Due to a recent lengthy hospital stay I am going to hit the high points from where I left off in my last post to our current status.
So we had our first week long stay of the year the first week of January. Eleven days later we had our second. She was having breathing problems and at a check-up appointment (check-up because of her previous hospital stay) the doctor said it was up to me if she were to get admitted. I said we would stay, and the doctor later told me if it were her child she would have stayed as well. Funny how that can worry you and comfort you all at the same time. Essentially, nothing groundbreaking was found out in that stay. She always was stable even with her noisy breathing. She did have a sleep study and it showed mild apnea but nothing that required intervention at this time. So we went home after a week.
Eventually her breathing did get better. She still makes noises and the nurses always comment on it and we let them know it is her normal. She also continued with the NG tube feedings but still was having vomiting and gagging but I had honestly assumed that that was just how it was going to be.
February was fine. No hospital stays. Daddy's birthday. Seemed to be doing okay.
March was not the same. We had fought a GI bug with her for a while and finally it got to the point where she couldn't keep anything down. She was getting dehydrated. So I called every medical professional I had a number for to get someone to tell me to take her to the ED (what was once called the ER... I know... weird) so they would take us back to be seen right away (it is way easier that way). Eventually, I got someone to send the "orders" to the ED and they were waiting for us. They took us back right away and had a hard time getting an IV because she was so dehydrated. Eventually they admitted us. That first night was pure hell. The kind of hell that makes you want to scrape your face on the burning hot pavement on MLK during the summertime. She screamed, and gagged, and vomited, and pooped all night. I tried everything to get her to lay in her crib without having to hold her. I was exhausted. The nurse we had the next morning was so saddened by us that she asked the doctor to get someone to help us. They can write an order to have someone hold or take care of a child that has critical care issues. So she wrote the orders for fear of aspiration and I slept for a few hours. Meanwhile, the next day Emileigh was schedule to have a triple scope procedure that I was terrified we would have to postpone. Thankfully, it was not and they proceeded. She had a bronc scope by a pulmonologist and an upper GI and sigmoidoscopy by her GI doc. The bronc showed she has a floppy upper and lower airway (laryngomalacia and tracheomalacia). But nothing huge was found with GI (which I was hoping for). So we stayed a total of three days and went home.
Fast forward to April. Well, three weeks after her first GI bug she started with another. Hmmm... makes ya think maybe she has something more going on?...
Well we tried taking care of it at home. Pedialyte, tylenol, ect... I even took her to the ED and was sent home. After nearly a week of being at home with this I called and said she really needed to be seen and we were sent back to the ED. And, surprise, we were admitted. And we stayed for twenty three days. Holy shit... you want to talk about going insane. Stay in a hospital that long. All the nurses knew me and would visit me even when they weren't Emileigh's nurse. But seriously, I have never felt like I had a lapse in sanity until then. But during that time I also decided that if Emileigh ever gets healthy enough I want to go back to school to be an RN. Anyone who knows me understands how ridiculous that sounds but funny thing about having a sick kid and how it changes your interests. But anywhoo... Emileigh. She was in isolation the first week. But I'm not going to get into the sloppy poop details that we dealt with and discussed with the docs. But one big thing that happened at this stay was a Care Conference ( < insert heavenly music and clouds separating for the sun to shine through).
The Care Conference was a meeting between Jake and I and Emileigh's GI and neuro docs along with a GI fellow that was seeing her inpatient and a social worker and discharge nurse. I had written all the points I wanted discussed in my iPad and brought it with me. It went fairly well. Eventually I had to have Jake describe our home life to them. I was sick of discussing that with them and was fearful of what might come out of my mouth. So then we all discussed possible home nursing care. We also got the neuro doc on board with giving her some nighttime meds to help her (and me) sleep. We started with melatonin. One other topic of discussion was the lovely world of insurance and the barrage of BS that goes with being in the special needs world. In the end it felt good. And our GI doc always gives me props for everything we go through and do everyday. Sometimes that's all you need. And it's best to hear it from a doc.
The melatonin seemed to help a bit. But they also advanced her NG tube to a NJ and she did not like it. She constantly gagged and tried to bring it up. She would bring up bile or mucus that was in her belly and then she would have a hard time recovering afterwards. So the Friday before Mother's Day one doc asked me if I wanted to go home because her numbers looked good. I said no not until she was relieved from the gagging. So they called her neurologist and he added Clonazepam... amazing thing that drug is! So, then the next day (the day before Mother's Day) we went home.
It's always nice to be home (for the comfort) but it is so stressful as well. What if she turns blue from not breathing? Or brings up her tube? There are always tons of inconceivable possibilities of things that could happen and add that to a new regimen of meds, formula, sleep, ect... it gets stressful. So usually after we come home it is stress to the max for a week or so. And when we came home this time, I was accidentally over-medicating Emileigh. So lesson learned... I need someone to check me once we come home.
But the upside.
She now sleeps through the night, does not arch and scream (which she used to do anywhere from 15 to 30 times a day, sometimes more), she smiles and giggled the first time, and is gaining weight. Everyone is shocked at the difference. So she is doing better. She was supposed to have a G-tube surgery on the 23rd of May but that has been postponed and she will most likely get a GJ or J-tube. So I will feel better once that is resolved. We won't know until her check-up and we reassess. So at this point we have adjusted to our newest "normal" and onward we go.
