Tuesday, August 26, 2014

Not good

Reagan slept well last night...never woke up from when we first laid her down! When she woke up this morning, however, her mood was not good. She was very tense and crunchy and there were no smiles to be found! The silence didn't last long and before we knew it she was in a full blown bad day! Her nurse gave her some oxycodone but it didn't seem to do much. She cried for a full 45min or so and then literally 1min after she got a dose of Ibuprofen, she fell asleep! (So it's doubtful that it was actually the ibuprofen!) She's slept most of the day today and that's a good thing! When she woke back up around 3pm, she wasn't crying, but was as tense and miserable as she could be (thrashing, biting, flailing) without actually crying. Another dose of oxycodone and 30min or so later, she was back asleep again! Poor baby! Very rough day. She slept until just before 7pm. She woke with a lot of thrashing and a pained/startled look on her face, but no crying. It took a while for her to finally doze back off...lots of essential oils and oxycodone! She's still asleep at the moment, but keeps moving around in her sleep, so it may not last much longer. Please say some extra prayers for my girl! 

Monday, August 25, 2014

Gastric emptying scan done (again)

Sleep last night just wasn't happening for my girl. I woke around 2am to hear her rolling around hitting the side of her bed. Considering the retching I had seen a few hours earlier, I didn't think it was wise to leave her awake in her bed. I moved her to her chair and tried giving her a dose of Lortab in hopes that it would settle her down and help her to fall back to sleep. No such luck. She was awake the rest of the night. Other than being awake, she seemed fairly stable, so I decided to go ahead with her scheduled gastric emptying scan (8:30am arrival for a 9am start time). I switched her over to pediatlyte around 6am and then we disconnected her completely around 8am. We fought our way through first day of school traffic and amazingly enough, got to Dell with time to spare. This is the second time we've done one of these scans at Dell (the first was 1/27/14), her GI doctor's thinking was that maybe with the increased nausea we've been seeing (which has been better since switching formulas), maybe she's having dumping syndrome. To be honest, I didn't really see any need to do another one of these tests, but I just went along with it (it's a fairly noninvasive test). Reagan was great! Other than a little licking/smacking, she did fine during the entire hour of laying flat for the test! Afterward (while they checked with the doctor trying to decide if they needed to do any more pictures...sometimes they do another scan or two an or or more after the initial one), we walked around the hospital and looked and the light-up butterfly wall and outdoor courtyard/waterfall. By the time we got back from our little excursion, they told us we were done and we could leave! (So based on that, I'm assuming the scan was normal, but I guess I'll find out more at the care conference Wed!) Reagan was great in the car and when we got home she seemed a lot more relaxed in her body and obviously tired (her poor eyes were completely bloodshot). Her nurse had her on the floor stretching her and playing with her switch toy and she seemed to be enjoying herself! Then all of a sudden she started whimpering, and next thing I knew we had full blown tears! Not sure what it was, but she definitely seemed to be in pain! Her nurse gave her some oxycodone and she eventually settled down and fell asleep (but she was very easily startled in the process)! She woke up once for 15min or so and was still looking very wide eyed and excitable, but thankfully she dozed back off without any major freakouts! As of now, she's sleeping soundly in her bed! Praying she gets some much needed rest!

Sunday, August 24, 2014

Restless night, restless day

Reagan was very restless again last night! I'm thankful that she at least tolerated laying in her bed, but I really don't think she got much sleep!  Today has been very similar to yesterday (and the day before). She's sweet and even a little smiley, but you can definitely tell that her body is "off". The chorea has increased a lot (she's kicking, kicking, kicking) and overall her body is just plain tense! Her temperature regulation is also still WAY off (cold hands and feet, super sweaty back). She did not do as well on the floor today as she was a little more spitty/chokey. Tonight she also gave me several big retches and I thought for sure she was going to throw up, but she never did. She was very resistant to medication tonight as well. I gave her oxycodone to try to calm her down around 7pm...it did nothing! Then around 10pm I gave her clonidine...again nothing! Finally around 11:15pm she started looking sleepy and Mike laid down with her and was able to get her to sleep! No idea how long this will last, but I need to get to sleep soon!!

Saturday, August 23, 2014

Off but OK

Reagan slept OK last night. Still pretty restless, but at least she was in her bed. She's been a little more sensitive today. Not a fan of us talking (almost freaked out once this morning when I was talking to her nurse) and had a huge crying meltdown tonight because of brother's noisiness. A little spitty/nauseous, making lots of mouth movements but no actual retching. She's definitely more tense in her body (we think she's still having tummy pains) and her temperature regulation is way off again (hands and feet super cold and clammy but her back sweats wet in minutes)! Tonight she preferred to be on the floor kicking around. I tried hold her a few times, and she made it clear that she preferred to roll around on the floor! Still having lots of gas, so I helped her poo again (her nurse gave her 30mls of milk of magnesia and still nothing), and I think she HAD to feel better afterward! She was resisting sleep tonight so I have no clue how much sleep she's going to get! At this point, I'm just praying she'll tolerate being in her bed!

Friday, August 22, 2014

Tense but hanging in there!

Reagan was still a little agitated last night but eventually calmed down with the help of Lortab (that clonidine...we never know when she's going to have a negative reaction to it)! I woke up at 2am to the sound of her pump beeping, thankfully it didn't wake her up! She was sleeping, but restless, and that's probably how she ended up with her tubing wrapped around her arm (which resulted in a kink, hence the beeping)! When I got back from my run at 7am, she was still sleeping (eyes were closed), but she was moving around a lot. By the time I got out of the shower, she was up! She was in a decent mood, still tense, but calm. She did freak out a bit this morning when I was talking to her nurse! Definitely didn't like us talking around her...she just wants us to talk TO her! I managed to calm her down fairly quickly and she was fine the rest of the morning. She didn't have a super successful session of speech (go figure), but she did do pretty well with PT. Her nurse used some of the "Relaxing" essential oil spray we got the other day and she really think it helped settle her down when she was getting worked up! Hoping we can keep her calm but if she's going to go there, it's better she gets it out of her system over the weekend! We've got a super busy week next week!

Thursday, August 21, 2014

Tummy pains

Reagan woke up last night around 2am and was rolling into the side of her bed over and over again. I decided to go ahead and give her her nighttime dose of clonidine and thankfully that seemed to help her fall back asleep! She would vocalize off and on but every time I'd look at the monitor, her eyes were still closed and she was asleep! She woke for good around 7:30am and I found her in a SOAKED diaper, so that might explain some of her restlessness! She was sweet and giving me an occasional smile, but I could tell she was tense. Still very crunchy and more sensitive than yesterday. We definitely think her tummy is giving her trouble! As of yesterday she was dirty-diaper-free for 5 days, so I helped her go then and also this morning...we definitely think there is some cramping going on! Poor girl! This new formula is doing a number on her bowels (much harder)! I spoke with her GI doc today  (who's been out for 2 weeks), and he thinks we should try increasing her milk of magnesia even more to try to get her going again! So that's the plan. We also spoke about possibly increasing the rate of her formula, in order to get her more calories (very slowly just a cc a day), but I'm still slightly hesitant to make any changes right now. I don't know. We've got a crazy busy week next week, and I'm so afraid to do anything that might rock the boat! We'll see. Next week she has 4 appts over 5 days AND another care conference with all of her doctors! I honestly have no idea what to expect right now out of her (good day/bad day wise)...she hasn't been following the 11 day cycle for a while now. This afternoon (after PT and OT), the seating guy came to add the new cushions to her wheelchair! She's growing and needed more space, there are still a few adjustments to be made, but there are a couple more things they have to order first! Her bed also needs a new motor for the bottom half (it's making a terrible noise), so they'll have to do that as well! Tonight Reagan was a little more sensitive again, but seemed slightly better after a dose of oxycodone and Ibuprofen. When it was time for bed, clonidine definitely seemed to aggravate her, but I held on to her tightly (she is ridiculously strong) and she eventually settled down and fell asleep. Unfortunately that didn't last once in bed and Daddy had to lay down with her to get her to finally fall back to sleep! Hoping and praying she'll get some sleep and wake up in a decent mood tomorrow!!!

Wednesday, August 20, 2014

Very crunchy!

Reagan slept well last night and woke up this morning sweet and smiley again! She only had one therapy this morning, speech, and she was good for that! She was very crunchy today and the bean bag chair was definitely her favorite place to be! She could crunch up in a little ball and then drift off to sleep...which she did a couple of times! It was definitely an easy going, take it easy sort of day today! We even started some essential oil therapy for her with a new vapor mist diffuser Grandma got her! The coolest thing about it is it changes colors...very relaxing! We put a few drops of peppermint EO in it to try to help with her nausea/tummy issues! After her bath, she really relaxed and dozed off for a couple of hours (while her brother burned off some energy in the pool)! She woke up right around 7pm and was only awake for a couple of hours before dozing back off again. She was slightly sensitive tonight while awake and obviously still pretty tense in her body (hence the crunching), but otherwise OK. She fell asleep on her own tonight, so hopefully she'll stay asleep!