Monday, September 24, 2007
Sunday, September 23, 2007
This week with Regan started off pretty rough. She had been waking in the night again. Not nightmares, just waking up off and on through the night. It culminated on Wednesday night with her waking and just crying and crying and crying. Not scared crying, just crying. I had no idea what was wrong. I tried everything. We finally ended up getting out of bed and meandering the house and then got back in bed and watched The Amazing Race for one and 1/2 hours. This is when I feel exhausted being single. What I wouldn't have given on one of those nights to be able to just let her visit someone else one of those afternoons so that I could nap. Anyway, I took her to daycare on Thursday and was sure I would get a phone call that morning to come pick her up because she was so tired, I thought she would give them a rough time. By noon, I thought I was home free because I hadn't gotten a call and they go down for a nap at 12:00. I had to go to work that morning because I had a scheduled meeting with the wheelchair vendor to make modifications to several children's chairs. At 12:37 I got two phone calls right in a row. One from the downtown ESE office, the other from the daycare. I knew it couldn't be good. The daycare was calling all my contact numbers to get a hold of me to tell me that Regan had severe rashes on her feet and hands and was screaming and scratching herself like crazy. The ESE secretary called my mom and told her the daycare had called and couldn't get ahold of me. My mom works in the downtown school building and so the when Karen, the ESE secretary, heard that the daycare had a "serious" concern, she called my mom. I travel to 14 different schools and so they don't always know what school I am at. Calling my cell phone is the most direct way of getting ahold of me, but they tried that number second. I immediately went to the daycare. I couldn't get ahold of my mom, her secretary told me she was out looking for me and Regan. We ended up pulling into the daycare at the same time. We went in and Ms. Barb, the daycare director met us and was very worried. She said Regan had been itching and screaming and she had a severe rash on her hands and feet and they were starting to swell. She had read what I wrote in her medical information and I had said to call immediately if she developed a rash and she knew some of her medical history and she was concerned. I got Regan and we called the doctor who said to come in right away.
We arrived at the doctor and one of the things they did was a strep test. I won't bore you with all the details, but basically they were not sure if it was a definite positive. Dr. Jones threw out several possibilities, Kawasaki syndrome being the one he thought it looked like the most. She didn't have a fever though and so he was ruling that out for now. He said that Dr. MacKoul said many asians get a rash on the hands and feet with strep so we were treating it like strep for now. He pointed out one patch of redness, not rash, on the calf of her leg. He said it looked like the beginning of a skin infection and if it changed at all to call the office or get to the ER immediately. He said it was probably just a no name skin infection, but to get it looked at if it got worse because of the word I am getting so sick of hearing: MRSA. His indecision about her diagnosis did not make me feel comfortable. After the visit there were still unanswered questions that made me worry. His worry about the redness increased my worry.
That night, we were up for hours with her screaming and itching her feet. The next morning I thought things looked better. I had a flat tire, had to walk Konnor to school (he was late, of course) and get my brother to drive me to my mom's work so that I could borrow her van. This took a couple of hours and by the time we got to my mom's Regan had the same redness on her calf showing up on her underarm. Her axillary lymph nodes were also very swollen. Her calf looked worse. I called the doctor they said to come in immediately. By this time, I am panicked and managed to be a crybaby when I called my work to tell them I wouldn't be in.
We got in right away and saw Dr. MacKoul. I LOVE her. Can I say it one more time: I love her! She is awesome. She peeks in the door and shakes her finger at Regan and says, "You're going to be the death of me little girl!". I said, "You!" and she laughed and said she has nothing on me! I will say, I have so much more appreciation for parents who have chronically ill children. It will break you if you let it. I don't know how they are so strong. The mental strain is unreal. I can deal with chronic health issues. I just am terrified of it being life threatening again.
Dr. MacKoul examined Regan and said that the redness is not connected to any skin opening. She had several massive mosquito bites on her legs that were healing and I was so scared that had provided a skin opening, but the redness was not around them. She said the redness on the arm also did not have an opening it was surrounding. It looked exactly like the MRSA did when she was in the hospital. Dr. MacKoul said she didn't think it was and we were going to put her on a steroid to treat the redness and provide her some relief from the itching. She did say if it got worse, she would be on stand by this weekend for me to call. She said she would let her husband (who was on call this weekend) to tell her if I called and she would meet me at the office to personally look at Regan. That is a great doctor! We had a joking conversation about me just needing to make a standing appointment every month, and Dr. MacKoul mentioned that there were about five patients in her practice who the office staff know are to get immediately seen if they call. We had the dubious honor of being one of them! While I was there, I got to meet the triage nurse, Betsy who I have had many conversations with on the phone, but hadn't gotten to meet. Dr. MacKoul tracked her down when I casually mentioned that one day I wanted to meet her. Betsy and I had a nice little conversation and it was nice to put a face to a voice! It is just a great office. I feel confident in Dr. MacKoul's clinical judgment and she put my mind to ease once she examined Regan.
The concern with Regan's MRSA is that there are only two drugs that it is responsive to. You can't treat it with the regular protocol because it is an unusual strain. MRSA is very common, her strain of MRSA is not. The infectious disease doctors said they had only seen one other case so resistant to all meds. That is why they feel it came from China, because it is such an unusual strain. The only effective drugs must be administered through IV and that means staying in the hospital. The second concern is how it went systemic and began spreading up her body. My constant fear is, if it comes back I don't want it to become resistant to the two drugs it responds to now.
The other great thing about Dr. MacKoul is that she has such great clinical judgment and the steroid gave Regan almost instant relief. She was happy within one hour. After not sleeping for about a week (she must have been getting sick and feeling the beginnings of illness), we slept in that night until 9:30 the next morning!!!!! Sleep has never felt so good! I was a walking zombie all week and so I felt so refreshed! Her arm and leg look no worse and so we feel it isn't MRSA, but just a viral skin thing like Dr. MacKoul said. I am so glad all my fears were unfounded!
Sunday, September 16, 2007
Library event, you can click on any picture to make it bigger.
Playing hide and seek with her cousin! She had undressed herself trying to get me to let her shower!
Wednesday, September 12, 2007
Monday, September 10, 2007
Friday, September 07, 2007
Konnor and Jason in their fishing outfits.
Fishing off the pier. You can't really see it, but Regan is crying hysterically! She hates these giant people and critters who always want to take their picture with her!
Regan doing one of the things that she does best...... talking on the phone! (Please ignore the mismatched outfit, we were "bumming around" at home! ) Notice she is all dolled up with her "bracelet" on.
On Wednesday, I had an appointment with our adoption social worker to complete Regan's second post placement visit. I tried mowing the lawn on Tuesday, but of course my lawnmower broke a belt. I told Jennifer my disclaimer was that I tried, but don't judge me on the grass! I hate yardwork. Despite the yard tribulations, it was nice to catch up with Jennifer. She had a new referral to deliver to a family and she was driving to meet them after our appointment. How exciting! I will never, ever forget the excitement of Regan's referral and I am so happy for everyone experiencing that wonderful emotion! Jennifer and I sat and talked while we completed Regan's paperwork and we did some extra paperwork while Jennifer was here ;)
Thursday was not such a good day. I attended a memorial funeral for a little 5 year old little boy. Please keep Amy, Jimmy, and their family in your prayers as they mourn the loss of their five year old son. As unbelievable as it is, this is the second child that they have lost. I am devastated. I saw him for therapy from the time he was 8 months old until he was almost 4. For over two years, I was at their house 2-3 times per week. Tyler was the most awesome little boy. He would smile at the sound of your voice and even when he was fighting seizures, aspiration fears, and various other medical concerns, he would give the most amazing smile and laugh. It makes you come home and hug your own baby that much tighter.