I am so frustrated!!

[coni]

At first I wanted to scream, but now I'm crying. This pump start is really starting to ****.

The doctor insists on giving DD a 15g uncovered snack at bedtime. DD shoots up into the mid 300's and wakes up around 250. This is after testing at 148 before the snack. How the heck can you set a night time basal with an uncovered snack like that???

Of course, the basals aren't completely set yet, and the I:C ratios are changing. It's been since Tuesday we've been working on them. The doctor said things would be set by Friday. I didn't know how it would be possible. Well, I'm here to tell you, it's not possible. There's much, much more tweaking to be done.

DH and I have been strongly disagreeing on the directions the doctor gave us for the pump. How can we both have sat in the same room, supposedly heard the same thing, have a sheet of instructions, talk about it and STILL not understand the directions the same way?!?!?!

I changed DD's site this morning. The old site looks red. I think it may be infected. DH thinks it's just bruised. I'll be watching it closely.

Okay. I was going to go on and on. There's more, but I feel a bit calmer already just getting things off my chest. I need to take a chill pill and have someone tell me it will all be okay.

[Caydens_Mommy]

As far as the pumping I can not offer you any advice, I know nothing..

but I do want to say that things will be work out.. I think alot of people starting them pump have a rough start.. Try not to stress over it too much..

Good luck on your journey!

[Lee]

IF the site is not hot to the touch, then don't worry about it.

On the pump, there is no reason to have an uncovered snack and I do not understand why your dr would tell you to. Your doctor was also wrong to tell you it would be good by Friday. It took us two long frustrating weeks to get everything set correctly and to stop freaking out about the numbers.

I would let your doctor know that you would rather adjust the basals so she does not require a snack.

Also, if you and hubby are disagreeing about something - post it, we will give you the right answer :D

Seriously though, good luck, hang strong, and it does get easier - I PROMISE!

[still..hopeful]

It will be ok. She will be a pro at pumping before you know it. We don't use a pump but we do give Alyssa a 15 carb snack before bed uncovered. Depending on what type of snack it is depends on how she wakes up in the mornings. Yogurt or cookies usually makes her run high. We try to do a piece of ham and a few crackers with peanut butter. You may have to play around with the snacks and carb ratios. Alyssa is on different carb ratios for each meal. We have been going at it for 8 months and still have to tweak it. Go eat some chocolate, have a coke, and take a hot bath. I hope things are better tonight.
Angie

[Thoover]

Everything will be ok..

My endo told us that we don't give snacks uncovered.. and a BG of 143 is awsome.

What basel rates and times is it set at? We have the animas pump as well. I do have to say in the beginning they were set low and every time we had an appt they would tweak it a little more. This last appt in May they tweaked it a little too much.. But we fixed it.. Now its been going great. So it really did almost take a us a year to keep tweaking and get everything in the order it needs to go..

Like our Endo says if you get a child to wake up in the normal range 80-150's its alot easier to keep them there in range the rest of the day.

Maybe set a basal at 4am to kick in a little more if you are doing uncovered snacks. Or if she has a snack cover the snack but check her through the night to see what BG is doing..

Make sense.. Hang in there..

[liasmommy2000]

(((HUGS))). The uncovered snacks makes no sense to me. That's the point of the pump, she shouldn't need to eat. I don't know how you will get the basals right if she's eating an uncovered snack. I would call and double check about that.

And it does take time to get things set right. It sounds like you are only a few days into it, it's still pretty early.

I don't know about infections, sorry, no experience there thank goodness.

Sorry your dh and you are disagreeing. We had a few moments in our household after pump start. :rolleyes:

[taximom]

If I were you I would not give that uncovered snack. You know your DD better than the endo and you can see what it's doing to her numbers. Hang in there it will get easier. I ended up changing everything the endo started us out at (basals, i:c's, etc.)...as far as all the pump settings. It takes a little time, but you'll work it all out. If you change anything, just make sure you test often. I think endos (at least ours sure did) start everyone out quite conservatively when they begin pumping. Call your endo and give them your DD's BG#'s and push to change things, if you don't like what your seeing.

[wilf]

Unless it's just for this transition period (to make sure that DD doesn't go low while adjusting to the pump), it is simply poor D management to give 15 g uncovered snacks before bed when BG is 148..

As far as everything else goes, you'll get through it. Hang in there, give your DH and DD a hug, and know that it should get easier as you get used to it.

[kel4han]

I almost threw out the pump many times!! I cried out of pure frustration often. It took us about 2 months to be comfortable with nightime basals, but that was part due to starting in the summer. The 15c snack, is for Lantus not a pump, silly Endo. You know best. You do what you feel is right. Alot of the sites look red and yucky when they come off, but I think that is the reaction to having the sticky on there for 3 days, like taking off a bandaid.

Hang in there! It is just like starting all over when you make the pump transition, I promise it is all worth it in a few months!

[Ali]

It sounds like he has the snack to cover lows while figuring out what the nightime numbers will be and still keep her from going too low overnight. i.e. If she is 143 at bedtime and he knows that a 15 g snack will raise her 150 points but she then wakes up at 200 then he knows she is dropping 100 points from the basals and he can work on tweaking those without her waking up at 50. It does however make the daytime adjustments harder but maybe he wants a good idea of the nightime basals first and then will work on the daytime. Call and check with him again about his plans and remember a few weeks of high numbers will be manageable for her body. Some endos set all the BG target at around 200 while working on the pump numbers and then once you know the basal will hold steady and have a good idea of all the other ratios they set your target lower. Good luck. Ali

[jcanolson]

Hang in there! The first couple weeks (or months) are SO difficult and stressful. I definitely remember thinking - "This was supposed to be easier. Why are we doing this?" At this point, over 2 years after pump start, I'm so glad we kept plugging away until we got all those annoying settings tweaked.
I'm with you. I don't understand the 15 carb uncovered snack. I'm sure they are concerned about lows. We were up several times the first week or so of pumping to check her bg.
Camp is coming!

[bkfkmc]

Coni-

I am sorry you are having such a hard time. I remember how hard it was when we first started pumping- and we weren't told to have uncovered snacks. I know Esme sees a different Endo. than Braden, but it is interesting that the different Endos. in the same practice do things so differently.

I was scared then I first broke away and started doing everything on my own. I decided to do it after I had called in numbers and the tweaks were just so much that he was constantly low- a whole container of juice a day. I just made changes myself and never called in numbers again. I was really dreading the next appt. because I didn't know how the Endo. would react. She we very encouraging and did not have any problems with me doing it as long as he was doing well at check-ups. That being said, we had been pumping for quite a while when I took it upon myself to make changes.

I have had to talk to some of the on call Endos on a few occasions. Most recently, the ER Dr. called the on call Endo when Braden broke his arm. I did not agree with her recommendations and I did not follow them. She was giving the info. through the ER Dr. without talking to me, so I wasn't able to tell her what I thought would be pertinent info. Also, she probably assumed that I rely on their office for changes. Regardless, I chose to disregard her directions, as his bgs would have been incredibly high if I had followed her advise. I am not encouraging ignoring a doctor's advice. I am just saying if it doesn't feel right, then certainly question it. We are with them all the time and see things that the Drs. aren't always able to see.

And sometimes I think the Drs. have to learn their parents/patients to find out how they are going to be at the pump. I am sure there are some families (most likely none that visit CWD) that need extra precautions in place with the pump. There was a 4 yeard old boy that rode the bus to VBS at our church a couple of years ago. He wore a pump, but came to church with no adult, testing supplies, glucagon, juice- nothing. He bolused for nothing that he ate because he didn't know how to on his own. In situations like this, I am sure the Endos must be much more "protective" of their patients and follow a much more conservative plan.

I just want to encourage you that it will get better. You all will have it smoothed out soon and you will feel much better. It took me a good month to get really comfortable with it. I do remember the first week being really frustrating though. It will all be worth it though!:cwds:

[Abby-Dabby-Doo]

Coni~
It's going to be okay. I promise you- I was in your shoes when we started the pump for Abby.
It's going to be okay, it will get better, hang in there, and remember breathe in and out.

A couple things right out of the gate that weren't in your post but I wanted to mention...
First and foremost when you change a site, make sure the site you take out wasn't kinked. Kinked cannulas can cause havoc for blood sugars, and interfer with the changes your making or why you're making a change that you shouldn't. You think they need more insulin and it turns out for 3 days your child wasn't getting the proper amount of insulin due to a kink.

Watch for bubbles or air in the tubing. When you first start the pump, bubbles and air in the line is almost an automatic. It takes some practice getting that just right, and then still out of the blue they will still show up. Check before bed, at bath time, before you bolus, whatever but be on the look out for them.

My DH and I didn't agree when my daughter was first dxd on what to do or how to do it (regarding doses and such). It's almost like starting over when you start the pump, but it gets easier quicker.

Professionals forget that you (and DH) know your child better than anyone. You know how often your going to check your daughter in the middle of the night. I would appreciate his comment about the snack, it's a safety thing- you only started the pump 3 days ago. He/She cares about your child and probably feels safer sending her to bed with something in her tummy than empty. I don't agree with it- so if you are confident not having a snack, will check her in the middle of the night so you don't miss any lows, take charge and do it.

Don't make too many changes at once! Too many changes at once can leave you confused and crying. Log your changes- it's harder than heck to watch it for 2 or 3 days, but look for a pattern! Keep a log of what you change so you know what works and what doesn't! Sometimes I'll start another basal pattern on the pump just in case I want to go back to the "original" one since it's not working.

We're all here for you and help in anyway we can. Let us know how it's going! Thinking of you!

[Sue too]

Hang in there.

I've done pump starts with both my kids. Daughter at 4. Was like cutting butter with a hot knife - so easy. Son at 12 (I think) was awful - and I mean awful. I thought he would NEVER even out. But he did!

With a redness at site removal, I always erred on side of caution and put a bandaid with a little neosporin for a day.

As for the uncovered snack? I'm with the chorus here. Don't understand. Especially if you're doing frequent nighttime checks for basal rates and can treat any low if necessary.

[Judy&Alli]

Coni,
I think the uncovered snack is just a CYA thing for the endo. Hang in there he just probably wanted an insurance policy for your daughter. Hugs to you!!!!!!!
Judy:)

[Jensmami]

Coni, sorry that you have such rough pump start, it will get better and you will look back and think, how could I ever do all of this without the pump, so hang in there.:)

About the uncovered snack, which should not be necessary with the pump, but I think the doctor just wants to make sure your kid is safe. Some children need way less insulin over night, mine included, and with the uncovered snack he can see until Friday (pattern for 3 nights) and make the changes accordingly.

The good thing is, for one more night you don't have to be scared that she will drop low, so enjoy your sleep:D

[hawkeyegirl]

I understand your frustration. Jack ran high, high, high for the first week of pump start. They start you with conservative ratios and basals so that your kid doesn't drop like a rock, but it's very hard to figure things out when your kid is constantly in the 300s.

I have to say, in your shoes, I'd ditch the 15g uncovered snack, unless my kid was low. I'm sure you're testing often enough to catch a low if it were to happen.

Hang in there. It just seemed like all of a sudden things just clicked for us. It'll happen for you too.

[coni]

Thanks everyone! I'm starting to get a second wind. Of course, after I posted, I ripped out my DD's 4 hour old new site when helping her change her swimsuit.:eek:

Then, I realized that Animas sent us tons of insfusion sets and cartridges, but did I have any extra IV Prep or Skin Tac? No. Why didn't they send us everything we'd need for the first few weeks until I could wrap my head around this?:p

Oh well, DD's been a trooper and my DH is still alive! I take it on faith that things will get better...

[Twinklet]

It WILL get better! I thought we made a mistake by choosing to pump the first few weeks. We had a very difficult time getting the basal rates set correctly, and everything was so out-of-whack. But it did work out and now we are so glad!

I don't get the 15 gram uncovered snack, though. We bolus for EVERYTHING! Besides, how in the world will you get the basal rates set right by giving an uncovered snack?

[Judy&Alli]

Thanks everyone! I'm starting to get a second wind. Of course, after I posted, I ripped out my DD's 4 hour old new site when helping her change her swimsuit.:eek:

Then, I realized that Animas sent us tons of insfusion sets and cartridges, but did I have any extra IV Prep or Skin Tac? No. Why didn't they send us everything we'd need for the first few weeks until I could wrap my head around this?:p

Oh well, DD's been a trooper and my DH is still alive! I take it on faith that things will get better...

Coni
I can send you some if you need it. Pm me your address and I'll get some out to you.
Judy:)