This is for those who don't know what's been going on, and for those who do, here's the details. Forgive my grammar slaying.
Saturday, my sister and her son came into town from san Diego. Quinn had so Much fun playing with her cousins Matt, Aj and the twins. We usually leave right around the time that Quinn gets her night meds, but we decided to stay a little longer. Everyone was having so much fun. Little did I know the foreboding nature of this little visit.
On Sunday, Quinn woke up exceptionally early, which hasn't really been very abnormal lately, it sucks nevertheless. She usually just needs help going pee and then she sleeps for another hour or two. Well, this time, Quinn didn't want to go back to sleep. I was exhausted and so I just stuck some cartoons on the tube and tried to go back to sleep. Quinn was relentless though. She was irritable and bugging me. I feel bad because i didn't really treat her well this morning. I was frustrated that she wouldn't let me sleep. So, I finally crawled out of bed around 700am. She started complaining of her heart beating too fast, so I checked her blood sugar and it was 127... Perfect. I told Quinn that she was probably just going through her little SVT thing and her heart needed a rest so I had her lay down on the couch. I thought that was good enough and I went to lay down in my bed again to try and get some more sleep. But she came into my room about 20 minutes later and was crying and holding her head. She said that something was really wrong with her head and she really needed me. Ok, kiddo. Now I started to feel sort of bad. I checked her o2 sats and she was doing ok on her oxygen, but her heart rate was almost 150, so I just turned her tank up and told her to lay down. About 30 minutes later, she said her neck was really hurting her in the back and that her head was hurting really badly. By this point, she was crying. I tried to rub her neck, but that was so painful, it caused her to scream. So km like... Alright, I will just check your temp. Het temp was 102.8. It surprised me! Her head didn't feel warm, hut when I felt the rest of her body, she was really burning up. Ok... I definitely just lost the mother of the year award there. You know you have a medically complex kid when she's not feeling.g well and the LAST thing you think to check is her temperature.
Quinn has mito. She's sort of expected to get sick and we deal with A LOT here at home, but when this kid gets a fever, its usually pretty bad. And she declined very rapidly. I kept her home for two hours after I took the first temp, hoping things would calm down some, but she looked really bad and her head and neck pain was intense. When my dad got home later that morning, I informed him that I was taking Quinn to the er. Quinn couldn't even hold up her head, her temp was still 102.8 and she was looking pretty horrid. He helped me get her into the car and we headed in.
She was still feverish when we got there. She looked incredibly sick and dry. Her blood pressure was very low. She was started on fluids and needed boluses for her pressure. They did a CAT scan, chest x ray and spinal tap. Her wbc was extremely high (30,000) it should be 11,000 or less. Her labs were showing that she was well hydrated, but she was so dry she wasn't even crying tears. We spent 10 hours in this er trying to get her transferred. Finally the ambulance came at 1130pm. The doctor at the er said that her wbc was so high, it Qs an indication of her fighting a severe bacterial infection, but everything was clean (chest, urine, cat scan, and the spinal tap had no wbc in it). The doctor still felt that she had meningitis.
So, she had been sleeping like crazy. The ambulance comes in to take her and the medic walks in and is like... So Quinn has mitochondriolitis? I'm sorry, I couldn't help it! I just laughed at him! I asked him if that term made sense and he was like no, but what is it? And I asked him if he knew what mitochondria are and he did, surprisngly. Lol! I said that I didn't even think it was possible to have infected mitochindria, just defective. I am sure I offended him as he was pretty cold to me after that. Woops! I didn't mean to, I just found it comical. I followed behind the ambulance. About 45mins outside the children's hospital, the ambulance pulls over... I'm freaking out! The emt gets out of the driver seat, runs toward the back and the medic is kneeling over my kid, waving me in. Wow! I was so scared! I go into the back of the ambulance and she is crying and writhing in pain. The emt says that Quinn is in a lot of pain and they needed to give her morphine, but her iv was completely blown. Whew! What a relief! Just a new iv... Thank god! So I helped calm her down while she got her iv and then we noticed that her lower stomach was extremely distended. This was a new symptom since we had left the er. Medic was worried so he wanted to book it to loma Linda, so we got back on the road.
Quinn's fever had been broken for a few hours after we got to loma Linda. She was still visibly sick, but she was able to wake up enough to answer questions and was coherent. So, I tell about 5 people what was going on. and they thought she had meningitis too. They said no matter what, her wbc is high enough to admit her on antibiotics. She was really sickly looking too, though.
So, we got admitted to loma Linda. She was started on more iv fluids and antibiotics. She had an abdominal series Xray which was surprisingly fantastic! First x rays I've ever seen that looked so awesome. She just was full of poo, but who cares about that! Lol.
Monday was pretty rough on her. She blew another iv. She slept the whole day. She looked so yucky. She had a rash around her eyes, she was just sickly looking.
Tuesday, she was able to start some clear liquids. I woke up to her eating eggs and toast. I started raising hell! Who the hell ordered her a diet for age!? Nobody really knows what happened. Her chart showed her on a liquid diet. It was a mistake. But she paid for it. Within an hour she was in severe pain, shaking, headache. Her tummy was feeling horrible. Nothing helped to calm her down. Eventually we had to drugged to sleep. We had to put her g on suction because she had chunks of bread on there clogging up her drain. It was just horrible. She was right back to looking like doo doo. Not only that, but in the evening, she still had not peed did about 10 hours. I had been asking her all day if she felt like she needed to pee and she kept saying no. So they ordered a bladder scan, which showed that she had about 600ml of fluid in her bladder. We threatened to cath her and made her sit on the toilet and she finally peed 300ml out. Then, the doctor comes in and tells me that if she's not on a set schedule, kids will hold their pee for days. I wanted to slap him. That is so not true! I don't know what kind of kid would do that. If anything, they will hold it too long and then pee their pants. anyway, she at least peed. At the end of the night, her head started hurting her again and she started vomiting. Tylenol helps.
Today, things have been pretty good. She still is having headaches. She hasn't pooped in almost a whole week though.
They started her on a very high calorie formula because she has lost 4 lbs. She. Blew 4 iv since we have been here and right before they started procedure for a picc line, we got news that her spinal tap did not grow any cultures. So they just discontinued her antibiotics! Yahoo. The only thing is, we have no idea where her infection came from. They haven't even taken blood to ensure that she has cleared the infection... Before we get discharged ok going to make sure that her wbc is back to normal. She has been getting tylenol a round the clock for her headaches, which could cover up fevers. So I just want to be sure before we leave that she is no longer infected.I think that's a reasonable request considering how sick she got. She definitely looks like her normal sled today though. I'm concerned that she hasn't pooped either, but at the same time, we deal with that crap all the time.
So, all in all, it looks like we will be going home soon. What an ordeal!
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1 comment:
Oh, Sarah... I'm so sorry. Poor kiddo. I hate hearing how miserable she's been. I'm glad she's starting to look more like herself now, though.
Hugs,
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