Tuesday, July 22, 2014

Kooky and vocal

Reagan slept in her bed til about 4:30 or so, but I was afraid to just leave her laying flat like that for too long, so we moved her to her chair. She dozed back off and slept for a while longer. She was very vocal all day today. Lots of crazy, nervous laughing. We had to be careful about not overstimulating her, because she was laughing but still very much on edge (thankfully no nausea). She only had one therapy today, OT, and she did OK with that. She did have two huge liquidy diapers, so it's very possible that maybe she did pick up some sort of stomach virus from her brother?!? It's hard to say. I feel like if I had seen her nausea episode yesterday I might have been able to distinguish whether it was typical for her nauseous days or if it was a different sort of "sick" nausea, but I was at a drs appt and the nurse that was here with her had never seen one of her nausea spells, so it's hard to say. She was kooky but stable most of the day yesterday (and no more crazy heartrate issues). However, right as the nurse was leaving and Mike was bringing her downstairs, she started crazy laughing/crying! Her nurse gave her Lortab and I think that took the edge off for a little while, but she continued doing that off and on the rest of the night. She seemed to calm down when I'd pick her up and hold her, but it took some coaxing, she wasn't easy to console. I was skeptical that she'd ever go to sleep. I was holding her and she was yawning a lot, but still very vocal (right in my ear) and on edge. Mike finally went and laid down with her, but she continued to be very vocal. When he came to bed she was still making a lot of vocalizations, but I went in and checked on her and her eyes were closed! Hopefully she's able to get some sleep tonight! Poor girl, I have no clue what's going on with her or even which direction she's headed at this point, but she could definitely use some better days!

Monday, July 21, 2014

Not good

So today definitely got started on the wrong foot! Reagan woke us up around 6:20am. She was making some noise so Mike was just going to pick her up and put her in her chair, but when he got in there he found her soaked in throw up! She had it all in her hair, down her arm, and on her shirt! Poor thing! We cleaned her up and put her in her chair and she seemed fine. Then around 9am she had another pretty big throw up, and then another little one a little later, and then a huge one around 10:20am. After that one, she got a little sleepy, so her nurse decided to check her pulse/O2 and her heartrate was through the roof 180-200 (even though she was acting fatigued). We decided to give her some clonidine to try to calm her down a little and help her sleep. She dozed off and her heartrate went down to mid 140s. Her pediatrician wanted us to bring her in to get checked out at 11:45am. So we dragged sleeping beauty out of the house to the doctor's office. They took all of her vitals in the office and other than a lower than normal blood pressure (probably a result of the clonidine), everything was normal. Her heartrate was in the 120s and he O2 sats looked good. We decided to switch her over to pediatlyte for a while and then slowly reintroduce formula. We are also checking her vitals on a regular basis. Everything looks good for now. We changed her diaper and I held her for a bit around 5pm, but she did get a little spitty and look slightly gaggy. You can just tell she does better in her chair when she's more upright and better supported. On a fun note, we're still dealing with major diarrhea from her brother...yesterday morning and this morning he had HUGE liquidy diapers that leaked all over the floor (ever since his throw up incident last Wed)! And then this morning I also threw out something in my back (again)! I would equate the pain with labor pains! Thankfully, I took some pain reliever and have managed to make it through the day without any more debilitating incidents! Hopefully I can get out of bed and still do my morning run tomorrow! So...needless to say, this day has had way more of the bad kind of excitement than I would like! Prayers for no more nausea and good days for my sweet girl!

Sunday, July 20, 2014

Just OK

Reagan had an OK day today. She slept well but she's been a little kooky all day. Pretty tense in her body, easily excitable (and vocal)...just a little more on edge than I'd like to see. I had wanted to take her swimming, but I think it just wasn't the right day for it (plus the pool felt a lot cooler to me...even Ryan was hesitant at first to get in). Hopefully we'll get her in the pool this week. I'm counting on a good week for my girl! Tonight she took a bath with Grandma (Grandma wears her swim suit and let's Reagan float in the tub), she seemed to calm down a bit after that and the rest of the night she was pretty easy going! Hopefully she'll get another good night's rest tonight and wake up smiling in the morning!

Saturday, July 19, 2014


Reagan slept like a rock last night and then continued sleeping most of the morning. When she did finally wake up, she was very serious and tense. Lots of kicking and furrowing of her brow. She didn't really want to be messed with and the more we tried, the more irritated she seemed. Her nurse noticed that her left leg seemed a little swollen (but it looked fine by the end of the day). We also noticed that her extension are just spinning around in her button (her gj tube). Whatever it is inside that locks her extension, must've broken off. The only thing I can think of is that she grabbed and yanked her tube last night (she's been very grabby today), because it wasn't doing this yesterday. It's nothing to be immediately concerned over, it will probably just need to be changed out a little early this time around. She dozed back off in her bean bag chair and slept most of the afternoon (her weekend nurse is beginning to think she bores her)! She woke back up around 7pm and was still pretty tense. She wasn't sensitive though and she tolerated hanging out downstairs with everyone just fine. Tonight she seemed to calm down a little and when I picked her up and held her, she immediately fell asleep! My sleeping beauty girl! Such a doll.

Friday, July 18, 2014

New brain MRI and ABR

Reagan was a rock star today! She spent the night in her chair again and was restless again last night. She woke up serious but stable. She was sensitive to noises, in that she was easily startled, but at least she wasn't getting upset by them. She was a little spitty, but not at all nauseous (we did continue Zofran for the remainder of the day just to be safe). We immediately decided that she looked good and stable enough to go through the procedures (we had started her on pedialyte at midnight last night). We left around 9:45 for a 10:30am arrival time. We didn't have to wait long in the pre-op waiting room (thank God, because it's open to the main area of the hospital that is VERY noisy) and then we were quickly escorted back where they weighed her, took her vitals, and then sent in a plethora of people that asked questions and made me sign paperwork. The start time was right around noon and the MRI would last 45min or so and the ABR another 1.5hr. So they were supposed to finish sometime between 2-2:30. They allowed me to go back with her to MRI (her nurse went to the waiting room) and I was able to hold her hand and reassure her as they gave her watermelon flavored gas to fall asleep. She's a fighter and it took a bit for her to finally doze off (eyes still partially open), and then they showed me the door! When I got out to the waiting room, Mike was waiting with the nurse (he had come over for his lunch break). We all went down to the cafeteria and had lunch. We blew an hour or so in the cafeteria and then the rest of our time in the cute little hospital gift shop. We headed back down just before 2 and were buzzed back shortly thereafter to meet with the audiologist's that performed the ABR. Long story short, her hearing looks great (even the lower, quieter sounds). They did mention that one of her ears had a reduced tympanic response but they said that could be due to the anesthesia and since her hearing looked good, it was nothing to be concerned about. A few minutes later, they buzzed us back to recovery and she was laying in bed with her eyes still closed. As soon as I starting talking to her, she opened her little bloodshot eyes and looked at me. She was pretty lethargic, and her body temp was lower than they like (so they had her covered in warm blankets), but we started her feeds again and she was waking up enough that they moved us to a new room to get us ready to discharge. They removed her iv, we changed her clothes, and got her the heck out of there right around 3pm! Everything went about as smoothly as we could have hoped for! She continued with her somber mood the rest of the night. She eventually dozed off and we were finally able to put her in her own bed for a good night's sleep! Thank you so much for your prayers today!!! (We should find out the results of her brain MRI next week!)

Quick update

All went well with Reagan's procedures today, so thank you all for your prayers! I will fill you in on all the details tomorrow! She was a rock star!

Thursday, July 17, 2014

Better than expected-Prayers please!

I think Reagan slept well last night? I only heard her once during the night (around 4am) and she let out a squeal, but then she stopped moving and as far as I could tell, went back to sleep. She was also very still when I got up at 6am to go running, but when I got back she was awake and as Daddy described "crazy"! She seemed fine for me though, so maybe it was just Daddy setting her off again? She's had a pretty good day today. She had OT and PT and did fairly well with both considering. She's still very crunchy and tense (PT worked on that a lot) and she's still showing some signs of nausea (sticking her tongue out, grinding her teeth, and a little spitty). As of now, we're still planning on doing the MRI/ABR tomorrow. They called us to tell us we've been bumped back a little later (so our arrival time is 10:30am and the first procedure should start by noon). That should work to our advantage. We'll have more time to scope her out and decide if it's going to be doable or not. I figure if she's supposed to have this tomorrow, everything will work out and she will clearly let us know if she's up for it, if not, then so be it. We'll reschedule again. So just keep it in your prayers that we will clearly know God's will so that we can make the right decision!
(PS No more nausea for Ryan today, although still a few liquidy diapers!)