Thursday, July 31, 2014

Sleep at long last

Reagan slept last night!!!! Granted, it was in her chair (because I was too scared to try to move her), but she slept nonetheless! She woke up this morning around 6:30am with a scowl on her face. She's been very serious/scowly all day today. Not as still as yesterday, but not flailing around either. Not gaggy but still sticking her tongue out and smacking here and there. This morning she had a BIG poo diaper and we decided to just go ahead and give her a bath right then. I'm glad we did, because she dozed off shortly thereafter (while PT was working with her). She slept for a bit and then woke back up just in time for OT. Unfortunately, for OT, she dozed off right as she got here! She slept for a while longer and then woke right around 3:30pm. She was awake until 8:30ish when she dozed back off again. Hoping we can get her into her bed without her waking up! Praying for sleep and smiles for my girl!

Wednesday, July 30, 2014

Praying for better days

Reagan had a HORRIBLE night last night. Super nauseous, I was afraid to leave her side...and I didn't until close to 1am. She seemed to be doing a little better, although not asleep, so I laid down. I got back up with her several more was a LONG night. The nausea has definitely been better today, no actual throw ups and maybe not even any retches (she was on just pedialyte all night), but lots of other things that point to her still being nauseous (teeth grinding, sticking her tongue out, super spitty). This morning she had her follow-up with GI. Talk about good timing. Ryan was a handful (that's why I usually try to leave him with Grandpa for Reagan's appts but Grandpa is out of town)! We spoke to her doctor about everything (recent increase in nausea and "off" days) and the game plan right now is to increase her milk of magnesia (in an attempt to get her more "regular") and increase nortriptyline (from 5mls 3x/day to 6mls 3x/day). Because this medication has the potential to mess with her heart, we had to take her over to get a baseline EKG before increasing it (thankfully they were able to squeeze us in so we don't have to go back)! We also discussed potentially switching her formula again, but we're going to try this first (he does want another gastric emptying scan and abdominal ultrasound though). PRAYING this works! She was still very tense today, super stiff and difficult to maneuver, lots of chorea, and vocal/easily agitated (which made for an interesting car ride with her brother)! After we got home, we decided to try clonidine (we had given her oxycodone on the way to the doctors office and it didn't do a thing). The clonidine helped her doze off for the first time in a long time. Unfortunately it only lasted 30min or so, but when she woke up, she was much more calm. Legs were still and she wasn't even trying to jam her hand down her throat! She dozed off again for a bit and then was just very calm but awake (and spitty) for the rest of the night. I gave her clonidine again around 10:30pm and as of now, she's asleep! Prayers that my girl can get a good night's rest (even though she's still in her chair) and wake up tomorrow feeling SO much better (or keep sleeping)!

Tuesday, July 29, 2014

Horrible nausea

Well, things have definitely gone from bad to worse. Reagan was up nearly the entire night last night and she was miserable moaning off and on! I had to move her to her chair at 1:30am, then again at 2am she was fussing, and again at 4am, and then I got up to run at 6am. Needless to say, I'm exhausted...we're all exhausted! My poor sweet girl is exhausted...and now she's nauseous again. She had therapy today (PT & OT) and did very well, considering. But as the day went on, the nausea got worse. And her chorea is still out of control and she's jamming her fingers down her throat (which REALLY doesn't help when she's nauseous)! Tonight the nausea was relentless. LOTS of throw ups. Lots of retching and gagging. It's painful to watch. And you have to be vigilant, sit literally right on top of her, because it could happen at any moment. Her throat is quite junky from all of the gunk that's been coming up, but hopefully it's just her throat and it's not getting into her lungs. As luck would have it, we have a GI appt tomorrow morning. We will definitely be going over our options and try to figure out our next steps if this nausea does not stop on it's own. My poor sweet girl. I just hate to see her suffer like this! It's been so long since we've seen this kind of nausea, but there has definitely been a gradual increase in the last week or so (and I don't like it one bit)! Tonight I gave her her pm dose of clonidine early, hoping it would help her to doze off, but instead it had the opposite effect, making her irritable and fussy (heartrate in the 170s)! After a while of that, I realized it wasn't getting any better, so thankfully a dose of Lortab was just what the doctor ordered, and she was eventually able to settle down and fall asleep (her heartrate is down in the 120s now and her O2 is in the low 90s but that's because she's got her head tilted to the side). PRAYING she can stay asleep and that the nausea is gone by morning. Please keep her in your prayers!

Monday, July 28, 2014

No improvement

Today we haven't seen the improvement we were hoping for. Reagan had another very restless night sleep. She just looks exhausted. And to top it off, her chorea is out of control! So she's exhausted and moving nonstop! Poor thing! Still wanting that hand in her mouth, but she's very bitey, so we have to keep it away the best we can. She was also pretty sensitive today and flipped out a couple of times. Her nurse gave her oxycodone and clonidine and while both seemed to take the edge off a little, neither was able to relax her enough so she could rest and both were only temporary fixes, they did not last long. We were able to get her in the bath tub, but it was a struggle as she was very kicky and flaily! And tonight she was sweating herself wet, so not sure how much good that bath did. We really have no clue what's going on in that body of hers. Are things going to get better...they sure haven't in a while! I'm so frustrated for her! Praying for better days for my girl!

Sunday, July 27, 2014

Still stressed

Today was very similar to yesterday. Reagan slept in her chair last night, she did wake up fairly early, but I think she got some sleep. Today she's continued to be tense, vocal with over stimulation, and just overall a little kooky. She did not nap at all today. Her nurse gave her oxycodone at one point to try to take the edge off and hopefully allow her to rest...didn't happen. She's still very crunchy, hands in the mouth A LOT, lots of chorea, a little gunky in her throat at times but no actual nausea (but she's still getting Zofran). Not exactly sure what these days are. Are we headed toward bad days, are these milder versions of her bad days??? No clue. It's hard to get your bearings when you have no idea where you stand! Hoping and praying for her to settle down in the upcoming week and actually have some legitimate 100% good days (I honestly don't remember when the last one was)!! Now, on to trying to get this restless girl to sleep tonight!! 
Did I mention she was bitey? 

But still giving us little smiles here and there! 

Saturday, July 26, 2014

Fussy crunchipotomus

On a good note, Reagan has not had any nausea today (thank you God), but on a bad note, she just hasn't been feeling well! This morning I found her stuck flat on her tummy, unable to turn over! Her eyes were still closed though, so I just repositioned her and left her for a while longer. Not sure how much quality sleep she got last night. She's been very moany/groany today, escalating into tears at times. She's having lots of gas, so it's very possible that her tummy is what's ailing her, but there's no way to tell. She's super tense in her body, very crunchy (she reminds me of a rolly poly), biting at her hand I've spent most of the day trying to keep her hand out of her mouth and giving her breaks from sitting in her chair (her preferred positioning). She's done OK on the floor, but her crunchiness just makes her roll over to her side a lot. In general, she's just fussy. Whiney...moany...pretty miserable! She did sleep off and on thanks to Lortab and clonidine. I always hold out, not really wanting to give her any more medications, but some days they are just necessary. We didn't have a nurse today so were actually hoping we could load everyone up and take a little road trip. That did not happen. Today just wasn't the day. Reagan was also pretty sensitive to noises and sounds (especially music on tv), so it worked out better for me to just stay upstairs with her most of the day. Tonight she reluctantly dozed off in her chair and I didn't dare move her. It's a very restless sleep so I'm just keeping my fingers crossed that she's able to sleep through the night. She really needs some quality rest!

Friday, July 25, 2014

So sick of nausea!

Reagan slept well until 4am or so. I could hear her moving around, so Mike got up and went in there. She wasn't falling back asleep though, so around 4:30am, I decided to move her into her chair (my concern was her laying flat and getting nauseous). Once in her chair, she actually started having bouts of fussiness. They'd come and go. I definitely think something was hurting her. Poor girl. I gave her a dose of Lortab and she finally dozed back off around 5:30am. This morning she kept sleeping and we actually thought she might sleep all day! She did however wake up around 9:30am, just in time for PT. At first she did fine, although she was very tense in her body and slightly gaggy, but the more her therapist tried moving her (and stretching her), the more irritated she got, fussing/whining. Her nurse did give her a dose of oxycodone to try to calm her down and that seemed to help a little. Her speech therapist saw her immediately following PT and she just took it easy with her. My poor girl was definitely not feeling well. Her nausea just continued to increase, lots of mouth movements and retching, which was only made worse by her continuously shoving her fingers down her throat. She was desperately in need of a bath, so while brother was napping we managed to give her a quick bath, but it was a difficult task with such a gaggy girl (diaper changes were equally as challenging). After her bath she dozed off and slept the rest of the afternoon. Every now and then she'd flail around and try to put her hands in her mouth (and gag) while keeping her eyes closed, but just holding her arms down would help her to settle down and fall back to sleep. She woke back up around 30min or so before her nurse left, stayed awake long enough to have her diaper changed (only the second of the day), and move downstairs where she later fell back asleep! Hoping she makes the transfer into her bed and gets some sleep tonight (and wakes up without nausea tomorrow)!! Even with all the nausea she had today, there were no throw ups, so hopefully we're headed in the right direction!?!?