked if we really needed to refill an 80 mL bottle because they screwed up. I told them I’d call his doctor and see if he needed that day and a half which we didn’t need, but the pharmacy found it in their infinite wisdom to refill this anyway.

Finally the day ended with my Home Health Agency case manager coming to do her bi-monthly paperwork. This is also about my only opportunity to express displeasure to anyone about our continual lack of staffing and properly trained nurses. That turned in to something that leaves me smiling at the end of the day. As usual they placed blame on everyone but themselves, including me citing that I need to be more accepting that nurses and should take the time to train them better. I’m not even going there that is another topic. Then she went into this budgetary rant about the agency being in a money crunch and how they are trying to find way to tighten up and how communication needs to improve among the office staff. I literally started laughing and said, “well the first place you should look is how to fill you open cases such as mine.” I know they have many cases that have staffing woes similar to mine. Open shifts do not make money, it is simple. The reason I laughed at her is I told her this, her boss this and even the Vice President 6 months ago that basic business dictates you have to supply the product (nurses) to the client (patient) in order to render the service in which you expect to receive payment for. She did not appreciate that and I did not care 🙂 I’ll end it here more to come later.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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I am very sorry that I have not been around the past few days. Since many of my readers are parents of children with complex medical needs and special needs I know everyone will understand how hectic things can be. More importantly was the return of my son’s mysterious apnea spells. I plan on writing about this soon, but just don’t have the time or energy today. Those that follow me on twitter already know a little about what is going on. The long and short of these episodes are he just stops breathing, he is typically awake, his SPO2 Sats plummet, has to be bagged back each time and occasionally requires oxygen for a bit afterwards. The doctors have no confirmed explanation for this. It is stressful, for obvious reasons. Having to save your child’s life is draining, but the alternative is not worth even thinking about. It is even more frustrating when your nurses freeze up or just do not know what to do because of inexperience. Makes it difficult to leave even for a minute. I will elaborate more when I’m able to write again. Today I am just mentally and physically exhausted from the stress of yesterday as it happened 12 times in about 8 hours. Thankfully today my son has not had any episodes so I believe we are done for this series. This was an easy series, all things considered because they usually last for several days. I appreciate everyone reading and just wanted to post something to ensure everyone I have not abandoned this site LOL!

Hope everyone has a great weekend. Today I am enjoying another blessed day with my son and dismissing all other responsibilities.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Frustration Overload

Yesterday I was simply too frustrated and angry to write. I knew it would turn into a rant and while I am not against that I just did not want to expose this young blog to that. In a nutshell what got me started was our new day nurse calling out. The frustration was amplified by the nursing agency’s incompetent way of not bothering to notify me that my nurse would be out. It took me calling, some confusion by the person that answered the phone and a return phone call 45 minutes after the shift was to begin to learn of her absence. Today was the same, another call out five minutes after the shift began. That makes 4 call outs in 7 weeks which after our previous nurse that missed 50 days in eight months is something we refuse to accept. One of those recent call outs cost me a job interview. That in itself was a barn burner. It just simply amazes me that we can not find a nurse that has any commitment or work ethic what so ever. My wife has not even missed 4 days from her job due to our son, who has spent half his life in a hospital. Her position like a nurse puts someone else out when she misses, so like a responsible employee we schedule and juggle around her ever changing schedule. Is it easy, not at all. It just infuriates me that the agency allows them to do this. They have to, they are desperate for nurses. Which is odd because nurses around here can’t find jobs. So they are choosing other avenues outside of nursing rather than do home care. That is fine, but when the hospitals start hiring again do you think they are going to hire a nurse that worked retail or as an administrative assistant, in a factory, or where ever for a year or more without practicing? I know I wouldn’t. Their skill sets would be so rusty and more of a liability issue. So it makes no sense to me. That is enough on that, I do not want it to progress any further. Hopefully I will feel like writing more later.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Last evening & today have been rather somber. Saturday at around 1pm 6 year old Ashlynn passed away in her mother’s arms from complications of her bone marrow transplant which she need because she had Fanconi Anemia. My son was diagnosed with this terrible disease a year and a half ago. We have already witnessed close to a dozen parents lose their children in that time. Why? You certainly try not to focus on the life-threatening aspect in day to day life. You try to enjoy each day together as a blessing. For my son though his anomalies cause him more issues than most as he has a unique presentation of FA. Researchers have commented how curious they are to learn more about which gene he has. Overall though everytime another FA child earns their wings it is tough to not think about it for a few days. It reminds us that while there have been great strides in the research of this disease which has revealed some significant general cancer findings more still is needed. With the cancer link to FA and the pathways the exist Fanconi Anemia research literally impacts & benefits the greater world population. Please consider donating to research any amount helps. You can find more info about FA and donating on the Fanconi Anemia Research Fund website. Thanks you.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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