What Now?

[Earth Mother 2 Angels]

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

When Jon woke this morning, his SATS were a little low, and he required suctioning via his trache. SATS came up, but heart rate was elevated. Temp was 98.6.

By 3:30 this afternoon, Jon's temp was 100.8, nearly 101, obviously. And his heart rate had sky rocketed to the mid to upper 90's. It even went to 100 for a few moments. What was going on?

I went to the first line of defense: strip him down and bathe him with tepid water.

I bathed him every half hour for 15 minutes. And every hour, I checked his temp.

At one point, I prayed that it would be 99.8 (to be below 100), and it was exactly that.

But then it went up to 100.2 by the next hour.

For 6 hours, I bathed Jon, prayed, and took his temperature and SATS.

When his temp came down a bit, his heart rate slowed, but when it went up again, so did his heart rate. His SATS were remaining in the mid 90's, which was good and acceptable.

Jon was getting sleepy, and he needed to be able to go to sleep for the night, without constant bathing, so, at 9:30, I prayed that his temp would be well below 100 degrees. Well, his temp is 99.0!

And his SATS are 97, and his heart rate is 87!

I'm wondering whether this is hormonal, or if Jon's hypothalamus is off kilter.

Michael spiked fevers of 103 degrees, which I managed with tepid baths, and Tylenol on occasion. He also had gelastic seizures, so I discerned that he had issues with his hypothalamus. With Jon's hypothyroidism, it's not unlikely that his hypothalamus is affected.

But there I go again ... diagnosing Jon ... only because the experts haven't weighed in with their opinions yet. Of course, Jon doesn't have a neurologist, because none of our hospital neuros accept Medicaid for outpatients. I'll try to remember to run this by the neuro on call, the next time Jon is in the hospital.

Meanwhile, we're still waiting for a new G tube.

As Jon's primary care doc likes to say: "Stay tuned."

Love & Light,

Rose

[andromeda31]

Hi Rose,

I hope you & Jon have a better day today! I normally am not up at this un-Godly hour (5:04am)....left my computer on to charge up my ipod. I always remember what I read in (if I remember right!) a book about feeding by Ellyn Satter...about division of responsibility. That was about eating, but if I remember right it was also applied to it being a parent's job to know there is a problem (with your child) and our responsibility to bring child to a medical provider and the medical provider is then responsible for solving the problem. This might have been in a different book, it's been over 10 yrs since I read that! But I always think of it when I am bringing Caitlin in and getting blown off by the doctors. And it sucks that so often this happens to us parents of medically complex children!! Praying that Jon's doctors dig a little deeper and figure out what is going on!

Lisa O.

[mg12061]

Praying that he has a better day. Keep us posted...
Mary Grace

[funnylegs4]

Hope Jon feels better.

[Earth Mother 2 Angels]

((((((Lisa, Mary Grace, funnylegs4))))))

Thank you!

What a difference a day makes!

Normal temp all night and throughout the day and SATS of 96-97, with a heart rate of 78-82. Jon is alert, strong of voice, in good spirits, and all is wonderful.

I have absolutely no idea what yesterday was about.

One possibility ... he hadn't produced much in his colostomy bag for a couple of days, and this morning, he started producing. Maybe he was constipated or had a bit of a blockage?

I haven't discarded the possibility that his hypothalamus is involved.

Jon's temperature has been elevated since he started Synthroid, and it continues, even though we took him off of it in July (or whenever it was ...). A low body temperature is a symptom of hypothyroidism, and Jon's normal temp was usually between 96.8 to 97.5. Since Synthroid, he ranges from 97.8 to 99.5. And periodically, he spikes up to over 100, like yesterday.

Where Jon used to require a substantial sheet and a decent cover to keep him warm, he now requires thin nightshirts and thin, old sheets to keep him cool.

Doesn't that sound hormonal????

Actually, it sounds menopausal and post menopausal!!! And I'm qualified to testify to that!

Obviously, I have no idea. I'm just grateful that he's fine now, still at home, and not feverish.

We just have to take it as it comes, right friends? You know. I know you do.

Thank you for your support.

Love & Light,

Rose

[funnylegs4]

Glad to hear he is feeling better. It does sound hormonal to me but I don't know much about hormones so I can't give any suggestions as to why unfortunately.

[Donna Thomson]

Hi Rose, Oh I am so glad that Jon is better today - just saw this trail of emails now. xoDonna

[Earth Mother 2 Angels]

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

A few days ago, Jon had another weird episode of an elevated temp, which came down more quickly with tepid baths. Since then, Jon has been incredibly well. Excellent vitals, awake, verbal, and all systems go. I have no explanation. I'm just grateful. It's like a vacation for us not having a constant crisis or worry with Jon.

I called the GI's office yesterday and left a message with the clueless receptionist, who said she would send the message to the doctor.

Jon's nurse will visit tomorrow to change Jon's catheter. She called me this evening and we discussed the Gtube. I found a wonderful instructional video on changing Gtubes like Jon's Gtube, which I emailed to her. It is very easy. I don't know why it is so difficult to get it done.

Jon's nurse will have a close look at Jon's tube tomorrow, and then she will either call the GI or stop by his office to get this sorted out. The clot inside Jon's tube is growing, and it will occlude the tube or stretch it to the point of rupture soon. This tube isn't in stock either with any of our local GI's, so it has to be special ordered. Only because it is 12" and they use 6" standardly now.

So, it needs to be ordered now, right now, to be here very soon to have it changed. It could take a week for something like this Gtube to be ordered, sent, and delivered. That's how things work in this medical world. Overnight shipping? No.

After watching the video on YouTube, Jim said to me, "Get the tube. I'll do it." Seriously, it is that easy.

But we need a doctor to order the tube. We can't just order one off of the internet. I don't think. Hmmm... maybe I can ...

This is Jon's only avenue to receive food, water, and medication. If his Gtube fails, it becomes an emergency. Like, "get him to the ER now" emergency. That means transport on an ambulance gurney. Pain. Pain that lasts for days.

Jon is a palliative care patient, and his Gtube is his life line. Why changing out this Gtube isn't an immediate and number one priority among his medical care providers is beyond me. And I am more than aggravated by it all.

A nurse should be able to change his Gtube, but there may be liability and protocol issues involved. I find that so hard to believe, when home health nurses insert PICC lines and catheters, which is more involved and risky than changing a Gtube. Jim and I could very probably change Jon's Gtube following the instructional video on YouTube. But we could NEVER insert a PICC line! This is absurd!

I've also been trying to coordinate a visit with Jon's primary nurse and secondary nurse, so that the secondary nurse can teach the primary nurse how to change Jon's trache. That is overdue by a month now. That may happen tomorrow, but I won't hold my breath.

I know that our nurses are overloaded and overworked. Jon's nurse told me tonight that several of her cancer patients are "very sick." This is a tough job, and she works her buns off. When she's at home, she's charting, making calls, doing "paperwork." I do understand. And I certainly don't fault her for the debacle of trying to get Jon's Gtube replaced.

The entire system is really messed up. And there just aren't enough nurses and doctors to care for the population. Cutbacks. That's the bottom line.

Meanwhile, I'm off to see if I can get a 12" Gtube on the black market! It might end up being a DIY Gtube change! All we need is some WD40 and duct tape, and then we ...

I make jokes to avoid screaming. Just so you know.

Love & Light,

Rose

[Donna Thomson]

Oh Rose, this is insane. I have changed Nick's g=tubes myself for years. It's as easy as pie. And I always have at least one extra in home stock in case his tube cracks or the balloon ruptures. This happens! You are running a home hospital and hospitals need supplies on hand. This is insane!!!!! I hope you can get a replacement tube in the next day or 2 and yes, they can fedex anything - for a price, but still, it's a small item, so it shouldn't be that much. Or your local hospital might have them in stock and you could get one from there? xoxoD

[andromeda31]

Hi Rose!

Glad Jon is nice & stable! Praying that you can get a new g-tube soon! I can't imagine waiting like that!! (well, I can, but still!) Perhaps you could get the doctor to order 2 of them so you can have a spare at home like Donna suggested...seems reasonable to me! Especially since he uses a non-standard one.

Lisa O.