Wednesday, March 16, 2011

It's been a long time...updates on Lilybug

I have been wanting to post for months, but haven't had access to a computer or a few minutes to think. I can't believe I haven't blogged in several months. SO much has happened. Lily was hospitalized in September for a week, which ended up doing far more damage (mentally to me) than good. The week pretty much stopped me in my tracks and I got pretty out of sorts. The beginning of October, I took her off all her meds to see what her body would do naturally. She has been sick pretty much since she was a few months old. She had been on way to many meds that her body was so confused. She took more drugs to fix the side effects of the drugs she was on. Then when we added a new med to counteract an aspect of the side effect med, it was getting out of hand. Besides, who wants to fight a 3 year old several times a day to take meds? Not me!!! She got to the point that she wouldn't eat or drink anything because I had stuck her meds in everything possible. She did ok for a bit. She would have good days/weeks, and bad days/weeks but nothing that really was significant (at least to her Rheumy, not me). Around Christmas time of 2009, Lily was sick. She threw up dozens of times. The Christmas of 2008 she was sick as well... This Christmas, we were waiting for something to happen. She had a bad cough that just wasn't going away. I took her to her Colleen, her nurse practitioner that I ADORE, and everything seemed normal for a bad cough. The night of the 29th, I became worried. Lily's coughing turned to wheezing, Lily was a limp noodle and there was no help in sight. Lily has always been a kid that needs IV fluids to perk her up, even though most hospitals now insist they be given oral fluids. I finally took her to Cottage in Santa Barbara. It was a drive, but she had never been to the hospital in Ventura and it was the wrong time to look insane. Thankfully, once she was finally seen, the doctor gave her fluids since I demanded it immediately and Colleen had called it in and it was on record. Within an hour of fluids, Lily was jumping up to hug and play with the cute doctor. They did the RSV test, which came back positive. She also had a spot on her lungs; pneumonia. CRAP was my thought. Why did Lily have to have so much crap going on in her little body. Who did she get it from, who did she pass it on to? I was really concerned that she couldn't take the vast majority of antibiotics and what would this do to her already compromised immune system. I finally got her home, only to have her throw up a few times the second I walked in the door. She once again became a limp noodle. I called the ER back, and they said to stay home and see what happens. Lily slept with my mom that night since I was exhausted. Twice my mom called me to listen to her breathing. It was downright awful. I went back to sleep since she was sleeping. Just a few short hours later, I woke up to hear Lily wheezing. It was a scary time. Given all of Lily's medical issues, breathing has never been an issue. Her chest was raising and lowering dramatically. Her wheezing/breathing was not normal. I recorded it and sent it to Colleen . She heard it over the phone and told us to go back to the hospital. I called the hospital again who was not so keen on the idea. So I took her to Sansum Clinic (where her Peds is from) and they did a breathing treatment that just did not work. They advised we go via ambulance to Cottage. Freak out moment for a bit. It was the sickest she had been. I opted to take her instead (cost and being stranded). We got to Cottage where they did breathing treatments and more testing. The treatments worked for a bit. Lily would have moments of normalcy and then moments of being really out of sorts. After several doctors, fighting with a lame know it all nurse, we finally got a doctor and nurse I loved!!! They were trying to send us home. I was not going home again. Nope, mama bear came out and I was hell bent on getting her better. They were comfortable with her having breathing problems, since they assumed she had it before because of her arthritis. Well, the great nurse really pushed for an admission regardless of the overcrowding. Lily was near the end of the RSV, but it was the worst it had been. We were finally brought up into the room where Lily spent the next 2 1/2 days hooked up to fluids and oxygen. She bounced back a tad and we finally went home after the New Year. What a way to ring in 2011 right? I prayed that it was not a sign of things to come!!!!! January and February went by pretty normal, good days and bad days. Lily has had more joints affected but she pushes through it. We had our normal routine of therapies and doctor visits. She thankfully didn't get many of the colds going around. Our friends came down and Lily loved playing with them. On February 25th, I had surgery on my elbow. I was in a lot of pain and pretty souped up on Vicodin. My mom was Lily's caregiver. On the 27th, I know that she didn't feel good. After being downstairs for a little bit, my mom calls me to come down. I get my dizzy self downstairs to find Lily stiff and the worst I had seen her. DAMN ARTHRITIS was hurting my baby.

The video by itself it the video from that morning.

My mom took Lily to her Rheumy. By that time a few days later, Lily was pretty much back to "normal". They were concerned with the video (supposedly) but there was nothing wrong with Lily. There was no explanation as to why her body did what it did. It was hard not being there. Over the phone, I was frustrated. I often feel that most people don't take Lily's physical issues seriously because they don't see them. I feel that way about my mom too who doesn't see Lily much during the course of the day. Just because she is fine for a little bit doesn't mean all the other times she is fine. So frustrating!!!! Lily is the typical "but you don't look sick" kid. Unless you were paying attention, the majority of the time she does look "normal". But if you start to look, you can see her not use her hands and fingers, you see her knees and ankles buckling, you see her limp, you hear her complain, you see her rest and rub her owies. you just see what I see. Am I more sensitive, absolutely.

March was a funky month for her. She was in what most people call a "flare-up". She started having low grade fevers again, stiffness in the morning, days of laying in bed for several hours, warm joints, hives, red hot splotches on her body etc.... I gave her a few short rounds of Naprosyn, that didn't seem to do much. All the rain we had really affected her. It's amazing how rain can make a really mobile child less mobile.

The past 2 weeks Lily has been in heaven. My niece, Delaney, has been here. The last time Delaney saw Lily was when she was hospitalized over New Years. It really bothered Delaney to see Lily like that. She needed to see her normal and happy. Lily LOVES Delaney. We went shopping, went to the beach with another JA family, shopped some more, played at home a lot and pretty much drove me crazy!!!

The next few weeks are going to be crazy. Lily has an appointment with Dr. Boles at Children's in Los Angeles. He is a genetics specialist. We are trying to figure out all the other stuff going on with her. Then she sees Dr. Gopen again (both ear tubes fell out and her speech is still way below normal), then her Rheumy. I am also trying to raise as much money and awareness for Juvenile Arthritis, through fundraisers and the annual walk.

Please feel free to ask any questions.

I hope to update more regularly:)

Much love,