Sickness

We are in the middle (hopefully closer to the end) of an illness. Lacy is sick. Not your normal run-of-the-mill sickness, no, CCHS kids are different. A whole different breed really, and the ramifications of having a CCHS kiddo are really hitting me hard. (For the record, I wouldn't change it one bit!)

Last weekend we were having trouble maintaining Lacy's blood oxygen saturation. (We call it her "sats"). What should normally be 97-100, we were struggling to maintain in the high 80's to low 90's. For the record, this is not good. Since Lacy wasn't showing any physical signs of illness, we figured it was her vent (we changed her circuits three times) or maybe her pulse ox machine wasn't working right (the thing used to monitor her sats at night), possibly it was her trach... maybe it was too small, I mean she has grown soooo much and hasn't gotten a bigger trach. Randy and I were frustrated, and not sure how to fix the problem. By the second night, I remembered something I heard a doctor once tell me, "always try to keep a trached patient on room air if possible, because an increased need for oxygen is always a precursor to something going wrong. They are going to get real sick real soon."

Later that night (3 am to be exact) Lacy was vomiting and had a temp of 103, and her heart rate had gone very high, then dropped low (REALLY bad sign). She was officially sick. After we cleaned her up, we added oxygen to her vent, gave her some Tylenol, and moved the whole operation to the living room so I could stay with her and watch her vital signs. The set-up we have is no joke. I have seen cancer patients on hospice with one-fourth of the equipment Lacy needs.

The next morning (yesterday) I called and got an appointment with a doctor to check her out. I really wanted to do this on my own (Randy still at work). Okay, I really didn't want to, but I felt like a jerk asking people to drive two hours round-trip just to help me load and unload stuff. (Although my sister and Sabrina both insisted they could be there at the drop of a hat!) I knew it would be difficult, but I figured I could manage. Soooo around 9 am I packed up Lacy's vent, pulse ox machine, suction, both of her 10 lb folders full of her medical information, an oxygen tank, little stand for said oxygen tank, drinks, snacks, DVD player, headphones, her backpack full of supplies and Lacy! I managed to get it all in the car in under twenty minutes. I was sweaty, but accomplishing my goal! By 9:30 we were on our way to the doctor's office. At 9:35 Lacy started barfing all over herself and the equipment. Damn. (Now, mind you, she didn't stop singing or chatting. She just barfed and went back to her usual old self...CCHS kids). We pulled up to the offices and I started the million-dollar operation of extracting all of the equipment and getting it onto Lacy's stroller. As I climbed out of the car, I knocked my purse onto the ground and everything fell out and started to roll away. I took a deep breath and continued working. I managed to pull out the stroller, and pack it full. Only dropping things here and there. As I helped Lacy out of the car, she knocked over a cup of orange juice I had given her and the top fell off, spilling OJ on me, her, the stroller. I started to cry a little, but reminded myself to "suck it up". Really, the OJ wasn't an issue, because Lacy started barfing again. Everywhere. But by now I am a hardened mother of a three-year-old. I just dabbed a paper towel on it and kept moving. I started pushing the stroller through the parking lot, only to notice that the weight of everything was causing the frame to bow and the tires to move in a funny direction. Damn! I had to take some of the weight off, so I started packing the equipment onto myself. I was attempting to push a stroller, carry five heavy bags on my body and pull an oxygen tank. That's when I officially started to cry. By the time I arrived at the office door I had managed to pull myself together again. Unfortunately, the door did not have handicap access, and I couldn't quite get it to stay open long enough to get my entire caravan through the door. I looked over at a nurse (taking her break) sitting nearby. She ignored me. "Stupid bitch" I muttered. "Stupid Bitch" Lacy repeated. A sense of failure overcame me. I squeezed through the doorway while telling Lacy that, "mommy was terribly inappropriate back there, and we are never to use that word again". Upon arrival (ten minutes late) for our appointment, there was not a single place to sit down. I wanted to make a scene. Start screaming at people because my kid was "effing handicapped". But I didn't. Guess I am growing up a little. After a few minutes a seat opened up and I found a place to sit. And Lacy needed to go potty... it just continued on like this for three and a half hours (that was our total stay). Of course the doctor we had was fresh out of school and knew nothing about Lacy or her condition, and treated her like any other kid, then sent us home. I was pissed, but didn't know what else to do at the time. Besides, I just wanted to get home.

Lacy has only gotten worse.

Today I finally called in the "big dog" at Loma Linda and he, as always, was awesome. I told him what was going on, and he gave us instructions on what to do. I feel a little bit better. But it is still scary.

The thing is, kids with CCHS don't show any signs that they are ill. Lacy wants to play and run and sing, and if we let her off of the oxygen, her sats drop dangerously low. From just looking at her, you would never know that she had ANY problems, at least not until she just dropped dead. I can not express how emotionally exhausting this is. I am so thankful that both Randy and I are trained respiratory therapists, because this would be impossible to manage alone. Tonight I had Lacy sitting on my lap and I said to Randy, "she stinks. She smells like an ICU patient." I decided that we would take her off of her oxygen long enough to get a bath. Of course her sats dropped dangerously low and her heart dropped too (Lacy was having a blast in the tub splashing and singing and telling us stories). We called off the bath and put her back on her vent. I knew that CCHS kids present a false sense of health, and they can go bad very quickly, but I had yet to experience it. We are living it.

Keep us in your prayers. This is really scary.