Slow Torture: A narrative told through Facebook status updates.

Thursday 5:05pm

Finally got the call. Quick dinner and then we're off!

Thursday 6:59pm

Settled in and crafting

Thursday 7:46pm

Waiting anxiously to see if KayTar will win the radio contest...she has prepared confetti to throw just in case she does.

Thursday 9:07pm

Watching The Little Mermaid with my little chickadee.

Thursday 10:36pm

KayTar is out for the night, but her alarms keep going off. It's not looking like a peaceful night is in store between that and the frequent glucose/vitals checks.

Thursday 11:42pm

The nurse lowered the respiratory rate alarm to 10 so it will stop ringing every 30 seconds.

Friday 12:07am

So now that they fixed the respiratory alarm by lowering it, now the ECG is all "Bradycardia!" Lots of ringing around here tonight.

Friday 11am

She started fussing for a snack (14 hours in) and the hospital ice chips came to the rescue. :) She said it is the most refreshing snack ever.

Friday 12pm

Happy little patient

 Friday 4pm

We have reached misery...I rocked her to sleep, but I don't think it will last long.

Friday 6pm

She's still asleep, thank goodness, but it is looking like we'll be here another night.

Friday 10pm

Her glucose is only 58 at the 25 hour mark! She can get down to 58 in like 4 hours on a school day! This is going to be a long night of hourly glucose checks.

Saturday 12am

Gah. Her glucose has now gone up to 63. I'm starting to think it will never drop below 50. She's on hourly glucose checks until it does and only one of us sleeps through those...and it sure isn't me!

Saturday 3am

Glucose was 46, so they drew labs...next up the shot of glucagon and glucose testing every 15 minutes for an hour.

Saturday 4am

She can eat now and in typical KayTar fashion, she isn't. She's been vomiting, though, so that might have something to do with it.

Saturday 5am

Vomiting in spite of Zofran, so they're starting dextrose in her line. Seems like she was mostly fine (but unhappy) until the fasting was over!

Saturday 8:30am

She has tolerated 2 ounces of Pedialyte and 2 ounces of Pediasure this morning per her g-button (it hasn't come back up yet), but she isn't maintaining her glucose like they want, so they are starting her on D5 and we'll try more Pediasure in a bit. She has to be able to maintain a glucose of 70+ to be released.

****

I'll have more to say about it, I'm sure...but let me say this for now...WORST TEST EVER. She's had all sort of tests and procedures, from labs to LPs to surgeries, and I think this takes the cake. It was so hard on her. She was so sad/mad/pitiful after she hit her breaking point and there was still so much left after that. So many, many, many needle pokes. So much waiting. So much crying. Ugh.

Wonky Day.

Oy vey! KayTar had quite a strange day today! I think she made at least 4 trips to the nurse and it seemed like the nurse and I were communicating via email nearly all day.

Let's go back to last night and start there. KayTar tolerated a Pedialyte feed yesterday afternoon, and a half and half (Pediasure/Pedialyte mix, not the kind you put in coffee) feed before bed. She didn't vomit anymore, even after the Zofran wore off. This morning, I gave her another half and half feed because it is gentler on her system and she is more likely to tolerate it well. The downside is that it doesn't hold her over as long. I sent some baby food veggies in her lunchbox labeled "Breakfast", and emailed the teacher to let her know KayTar needed to eat those at breakfast to give her glucose a bit of a boost mid-morning, because it is one of the only remaining carbohydrates in her diet.

KayTar did eat about half of the jar, but I guess it wasn't sufficient. During PE, she freaked out a little, saying she was very hungry. She only does this when her glucose dips and she starts to feel it...it is like mild panic, not typical hunger. She went to the nurse and ate a couple bites of the tuna from her lunch and felt better. The nurse didn't check her glucose at this time. Next, she went to music and complained once again. It is important to note that KayTar HATES eating and LOVES school, especially her extras, so this wasn't a ploy to miss class. Because it had only been 30 minutes and it was pretty close to KayTar's standard glucose check and pump feeding, the nurse decided to let her finish music and then check her out after. It was earlier than her regularly scheduled glucose check and KayTar's glucose was 63, which is a little low, but not in the worrisome range quite yet. She got her tube feed immediately and all was well.

Later in the afternoon, she started to complain of being exhausted and was very insistent that she needed to lay down, so she went baaaack to the nurse. The nurse checked her glucose with a different meter that was handy and her glucose was 83, which is firmly in the normal zone. There is some variation from one meter to another, but I doubt it was a 20 point or more difference in readings, so I'm guessing that she was probably somewhere in her safe range, if not exactly in the 80s. KayTar said she thought she was going to vomit, but thankfully she didn't. She laid down for a bit and went back to class when she felt a little better. I picked the kids up via the front office today instead of the line because I didn't want her out in the heat and the sun after a day like this. When we got home, I checked her glucose and it was back down to 57 (her third verified low number in less than a week). I gave her 4 ounces of Pediasure, rechecked her glucose and it was 106, then gave her another 4 ounces shortly after...her glucose was 86 not too long after that, still a good number, and she kept all of her Pediasure down. Success!

I'm not sure WHAT was going on today. I have a suspicion that it is glucose related, but most of her readings today were not in the danger zone. I think that her levels might have been jumping/dipping more than usual, causing some unpleasant side effects. Perhaps she is at a deficit from the lack of regular feeds yesterday? I honestly don't know. I think that the extra energy she expends at school is coming into play, too, but I'm not sure what we need to do about it. We'll see how tonight and tomorrow go, though. I hope we find a solution and get her crazy little system back to equilibrium soon!

Poke!

I briefly mentioned that we would be testing KayTar blood sugar periodically, though, I didn't post the details as I didn't have them yet. I know you've all been on the edge of your seat with anticipation, so wait no more! I have the answers you seek. And if you don't seek? Well, I'm telling you anyway.

There exists a theory in which KayTar's episodes are tied to drops in her glucose level, the pediatrician and neurologist both think there might be something to this theory, especially since her last episode was accompanied by a significant drop in her blood sugar and it wasn't the only occassion this happened. Now we are going to track her glucose for a while to see what it is like when she is healthy and her body is functioning properly, when she is sick and her intake is down, and during/after episodes. The bad news is that we're going to keep an eye on it at least through her next episode. The good news is that we are not going to have to do it a set number of times EVERY SINGLE DAY. We need a decent sampling of different types; first thing in the morning, 30 minutes after eating, 2 hours after eating, and then some general checks, too, but I don't have to test her at all of those times every day, which is such a relief.

If I had written this post yesterday morning, it likely would have been full of angst due to the dread I was feeling about poking my wee darling, about how much she HATES finger sticks and named them the WORST thing about the hospital trip (even worse than the cath!). If I had written this post yesterday afternoon, I would have written about what a FIGHT she put up in the doctor's office when we did a test run, about how it took the doctor, the nurse, and myself to get a proper finger stick and reading. I would have written about how her face crumpled when the doctor told her that we would have to be doing this at home for a while, too. (I really appreciate the pediatrician's willingness to explain it all to her and be the bad guy, so KayTar doesn't think we're just torturing her of our own accord.) If I had written this post last night, I would have written that our first finger stick at home wasn't too bad, except for the part where she cried a little and said, so very accusingly, "Mom! You are being LIKE A DOCTOR!" which is likely the very worst insult she could think up.

Though, I am not writing this post at any of those times, so instead I can say that I am very proud of my girl this morning. She agreed to her finger stick, sat still, held her brother's hand, and didn't flinch or cry when I poked her finger. She stayed still while the blood drop formed and while we placed it on the strip. She did a fantastic job! I knew she would eventually adjust, as she has adjusted to everything, but I really didn't imagine she would adjust SO quickly. Yesterday morning it was the worst thing IN THE WORLD, today it is just one more barely noticeable inconvenience in her life. I don't know how she does it, honestly, but it still impresses me. The girl is a trooper. I am bribing her, for the record, mostly because it makes me feel better. She gets a quarter every time she gets a finger stick, which goes into a special bank, that will be used for a shopping trip once she's racked up enough coin. It is a win-win really, I get to feel a tiny bit better about poking my poor kid and she'll get to buy a shiny new toy with the money she has earned with her own blood, sweat, and tears...well, minus, the sweat and tears part, I suppose.

KayTar and her new bank.