Tuesday, March 21, 2006

Aggghhhhh!!!!

I'm not sure how coherent this post will actually end up being. I'm so stressed that I don't want to think about anything, but a hundred things are swirling through my head.

It has been a very rough 18 days. I really don't like to post too many negatives. I at least like to touch on a few positives, but I'm not sure this post will have any positives in it.

I feel like I've reached my breaking point. I don't get stressed easily. I never have. I'm the type of person who feels like you take things as they come, you deal with them, and then you move on. I guess my problem now is there is no moving on. I can always see the end point, where things will get better. But, there is no end point with this disease. There is no point in the future where I can say for certain that things will be OK.

Everytime I feel like I can relax, just a little, diabetes throws me another curve ball.

Riley's sugars have been horrible, just horrible. I know this is to be expected when you first start the pump, but like I said, I can't see an endpoint to all of this. I know that when I do get them straight, everything will just change again.

My downfall all started, I think ,on Friday. I faxed Riley's sugars to the endo. I called and left a message to let her know that I had faxed them. I never heard from her. I didn't really push the issue over the weekend. We were doing about the same as always. So, first thing yesterday morning I faxed his sugars again along with a few questions. I also called the office and left a message to let her know I'd faxed the sugars and that I felt a little stuck at what to do next with his basals and carb. coverage. See, I've been bumping his basals up slightly every 3 days. When Dr. M talked to Michael last week she commented on what a good job I was doing adjusting the pump. I just felt that something else was wrong. His total daily dose of insulin has increased from 3 units a day to anywhere from 6.5 to 7 units a day. Most people need less insulin on the pump, not more. I know that it is feasible that he stopped honeymooning about the time that the pump started. I just felt like I kept increasing his basals and his carb coverage and his sugars were staying just about exactly the same. For example, his sugars 2 hours after meals are pretty much the same now at 1:35 carbs as it was when it was 1:50 carbs. The change should have lowered his sugars a little, right?

I must pause at this point and just let you know, I'm sick, sick, sick of hearing about how Adam Morrison has "flu-like symptoms" and he may not be able to play Thursday. You see, I live in a house full of boys. My TV is on ESPN most of the time. ESPN has mentioned at least 10, count them 10, times that it will take Morrison so much longer to recover because of his diabetes. I just don't want to hear it right now. He's an inspiration to many kids with diabetes. He's proof that you can do whatever anybody else can. Then, he gets sick and all they can talk about is how if he didn't have D, he would get better quicker. This is probably true, but I don't want to be faced with that reality now. I much prefer to put him at Super Hero status and pretend that D doesn't affect his life at all, but the stupid TV announcers won't let me!!

Ok, so where was I? Oh, yeah, I had faxed his sugars. Well, by the afternoon, I hadn't heard from Dr. M. So, I called her cell phone. Her message said that she would return calls within 30 minutes. I left a message pretty much like the one that I left earlier at the office. I also left several numbers where I could be reached.

Not long after, my mom called and said the Riley's pump was alarming. She said Riley came to her and said "My pump played music and then it tickled me" (his pump vibrates after it alarms) The pump said "Caution, no prime" (or something like that). I was in the middle of seeing a patient. I told the patient I had an emergency and would be back later. I went to my mom's and called Animas. The person I spoke with was very nice. About 2 minutes into our conversation, she was sending out a brand new pump. She couldn't figure out why the pump had pretty much reset itself. She said it may never happen again, but just to be sure they were going to send out a brand new one. I get the pump straight and head back to work and finish the visit with my patient.

Came home, had supper, still no call from Dr. M. So, Michael called and left another message on her cell phone. The same message was up there that she would return the call within 30 minutes. Still no call when we went to bed last night. I was starting to get concerned that something bad had happened to the Dr. Whenever I've called her cell phone before, she's called back usually within an hour. I know basal adjustment is not an emergency, but I did want to talk with her and see what direction to head in next. I just felt that the longer it took to talk to her, the longer his sugars would stay up.

7:30 AM, Dr. M called. No explanation of what took so long, she just made changes to his basals, carb. coverage, and ISF. Told me to wait 3-4 days and then we could tweak it some more. Now, don't get me wrong, I still love the endo. She is very knowledgeable, and she understands my fears about changing anything and has a way to calm me down and get me to feel better about what's going on with Riley. I guess I felt let down that when I needed her, she wasn't there.

Next, it's off to work. There was a big ordeal with my mom about not understanding the new carb. coverage. The pump will only let you change coverage every 4 hours. His breakfast coverage is higher than his mid-morning snack, so I had to show my mom how to go in and manually change his carb coverage for his morning snack. Anyway, Mom ended up calling me 5-6 times throughout the day. This is on top of the 5-6 times she had called me the day before. It's just trying to deal with work and home at the same time is a little difficult.

Riley's new pump arrived at 10 this morning. I was hoping to hold off on switching it until I got home. It was set change day anyway, so I figured I just do it all at the same time. At about 3:00, my mom called. The first words out of her mouth was "I think we have a problem." Great!! That was just what I wanted hear. She had checked Riley's sugar with our Freestyle Flash. (This, by the way, is a brand spanking new one. I just got it last week. I called the company and complained about the wide fluctuations and they sent me a new one.) Well, the Flash registered at 426. So, she used my dad's machine, 334. She used the Flash again and this time it was 320. That seemed more like it, but she checked his ketones and they were trace. Now, we've established that his sugar is high enough that he's spilling some ketones. My mom is freaking that the pump has just stopped working even though it hasn't alarmed again. Keep in mind, this is at 3:00 PM. I was on my way back in to the office. I had not had time to even think about eating lunch. It had been a very busy day at work and this was just not what I needed right then. I went to the office and told my supervisor that I needed to leave for the day.

I went to Mom's and spent a while setting up the new pump and then I changed his
site. We are back to using the Insets because Riley keeps complaining that the metal set hurts when he sits down.

That leads us to now. I was hoping Michael could help cook tonight because, well, my brain just does not want to work. He just called a few minutes ago to let me know he's just leaving work (45 minutes away). He's usually home by now.

Now, I must go and cook. My family must be fed. The clothes must be washed.

I just hope this new pump helps. I'm going to be mad (and a little relieved) if I find out that the pump has been the cause of all of these highs. I got an email or maybe a comment on another post where another parent said that they kept having high after high and finally convinced the pump company to send them a new pump. After, they started the new pump, the sugars evened out. That leads me to worry that now his basals will be too high and he'll drop too low.

Ok, really got to go. Must cook, must clean. Sorry to ramble so much. Thanks for listening.

5 comments:

Scott K. Johnson said...

Oh Penny. I'm so sorry that you are feeling so overwhelmed with it.

I don't have any magic solution that will make it easier, nor any brilliant ideas to help you get through it - but I do know that you will find a way. Things always work out, and sometimes you need to be confident in that fact while you do the best you can.

prayergal said...

Penny,
Sounds like you need a Big Hug
(((HUG))). I am so sorry you have to go through this difficult trial. I know that your faith will sustain you and you know that God never gives us more than we can bear. When we have trials that are hard to bear, we know that God is in control and that He will give us the strength we need to survive our trial and to come out better than before. I am praying each day for a cure and for Riley to be healed. I also am praying for you to feel God's presence with you as you go through this.
Love and prayers,
Aunt Linda

julia said...

Penny,
It sounds like the pump wasn't working properly.

Another idea: Have you inspected the sets when you change them? I had a huge problem with Olivia's initial sets when she started the pump. She was using the ones that went straight in and they were crimping up and not getting enough insulin into her. She wound up in the hospital, in DKA, because of it. We now use the Silhouettes, which are angled, and she's had great success with them. It wouldn't hurt to take a look at the cannula next time you do a site change.

Pump starts can be VERY overwhelming. The next time you talk to the doctor, I would tell her how stressed you're feeling and that you'd appreciate a call back more quickly than she did the last time. She does work for you, after all, and should be more prompt in her responses. 4 days isn't acceptable, especially after leaving multiple messages and faxes. You don't need to be mean about it, but stating your feelings may let her know how stressed and lost you're feeling right now.

Do you have a pump trainer or pump nurse you can call? Sometimes it helps to talk to them - even if they can't make any changes, they can empathize and talk you off the ledge a bit. I know the Minimed rep we have is fantastic and always has time to talk to me when I call him with questions.

Hang in there. And don't feel bad about getting negative or complaining about what's going on - we're all here to lend an ear and give what advice we have.

Sandra Miller said...

Penny,

Huge (((HUGS)))

I am so sorry you have to go through this.

A pump malfunction really could be the culprit here.

Though, we too have been experiencing crazy highs for almost two weeks now-- prompting major basal and I:C changes.

My fear is that Joseph may be coming down with the cold virus Evan and Ryan had last week (his endo said that we'll usually see highs before virus symptoms).

Which makes me wonder if Riley might be coming down with something... or if he might just be experiencing a growth spurt (those have always caused a period of "unexplained" highs for Joseph).

Or it could just be the pump.

I know. I know. Exhausting just thinking about the possibilities, let alone dealing with the highs themselves.

And on your difficulties reaching Riley's endo-- Julia makes a good suggestion. In the past, I would always call the CDE with basal/carb bolus questions. (And since all Animas pump trainers are also CDEs-- might be a good resource if you can't get someone at your endo's office.)

Hang in there, Penny.

There were times in the beginning when I felt like throwing the pump right out the window.

But we made it through that awful adjustment period. And you will, too.

Jamie said...

I am so sorry that you are having to deal with all of this right now. I have no experience with the pump, but from what the others have written, it will get better - just keep on hanging in there.

Hopefully the new pump will explain all those highs (i.e. old one wasn't working right). I hope things settle down for your son soon. I know right now Danielle is going through something - whether it be a growth spurt, coming down with a virus, changing of the seasons, the stars aligning in a certain pattern - whatever, she is needing a lot more insulin in the past few days than she ever has. I am leaning more towards a growth spurt as she's eating like a trucker.

Its frustrating how simple things can make their sugars go crazy. And, like Julia mentioned - I'd have a talk with your endo about the lack of response from your faxes and phone calls.

Good luck with the new pump.