Wednesday, September 2, 2015

Busy day

Reagan slept well last night! She did wake me up with a vocalization at one point, but I went in and found her still asleep but uncovered. I covered her back up and went back to sleep! Both she and her brother woke up at 7am this morning. She woke up a little vocal, but content. Ryan did a little naked swinging before the nurse got here. That's his new favorite thing to do. Take his clothes (and diaper) off and run around naked. What a skill. This morning we had a little excitement. Reagan was doing speech when I dropped Ryan off at school. On my way home my tire gauge was telling me my tire pressure was low, so I stopped at a gas station and attempted to check/fill them myself but that didn't fix anything, the sensor was still reading low. So then I decided to just go and have them checked at a tire place. On my way there, I was trying to call Reagan's nurse and tell her what I was doing, when she answered the phone in a frazzled state telling me that Reagan had just had a HUGE blowout and she couldn't talk! Oops! I wish I had gone home instead! She managed to get it under control herself and I got my tires checked (they were all just a little low) and headed back home. She was having some gas/tummy pains that made her a little vocal, but she was OK. PT came and worked with her and then we promptly packed up and headed to Dell for hip x-rays and her hematology appt. The hip x-rays were super quick, but the hematology appt took FOREVER. We really liked the doctor and she seems very much on top of things. She, of course, thinks the neutropenia we saw was just transient and not a problem, but she ordered a bunch of labs just to check everything out! The labs are what took so long. After a very long and thorough appt with the dr, we then sat in the room 40min before the nurse ever came to draw her blood! I honestly think they might have forgotten about us (because they didn't come by at all until our nurse went to check with them)! Of course that then put us coming home in 5 o'clock traffic! Crazy day. Glad to be home. Of course I came home to a super grumpy boy (who took a late/short nap) and a vocal high maintenance girl...so not a lot of rest being had on my part. I'm not going to be getting much rest of the next several days as we are nurseless until Tuesday of next week! Every one of our nurses are going out of town for the Labor Day holiday and of course our nursing agency never found anyone to pick up the shifts. Don't even get me started on that. Ugh. Anyway, it's going to be interesting trying to manage taking Ryan to and from school, while dragging Reagan along with me! Fun times. Pray for me! Pray for two easy kids over the next 5 days!!

Tuesday, September 1, 2015

Oh sleepy day

Reagan slept all night in her bed!!! Wooooohoooo!! I did hear her a time or two, but each time she'd make a noise, move around a bit, but then go back to sleep! And sleep she did! Today has now turned into a sleepy day!! Her nurse did change her this morning and move her into her therapy room, where she was awake and calm for 30min or so before falling back asleep. But she's been sleeping ever since. Even through diaper changes. Poor girl. She needed it. I'm hoping she'll sleep through the night and wake up much improved tomorrow! She's been two days without therapy so tomorrow we'll play catch up and then go to an afternoon drs appt! Unfortunately we're adding a new specialist to the mix. Tomorrow we see hematology for the first time. Her last two blood draws she came back neutropenic (low neutrophils). Hopefully it's nothing and we just caught it at a low point, but it's something we need to talk to the hematologist about since my sister did have chronic benign neutropenia as a kid. Hoping it will be an uneventful/formality sort of appt. My allergies are killing me today (and Ryan's got a runny nose as well), so Reagan's lucky to be sleeping through this nasty allergy headache of a day! She did wake up at one point tonight from about 10-10:30pm and was very wide eyed and stiff as a board but calm. She then dozed back off in my arms and is now sleeping in her bed! Sweet dreams my little sleeping beauty!

Monday, August 31, 2015

Bad day

It was a rough night last night and a rough day today! Definitely a "bad day", but not as bad as they sometimes are. So when she was miserable...she was pretty miserable!!! But there were a few times, once this morning from about 8-10am and again this afternoon from 12-1 where she was awake and seemed OK. She was calm, relatively still, and even a little laughy at times. But then the pain (or whatever it is) would set in and she'd be moany/crying until we gave her some sort of pain med. Unfortunately, nothing has worked for too long. I think 2hrs max and usually 30min-1hr...that's not nearly long enough. Her nurse kept her on the floor the entire day, not because her temp was off (although her hands/feet were still cold/clammy), but because when we laid her down at 8am she almost immediately calmed down and relaxed. Plus it was good for her to spend some time out of her chair. Most bad days, she's in her chair almost nonstop. We did keep her left arm restraint on all day today because she was very bitey...especially with that hand. For the right hand we just held it or kept it under a weighted blanket. She did doze off and on throughout the day, with the help of meds, but not nearly as long as we had hoped. She was also holding her pee, she had less diapers than usual during the day but then tonight she didn't go until I finally helped her with the warm water trick! It was a big one though so hopefully that will help her sleep! She eventually fell asleep in my arms and Mike was able to move her to her bed. I would LOVE for her to sleep in her bed tonight, but I'm skeptical considering she's pretty much been getting pain meds around the clock and every time I go in there to give her her normal pm meds, she moves and crunches up (but keeps her eyes closed). Praying for a better day for my girl tomorrow and a good night's sleep tonight!

Sunday, August 30, 2015

A bit off but still smiling

Reagan woke up this morning around 3am, she was very vocal. I changed her and tucked her back in bed, but I'm pretty sure she never went back to sleep. Finally around 7am, I got up and moved her into her therapy room. She promptly sweat through her clothes sitting in her tomato chair. We moved her downstairs and set up a nice cushiony pallet for her to roll around on and that's where she spent the entire day! She's been very kicky, squirmy but good. Chewing on her hands a lot (maybe because she can't get them tangled in her hair anymore)! Tonight she started up with some crazy laughs. She's definitely a bit off. I started giving her pedialyte flushes today, so hopefully that might help with whatever is going on. She did doze off with the help of clonidine and is in her bed asleep at the moment...let's just pray she stays that way!

Saturday, August 29, 2015

Still good

Reagan slept well last night and even slept in a little this morning, but woke up smiling and in a good mood again. We had a new nurse orient this morning. Not sure yet if she's a good fit, but we may find out as we have multiple nurses out this next week because of Labor Day weekend and we need someone to fill their shifts! Grandma came in last night so both kiddos are pretty happy about that...lots of Grandma time today. Tonight Grandma stayed with Reagan while we took Ryan to a baseball game. He ate at least half a giant bag of cotton candy, so yeah he had a good time! We did have a super loud annoying woman behind us that took some of the enjoyment out of the game, but overall we had a good time. Tonight Reagan was having some temperature regulation issues, so we couldn't really let her sit in her tomato chair at all and we had to either hold her or keep her on a pallet on the floor. I think I'll definitely start giving her the pedialyte tomorrow. Everything is still good but there are some signs that we don't want to ignore! Hoping for lots more good days for our girl.

Friday, August 28, 2015

Hoping for a good weekend

Reagan slept well again last night waking up around 7:45am this morning. She's still super sweet and smiley today. Today has been very similar to yesterday. Still pretty crunchy, a little sleepy at times, but a little more vocal/moany (especially when anyone tried to get her to work today...during speech and school)! She's also been little more licky/mouthy and putting her hands in her mouth a lot...but still good. Hanging in there. Hoping she can have a good weekend!

Thursday, August 27, 2015

Crunchy cute girl

Reagan has had a good day today. She slept well last night and woke up super sweet and darling this morning! That hair...looks just as cute this morning straight out of bed as it did right after getting cut! It's nice because it's just long enough to pull back if we want, so she really has several ways she can wear it. She's still been pretty crunchy today. She had PT this morning and was trying to doze off during therapy. She did doze off shortly thereafter and then slept most of the afternoon (missing OT and school)! She woke up around 5pm and then was awake til about 10pm. She still looked pretty sleepy most of the time, with her eyes half closed and crunched in a ball. But she was restless and it took her from 9-10 to finally doze off completely. Daddy was able to make the transfer to her bed and she's laying in bed in a little ball as we speak. Hoping she can get another good night's sleep tonight!