Usually I look forward to Monday's, especially after a weekend of working..but some Monday's can get a little hectic, but really what day isn't....This whole month and most of next month are just busy. April, May and June has brought about 10 appointments, and various activities to keep track of as school comes to a close and summer begins....always crazy.
Hannah has been on the insulin pump for coming up on 2 weeks now....it's been a challenge, but it's really working out well. She has a blue (her favorite color) Medtronic Mini Med pump.
this what her pump mostly looks like, but she has the newer updated version of this one, called the MiniMed Revel.....coming soon, I still have to get a pic of her with her pump
After working last night, I came to test Hannah's blood sugar at 11pm, to find it was 308...bummer. Anything above 300 now, is a bigger concern since she doesn't have that long acting Lantus insulin in her body anymore. We no longer use that with the pump, since she is getting small doses of the Novalog automaticly every hour 24 hrs a day. If she stays above 300 for more than 4 hours it can put her in DKA (diabetic ketoacidosis), which was what put her in the hospital when she was diagnosed. So I gave her some insulin through her pump, and boy is that convenient when it's late and she is tired, to not have to give her an injection.
So then since the pump is a fairly new thing, I've been checking her every 3 hrs in the night, when her numbers haven't been in the normal range. The first few days on the pump she was high alot.
I got up again last night at 2:30am, since she had that random high blood sugar, and then she was back down to normal. whew!! Really though, her numbers have been excellent lately, and have been just doing the around midnight test and if that is good have been just letting us sleep. ahhhh.
In the beginning we were testing alot, several times at night and that was exhausting. I think we are past the initial hurdle of learning the pump, and how to handle Hannah's doses etc, and have a pretty good routine down. Still more to learn and things to overcome, but we definatly are past the newness of it all.
The pump in general is working out wonderfully. We dont have to do all those injections in a day, she was getting 4-6 injections in a day. It was always tough her hear her cry out owe at each one, mostly out of habit, and then a few she would say, that one didn't even hurt. yea! Some would bring more than an owe, many tears and hugs would follow, some would bleed if we hit a blood vessel, and many would bruise. We were always thankful for the ones that went in without any problems. Just something they say your supposed to get used to, but some how that is a hard thing when your only 8.
So anyway, the pump has elminated the many injections, but it brings it's own set of issues. We are starting out changing her infusion site every 2 days until our follow up appointment on May 27 which we may be able to bump it up to every 3 days.
The infusion site is the area where the pump is connected to her body. It involves a catheter looking system, where we insert a needle just under her skin, and then we pull out the needle and a small "cannula/catheter" is left under her skin, similar to how a catheter is inserted in a vein, but so glad we don't have to try to hit a vein. One poke every other day for now, is much better though than 4-6 daily!!!
Because she is so thin, we are using an angled infusion set, so that it doesn't go in that deep, where as most normal built kids use a quick set, which to me seems much easier to insert. That set is preloaded into an automatic system where a button is just pushed and the set is automaticly inserted, straight "down" into the skin.
In Hannah's set, at least the one we got from Medtronic, we have to insert it manually, which goes in vertically so it stays at a angle. This is the part that has made me nervous, having to do this manually.
her infusion set
I have done all the site changes, so far and most have been good but a few haven't gone so good, mostly cause Hannah gets so worked up which gets me worked up. She was perfect at the clinic, but at home she lets her personality flare up. Steve has yet to attempt the site changes. We are able to order a set from a different company (Animas by Johnson and Johnson), that is angled and IS a quick set, so we may try that since this manual stuff is harder to master. I'm all for making this process as easy as possible. It will be one of my questions at our follow up appt. Once again Hannah is againest trying anything new and wants to just stick with the way we are doing it, but I think we should at least try it and see which one we like better. I also think it would be easier for Steve and others who may need to insert a infusion site at some point if I'm not available.
We use a lidocaine/prilocaine numbing cream to keep the site area somewhat numb for insertion. It seems to take the edge off for Hannah. It needs to sit on her skin for about 20-30 min which makes the whole process of changing her site last a little longer. We've been getting through it each time, but each time I pray that it goes well it takes some prepartion ( mental and physical) and some skill... luckily I dont have the fear of needles, and have had some nursing skills, even if it is on animals, sometimes animals are alot like kids. Mostly it's just not fun to have to do this on your own child.
One of her previous sites is still giving her problems today. It has left a hard bump under her skin and is extremly itchy. This morning it started to itch again as she was getting dressed for school and once she started itching it wouldn't stop. I tried many doses of hydrocortisone cream/ ointment and then even put on her numbing cream and told her to try to not itch it ( HA!)....after about 45 min it finally started to calm down. She was about 30 min late for school because of all of this. Called the diabetes clinic, but had to just leave a message, so hoping they get back to me so I can find out what to do for this or why this happened.
We already had to stop using the IV prep wipes before insertion, because it irritates her skin, so we just clean the area with soap and water and we have these other wipes that help remove the adhesive from the site when we have to take it off, but I think that may irriate the skin some too...but those work wonders to get the stickiness off....I guess baby oil is less irritating, so we may have to try that too....but not sure what caused this bump or extreme itchiness still ongoing after about 4 days since we did that site. ????
Last week we ordered her a couple of pump packs, and those should be coming this week. They are little pouches that hold her pump and strap around her waist for more control when she runs, plays etc. Right now she just has it cliped to her pants, and it just kinda hangs there and flops all over when she runs, once last week she said it even fell off at school...ouch...with the tubing connected to the pump and also her site on her butt that tugged a bit when it fell off, luckily the site stayed intact and didn't pull out. Usually if she wears jeans or pants with a more soild waist it's ok, but when she has a elastic waist band or something else, the pump has nothing much to clip onto to keep it from just hanging on her. So we knew we needed something like the pump paks and ordered one right away and Grandma/pa also paid for another one, since she couldn't decide between 2. She is getting a purple soft fabric one with black paw prints on it, and the other one is also a soft fabric, lime green with white dots. We still will have to figure out dresses, but there is also an elastic band we can buy, she can wear around her waist or leg to hold the pump under a dress , or maybe just wearing shorts or something under her dress.??
Here are the pump packs she will be getting soon.
How does Hannah feel about the pump?
She is very happy with it, it doesn't bother her to wear it or be attached to it, maybe it's a mindset that she new she'd have to be attached to it, but with her personality if she didn't like how it felt she would let us know it. She loves to do it on her own. She pushes the buttons and gives herself insulin, we continue to double check and figure out doses for her. She likes to feel more in control and the pump gives that to her. She still dreads when it's time to change her site, but hopefully that will get easier. Her poor butt (upper areas) is getting so many pokes, we have to rotate sites, but there is not many spots. Seems to be taking a good week or so for a site to heal. When she gets older and able to do her own site changes, it can go on her tummy as well, but for now she has zero fat on her tummy to be able to try, but I'm sure with growing up most girls end up with some fat in the tummy area wether they want it there or not :)
Today Hannah has a 3:30 appt. for a follow up check on her lichen sclerosis. As an update on that we had a follow up appt. back in February and her doctor gave us another oiontment, (as a step down from the steroid cream) and then also told us to have hydrocortisone ointment on hand. We are on kind of a 3 step system with this, if it gets really bad use the steriod cream (red light), if it's just starting to get irritated use the Desonide ointment (yellow light) and if things are good or slightly itchy use hydrocortisone ointment (green light). She briefly mentioned this plan in Feb. and today hopefully will go quick, since we haven't have any problems of any sort since the initial appointment back in January. So it's been about 4 months of everything good in respect to that. She will probably examine her and restate this plan if anything were to come up and hopefully we can go for a year before we have to see her again. We haven't done any ointments for over a month now, and so far so good.
