More Fuel to the Fire

Jack's teacher cancelled today because she had to go to a bridal shower. She cancelled last week because she had a staff meeting and she cancelled the week before because she had school pictures. Oh, and she hasn't once asked to reschedule her missed sessions.

Needless to say "THE" email ending the charade was sent tonight. I'll keep you posted.


And, here is a glimpse into the life of a kid of a blogger (he's learned that every time I pull out the camera, he's likely to end up on the "computer")

Photo and video editing at www.OneTrueMedia.com

Looks Can Be Deceiving

Is this not just the most deceiving picture of my little imp . . .



I about fell off my chair I was laughing so hard when I saw this picture. He's the picture of sweetness, eh? Out of all my kids, this is my first kid to wear a cap and gown for Kindergarten graduation. I don't typically order school pictures, but I just might have to order this one for the humor factor.

We had a quiet weekend -- Jack is doing fantastic. My brother from NC and my sister from NJ are both coming into town this coming weekend. My sister is actually starting her new job back here, but her family won't move out until the end of June. I'm soooo happy to have my sister back home!

I'm juggling a couple of projects right now, so I haven't yet composed my "termination" letter for the school district. I'll probably let them finish out this school year and then cut off services after that.

In the meantime ........ onward!

The Real Deal

Here's the "real deal" -- the people who really care about helping Jack reach his full potential.



We had a great training session this evening. It seems that after each session there are more questions than answers. But, we are making progress getting the system set up so that it meets Jack's needs. It's just amazing all the things this system will be able to do. Jack was able to "launch" the internet today. We have "Google" set as our home page but that didn't do much for Jack. I also found out that we can download movies directly to the computer and Jack will be able to select and launch the movies himself. Very cool!

Onward ............

Charades

Charade: a blatant pretense or deception, esp. something so full of pretense as to be a travesty.

Consider the following:

The school district. Jack’s team put together an IEP that purports to meet Jack’s educational needs. Only two years ago Jack received 2 hours of speech therapy, 1 hour of occupational therapy, 1 hour of physical therapy and 2 hours of academic services per week. This year, the team decided that Jack only needs one hour of occupational therapy a month, 2 hours of academic services per week, zero speech therapy hours and zero physical therapy hours. Yet, Jack is the same kid he was 2 years ago, with the same potential and with new, state of the art equipment that has the potential to open up a whole new world of communication for him. Despite Jack’s new state of the art equipment (that the school district played no part in helping us get), the team gave Jack no speech therapy hours to help with his communication skills. But, they do have an IEP in place (that I signed) that gives the illusion – at least to the school district – that they are meeting Jack’s needs.

The DME (durable medical equipment) company. Today, I received a voice mail message asking me to call and set up a time for the RT to come out to the house to check Jack’s vents. This is the same company that argued with us for hours on Christmas Eve before it would come out and replace Jack’s ventilator that completely stopped working. This is the same company that fought me about bringing out a new nebulizer machine when it died on us over a weekend that Jack was receiving breathing treatments every 4 hours because he was so sick. This is the same company that repeatedly makes life difficult every time we call when Jack’s (life sustaining) equipment is not working. Yet, this same company wants to come into my house and invade my privacy for the sole purpose of having its records reflect that Jack’s equipment is working – at least at that point in time.

The nursing agency. Several weeks ago I received a letter from Jack’s nursing agency informing me that there was a recall on the model of ventilator that Jack has. The letter referenced a list of serial numbers for those vents included in the recall, yet failed to attach the list of serial numbers. What I didn’t understand was why the information was even coming from the nursing agency in the first place and not the DME company that supplies and services the ventilators. The letter provided absolutely no useful information to me. It served only to create stress by notifying me of a problem that may or may not apply to my situation and then failed to offer any information on who to contact about resolving the problem.

Each example cited above is a “charade”. Each example constitutes a blatant pretense of being concerned about Jack’s well-being when the reality is - the IEP, the monthly ventilator check and the letter are nothing more than a CYA for each party involved. It has everything to do with protecting themselves and very little to do with taking care of Jack.

After nearly ten years of the charades, I’ve had it. Simply put … I’m tired. I’m physically tired, I’m emotionally tired and I’m tired of being angry all the time. I’m tired of everyone telling me what they are going to do and what I am going to do. I’m tired of giving of my time and energy and I’m tired of having my space invaded just so everyone else looks good on paper – so that everyone but Jack is taken care of.

I’ve decided, after talking with Jack’s DDD support coordinator and someone from our vent dependent program, that I am definitely done with the school district. I can’t realistically be done with the nursing agency or the DME company. However, I can put some space between us. I’m not returning the phone call and I called the nursing agency and informed them that their letter was worthless. Does this make me feel better? Does it make me feel empowered? No, it does not. This isn’t about “winning” or having the last word. It is about not participating in the charade any longer. It’s about conserving my energy so that I can get through the next however many years with my sanity in tact. It’s not my mission in life to change “the system”, however, I can - and do - refuse to promote it.

Without question, there are MANY good people in Jack’s life who do truly care about him and who give it their all to make sure Jack reaches his full potential. These are the people I choose to give my time and my energy to. These are the people who I allow in my house and in my space and these are the people who I will be forever grateful for.

And with that .......

I really am done!

I'm Done ...

As much as I've tried to ignore my loathing of the school district since Jack's IEP in March ... I've now had it. The fact that no less than 7 people are re-arranging their schedules to attend the training session on the eye-gaze system this week except for the therapists from the school district was the straw that broke the camel's back. Jack's IEP is a joke and it's clear to me that the school district doesn't have any interest in helping Jack achieve his full potential. I'm tired of getting the school therapists up to speed. It's all backwards -- they are the ones who are supposed to be the experts. Jack has great therapists through our Department of Developmental Disabilities and he will be eligible for therapies through DDD at least until he is 18 - maybe longer. I'm just not sure if there will be an issue if I tell the school district to take a hike. I'd like to see them claim that Jack must attend "school" -- the two whole hours of "instruction" they give him a week (when they don't decide to cancel because something more important comes up.) Maybe we'll just take the position that we are home schooling Jack ... but, whatever you do, don't tell Eric that :-)

Then there is Hilary. She is supposed to get a half hour of speech therapy a week which she hasn't had on a consistent basis the entire school year. I got a message to call and set up a time for her IEP for next year. I think I'll tell the high school special ed coordinator to take a hike as well.

What I've experienced with both Jack and Hilary and our school district just confirms that we made the right decision 12 years ago when we picked up and moved to St. Louis. I can't even imagine how Hilary would be doing today if we had stayed here in Arizona, but I have no doubt she wouldn't be fully mainstreamed in high school with no support services. No interpreter, no resource classroom and no special accommodations. All of which is remarkable for a deaf kid!

I've been stewing about this all weekend. I'm tired of the charade and I'm not going to play anymore. As you can see, my way of dealing with conflict is to avoid it. I'd rather cut the school district completely out than fight for what Jack is entitled to. I actually prefer to look at it as choosing my battles wisely. I realized years ago that I can't take on every system I encounter as the parent of a chronically ill/medical complex/special needs child. If I really believe something is worth fighting for, I'll do it. I just don't think the services the school district (should) provide are worth fighting for in Jack's case. In any event, it should be an interesting week. I should add that our school district has a reputation of being one of the worst when it comes to meeting the needs of its special ed students, so it's not just my kids who are being short changed.

We did have a GOOD weekend with Jack. He is tolerating being in his wheelchair again and he really enjoyed getting outside for a walk yesterday. I don't know if I mentioned that he was positive for pseudomonas (which shows up as a lovely bright green slim in his vent circuits). He will be on an inhaled antibiotic for a month. I'm really not liking this road we are heading down because Jack had issues with pseudomonas the entire year leading up to his spinal fusion surgery and we could never get rid of it. It was only after being on all the IV antibiotics from his surgery that he finally kicked the pseudomonas. However, I'm not "going there" in my mind just yet.

I'll leave you with a picture of Eric from when we went shopping today. He grabbed the dummy out of the display window and sat down with it for a friendly chat. What a goof!



Have a great week!

Sibs

I'm not sure who is helping who here

Bragging Rights

This week, I had the pleasure of receiving in the mail, the following letter (in part):

To the Family of Mary Schrooten: As this successful school year winds to a close, it is time to recognize and reward those students who have demonstrated excellence in academics. Mary is one of those students! On behalf of the staff of Hamilton High School, I would like to invite you to the 9th Annual Academic Awards Ceremony. . . . Mary is being recognized for her academic success this year.

Mary is truly my "easy" kid and such a joy to have around. Other than the fact that her room always looks like a tornado hit it, she gives me almost no trouble. She is always willing to help me out and she has such a tender heart for "special" kids. I think I'll keep her!

You think I'm kidding about her room?
(this is one of her better days - you can actually see the floor)

Then there are her things that never make it up to her room

~~~~~~~~~~~~~~~

In other news:

I was able to get most of Jack's team together for a training session on the eye-gaze system which is scheduled for next week. I'm hoping to get some renewed enthusiasm for learning and using the system from Jack's team because I cannot do this on my own. And, of course, the only people who couldn't seem to accommodate their schedules to make the training session were the therapists from the school district. I sent off a not-so-nice email letting them know that I wasn't surprised in the least that the school district was the one member of Jack's team that once again managed to let us down. To be honest, I am very close to severing ties completely with the school district. What bothers me more than the fact that they don't provide adequate services (and are so in violation of Jack's IEP it's ridiculous) is the fact that they actually believe they are helping Jack and appropriately meeting his needs. Who do they think they are kidding? Certainly not me!

And ...

I've come up with a really cool idea for a project that will be an extension of my "Dear Future Physician" letter. Stay tuned ............


Have a great day.

My Letter

Check it out - far right column under and also worth noting ... first item.

Hanging Out

Jack and I are hanging out together this evening. Mark took Hilary and Eric to the movie and Mary is spending the night at a girlfriend's house. I had a nice day. I met my dear friend, Mary, for lunch at my favorite restaurant - the Cheesecake Factory. I hope you all are having a great weekend. I still haven't finished my taxes. Tomorrow. Really, tomorrow is the day!

Peace my friends.

My Night Owl

It’s after 10:30pm and Jack is still awake. No matter what time he wakes up in the morning, Jack rarely falls asleep before 11pm. I told him last night that this has got to stop because I need to get to bed earlier. I try and have his night time routine done by 9:30 or 10pm, hoping that once I turn off the light he’ll go to sleep. Jack, however, has a little trick for getting me back into his room – he finds a way to increase his heart rate. His heart rate will be in the 70s all evening long, but as soon as the light goes off, his heart rate jumps to the 120s. There’s nothing wrong with him that I can tell, it’s just his way of telling me to “get back in here”. It always works. I suction and get nothing, I check his diaper – it’s dry. I check his positioning, the vent circuits and anything else I can think of and everything usually checks out fine. It’s now to the point where I lay down with Jack every night until he falls asleep.

As I lay in the darkness of Jack’s room, the sound of the ventilator menacingly shatters the silence of a sleeping household. As I listen to the ventilator, I think to myself, “How did we get here?” How did that little boy in the first picture on my blog banner become this child sleeping next to me. How? It’s in the darkness of Jack’s room as I lay next to him, holding his hand and listening to the rhythmic whooshing of the ventilator that the tears no one ever sees fall.

The highs and lows of this journey are so extreme and unpredictable. It was only two weeks ago that I was on cloud nine – so happy and excited about Jack’s new communication system. My state of happiness was so short lived. The joy of knowing what is possible for Jack with the new system is tempered by the reality of what is required to make it possible. A lot of work, a lot of time and a lot of patience - none of which are at the top of my “best attributes” list. If only I could close my eyes, click my heels together and wish it to happen.

Not too long ago, I was told by someone that I was one of the most unselfish people he knew. While I appreciated the kind words, nothing could be further from the truth. If I was unselfish, I wouldn’t hate the ventilator, I would be thankful for it because it is keeping Jack alive. Instead, all I can focus on is how it disrupts my life. To me, the ventilator symbolizes everything about this life I hate – confinement, dependence and lack of control. It is a constant reminder of what has been stolen from me, from Jack and from my family because of Jack’s disease. If I was unselfish, I would stay focused on all the wonderful things Jack will be able to do with his new communication system instead of on how much work it's going to take to make it happen. If I was unselfish, I'd stop dwelling on how unhappy I am and appreciate the fact that, in spite of it all, Jack is happy.

My secretary told me today that I was grumpy. You think so? I used to be pretty good at separating my home life from my work life and putting on a good front at work. Not so much anymore.

Tomorrow is another day. Hopefully, this roller coaster I’m on is headed UP, on its way to a happy place. If not to a happy place, at least to a place of contentment. Contentment is easier to sustain.

**************
It's now after midnight and Jack is finally sleeping. Time for me to steal away to the couch in the family room. The only place in the house where I can sleep and be close enough to hear Jack's alarms should they go off, but far enough away that I don't hear that damn ventilator.

Update

Not much to update, but how do you like my new blog look? I spent most of the morning working on it and practically all day hanging out in Jack's bed .... me on my computer, Jack watching TV (and me). I also got everything put together so I can get our taxes done, I worked some on a video I'm putting together for an upcoming conference and I edited and finalized my "Dear Physician of the Future" letter to forward to Dr. M for "publishing". So, while I was on my computer all day, I wasn't completely unproductive.

Jack had a good day and I do feel bad about not getting him dressed and out of bed for a bit. I could say I'm lazy, but the fact is, I'm tired. I'm always tired. And it's so exhausting to get Jack out and about. Jack is just lucky his parents go to work five days a week, or he'd probably never get out of bed. Thankfully, Kristi is working a few hours tomorrow -- she always gets Jack up and moving. Tomorrow is my day to hike, so I'll be up and moving as well. The only bummer is, I have to get up at 5am. Wonder why I'm tired?!

Not much else to share, well ... except that our beta fish - "Finny" - died today (toilet-side services already held, sorry). Mark was all worried about telling Eric. Eric could have cared less. When Mark told him about Finny, the first thing out of his mouth ... "are you going to order me that book or not?" (he wants Mark to order him some video game book). On a side note, Eric asked me the other day "How old do you have to be to be a grown-up?" He was mad because he had to go to school, so apparently he was thinking ahead to when he gets to make all the decisions. Ahhhh, life is just so backwards. What I'd give to not have to be making the decisions all the time!

That's all I've got for now.

More on the Eyes

I emailed Jack's St. Louis ophthalmologist to tell him about Jack's eye gaze system and to let him know that we had Jack using the device at a distance of 2 feet without his glasses. I wanted to know what the optimum distance is for Jack with and without his glasses. He told me that with glasses Jack sees best at 2 feet and without his glasses he's not seeing much at 2 feet because he is so nearsighted. My question - why would you give Jack a prescription for glasses that gives him his best vision at only 2 feet in front of him? What does he see with his bifocals ... 2 inches in front of him? It makes me sad having just realized that Jack spends the majority of his day in bed watching television and he can't even see the darn thing. What's worse is that Jack doesn't even know that what he is seeing is not as good as it gets. It's just not right that this child cannot talk to me!

So now I have to psych myself up to call the local ophthalmologist and ask him for a new prescription for glasses that will allow Jack to see the distance from his bed to the TV. We'll then change out his glasses depending on what he is doing. Hopefully the guy won't give me any grief. Eventually, Jack will probably need new lens implants that will provide the best vision at what we determine to be his most ideal distance. I'm thinking it will be the distance to his eye gaze system. I anticipate several trips to St. Louis over the next year or two.

In other news .... I shared my "Dear Physician of the Future" letter with one of Jack's former STL docs (who is now the Director of Critical Care Medicine at Children's Hospital of Los Angeles) and he wants to share the letter on the PICU listserv and post it on a website for pediatric critical care docs. He said "you could reach thousands of doctors by this route". He is a doctor who totally "gets it".

That's the update from here. Life continues to move along at breakneck speed here at the Schrooten Ranch. Where do I get off? I am so ready for a vacation all by myself for a few days!

Peace.

Bum-Day

Today, I got up early and did my 2 hour hike. Other than that, I've been a complete bum today and have done absolutely nothing productive. Kristi didn't work today, so there went my excuse for going into the office. I spent a good part of the day laying in Jack's bed napping while he and Eric watched Sponge Bob DVDs all day. It's now 10pm and I've got mountains of laundry calling my name. I did have a fun weekend spending time with my nieces, Bridget and Kelsey, who were visiting from New Jersey. Bridget attends Rutgers and Kelsey was out here looking at colleges for next year. If things go according to plan, their mom -- my sister, Maureen (and her husband), will be moving back home in a few short months. I'm so happy about that!

Here are some pictures of the girls I took this weekend.

Kelsey, Mary & Bridget

Eric has become a mini-Hilary and is spending all his spare time drawing. These kids clearly take after their father because I can't even draw a decent stick person. In these pictures, Eric is drawing caricatures from some Nintendo game-guide book. He is also really into drawing Sponge Bob and all his cohorts.

I don't think I have anything on the calendar this week, so I'm hoping for a quiet and uneventful week. Wishing you the same.

Ciao.

Just the Beginning

The video clips I took today during the set up and trying out of Jack's new communication system aren't too impressive. Keep in mind that there is a lot of work yet to be done on our part to get the system set up so that it is Jack friendly (i.e. programming pictures and commands that mean something to Jack) and a lot of work on Jack's part to figure out how to use the system. The biggest thing for Jack to learn is that he has to keep his eyes on the object long enough to activate it (set at 1.5 sec right now). It's an extremely complex system that offers more possibilities for communication than we can even imagine right now. It also has wireless internet capabilities which will really open up a whole new world of where we can go and what we can download. Jack can even send email with this system. Very cool!

I took the somewhat boring video clips, set them to some music and viola' -- here is a glimpse of a day in the life.

Make an on-line slide show at www.OneTrueMedia.com

(Note how excited our dog Rylie is about the whole thing :-)

Thanks so much for caring about my beautiful Jack!

Back to "Normal"

After a two week and one day Spring Break -- my kids are back in school today. It's back to our normal morning madness. It was nice to be able to sleep in a little longer the last few weeks, with Jack being sick. Eric reminded me this morning that he hates school (what he really hates is having to leave the morning cartoons he is watching). He told me that "kids who are homeschooled are so lucky". When I told him that I couldn't home school him because I have to work, he told me I could homeschool him at night. He's only six years old and he thinks he's ready for night classes!

On the Jack front, I dare say he is almost back to baseline. I never did hear if Jack's pulmonologist called in a new prescription for the antibiotic I spilled or if insurance is going to pay for it. When I called yesterday, the doctor hadn't returned the pharmacy's call regarding the need for a new script. Today, I never got around to checking into it. Que Sera, Sera . . .

AND FINALLY ............... Jack's eye gaze communication system will be delivered tomorrow. Amen! We are having a team meeting (OT, Speech, me) to all learn how the system works. I'm cautiously optimistic that this will open up a new world for Jack. Here is a link to a news story about a man who has ALS and who uses an eye gaze system. Eye Gaze Communication This person uses his eyes to spell out the words he wants to both speak and write but cannot due to his disease. Incidentally, our dear friend Peggy is one of the nurses who cares for this person (whose name also happens to be "Jack"). You can learn more about him at his website: www.extrahands.org. There is an interesting story behind the name Jack and its connection to Peggy that I will share someday.

I don't expect Jack to be spelling out words from the get go, but hopefully ... someday. There are a lot of features this system offers (including the ability to turn on the television remotely). We have lots to learn. I'll try and get some video tomorrow. Hopefully, Jack is feeling well enough to have a productive training session.

Stay tuned .........

Saturday Celebrations

Today we celebrated all the March birthdays in my family - which included Eric, Mary and my nephew, Steven. Everyone came over to our house for the party. Tomorrow, they all get to come over again for Easter dinner! We didn't combine the two events because there were people who could come today, but who can't come Easter Sunday. Besides, we like to party around here.

Jack is doing better. He's off oxygen, but I'm still suctioning a lot of blood - which is always worrisome. I'm hoping if he does have an infection, the Cipro will take care of it. It would be helpful, however, if I had enough Cipro to complete the entire 10 day course. Stupid me knocked over the bottle this morning and lost several doses all over the bathroom countertop. I called the pharmacy and they said that Jack's doctor has to call in a refill and, even then, there is a possibility that insurance won't cover it. I'm not going to pay out of pocket for the stuff because it's expensive. We'll see what happens on Monday. Still swimming .........

This morning I caught Mary and Eric entertaining Jack as they danced to the music on the radio.

Make video montages at www.OneTrueMedia.com

More pics from today:

The girls watching a "chick flick" in Jack's room

The birthday kids

After everyone left tonight, I sat down on the stairs to rest for a minute and Eric joined me. I told him I was so happy that he was sitting with me, especially since he doesn't like me. He told me "I DO like you ... when I tell you I don't like you, I'm usually just kidding". Well, it's good to know that most the time he's just kidding!

~~~~~~~~~~~~~~~~~

HAVE A HAPPY EASTER EVERYONE!

Just Keep Swimming

Jack is not much better, but he's not worse either. So, we'll just keep swimming . . . with a smile on our face.


(a lame update I know, but I'm tired of hearing myself whine!)

Meandering Update

I noticed that my last post didn’t make a whole lot of sense when I talked about what happed that day and then proceeded to tell you what was coming up in the day ahead. Problem was that I was typing the post after midnight, so I was talking about two different days as if they were the same day. Not that anyone even noticed ...

I took Jack in to his pulmonologist today and it was essentially a waste of time. Kristi and I both agreed that we gained no useful information from the appointment. He gave us a prescription for Cipro - why, I don’t know because he didn’t really say. We couldn’t find a pharmacy that had Cipro on the shelf, so it’s on order and won’t be ready until tomorrow. The pulmonologist also suggested that since Jack had a flare up of pseudomonas - almost two years ago - we could give him TOBI aerosols if we wanted. That is, if the TOBI we have left from two years ago hasn’t expired. He didn’t really make a convincing argument for putting Jack back on TOBI, so I’m passing on that suggestion for now. I generally like this doctor, but the appointment today was very disappointing. I didn’t get the feeling he was really focused on Jack at all. I guess that’s the consequence of not seeing doctors on a regular basis – they just don’t seem to connect with Jack. I really miss our St. Louis docs at times like this.

I called the RT manager at Apria regarding last weekend. I suggested that if they are going to require a new prescription every year for certain equipment, then they need to put in place a policy that requires them to call us when our year is up so that we can get the prescription on file before a need to have situation arises. She told me that the RT was wrong for not getting us the SVN machine because Jack was a vent kid and they would have been fine with getting the prescription on Monday. She said she’d talk with the RT. The guy needs more than a talking to, he needs an attitude adjustment (and a little compassion wouldn’t hurt either).

I was thinking about how little it takes to suck the life out of me anymore. It really shouldn’t be that big of a deal when Jack gets sick. Kids get sick and parents just deal with it. Yet, I’m just so spent, on so many levels. I guess my “normal” takes more out of me on a daily basis than I’d like to acknowledge. I think it’s fair to say that medically fragile/chronically ill kids make for emotionally fragile and chronically tired parents. Oh well . . . que sera, sera. Not much we can do about it except “just do it”.

Today we had fun visiting with one of Jack’s former nurses from St. Louis. Holly was Jack’s primary nurse for the first two plus years of his life. Holly, her husband Scott and their two boys are vacationing in Phoenix this week and are staying in a house just down the street from us. We love Holly and her family and are so lucky to count them among the many new friends we gained from having Jack in our life.

Holly and Jack circa 1999

Holly and Jack circa 2008

Last, but not least, today is Mary’s 15^th birthday. She is now counting down the months until she can get her driver’s permit. Mary is my easy going, happy-go-lucky and social kid. When Mary was little, we called her "Tigger" because she never walked anywhere, she bounced every where she went! Today, she spent the day plopped on the couch playing her new game -- Guitar Hero.

Happy Birthday Mary!

Have a great rest of the week my friends.

Better Day

Jack had a better day today. He's still requiring O2 and I'm suctioning lots of bloody secretions (sorry if that is tmi for some of you), but he didn't seem as miserable today. I do think I narrowed his area of pain down to his left shoulder/arm. We'll continue to watch his reaction to movement over the next week and, if he still acts like it hurts, we may be off to the orthopod for an x-ray. I think I'll at least call his pulmonologist today to make sure he doesn't have any concerns about the bloody secretions. I'd much rather deal with a physician's office during the week than an ER on the weekend.

I had the unpleasant experience of dealing with my DME (durable medical equipment) company again today. Jack's nebulizer machine (called an "SVN" machine here) has been used so much lately that it died on us today. I called the respiratory therapist (“RT”) on call and told him I needed a new SVN machine today. Any guess as to where this is going? The first thing he wanted to know was when we got the machine. I told him I didn't have a clue. He then asked if it was over a year ago? Not knowing the consequences of my answer, I answered truthfully and told him "yes". Big mistake. Since it was over a year, he told me I needed a new prescription for the SVN machine before he could bring it out, which he said I could do tomorrow. I told him that was BS, and that I would get him a prescription for the machine today and he had better be prepared to get me a new machine TODAY! If I had thought of it at the time, I would have asked him why they send me nebulizer kits for the SVN machine every month if I don't have a current prescription. I can guarantee you that they don't have a current prescription for half the supplies/equipment Jack gets or rents every month. The fact is, this guy was trying to get out of having to bring me a machine on a Sunday. Fortunately, the on-call triage nurse for Jack's pediatrician's office was extremely helpful in making phone calls to the on-call pediatrician and was able to get a prescription faxed to the DME today. I can also guarantee you that the idiot wasn't in the office to even see the faxed prescription that he claimed he needed to get me a new machine. This guy would rather have had Jack end up in the ER because I couldn't give him breathing treatments -- which are no doubt what is keeping him out of the hospital -- than do his job and take care of his customers. This kind of stuff just infuriates me. Several years ago, at my request and after meeting with me, one of our State representatives introduced a Bill that would require DME companies to be licensed. Somewhere in the process another piece of legislation got attached to my Bill and it never made it to the full vote of the legislature. I've not had the time to follow-up and try and get it back on the table for consideration, but I really think it's something that needs to be done. We have absolutely no recourse against the type of lousy and potentially life-threatening customer "service" I received today from a company that is in the business of providing life support equipment. If they had to be licensed and ran the risk of losing their license - and ability to do business - they just might think twice before they tell me they'll take care of it tomorrow. If only there were ten more hours in the day, I could add this to my “to do” list.

And, if that wasn't enough, I realized that Jack's prescription for Tamiflu was almost gone and there was no way it was going to the last the entire 5 days that the prescription was written for. In reading the bottle, I saw that they only gave us half the dose. I called the pharmacy and the person who answered the phone told me that maybe it had something to do with insurance. Seems to me that if insurance only allowed half the dose, we should have at least been told when we picked up the prescription. When Mark picked up the prescription, nothing was said. The pharmacist ran the prescription through again and, what-do-you-know, it went through for the full dosage. When I picked up the other half of the prescription, I reminded the pharmacist that it was a serious violation to not fill a prescription as written. He again told me that maybe it had something to do with insurance the first time it was filled. Nevertheless, if that was the case (which it clearly was not), they then had an obligation to at least tell us we were not getting the full prescription and not just send us on our merry ignorant way.

On a happier note …..

Happy St. Paddy's day to y'all. Mary has to be up and on the road by 4am to start her day of dancing. She starts the day dancing at two early morning venues, both of which will be aired on our local television stations. After that, she has two or three other performances and then finishes with a private event tonight. She will have been dancing for almost 16 hours before the day is over. She should be real pleasant when she gets home tonight, eh?

May green be the grass you walk on,
May blue be the skies above you,
May pure be the joys that surround you,
May true be the hearts that love you.

**********

Some may say the glass is half empty,
Some may say the glass is half full,
But the Irish will forever say
"Are you gonna drink that?"

**********

Sometimes This Is Just So Difficult

It’s so difficult …

>To look into your child’s tear-filled eyes and pain-filled face as he silently pleads with you to make it all better and you don’t know what’s wrong. You know his bones are the size of pencil lead and it seems like when you move him a certain way, he cries. Yet, he also struggles to breathe because his lungs are filled with secretions. Is it his bones, the hardware in his back, or the pain of breathing that makes him cry? You just don’t know.

>The aching back you have after an entire day of leaning over your child’s bed suctioning nonstop, changing diapers, adjusting his position, putting DAFOs on, taking DAFOs off, giving pedialyte and one medication or another every few hours, giving breathing treatments, the Vest, the cough assist, stroking his head, holding his hand, and just trying to make him comfortable.

>When your 6 year old tells you he doesn't like you because the only person you pay attention to is Jack when he doesn’t understand that if you don’t pay attention to Jack, he will end up in the hospital or worse.

>Deciding at what point the vent settings are too high, the supplemental oxygen is too high and your inability to make Jack comfortable requires that you seek medical help. Knowing that if you decide to walk into an ER with Jack you’ll have to fight to keep him from being admitted. Knowing that you hate hospitals and the way the people in them treat you. Knowing that you have to be careful not to jeopardize Jack’s life because of how you feel about hospitals and medical professionals.

>Being so tired that you can hardly keep your eyes open, but knowing as soon as you start to drift off, the pulse ox will alarm and Jack will need suctioning, or it will be time for another breathing treatment. Knowing that the only day of the week you have to catch a few extra hours of sleep is Saturday and that opportunity is now lost and you will feel the consequences dearly come the middle of the week when you can barely drag yourself out of bed in the morning.

>Just wanting to crawl in a hole and cry because you are so tired, so sad, so scared and just so damn sick of living this way of life.

Sometimes this is just so difficult ………