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.

Back In

Yep back in the hospital. So, a lot has been going on since I last posted. Over the past month, Q has just kinda fallen into a very, very slow downhill spiral. First of all, we know Quinn has issues with her gut. they are typically on and off. She can have two very bad days motility-wise, in which her stomach is blowing up like a balloon and she's just off, and then go back to her baseline. We can sometimes have weeks of no bad days, but this past month, she had way more bad days than good days and it slowly caught up with her into what we are currently dealing with. She also is no longer fully potty trained. She's having so many accidents her in pants that there's just no point to putting her in panties anymore :( Sad thing is that she knows she had an accident and she will tell me and get all embarrassed, but she just doesn't seem to be able to control it anymore. ugh! it's frustrating because she's 5.5 years old.

So, last week, I started to notice that Q's tummy wasn't really going down. I took her to the pediatrician who also said that yes, she is distended, but she's acting totally fine. so we did an Xray and the next day the pedi called me to tell me that she needed to be seen at the hospital. Her liver was enlarged and her stomach was greatly distended with gas and fluid. So, since her doctors all think that she should be see at CHLA, where her mito doctor is, we thought that it would be a good idea to just go down there since I kinda knew where this was headed. It was a tough decision because she was still acting very normally and she was not spilling any ketones or anything like that. So, we drove all the way down there, which is about 2.5-3 hours away! we get in there and the docs thought she looked well. Mind you, i KNEW she looked well, but I also knew where she was headed. I gave them her histoyr and told them her pattern in this and that I thought it was a good idea to nip it in the butt before it got worse than what it is right now. The took another Xray, which also showed the same distension as the one from the day before, but they took all her blood and all her bloodwork was normal. Because her blood work was normal, they felt that I was doing fine with her at home and that there was nothing they could do for her that i couldn't or wasn't already at home and they sent us home, with a diagnosis of pseudoobstruction!!! I was shocked. Loma Linda would have admitted right away given her history and two consecutive Xrays indicating a pseudo obstruction. She was smiling and her labs were normal which is why they sent us home. I don't blame them, but I really thought that hospital was more familiar with how Mito kids were and that I shouldn't have to wait till it's an emergency to bring her in. Well, apparently i was wrong and totally wasted my time going out there. Not only that, but I KNEW where this was headed! I KNEW my child was entering the "danger zone" and just had a feeling that this wasn't the end of this fiasco.

So, I did my best to care for her at home over the weekend, checked her ketones, she was still doing remarkably well considering taht her stomach just kept blowing up like a balloon. She wasn't in very much pain at all, I could still hear bowel sounds. The problem was that I had her at 6 caps of mirilax a day, senna and generlac and had given her an enema and she was still getting bigger and bigger and she was not really pooping anything that I would consider an actual bowel movement. She had been excessively hungry and excessively thirsty. Her blood sugar for some reaosn was high. and she hadn't peed all of yesterday.

So, yesterday, I decided to take her to the local ER for another Xray and to tget their opinion. Due to how well she was doing, i was certain her labs weren't going to be abnormal. But when the ytook her Xray they were like... she really needs to go into the hospital. Her Xray, which was alreayd pretty bad had gotten significantly worse. They diagnosed her with a small bowel obstruction, which im certain is pseudo. She was also hypoglycemic and her heart rate was in the 140s.

So, we are decompressing her entire body. Draining her J, her G and her booty. I'll keep you guys updated. I think this will be a short stay. She is acting fine so I'm assuming we won't have to worry about any shennanigans she might want to pull while we are here.

What a great summer so far! Overall, Quinn is doing quite well. She does still have her ups and downs. At times I feel she is borderline in need of the hospital, but we are working things out here at home, which is all I ever wanted. Those crazy doctors who told me that without her IV line, she would end up back in the hospital within a month. BUAHAHAHA!!! Ideally, I'm sure she'd do better with a line, but not for the consequences at this point in time.

We went to Sea World this summer! and Quinn had a blast! She's been talking about it so much lately and she wants to go back there soon! Maybe next summer, kiddo. I am so happy we were able to take her. Quinn also lost another tooth this summer, and again, we couldn't find it! So she had to write another note to the Tooth Fairy about how she lost her tooth... literally.

My little dog, Jezi got attacked by a coyote and survived! It was sooo scary! My dog Jezi is actually Quinn's dog Jezi. Those two are like two peas in a pod. She loves that little dog. Jezi is a chihuahua mix with a wiener dog (chihuweenie). So she's little. I was at my mom's house taking care of my sister's children and I had my dogs over there in the backyard. sometime right after the sun went down, my older dog, Jenna started barking hysterically. I let her bark for about 5 minutes (shame on me). I guess i just thought she was being over-dramatic and barking at someone walking by maybe. Well, she wouldn't stop barking and she was barking like a crazy dog so i went out there to see what was going on. She just kept barking and running from me to the middle of the yard and back again. I could tell she was telling me something. Then all of a sudden from the blackness of the night, Jezi comes shooting right past me and into the house all super fast. I was like.... ummm WHAT JUST HAPPENED? So I picked her up and she was grunting and breathing all weird and she was in shock. I examined her and she had drool ALL over her back and two puncture wounds on the sides of her and scratches all over her little legs. The only logical conclusion that we could come up with was that the coyote actually jumped the fence, picked up Jezi and tried carrying her back over the fence, but actually dropped her and she was able to escape. My poor little girl. She ended up on antibiotics for her wounds and had a broken rib. But that was it. She was lucky! Now we call her a warrior and she thinks she is a badass because she escaped the Jaws of a coyote.

I have been looking into buying a house. What I truly want is a place for Quinn to call home. I grew up in the Military and so I moved around a lot. I have no roots. I have no ties to any particular place in the Country. I have no strong relationships with much of anyone. I get jealous of friends and family who can drive around an area and say, "I grew up here." "I remember when this used to be." and etc... I want that for Quinn. I want her to have a home. I want her to develop life-long friendships. I want her to be able to reminisce about the past with people who were actually in her past to share that time with. I just don't have that and I want that for Quinn. There are a lot of things keeping me living where I am right now. I am not sure of programs like the one that Quinn and I are on in any other part of the Country. This program allows me to stay home and care for Quinn while being able to live a life of our own. If it weren't for the program we are on, Quinn would have to have a nurse and I would be working a lot to make ends meet. I wouldn't be able to be there for her if she goes inpatient as often as I am. I think she would be a lot sicker than she currently is as well. So, I choose not to move out of state. I also would like to move closer to the hospitals so that way I can just go home at night instead of having to worry about a hotel or sleeping on an uncomfortable bed. so that way I don't have to drive 2+ hours to get clothes and stuff. The problem with moving closer to hospitals is that the cost of living is extremely high. I couldn't afford it. I've checked into it and it's just too much. The place that I am currently living is the lowest cost of living here in California. I thought about moving further North, because I would really like to have grass and maybe a pond or lake nearby. right now we live in the desert, but I don't know of any good hospitals up in Northern California that could take good care of Quinn. Financially, best bet is to stay here. I think i could be happy here, but this is definitely not the predicament I ever expected to be in at this point in my life. I wanted to be well on my way to a nice career. Making at least a decent living and have a healthy child. My dreams seem so far away from me. I'm sure I will make it all work somehow.

Please pray for another mito warrior, Brent. He has had an incredibly difficult time and lately is really struggling in the hospital with a possible HLH flare up. Hang in there guys and keep fighting, Brent.

photo uploader is being really stupid for some reason.