Got out on Monday

We were able to break out on Monday. I'll always go to Loma Linda. I think the residents and doctors communicate very well (minus that stay in November, but I partially feel that that stay is the reason we have 0 problems anymore). Our regular GI was able to give the attending her history and that despite how she looks, she has a lot going on in the inside. I love our GI doctor. He's never short of amazing.

So, we spent all week decompressing her. She was getting long-cath enemas every 12 hours, which were doing absolutely nothing for her. She wasn't even pushing out the flush that was flushing her colon. Everything was just staying up in her butt. She literally had no movement in her colon at all. So after 2 days of this complete failure, we had to stop doing the enemas. After a few days of total gut rest, we tried to start some oral food of clear liquid and clamp her drains. As soon as we started a little bit of oral food, Quinn's stomach started to get very distended again. The GI doctor saw her the morning before we started oral liquids and the evening after our trial and when he saw her he was like, "she wasn't this distended this morning!". Nope, she wasn't. So, he got a syringe and an extension and started venting her belly and A LOT came out. So, his conclusion: He feels that a lot of the air that gets trapped in her small and large bowel are not just from pseudo episodes, but also from her stomach not working very much at all. It accumulates food and air. Basically, she has a pretty nasty case of gastroparesis. So basically, she is only allowed to have a liquid diet by mouth, and only for her own pleasure. We have to keep her drain opened 24/7. So when she eats her clear liquids, it just goes right into the drainage bag. First, we did a trial to be sure that this is what she needed. Well, it worked! Quinn has had the flattest belly for the longest period of time that i have ever seen. We were also able to increase her rate in her J tube from 30 to 40 and this gives her a good level of hydration and nutrition. we spent a week in.

During that week, Quinn was having episodes... I'd call them mini-episodes of just a hiccup of gut shut downs. She would drain a lot of green bile. Her belly would randomly get distended and then go down again and she also wasn't pooping. Speaking of not pooping, she still hasn't since we left hte hospital. Unfortunately, if we were to keep Quinn in the hospital for all of her mini pseudo obstruction episodes, we would never leave. One of the things the doctors kept telling me when I'd express my concerns for the minor things (stuff we deal with at home all the time), they all just told me that unfortunately, Quinn has a classic case of pseudo obstruction. There is no other treatment for it. Sometimes she works, and sometimes she doesn't. And that has been the case in the course of her hospital stay as well. We need to just deal with the minor and keep bringing her in for the major. They also said that I was doing all the right things I needed to be doing at home. Made me feel better.


It's HARD! and it's WORK to keep this kid hooked up to all this crap, monitor ketones every night, monitor fluid output vs input. Blood sugars, to keep all her lines from getting tangled all the time. Despite all the attachments that come with her, the most difficult thing that both her and I have had to deal with is the fact that she can no longer eat. It's hard to eat in front of her! she literally eye balls my food. and she gets very sad. I think she's starting to understand. I know she feels better and i know she knows she feels better, but its' so hard. She LOVES to eat. I enjoyed giving her even just tiny amounts of food by mouth to satisfy her. Now it's just liquids and lollipops. Poor kid. I feel so bad for her :( I don't understand why she has to go through this. and I don't understand why my kid can't just be one of those who hates to eat. This would be so much easier if she did. I never quite understood how a kid can have such a terrible case of gastroparesis, yet still be so incredibly hungry all the time. That stumps the doctors too, and unfortunately, there are no meds that she can take to suppress appetite.

Anyway, she has a cardiology appointment coming up. For a second opinion. I feel she needs to be monitored in cardio regularly. I think that her heart just has a huge demand. Every time we run into trouble, her heart rate is usually the first sign that we have. Plus, she complains of chest pains accompanied with a high heart rate a lot! most of the time, it's because her blood sugars are low, but sometimes, it's just a random occurrence, like this morning. I'm not sure if they can even do anything about it, but I'd like to double check... again to ensure that her heart is healthy because I just have a strong suspicion that her last cardiologist was very dismissive with her high heart rates. I think she at least needs to be followed yearly to ensure there are no changes. Her heart murmur is audible again too... though I am certain that it is benign.

Quinn also had an IEP for school. I can't believe it! she's starting Kindergarten!!! my kid is going to be so big! Ok, so i have heard of people having a lot of problems in IEP's and making sure their children's needs are properly met. Her school psychologist totally set everything up for her! I walked into the IEP expecting to fight for an aide for her, but no. I didn't have to fight for anything. Quinn qualifies for OI (Other Impaired). She gets a 1:1 aide the whole time she is at school to help her. Plus, she gets to have the school bus pick her up and drop her off right in front of my house! Quinn will be going to school in her chair. She has a lot of attachments. In school, she will need to be on her feeding pump, her drainage bag,  and her oxygen pretty much the whole time. She needs to have the blood sugars monitored and her o2 sats for the times when she is able to come off the oxygen. She also needs someone to help her with the drainage bag (decompressing the air, emptying the bag when it gets full and putting it in and out of the fanny pack). We got a fanny pack for her drain, but she can't take the drain off her chair and put it in there and this aide is suppose to help her with all that stuff. I feel so comfortable with Quinn being at school! she's going to have a great time! I just hope I can keep her from stinking. Her formula smells bad. I don't know how to contain the stench. I'm going to have to rig something up for her within the next two months to try and conceal it because I don't want her being made fun of.

That bile just accumulated within a few hours.