Sunday, August 22, 2010

Pumping...the melt downs

Friday morning Bekah woke up with a BG of 188. After she had breakfast she told me that she wanted to go ahead and do a site change and wanted to try using her tummy. I did a two hour check and then decided to call the Animas nurse with numbers (I have to report numbers by phone to a nurse from the pump company for the first 3 days and then can email or fax). Because she has iterated and reiterated that she likes to take off early on Fridays, I thought this would be a good time to call. She is on the East coast so that is mid afternoon my time. We are still on a summer schedule which is similar to last school year where Bekah eats a late breakfast and lunch in the mid afternoon. Since David was playing, I could give the nurse my full attention and avoid some of the irritation that I always hear in her voice. I am a busy mom and she seems to always call me at very inopportune times. I caught her in her car and she vowed to call me back in a "few minutes".

It was nap time so I nursed David to sleep. (he is a very light sleeper and with the kids home this summer, for him to get a decent nap in, some one has to hold him) I checked Bekah's pump and it said 62 units of Novalog were still in the pump. Ugh! I don't want to waste that much insulin. I looked at the clock, it's been over an hour since I had talked to the Animas nurse, I think I will try back and ask about all of this insulin. This time no answer and it's only about a half an hour until this nurse had told me she was off on Fridays. I am a bit irritated but figure she'll call back. I wait a half an hour and try back again. Again I get her voice mail.

If I'm gonna get this site change done with David still a sleep, I better hustle. He is incredibly curious about any gadget or new thing and I was stressed about the first change all on my own. The last thing I needed was him getting in my way. I hand David to Megan (she loves to snuggle her brother for naps) and he stays asleep. I decided to just toss the old insulin because I can't see a way of salvaging it unless I just change the site and not the insulin. I don't want to run the risk of running out. I disconnect the pump, toss the old insulin and fill a new reservoir. There was not enough insulin in the bottle and it left a huge bubble. I tried to prime out the bubble and then was left with probably 50 U. So I toss that and start over with a new bottle. Making sure Bekah is getting the proper amount of insulin is important but it made me sick to toss out that much.

I ask Bekah to remove the old site so we can put a new one on. This is where the first melt down begins. I think my brave little girl had had it with being brave. She began to cry. I had just done a BG check and it was 104. I knew she needed to eat. I thought this set change was going to be quick and then I'd bolus for lunch with the new set hoping that the old one was just in a bad spot and that was why it was hurting her. I put her in the tub to get the old set off. It seems to work much better to soak it off. We have issues with adhesives in our family. Luckily the infusion sets don't burn our skin like band-aides do. (I wore one for 24 hrs to see what it would do, knowing that after a few hours a band-aide will begin to burn my skin) Bekah's skin does better than mine but she still can't have a band-aide on for too long. We soaked off the set and there was a slight rash under it but that went away fairly quickly. While she was in the tub David woke up (great). I was stressed about the site change, I hated that the blouses had been hurting Bekah, I hated that she was melting down over a site change and I felt totally unsupported by Animas (the nurse still had not called me back and it was well past the time she had iterated to me that she was off on Fridays) and now David was awake and would surely be in my way. Here is where my melt down came in. (Our car had been broken in to earlier in the week and our insurance company was not going to replace what was stolen on top of all of this was just a little more than I could take at the moment)

Megan was able to get David to calm down and took him outside to play so I could finish. Daddy came in from his office to let Bekah sit on his lap and we put the new set in her tummy. Immediately, there were lots of tears and complaints that it was uncomfortable and itched. she pulled that one out before it stuck too bad. It bled a little so we put a band-aide on it. Her arm was the next spot she wanted to try so while she calmed down I used the tubing from the tummy set to get the pump ready and primed. Just as I put the set up to her arm the phone rang and it was the Animas nurse. (of course it was, could she have called at a more inopportune time) I told her I would have to call her back. I needed to get Bekah hooked back up to her insulin as it had been about an hour since she was unhooked. Quickly I put the set in her arm. She didn't even need Daddy. No tears. (YES) I had her go pick out lunch while I called the Animas nurse back. I tried twice getting her voice mail both times. When she did call me back she had not listened to any of my messages and said something to the effect of she thought I was going to call her back in a few minutes after I had reached her in the car. She clearly told me she'd call me. UGH! I'm so thankful that I am off having to call in numbers daily and can now email or fax them in.

The arm seems to be working a bit better but Bekah was complaining that it hurt still. I think she is tensing up in anticipation causing it to hurt a little more than it might if she was just relaxed. She is not usually a drama queen so I trust that it is indeed hurting her. I went into the settings and turned the delivery down from 1.0 to 0.1. I realize that will take a long time to get the insulin in her body but what is a few minutes if we have no more tears or complaints. That did the trick until the next morning. Now she is back to complaining about the bolus hurting. She doesn't want a set in her bum so I'm not sure how to help with the hurting. It is discouraging to be honest. I thought that pumping was going to be easier. So far I'm not feeling the easier part...

Total time from start to finish of first set change on my own: 1 hour, 15 min. It has to get better than this!


  1. HOLY MAC!

    That's a crazy day!!!!!!

    Pumping does get easier....but....I have to admit that it took me 8 weeks to decide that I wasn't going to throw it out the window.

    Hang in there....and....I'LL PRAY FOR YOU!

  2. I use Uni-solve to disolve the adhesive on Grace's sites. Put some on, let it sit, and by the time I've changed her site, the old one comes right off with just a little gummy residue. Might save some time instead of putting her in the bath every time. My CVS doesn't carry it, but we have a DME pharmacy that does. About $12/box of 50 wipes.

    Good luck moving forward. I promise it will get easier!

  3. I'm sorry things have been so crazy!

    My first site change on Emma took at least an hour and I was completely crying by the end. I messed up over and over again. Now it seems like a piece of cake...could do it in my sleep but for the first month at least I had to read over the instructions and go so slowly.

    Sweet little Bekah...I hope it stops hurting her. Why doesn't she want them in her bottom? Maybe that would hurt less? Good luck!

  4. You are doing great!!! It isn't easy...heck, none of this is! You are amazing balancing all that you are and doing it with such grace. Hang in there.

  5. just came across your blog...we also had a hard time at the beginning getting the sets in. The first few didn't even go in the right way and the cannula was either not in at all or popped out. My son screamed, I cried, it was horrible. But it does get better! My son only lets us put them in his bottom. I found that if I lay him across my lap and let him watch something on my laptop, that it is really easy. In the beginning, we put a frozen quarter on the spot to "numb" it and then he would keep the quarter as a reward. Now, he just has to be the one in control and tell us when he is ready for me to insert it. I am sure you guys will figure out what works best for both of you. As for the Animas nurse, could you get someone else? Our rep/trainer was incredible and she even came back out a few times to watch me put the set in to make sure it was correct.
    Well hang in there, you will love the pump once you get through all the learning curves.

  6. Oh Heidi,

    I am so sorry pumping is off to a rough start. It was tough for us in the beginning too, but it has gotten easier. We still struggle getting T's sets to last sometimes and keeping them in. Uni-solve or Detachol helps gets sets off, you should be able to order it straight from Animas. I know Bekah is reluctant to try her bum, so is T. We are going to try the top part of his bum (where the curve starts out, on the top where there is a little more fat) T is super thin and I feel like we are running out of real estate. You might think about trying a different style of sets too. I hope it gets better, our first several set changes took forever and were so stressful. Hang in there. We are sending you and Bekah some love!

  7. What a rough day :( I'm so sorry you felt so unsupported by definately need lots of support and encouragement during this time. I don't have Miss E or Lil Miss C on a pump yet, so I don't have much experience in the pumping department but I can say that you have lots of support from all of the fabulous D-mommas out there who have all "been there, done that" :)

    Big hugs...I hope that things go smoother next time.

  8. We're still on shots, so I have no advice. Just want to say I hope things get easier for you and Bekah!