Frustrations

[Earth Mother 2 Angels]

((((((HUGS)))))) To All ~

I'm pleased to report that Jon has been quite well for several weeks now. Good vitals, all systems flowing and going, a normal sleep pattern. We are practically giddy with his improvements.

After a great amount of contemplation, I realized the most attributable factor in Jon's improvements is that he is now receiving the required amount of nutrition, calories and protein in a way, which he seems to be able to tolerate and utilize appropriately.

I believe that most of his problems stemmed from his gut. We thought that he could handle bolus formula feeding, but he periodically blew up with gas and became ill. We thought that he could tolerate cranberry juice for his bladder, but he blew up and vomited. We thought that he could tolerate real food in a blenderized diet, but his digestive system and slow motility proved us wrong.

Now that he is on a feeding pump with formula, being fed 18 hours a day, with 2 hour breaks for his 3 med doses, he is managing to tolerate his nutrition and benefiting from it. It's not what we wanted or hoped for, but it is apparently what he needs.

I strongly feel that Jon's seizure in June was precipitated by malnutrition. And the guilt I feel in just writing that sentence is gigantic. But I can't dwell on it, because that changes nothing. It's not like we lived in a remote shack in the desert without professional consultation. It's taken us this long on Jon's journey to figure it out. We tried various approaches, and they didn't work. We won't go there again. Jon will be attached to the feeding pump for the rest of his life.

Jon's Gtube is 18 months old and needs to be replaced. It has a large, hard glob in the middle of it, which may eventually occlude the tube or penetrate through to cause a break in the tube and leakage. At the bottom of the tube, near the stoma, gunky bumps are gathering. This is typical of Gtubes. I'm not alarmed. It just needs to be replaced.

The GI who volunteered to visit our home last year with an extension tube for Jon's Gtube was the likely candidate to ask for a home visit to remove/replace the tube. So far that has involved Jon's PCP for a referral, Jon's home health care nurse, and her supervisor, and the GI. And nothing has been accomplished among any of them in over a week's time.

I'm trying to be proactive, to avoid an urgent need to replace the tube, but I'm having to justify why it needs to be replaced. I took photos of the tube and emailed them to Jon's nurse, with the hope she can forward them to the GI. But, seriously, the tube is 18 months old and just needs to be replaced. It's long over due. So why I have to jump through hoops to get this done is beyond me, and I'm getting pretty much fed up (so to speak) with the nonsense about it.

The GI actually ordered Jon's nurse to visit and push Pepsi or Coke through the tube with a 10 cc syringe to move the clot. Like Jim and I couldn't do that? We use his tube constantly all day for food, water, and meds! And I know about the Coke/Pepsi technique, but it will not work for this very hard pebble-like growth inside Jon's tube. This isn't our first rodeo!

For 3 WEEKS now, we have been waiting to hear from the hemotologist/oncologist regarding Jon's blood test results. The results were supposed to be faxed to him by the lab, but I also contacted Jon's PCP and asked him to forward the results to the hemo/onco. So much for the urgency of these tests and this consult, eh? And, you can just imagine what's been going through my mind for 3 weeks as to the results ... just waiting ... wondering ...

Meanwhile ... DME mix ups over mattresses, lift batteries, and oxygen concentrator/tanks, which require my repeated follow ups to resolve. It's as if everyone suddenly left their brains at the beach.

All of this leaves me to ask: Why the hell is everything up to me?

Jon's Gtube is for his life duration and it is his life line for fluids, food, and meds. If I say it needs to be replaced, then it does. Just get over here and take it out and put another one in. It takes two minutes. Literally.

Three weeks for blood test results, now entering 4 weeks, is absolutely absurd, given the stress and trauma we and Jon were put through to get these tests. He lost blood he couldn't afford to lose, and by now those results are ancient history and likely meaningless, unless he has a significant undeniable blood disorder, and if he does, we have a right to know that NOW, not whenever they get around to telling us.

I have to beg for the nurse to visit to change his trache. I'm trying to coordinate her visit with Jon's primary nurse, so that the primary nurse can learn to do it. But why am I the one who is coordinating that? It's not my job, is it?

Last year, as the ICU nursing coordinator took over for Jon's nurse, who was busy with her other patient, was reviewing Jon's chart with me on the computer, she said to me, "You have to be on top of everything."

I wasn't sure if she was being sincere or sarcastic. But I responded, "Yes, I do. If I'm not, he wouldn't be here now, at all, or ever again. Mistakes are always made. I have to be on top of everything, so I can make appropriate decisions and catch errors, before they compromise or kill him."

I guess it is my job.

Love & Light,

Rose

[Donna Thomson]

Sigh. Yes, Rose, it is your job. It's so terrible to think it, to write it now, but it's true. If we were not on top of our children's issues at every step, they would suffer or die. The health care system in my experience has great capacity to be responsive and helpful. Our problem is that we KNOW what they can provide and what they WILL provide, if we push. But 'good enough' for most is the modus operandi and even that falls short most of the time for a wide variety of reasons that you and I know very well. The problem is, how can one cope with being the sole motivator of a giant machine to do the right thing on so many issues every day over a lifetime? I don't know the answer to that question, but the answer is somewhere in the love you have for Jon. It isn't right that you have to fight so hard, but your victory is the life of your beloved that you have saved so many times. And like a scientist in the lab, you have found what works for Jon's nutrition by trial and error - but you've spent too many hours in the lab. Time for a walk in your neighbourhood, my dear friend. I hope you have only victories today and a little rest. xoxo

[andromeda31]

((((hugs)))) I was wondering how you were doing while BT was down! It sucks having to be in charge of everything. I know that is what I hate the most, wish I could just be mom and not case manager. Just this week Caitlin had an appt at school for the wheelchair to be adjusted, I totally forgot about it, which shouldn't be a big deal, but I wanted to be there to know what they did for sure. Well, the parts that I believe should have been added simply came home in their bag in her backpack-not attached to her footplate! They were footplate extenders. Got Caitlin's dental surgery this coming week and Tyler has an ENT consult the week after so I put them on top of one of my piles to deal with later. It just would be nice to have someone else to chase after some of this stuff for sure!!! I feel a little bad as we had waited 3 months for those footplate things and she sure isn't going to get shorter! Ugh. And that is so not as urgent as something going into a body, like Jon's gtube and trache!!! Just crazy though to think I can order a dvd from amazon and it comes 2 days later but the leadtimes for anything medical is simply ridiculous! Hope you can at least get out for a walk to have a break and de-stress...I had my first yoga class at the Y today and it was so nice to get back to it. Used to do it 3x/wk at the gym I quit in june and didn't realize how much I missed it.

Lisa O.

[Earth Mother 2 Angels]

((((((Donna & Lisa))))))

This is how I see it:

My job is to recognize a need and inform the appropriate people to get help to fix that need.

Once those people have been informed, it is their job to make that happen. It's their job to fix the need.

Because they don't do their job, I end up doing their job for them. And that is NOT MY Job!

My job is to say: "He needs a new Gtube. He needs a new Trache." Their job is to get that Gtube and Trache and put those puppies in.

Yes, Lisa, Case Manager is spot on! Even when we have case managers, I still have to manage Jon's case!

We all should be the Supervisor, not the Case Manager.

You are so right, Donna, that Love is the motivator for all things. And I'm not griping about the fact that I have to be on top of things all of the time, I'm complaining that others aren't doing their job, alleviating some of the burden on me.

For example, if the blood test results are in, tell me what they are! Why do I have to keep calling you for that information, doctor? You know how important it is, and that I'm worried, but you let me stew in my own juices for a month, even after I ask you for more information? Why is it up to me to ferret out this vital information on my son?

Next week, I'll start prodding again, and I'll hope that I make some kind of progress.

I am walking in the mornings again, and it's wonderful to have that time and to be outside. It really helps me to keep my balance.

Thanks for your positive thoughts and energy ~

Love & Light,

Rose

[Donna Thomson]

Yes, and what makes the whole situation even more infuriating (literally adding insult to injury) is that because they know you are on top of everything, they look at your son's name on a file and think, "I'll just leave that, because I know 'mom' is going to call about it anyway". So, effectively, if you do nothing and expect them to do their jobs, you risk them messing up, which they will do from time to time. If you manage them, they will sit back and be managed. You are stuck and I guess we all are who manage all this, except that I don't do the hands on care anymore, just the managing. But I remember doing it all until recently....it's infuriating and nearly impossible. I'm using my telepathy right now to give you a cyber-hug, Rose.

[mg12061]

So glad to hear that things are going well. It's funny I have been just recently been talking about how tired I am of trying to keep track of everything! It's a full time job. I used to think that if I (as you said) I recognize a need, which usually means and appointment with a specialist, that this specialist would keep track of what's needed to be done and redone as far as tests, blood work, xrays,etc. Not so... If something isn't done when it should now I feel guilty. It's just so much to remember when you have a long list of specialists. I'm hopeing that I've found a way to address the fustration. I've started the process of making appointments for Kathleen at the Down syndrome clinic at Boston Children's Hospital. To start she will see a developmental pediatrician(who may see a need for certain other appointments) but I have requested appointments with a urologist,nutrionist,orthopedic,dentist, and hearing a hearing test. All to be scheduled in the span of a day or 2. I think it will be worth the trip to Boston to have all her care in one building and be able to get it done in a day or 2. And hopefully they will be able to keep track of all her present needs.
Mary Grace

[Earth Mother 2 Angels]

((((((Donna)))))) Got your hug and back at ya!

((((((Mary Grace)))))) Excellent idea to gather up as many specialists as possible to assess Kathleen and weigh in on her medical needs. I gather that the developmental pediatrician will be the lead doc, who will tie all the disciplines together. I am praying that you return home with a ton of information, guidance, and a feeling that Kathleen has been evaluated thoroughly.

Love & Light,

Rose