Sunday, April 30, 2017

A broken gj tube

Reagan slept well last night and had a pretty good day today (for the most part). She's been sweet and in a good mood. Both kids were well behaved this morning while Mike played golf with Grandpa. Ryan's fever was gone and he seemed to be feeling fine. That is, until I tried to get him to take a vitamin this afternoon. He gagged and then proceeded to puke all over the kitchen floor! Ugh. Hoping that was just a reaction to the vitamin and not real nausea. He seemed fine the rest of the day, so who knows. Reagan was good the rest of the day. She was vocal and rolly but good. We just hung around the house. Very laid back sort of day. It wasn't until tonight that things got exciting. Reagan's formula had finished pumping and I had given her only one of her nighttime meds, when I decided to pick her up and hold her for a bit. While holding her I eventually felt something wet and looked down to see her extension laying in her lap with part of her button still attached! That's right, the center part of her button had popped out again (this was the same thing that happened last two years ago on mother's day and landed us in the ER). Well being 9:30pm, there wasn't much we could do. We tried manually holding it in, but it just continued leaking. I attempted giving her two more meds, but I'm pretty sure they just leaked back out. At this point we had to do something. It was leaking profusely and even holding it in wasn't helping. So I had to pull it. That's a first. Thankfully we had a spare g tube for just this sort of instance. I pulled the gj tube and replaced it with just a g tube (we'll have to go in tomorrow am to have a new gj put in). I gave her her seizure meds through it (into her stomach) and prayed that she it didn't come back up. She looked a little gaggy, but we just kept her upright and it stayed put. She won't get any formula tonight or meds in the morning until we get the new tube, so hopefully they can squeeze us in early. Mike is trying to get her to bed at the moment but she's pretty vocal and I'm not sure if she's going to fall asleep. I think I'm going to have to give her some clonidine and that means putting something else into her tummy. Ugh. Please go to sleep Reagan!

Before the throw up...he looks great! 

Saturday, April 29, 2017

Spring fling

Reagan slept well last night and woke up in a good mood this morning. Mike took Ryan to t-ball but he only batted 5 times or so and was done. This afternoon we decided to take the kids to a special needs family spring fling at our church. We thought Ryan would enjoy it because they had several bounce houses inside in the air conditioning. Nope! Ryan refused to go near the bounce houses! His teeth were chattering! I don't know if he was cold or scared or both?!?! Crazy boy! Reagan instantly got overstimulated with all of the noise, so I put her earphones on and we went to the face painting station where Reagan got a butterfly on her arm and Ryan got two balloons on his hands (that he would later wipe all over the back of my seat in the car)! He had the most fun with the carnival games. Throwing little bean bag turtles into the mouth of an alligator! And he's got a pretty good arm! Reagan took some pics with the princesses and then we went outside and let them play in the bubbles! It was a fun time. Ryan did not want to come home! The rest of the day we just took it easy at home. Then Ryan got super cuddly and dozed off on the sofa. Mike mentioned that he felt hot...he had spiked a 102 fever again! What the heck?!?! He slept for a few hours (before bedtime) and woke up fever free and feeling much better! Hoping everyone can get some sleep tonight!

Friday, April 28, 2017

Sleep all day

Reagan slept well last night and then continued sleeping the ENTIRE day today! Like never even moved her out of her bed sleep. There were a couple of times that she opened her eyes (very briefly) during a diaper change, and she smiled and seemed happy, but then immediately dozed back off to sleep. Sweet girl. She did eventually wake up for a bit tonight. But not long. She was in good spirits though, so hopefully she has a good day tomorrow! Here are a few pics that came up on my Timehop for today from our trip to Seattle 6yrs ago. So sweet.

Thursday, April 27, 2017

Good day

Reagan had another good day today. She slept in a little but was awake and ready to go by the time of her first therapy. She had PT, OT, and school today and did well for it all. Her PT did mention that she was a little concerned about some popping in her left knee. I've heard it before, but usually when she's shifting her knee over and as long as you right it before bending it, it's fine. Then she had OT and school. Her motor skills were spot on today so they did a lot of fine motor during school. I worked all morning in the yard, clearing weeds and putting down mulch and planting flowers (I forgot to take a real before picture...before removing the weeds). It was a lot of work but at least it was cool this morning, although it warmed up quickly. Ryan was fine all day today but then did have some random diarrhea tonight. Ugh. I'm going to see how he feels in the am. If he's fine, I'm going to send him to school and hope that he doesn't have to go while there!

Wednesday, April 26, 2017

Sensitive and sleepy

Only one therapy today, speech, but Reagan did well with it. A little while later her nurse attempted to bring out the PODD book to talk to her with it, and Reagan freaked out and started crying! Of course, she did the exact same thing when she tried to read to her. I think she may just be a bit sensitive to stimulation today. She did doze off a while later and then slept for a while. Sensitive and sleepy. She seems a little better tonight so hopefully she'll be good. Ryan ended up coming home from school after only an hour or so...diarrhea. Haven't seen a sign of it since, and he seems perfectly fine, but the soonest he can go back is Friday. To top it off, tonight he fell asleep early and spiked a high fever! What the heck?!?! No sickies!!!

Tuesday, April 25, 2017

Rockstar Reagan

Reagan had a great day today. She was stayed very busy. She had PT, OT, and school/speech. Her physical therapist was really happy with how well she was doing today. Practicing transfers from her wheelchair, bearing weight through her legs and pushing up into standing. She was quite the rockstar today. Ryan had a pretty good day at school as well. Hoping it continues tomorrow. I did find out today that there was an abnormality on her EEG from her genetics appt in Houston. So we've gotta go in to see the cardiologist here to get them to do another EEG/echo. Hopefully it was nothing, just an artifact. We'll see. First available appointment is May 10, so we'll have to wait and see.

Monday, April 24, 2017

No school

Reagan did NOT sleep much last night. She didn't fall asleep until just before 1am and then by 2am I already heard her making noise. I had to get up early to run the EEG box back up to the hospital and then back home so Mike could go to work. Reagan was already up (of course) but Ryan was still sleeping in. No school today and no nurse. Today was some sort of bad weather day that they ended up not needing and Reagan's nurse requested the day off a long time ago. So it was me and both kiddos, which was fine with Reagan now feeling better, but I'm still happy for Ryan to go back to school tomorrow! Between him being sick last week and Reagan's nausea and EEG this weekend, I've gotten nothing accomplished for a while! Reagan has been good all day. Very laid back and easy going. She had speech this morning and did well with that. Tonight she was a little spitty/chokey. Not sure what that's about, just hoping she's able to fall asleep and sleep that off. I know she must be exhausted, it was a long weekend. Praying she turns it around and has a great week!

Ryan trying to convince me that he needs to eat my energy chews!

Sunday, April 23, 2017

So so much better

Reagan slept off and on last night. She woke up a few times fussing and chokey but went back to sleep fairly easily. Around 4am she woke up and Mike got up with her and she was precious. Not nauseous at all. And when she woke up for good...all was good. She was smiley. No more nausea. Just as I have no idea what caused it, I also have no idea what made it go away. I'm just SO glad it's gone and my girl seems to be in such great spirits! Reagan has been super precious today. Very talkative and oh so smiley and sweet. I ended up taking her leads off around noon today. Several leads had already come off. She may have had an "event" this morning around 10:15am. I was holding her but her arm went out and her head turned sharply to the left but I couldn't really see her eyes to know for sure. It only lasted 15sec or so and then she turned back the other way. I hit the button, so I guess we'll find out. My only concern is whether or not the leads were working properly when it happened. We'll see. She had lots of wet diapers today but I did have to help her have a poo (she still wouldn't go on her own, even after an enema). Poor girl. It's been a while. I did drain her tummy one more time today and got some very yellow bile out. Not sure what's going on with that tummy. I noticed some redness around her button tonight when I gave her a bath. Definitely think it was a reaction to some leaked bile. Poor thing. Can't catch a break. All day she was very laid back and happy. Tonight she got a little more vocal and getting her to sleep was quite the task. It wasn't until 1am or so that she finally dozed off. Not super confident in sleep tonight.

Saturday, April 22, 2017

I HATE nausea

Well...Ryan slept last night. Reagan was up and choking at 4am. I ran in to find she had pulled the wrap off her head and thrown up in bed. Ugh. Not good. We moved her to her therapy room and put her in her tomato chair. She was very agitated and stressed. We had to put an arm restraint on her left hand because it was up in her hair nonstop. The electrode just above her left ear had been pulled off so I had to restick it and rewrap her head. Hopefully it still works. She was pretty agitated but eventually went back to sleep with the help of medicine. She continued sleeping all morning. Waking up just long enough to fuss and flail (and for me to run up the stairs), only to doze right back off. She did wake up for a bit around 10:15am and threw up again. Double ugh. What is going on?!?! We haven't seen nausea in FOREVER. Hoping it's just related to congestion or whatever this junk is that we've all got. We really haven't seen any symptoms in Reagan except congestion. Hoping that's the extent of hers because we've all got horrible coughs that I really don't want her to get. I decided to go ahead and try to drain her tummy. Sometimes when she gets nauseous, her tummy is holding a lot of fluid (I'm guessing because her gut is shutting down and not functioning properly). Sure enough, tons of fluid drained out of her g-tube. It had a slight green tinge to it (almost limeade looking), bile I guess? Poor girl. No wonder she's nauseous. What the heck!?! She dozed back off, continuing to wake up for small bursts, fuss and then go immediately back to sleep. Finally a little after noon she woke up and I rushed upstairs determined to get a pee out of her. I got some warm water and went to check her (she had already dozed back off) and thankfully she had finally gone on her own! Eventually I did have to change her and that didn't go too well. I was hoping she could spend some time on the floor, to get out of her chair for a while, but she got super nauseous again. So I did it as fast as I could and got her back up into her chair. She got super spitty but thankfully didn't throw up. I did take her arm restraint off and put her arms under a weighted blanket to give her a break from that. She continued to sleep the entire day/night. Waking up just long enough to fuss and gag/throw up and then go back to sleep. It's been brutal. The EEG combined with this relentless nausea. Ugh. I have no idea what's causing this...I just want it to stop! Big prayers needed for my girl. I switching her over to pedialyte tonight. Give her gut a rest. Poor sweet girl. Hoping she wakes up feeling better tomorrow.

Friday, April 21, 2017

Seizures and weekend EEG

Ryan slept last night until 5am. Then he was up. He came to our bed and didn't really want to go back to sleep. Not until 7am or so and then he was out. Gotta keep this boy out of our bed! I had checked on Reagan at 5 and she was awake and sideways in her bed again. I moved her and tucked her back in, and I think she went back to sleep, at least in spurts. At 9:15am this morning her nurse saw her have another seizure. Head turned completely to the left, eyes closed, and left arm stiffened out. Lasted about 15 sec. At 10:40am she had another one. Arms crossed straight out and head/eyes fixed to the right. WTH?!?! This is crazy. I immediately put in a call to the EEG scheduler. They had contacted me a few weeks ago, but I told them that it was so hard to predict when she might have one. Well, today seemed like as good a day as ever. They just so happened to have an opening and they were able to get quick insurance approval. So at 2pm we headed up to Dell to get her hooked up (she'll wear the leads all weekend at home and then they'll remove them at 8am Mon morning). We didn't see any more definite seizures but as I put her into the car and while holding her hands down as they were putting the leads on, she was very zoned out and stiffening her arms occasionally (but no head turn). Unfortunately, none of that was recorded. She looked very tired afterward. We thought she would doze off in the car, but she never did. She waited til we got home. She dozed off and on the rest of the night. A little restless. Lots of teeth grinding and lip smacking/swallowing. Definitely seems nauseous or gaggy. Not sure if that's because she's a little congested (and maybe having drainage down her throat), if it's the gauze wrapped around her head and neck, or because she's been laying down unelevated for a while. No clue. I don't like it though. Her head wrap has already slid up and off her head a few times so I've had to rewrap it. Who knows how long we'll make it with everything intact. Hopefully long enough to get some information from this pain in the butt EEG. Mike transferred her to her bed and she's asleep for now. Hoping she stays that way.

Thursday, April 20, 2017


Reagan woke up tense this morning and laying completely sideways in her bed. I'm not sure how well she slept but it had to be better than us. Ryan woke at 2am crying and burning up. He won't take any medicine so we had to put him in the tub to try to bring his temp down. Then we brought him back to our bed. BIG mistake. This kid is impossible to sleep with. He was all over the bed. Of course, he decides to finally sleep hard after 8. Reagan woke up super crunchy and grinding her teeth, but settled down as the day went on. She had PT and OT this afternoon and did well with both. During OT the DME lady came out and trialed some different headrests with her new wheelchair. I think we found a winner. Despite being crunchy and high tone today, she looked pretty good sitting up in her wheelchair. It's amazing how much her head control has improved over the last several years. Tonight I kept her upstairs to prevent exposure to her brother's germs. I took him to the dr this morning since he was still running a fever and minutes before we had to leave, he projectile vomited all over the kitchen! He's negative for strep and flu so that's good. He's continued to run a fever all day again today. We were able to bring it down tonight with a swim in the cold pool. He enjoyed himself and his fever came down to 99, the lowest it's been in days. Reagan peed without needing to be cathed again today, so that's good. She still needed help going  (with warm water), but at least she went! Tonight after I helped her go, she stiffened her legs out and then turned her head to the right. Ugh. Darn seizures. This puberty thing sucks. Hoping everyone can get some sleep tonight.

Wednesday, April 19, 2017

Tense and holding

Reagan slept well last night and woke up calm and content this morning. Definitely more tense in her body and not quite as smiley (but still little smiles). She didn't have a wet diaper but her nurse was eventually able to get her to go using warm water. She had speech this morning. Therapy was a little more challenging today with her so crunchy. She was also playing possum, acting like she was falling asleep. It worked, her therapist left a little early and then Reagan perked right back up. There was obviously some potential for sleepiness because she dozed off even after getting an enema. Of course she didn't poo. Ugh. This girl. She has not been going much lately. I'm afraid things are going to start backing up in there. She had one more wet diaper with help but then would not go at all this afternoon. Her nurse finally had to cath her at 6pm before leaving because we just couldn't get her to go and were afraid she might continue holding all night. We got some out but not much. At least we were able to give her some relief. Hopefully by tomorrow she'll be going on her own again. It's been quite a while since we've actually had to cath her, I was hoping we could avoid that. Poor Ryan has been running a fever all day today. He's been pretty miserable. A warm bath helped to bring down his temp a little, but he's really resisting taking any meds. When I try to sneak them in, he somehow senses it and gags! Ugh. It's been a long day. Hoping he sleeps tonight.