Lydia has been having issues with extra reflux for 2 weeks since going off one of her reflux meds (I understand the dr reasoning behind why we needed to try it) Sunday night she was choking, monday night she was choking on reflux so Tuesday I called the nurse to ask if we could add the med back in once a day (she had been on it twice a day until the start of July when she went down to once a day and then off) but did not hear back on Tuesday. Wednesday Jilli had PT and while there Lydia did the same gagging choking thing she has been doing and then she did it again on the way home. Once home she choked and spit up a few times. We started getting in the mindset of needing to watch this closely because this is how her bleeds both started. I ran to Walgreens to pick up other meds that were needed and Wamart to pick up a few things incase things went south. We went to bed around 11:30 and I at there debating which child to put the pulse ox on... the kid on oxygen or the kid that was choking. Man making choices like that sucks. I was up a few time with her choking between going to bed and 11:45 and then she had a large choke. I was then up the rest of the night with her choking and pooping bile. It sucked. We changed everything she was close to multiple times and things were covered in bodily fluids and I was doing laundry at 3am. Around 5:30 Jilli woke up to us cleaning Lydia up again and then stayed up. The girls had Pt and Ot at 9am so we needed to get out the door by 8:30 which I was hoping to leave by 8:15 but Lydia pooped bile again causing us to not get out the door on time. Through everything Lydia was smiley and acting like herself other then choking, spitting up and pooping bile. She worked hard in PT for 30min but the last 15 she was tired. My mom met us at therapy and helped with the girls and then we dropped her car off at my house and headed down to Shriners. I sat in the back between the girls and held Lydia's passy as she refluxed (it was so sad, she would hand the passy to me when it stated, would scream and then put her hand out for it back) She vomited twice on the way there. Once at Shriners everyone commented on how tired she looked but she was still smiling and didn't have a temp. Thankfully we were in and out of Shriners in a short amount of time and have Lydia's new leg braces. Once we got to the parking lot I called special needs and said I needed a plan now for how to help Lydia because at that point she had pooped bile 6 times and puked at Shriners. At 3:11 I got a message from our GI to start the med again. We drove back in a way that if we needed to go to Children's it would be a shorter drive. The car ride back she did ok and we stopped at the mall on the way to get her some shoes since none of the shoes in the bag of Jilli's old shoes fit her new braces! We were also trying to wait out to see if she needed medical care. She was in that stupid gray zone. Yes she was still getting fluids in but she was also loosing a lot of fluids and she dehydrates really fast. We stopped at Target and bought a thermometer since we didn't have one with us and she felt a little warm (we also picked up toys for RMH as many of their toys are not 50-70% off). She had a temp of 100.1 but was still smiling at us inbetween sleeping. The extra sleeping worried me but she had not slept much the night before and on PT days she is extra sleepy. We decided to come home and see how things played out. Lydia played some and pooped two more times but didn't vomit and her temp . Brent gave her a bath. Jilli made some really poor choices and it was a hard night parenting. I was exhausted running on 2hr of sleep, a lot of stress and not enough coffee.
This morning I woke up to the smell of more poop. I'm not sure when Lydia pooped all over everything during the night but I got her cleaned up and then Jilli woke up saying her body didn't feel good but then she went back to sleep. I was holding Lydia and she pooped all over my clothes so I got that cleaned up and then heard Jilli puke so I ran upstairs and got her cleaned up. I brought Jilli downstairs and she has vomited a few times since and is now sleeping on the couch.
So it looks like we have a virus on top of a med issue for Lydia. We put Lydia back on the med last night so hopefully that stops the long term effects of what has been going on for two weeks and then hopefully we will get back to Lydia's baseline. This was just the prefect storm of Lydia having increased acid issues from the med change and then them getting a virus on top of it. I feel really bad though that we went anywhere yesterday because if I thought Lydia was contagious I would not have and I really hope no one else gets sick. Thankfully at Shriners she was in her car set most of the time and not one else really touched her and at PT they are really good about cleaning anything little kids touch because kids put so much in their mouth, but I really hope her PT doesn't get sick. It also hit Lydia hard then is seams Jilli because Lydia was already having extra reflux issues.
Today we will be home. Jilli is excited for a pajama day. I am just spending lot of time cuddling the girls and cleaning up the messes that come out of them.
Lydia is doing a good job at keeping her leg braces on. I am surprised but really happy. She has not walked in them much yet but with time she will. Right now she is sitting and looking at a Baby Einstine book.
Also waking up to a text from Stacy about the vote made me happy. Like I posted on facebook, I am not against working to fix healthcare issues, put this bill just slashed funding without helping the problems. Just like the dems are accused at throwing money at every problem, the GOP thinks taking away money will solve a problem and really balance is what we need. I am not happy with Ron Johnson though... not just because he voted for it but why he voted for it. He voted yes because Ryan told him they would work on things in the bill on their side when it came back to them, but that is not how we should be voting on bills... say yes to a bill you believe in and if you think it has problems fix it while the ball is in your court, don't just push it off to be someone elses issue in a place you have no say. We elect people to vote on things and not just push their job off to someone else. And what he showed me last night was that he doesn't have the backbone to stand up and do what he feels is right even when he has and issue with it (his issues with the bill were not the same as my issues with it) but that he will fall in line when people promise him things and that his party comes before everything else an I have issues with that. This healthcare debate is not over, but I hope now we can work together as a country to fix our issues by bringing lots of ideas and people to the table and working side by side... that is how our founding fathers set this country up to be run and we need to get back to that and if the people in office can't do that then it is time we stop blindly following parties and find people who can.
So now I need to get back to taking care of my kids, doing more laundry and cleaning more. Hopefully it is a weekend of rest here because we really need it!
 |
| Lydia Thursday morning at 7am |
 |
| Lydia's new let braces |
 |
| The girls napping today |
No comments:
Post a Comment