This is Not the Honeymoon We Wanted

Angelina is officially honeymooning.  This means that her pancreas has decided that what beta cells are left can now start trying to function again.  Except there's not enough to provide for ALL her insulin needs, so she still requires insulin through injections.  The problem with this is we never know exactly how much insulin her body is going to make on it's own and she has been experiencing a lot of low blood sugar readings and some scary times for me.  This happens because I give her a set amount of insulin (which has been reduced due to the lows, but it's trial and error how much is too much and how much is too little) and her body tries to make it's own. I made this meme to commemorate this momentous event.

Apparently It Took Diabetes To Help Me Make Friends

I am going to have to finish Angelina's diagnosis story later.  So much has been going on that I want to focus on more recent events for now. When we were in the hospital our diabetes educator had me fill out a JDRF form to sign up for the family mentor program.  It was optional, but I figured it couldn't hurt and if it didn't end up working out we wouldn't be any worse off than we already were.  I am SO GLAD that I filled out that paper! Angelina had her first pediatric endo appointment last Thursday and her dr asked what kind of support system we had in place locally and I told her it was pretty much just us.  Me, my husband and Angelina.  We don't really have any friends or family in the area.  My mom did live locally, but recently moved about 5 hours away and while she usually has great intentions a lot of times I just get frustrated with her off the wall advice.  Anyway, the dr said that she knew someone who was involved with a local support group and she would get back to me with the person's information. Later that evening I got an e-mail from the dr with the person's facebook contact info and I was able to add her.  I didn't hear anything that night, but I figured not everybody lives on Facebook like I do. :D I looked around her page a bit to see if there were any groups or pages that were obviously T1 related that were public that I could browse through in the meantime.  I found our local JDRF chapter page and went through their events and discovered they were having a parent's coffee the next evening so I signed up to go. Then Friday David and I went out to lunch and my phone rang.  Turns out it was our mentor mom from the JDRF program and she wanted to touch base with me and invite me to a JDRF parent's coffee that evening that she was hosting. (The same one I had already signed up for on facebook.)  When I got off the phone with her I realized that the other woman on facebook had sent me a message with the same invite for coffee, but that she wasn't going to be able to make it and also told me to contact her friend, who happened to be the mentor mom I was just on the phone with!  Talk about serendipity!    It was just one more of those weird moments since the beginning of this journey where there are just so many coincidences or the timing on things is just uncanny (I'll get into that more in a later post). We went to the coffee and met up with our mentor mom (I'll call her C).  We were the only ones there for a little while, then another mom from the group showed up as well.  It was a nice cozy little gathering and it felt really good to talk and ask questions of been there, done that moms. Angelina was pretty well-behaved but was getting antsy so she and David took off for a little while and went to the sporting goods store to get a new tube for his bike tire.  We ended up being at the coffee shop for almost 2 1/2 hours total.  It was another serendipitous meeting though because there is a local group for type 1's who organize a lot of outdoor events like hiking, kayaking, etc and they were having their monthly hike on Saturday.  David (hubby) has been trying to get me to go hiking for a few weeks now but I am not a huge fan.  He wanted to go hiking this weekend and I wanted to meet more T1 parents and have Angelina have the opportunity to meet some T1 kids so we decided to go.  Again, the timing was uncanny because David was planning on hiking over the weekend and this group just happened to be having their monthly hike the next day. I went home and found the outdoors group on facebook and signed us up for the hike.  Saturday was pretty overcast and a little chilly but we decided to go for it anyway.  It ended up just being us and two other families, so 6 adults and 4 kids total.  It was honestly perfect!  Of course all the other kids were boys and 2 of them were older than Angelina (I think they're both 11) and 1 was younger than her by a couple of years, but she still had a great time.  It was pretty interesting to see how her blood sugar levels changed so drastically with the exercise too.  Part of the group "ritual" is all the t1's check their blood glucose before starting the hike so if they're on the low side they can eat some carbs beforehand so they don't get hypoglycemic during the hike.  Well, in anticipation of her burning off a ton of sugar I had given her about 15-20 uncovered carbs(meaning I didn't give her insulin for them) for breakfast about an hour before hand.  Her BG (blood glucose) was 351 before the hike!  I knew it was artificially elevated because of the uncovered carbs so we were good to go.  We did a pretty gentle trail through some foothills and it was about an hour and a half total time there and back. After the hike we decided to grab some lunch downtown near where the trail was.  When she checked her BG it was 89!   Of course, part of that could be because she is in what is called the "honeymoon phase" of her diabetes.  Basically the beta cells in her pancreas are slowly being killed by her immune system, and in the beginning when her blood sugars were really high the beta cells that are still alive get so overwhelmed with the glucose in her system that they stop working for a period of time because they just can't keep up. (At least that is my understanding at this time).  After a couple of weeks of being on insulin and her bg levels getting back down to a normal level the remaining beta cells start working again, except she's also getting artificial insulin so it's more likely to see lower numbers and have hypoglycemic (low blood sugar, less than 70 mg/dl) episodes because you can't really calculate how much or when the beta cells are going to produce insulin. Luckily her dr had told us to watch out for it and that we might have to lower her insulin dose around now, so we were prepared.  Her BG was under 100 all of Saturday (with the exception of the 351 reading from uncovered carbs) and then only slightly higher on Sunday so her dr emailed me Sunday afternoon to lower her dose of Lantus (which is a long acting insulin given once a day before bed and is supposed to mimic the natural release of insulin over the day, to keep bg level not accounting for food consumed).  She is already on a pretty low dose of her fast-acting insulin (Humalog) as well, so we are just keeping a close eye on her numbers and I have been in email contact with her endo on a regular basis so if anything needs adjustment, we're on it! Then Sunday there was another JDRF event (this one mostly for the kids) at a local trampoline place.  We almost didn't get to go because we were cleaning house in preparation for family visiting in 2 weeks and Angelina also had some homework from earlier in the week that needed to be completed.  Her ADHD was in high form which means she looked busy for 2 hours, but got only a minimal amount of work done.  I finally set down with her when it was time for lunch and told her she needed to make up her mind about whether she really wanted to go or not because if we were going I was going to give her less insulin so she wouldn't get low while we were there, but if we weren't then she needed her normal amount to prevent a high.  She did her normal sulky thing and finally said that she was really going to try to get everything done.  So I gave her some uncovered carbs and let her finish her work.  The event started at 3pm and was about 15 mins away from home.  She got done with her work at 3:30pm after putting in supreme effort.  So she and I went and had a great time.  Her bg was around 165 I think on the way there so I gave her a glucose tablet to bump her up a bit because I knew she would rip right through those carbs jumping on a trampoline and running around for an hour or so. She also ended up eating an uncovered sandwich (which was maybe 30-40 carbs) around 4:30pm which also was pretty much completely burned off by the time we left.  She had a great time though and seemed to really hit it off with C's daughter, which C and I had discussed probably being the case.  The girls are a month apart in age and just seemed to have so many personality traits in common I figured they would either end up being best friends or worst enemies, lol.   I was glad to see that so far it seems to be the former and not the latter. I also got the chance to chat with C a little more, although it was pretty crazy in that place (as you can imagine) so mostly small talk.  I also briefly met a few of the other parents, although I don't think I could name them. All in all, we had a great adventure filled weekend and I am starting to feel like I might actually make friends here in CA.  And not just friends, but friends with kids who are like mine and can relate to what I'm going through, even though we may not be the same age.  

The New Dirty Word - Diabetes (The Dr's Office)

I am going to have to write the diagnosis story in a few posts as it's all still very fresh and emotional for me.  So here's Part I: Angelina, who is 9, woke up Monday morning and started complaining about her vision being blurry.  She had a bad cold and I just assumed she had eye crusties that were causing problems.  So I set her up with a warm, wet washcloth and hoped that would do the trick.  Except it didn't.  She didn't complain so much so I didn't think a lot about it.  When we ventured out to the store on Wednesday I picked her up some eye drops and hoped maybe THAT would work.  We just didn't have the money right then to take her to the eye doctor, and I was pretty sure the level of nearsightedness she was reporting wouldn't have happened overnight anyway.  I mean, I've worn glasses for 15 years and it took as long for my vision to get as bad as it is.  From what she was telling me her vision was as bad as mine. Well, later on Wednesday I realized she was making a lot of trips to the bathroom and I asked her if she was feeling okay.  I suspected a UTI since she has a history of them.  But she said everything was fine, although she had been drinking more water so it seemed like a normal thing that she would also be using the toilet more, right?  Then I talked to my husband on his lunch break around 4pm and he was telling me that he was glad I wasn't obese while I was pregnant with Angelina because he was listening to a program on NPR about women who are obese or consume a lot of sugar or high fructose corn syrup during pregnancy are at a greater risk of having a child with Type 1 Diabetes. And then all of her symptoms clicked.  So, I did what any responsible mom would do and I logged into the WebMD Symptom Checker just to get a second opinion and this is what came up: (click to see full size image) I had pretty much ruled out nearsightedness just because of the degree of blurred vision. So I tried to convince myself that it had to be a UTI, or maybe dehydration (although that wasn't likely with the amount of fluids she had been taking in).  I decided to give it a couple of days and see what happened. Thursday morning she woke up and felt terrible and was coughing like crazy and it was all wet sounding.  I asked her if she wanted to go to the doctor and she said yes.  Just for background purposes I have to say that my kid is no stranger to the doctor's office.  She has several other medical issues and on average sees the dr at least once a month for one reason or another so if she doesn't HAVE to go she'd prefer not to.  So when she willingly agreed to go to the dr that day I knew she was in pretty bad shape. I called when the office opened at 9am and they said to come in at 10am.  So I woke her up and we got dressed and stopped at McDonald's to grab some breakfast.  I had told them that we were coming in for her cough and because she had "other" symptoms.  I was firmly in denial and kept trying to convince myself it was just a UTI.  I mean, I don't know anyone with Type 1 Diabetes.  No one in either mine or my husband's immediate family have it, she can't have diabetes, right? Of course, they had her pee in a cup (which took a while).  She had actually lost about 4 lbs since we were there 3 weeks prior, which of course was concerning.  So, the dr came in to see her and said they were going to check her urine, but in the meantime they hooked her up to the nebulizer because the dr said she heard some wheezing.  So we sat for the 15 mins or so while her breathing treatment finished.  Then the dr came in with this serious look on her face and said "We need to do a finger poke to check your blood sugar.  If it's high I'm going to have to send you to the ER because there is sugar and ketones in her urine and it looks like it's probably Diabetes."  (and yes, the capital D was on purpose)  Her blood sugar was 570 mg/dl.  In case you're not familiar what "normal" blood glucose levels are - Between 70-100 is considered "normal", 101-126 is considered "pre-diabetes" (generally referring to the development of Type 2 diabetes, which is a completely different disease), so a reading of 570 is pretty obviously not normal. To be continued...

The New Dirty Word - Diabetes (The ER)

Her blood glucose was 570 at the pediatrician's office so we were sent to the ER.  I pretty much knew at that point that we would be spending a couple of days there.  We checked in right around noon and they checked her BG again - it was at 535.  They also had her pee in another cup.  We waited in the waiting room for what seemed like forever, but in reality it was maybe 30 minutes.  The real waiting started once they got her back into a bed.  They came and got her for a chest X-ray since I had told them about the pediatrician hearing something in her lungs, and since we were there anyway it was good to get checked out.  She was excited to be able to see the picture of the inside of her chest. There wasn't anything immediate that needed tending to aside from getting an IV in.  That was kind of a nightmare because they couldn't get the needle into the vein in her elbow, so they were poking around in there for a few minutes before giving up and going for her hand.  Throughout all of it she was amazingly calm and all the nurses remarked about how well she was doing and how they had some adult patients who could take a lesson from her.  Finally the nurse had a second nurse come over to assist with getting the IV in after the second site wasn't cooperating and her vein kept moving around.  They finally got it in and everything hooked up and started her on a normal saline drip to get her hydrated and flush out some of the sugar and ketones that were floating around in there. From there we mostly just waited.  The ER doctor did eventually come in and confirm that it was, in fact, diabetes and that she also had pneumonia (so glad we got those x-rays).  They started her on an insulin infusion shortly after.   A little while later (pardon my timeline, the entire hospital experience is just a time blur) we were greeted with a teddy bear named Rufus who came accompanied with a blue JDRF backpack full of goodies for kids with diabetes.  Really, Rufus was the goody and the rest of the stuff was educational materials and a brand new Accu-Chek glucose meter and our favorite invention - the fastclix lancing device.  Well, a favorite as far as lancing devices go.  The backpack was brought to us by the Diabetes Nurse Educator who wanted to introduce herself and make sure Angelina was okay and to let us know that she would be spending a few hours with us the next day to get us educated on managing Angelina's diabetes care. After that we just did some more waiting.  We were told around 4pm (maybe?) that they would be moving her to the Pediatric ICU eventually.  My husband was at work through all of this and we had been texting back and forth.  He was finally able to get out of work "early" at 5pm (after working since 6am) and headed up to meet us.  Angelina was so excited to see her dad, I think mostly just because she had been stuck in a little curtained room with me for the past 5 1/2 hours.   Shortly after her arrived they FINALLY came to move us up to her room in the PICU. To be continued...