More changes and workarounds needed

[Narrowminded]

Hi All,

Well, after all of this time, we are back into progressions. Our newest development is that Brian is now getting slightly tachicardic when I feed him. We've had to slow that way down. I may have to figure out how I can thin his food enough to go back to the pump.

I did an experiment today, I still had some canned Glucerna here so I tried that at lunch to see if maybe it was something in the food I make. Nope, same issue. So note off to his physician in the morning.

Then, I noticed that his Button is leaking, both around the stoma area and around where I put the tube in. The bad thing is, this particular button has a hard interior piece. In order to replace it, he will need an endoscopy. Now I need to try and get a physician to take him sight unseen. And I want to switch it to a regular type of tube, so that if a change is needed it is easier to accomplish.

I know I can just ask his neuro to deal with that for me, but he really doesn't want to head to that hospital. Long ride. So, I'm going to try for one that's closer to home. Hopefully that will work.

The other issue is getting him there. Ambulance would be the best way, but that's pricy unless a physician orders the transport or it's an emergency.

Always something to keep us on our toes.

Has anyone esle's PALS experienced the tachicardia when eating? If I give him some xanax it settles him and the HR. It's not high enough to take him to the ER, but high enough to bother him. Usually about 120 bpm

Hugs,

Sue

 

[KateEmerson]

Hi Sue, Job has had numerous periods of tachycardia but none that were that clearly " food" related. Usually we were left making our best guess as to the cause....anemia effecting exercise tolerance, leaks in the vent circuit, and who knows what. There was one period when after lunch,his biggest meal of the day, we would put him in his recliner and he would expierence some combination of shortness of breath, elevated bp, and tachycardia. RT's hypothesis was the stomach pushing up into the lungs. I have no idea. We used metoprolol when he had these episodes which brought his heart rate down and made him comfortable. Wish I could be of more help. Kate

 

[gooseberry]

Steve had it. It was because he was struggling to breathe and that makes your heart pump faster. The put steve on coureg since he was running 125 bpm normally

 

[KateEmerson]

Actually Sue, Gooseberry gave me the courage to give you my opinion on the source of almost all of Job's tachycardia episodes.....his brain's recognition of not having enough oxygen. Since he has been anemic from day one at various times when some part of his body demanded more blood/ oxygen ( using the commode, excercise, or a big meal) he didn't have enough red blood cells to carry the required oxygen. His O2 was normally at 98. The only other cause was when his ventilator settings or circuits werent giving him the amount of air he needed. Is Brian anemic?

 

[Narrowminded]

Kate, I have no idea if he is anemic. He's on the vent, so I would not expect shortness of breath. When these episodes happen I use his pulse ox to check he pulse and O2 at the same time. His O2 remains at his normal 98.

I guess the stomach could be pressing on his lungs, but not sure about that.

So I did not reach out to the Neuro today. Instead I pulled out the kangaroo pump, set that back up and used the Glucerna at 100cc/hr. That went very well except at one point this afternoon. He asked me to stop it. Checked his pulse, up a bit. So I set the machine to resume after 30 min. I checked his pulse then and it was back to normal, feeding resumed and has been good since.

Then I scoured the internet and checked out several different formulas. Decided to order just one case of a 2 cal/cc formula to try. This way, there will be less volume so I can run it even slower and still get in what he needs during the day along with some short breaks in there. If that agrees with him, I will get his Neuro to order it and get it covered by Medicare.

With this slow feed, the leaking isn't happening, so maybe we can put the tube situation off a bit. That would allow him to get used to his wheelchair again before transport.

While this appears to be working, he's not thrilled to have canned food. He really like my blended stuff, however I can't get that thin enough with little volume.

I do have to say it removed a bit of stress without not having to keep track of getting his food in.

Hugs,

Sue

While

 

[KateEmerson]

Sue, Job is on a vent but has had many times he says he " can't breathe" and his O2 is 98. A doctor tried to explain to me the oxygen transport concept. The vent and lungs are working to provide O2 to the blood, the oximeter tells us that the red blood cell is carrying the O2 well (98), but there aren't enough red blood cells to carry as much O2 as the body needs. He gave this example: you have 100 lbs that needs to be moved immediately, each mule can carry 10lbs, but you only have seven mules so you can only get 70 lbs moved to where it's needed, so you end 30lbs short of what you need. This what can happen with anemia...not enough red blood cells to move the amount of oxygen the body is calling for.

I hope you can make some sense out my limited ability to explain this. Good to hear Brian's gtube stopped leaking and you won't have to go through the nightmare of trying to get someone to replace it, and the transport, and the resulting exhaustion to you both. Take care, Kate

 

[Narrowminded]

Hi Kate, you did a great job of explaining. totally get it. It is a real possibility right now due to the issue when his foley catheter was placed. He bled quite a bit, but refused to go have it checked at the hospital. This new issue started about the same time. Not sure his body has the ability to recover at this time, but we will work with what we have.

We may avoid all problems today as I was able to get the first round going a little earlier. Should have about a 45 in break in there before I start lunch and then again at dinner time, I hope. His flomax has to be given 1/2 hour after a meal, and the Dr. wrote it for bedtime. Well his feed didn't finish until 11:15 last night, so no med till 11:45. Makes for a long day.

Will update on how today goes later.

Hugs,

Sue

 

[Narrowminded]

Hi All,

Didn't get back last night, but the feedings are going really well. The case of the TwoCal came today, so tomorrow we will give that a go and see what happens. Hoping this one works, it would be nice and I'll be able to get him his good hydration too. And to bed at a more reasonable hour.

Hugs,

Sue

 

[KateEmerson]

That's great Sue. So good to hear things are better for both of you. Kate

 

[affected]

Really hoping by your other posts that this does the trick for both of you xx

 

[Narrowminded]

So far, so good with the feedings. The new forumla arrived yesterday, so first run today. Seems to be working, but I still think the glycerna works the best. A bit more saliva today, which the Glucerna seemed to calm. I sure wish that stuff wasn't to darn expensive, I'd go for it on my own. Medicare just won't pay for that kind since he's not diabetic.

I thinking of trying to mix the two a bit and see if that would help. I could afford a case a month to work into the other stuff. Still thinking and we will see how tomorrow goes.

However, this stuff will get us to bed at a decent hour and that's huge.

Hugs,

Sue

 

[soonerwife]

Glad you guys are able to get to bed at a decent hour Sue. It is huge. We all need sleep. Good luck finding what works.

 

[Narrowminded]

Never a dull moment. Feeding tube button broke, sitting in the ER waiting for a GI consult to get that fixed. Gonna be a looong night

Hugs,

Sue

 

[lgelb]

Hope the redo is quick and effective, Sue!

Best,
Laurie

 

[affected]

oh no Sue, just when ... hope they make you both a priority and you get out and home fast!