Rough Patches

Its amazing how a few small things can snow ball into something major.
I took Claira into the Dr's on the 17 of June for a check up, along with the boys. All was well except she had a slight case of 'Thrush' in her mouth. I never dealt with that before but they assured me it was easy to treat. Other than that she was very healthy.
We we went out of town that following Monday with my parents and sister.Around Thursday I noticed Claira had a fever, but it was low grade so I assumed she was teething since she showed no other sign of being sick. We went home Friday, and by Sunday morning her fever broke. By that evening we noticed a slight rash, and by Monday morning it was everywhere. We went in to see her Dr. and apparently she had whats called 'Roseola.' Once again, something the boys had never had. Its a viral thing so you need to let it run its course. Luckily all it does it make kids cranky from the fever, but other than that nothing. The rash itself didn't really bother her. In Claira's case it was text book, and the rash was gone within a few days and we were back to normal. That was until the first of July rolled around.
Once again we were dealing with high fevers, but nothing else. I assumed it was the roseola still, not really knowing that anything else could be occurring. I took her in to see her Dr. but her ears, chest and even urine check all came out clear. Her appetite was a little different too, but I assumed with the fevers she wasn't feeling so well. Her appetite decreased so much within one day I had to take her into the ER that Monday so she could get some fluids, and blood drawn. Fluids seemed to help, and the blood work came back that she was slightly anemic. The ER Dr. didn't feel it was enough to keep her in the hospital, but that we definitely should follow up with her Dr the next day about her blood work.
We went home thinking she still much have some viral thing, and it was hard to shake. I gave my cranky little daughter a bath that evening, and noticed on her lower back it seemed a little puffy or swollen. I wasn't convinced it was something major and that I was just being paranoid.I mean after all, it wasn't bruised or anything. I could tell however that she was increasingly cranky, and uncomfortable. I assumed her body was aching the same way you do when having a flu, or bad cold.
I called the Dr's office the next morning, and we were told that we needed to go get blood work done again. They wanted to double check whether she was anemic. While I was sitting at the hospital with a very cranky child who by this time was only letting me hold her in certain positions, I get a phone call from the ER Dr. I missed his call and left a message asking me to make sure I call her Dr about the blood work because they seemed to have found something new. I thought, why are they getting on my case about this whole anemia thing. By the time I made it back to her Dr's office they let me know that over night a bacteria had grown, and is continuing to grow in her bloodstream. They sent me home, and told me I needed to return the next morning to see what the second blood culture showed.
The next morning Claira and I were getting ready, and she would not even crawl for me anymore she was in so much pain. I had NO idea what was going on anymore. It just seemed within a few days she went from trying to walk and taking steps, to not even wanting to crawl OR sit up for me anymore. She just wanted to lay flat. She was very lethargic and not taking bottles anymore.I was at a loss. By that afternoon we were sent to Northridge Hospital because we were told that Claira had some sort of staph growing in her blood.
I also mentioned to her Doctor, along with the new Doctor at Northridge that her back seemed weird to me the other day. She went from being cranky and uncomfortable to crying in pain every time I picked her up, or changed her diaper.The Dr. looked at her and agreed it did seem a little puffy but he wasn't too sure about it. Later that day, he agreed to do an MRI on her after her Ultra Sound came back showing there something her back. It could just be something superficial, but they wanted to make sure.
At this point however, it was clear Claira had full blown staph in her blood and they were concerned that she had MRSA type staph in which case it could be very hard to treat as it has become too resistant to most antibiotics these days. I still did not know at this point how serious things were because she seemed so healthy just weeks before. She went in for MRI later that afternoon. In the meantime Claira was being treated for the staph through IV. They started her on Vancomycin which I was told was a very strong antibiotic, and often used on MRSA. That night the Dr came into our room and asked to speak to me.
They let me know that it was not MRSA, but in fact MSSA which is much easier to treat. He then needed to show me the MRI results, and explained that the staph had spread to a large part of her back, and that she had grown a large abscess which had wrapped itself around her spine. He had a very worried look on his face when he began showing me that the abscess was pushing on the spinal canal where the spinal cord was. All he told me was we need to remove this or it will get to the spinal cord, and after that...he wouldn't finish his sentence. He then said, "I need to transport you to UCLA Medical Hospital as soon as possible so that the specialist there can better take care of her, and get her into surgery."
Within an hour I was in an ambulance to UCLA, where Claira and I were set up in the PICU and she was being prepped for once again another MRI, and they began another IV where she had blood drawn and was getting fluids and antibiotics. This is where I really started thinking to myself, what the hell is going on?? How did this happen? At this point my daughter was in so much pain, and tired that she was screaming and screaming. The nurses and Dr's took her off to the MRI, and Josh & I literally passed out in a few chairs that were left in the PICU for us. We woke up a few hours later with Claira in the room sleeping in her bed.
We sat patiently waiting for Dr's to come talk to us. In the mean time her nurse let us know another major concern was the fact that her white blood cell count was extremely low, and with out them she would not be able to fight off any diseases that came her way. They were not sure whether she had low counts before or after she got the staph. They also did not know whether the abscess came first or not as well. It was even more alarming to hear that the infection disease team was on her case, and wanted to speak with us as well.
MRI results came back quickly, and it was confirmed she needed surgery immediately. The idea was to go in and remove the fluids & abscess. This would be difficult because it wrapped around her bones and it was a fragile area in a baby. Luckily we were at the best hospital we could be at, and I was confident that everything would go well.
We waited hours in the waiting room downstairs. By my side was Josh, my mother and aunt & uncle. I also knew I had so many friends, family and even strangers praying for my baby girl. Finally we were told we could go to her room where she was sleeping still and recovering from her surgery. We learned that the surgery itself went very well, and they were confident they removed alot of the issue. We ran into another problem however, and that was the fact that the infection had got itself into her actual bones.
Claira would need long term antibiotics, and the infection disease team along with her Dr's were trying to figure out the right antibiotics to fight off this infection. A Picc Line was put into Claira's line, which is connected to a large vein that would allow us to give her antibiotics through that.
The whole process was very intimidating to watch, and Josh & I were very nervous about bringing our baby home with this "thing" coming out of her arm. They explained how to clean it and how extremely important it is to not let it get infected. The only thing that really mattered to us though was that Claira was showing such improvement already, and because of this picc line we would be able to take her home soon.
Her white blood cell count had also gone up so much within 24 hours after her surgery. This to us, alone with all the Dr's made us think she most likely had a low count due to the infection. This was great news to hear. As far as the abscess itself and the staph no one could tell us how they thought it all occurred. We heard from just about every Dr. words like, "strange" and "weird." They had no idea why this thing grew in that area of her back, and no one knew how long it had been there. I did however, have two Dr's tell me that if it wasn't for me showing a slight concern about Claira's back that they probably would not of even noticed the puffiness in her back and probably would not of done the MRI as quickly as they did. I thought to myself at that moment, the small things DO mean something bigger at times.
We have three children all of which are under the age of four. Both of my boys have had issues with their ears. Both have tubes, and Jake even had his adenoids taken out. He had a speech delay due to hearing problems from being sick so much. As hard as them having ear infections were I knew they would eventually grow out of them, and that at least its something their Dr can detect easily. In Claira's case, she has been a completely healthy child from day one. So when she continued with these fevers I almost ignored them thinking well its a viral thing and it needs to run its course. What I learned was because she showed no sign of ear or chest problems something else was up and that's when the small things really come in to play and MEAN SOMETHING. My mind has gone in circles about this whole ordeal. I've though if I just noticed something sooner, or done something different this would not have happened. Its one of the hardest thing we as parents go through...so much worrying! I'm not sure if this experience will make me an even more paranoid mother, or what. I have learned being a parent is all about balance and gut instinct.
I have no idea how long Claira will now have to be on these long term antibiotics, and we have no idea if something else will occur due to her immune system. The goal is to get the infection out of her bones, and to remove anything else gorwing in her blood.We have no idea how long she had the staph, where it came from, or what all occurred first. We have to continue to meet with the infectious disease team, and her Dr's once or twice a week at UCLA Hospital so they can continue to run tests.At home we give Claira two types of antibiotics every 8 hrs through her picc line. Hopefully nothing new comes up and we will have all of this behind us soon. They are not sure if she will have any long term effects from all of this.
I know this however, my daughter is one of the strongest little peeps I know. She went from almost walking to barely crawling. Went through three MRI's, a surgery and many many times of being poked and probed within just one week, and is now home crawling around the house and managing to STILL get into her brothers things.She may be slow, and not back to her old self but I know it wont be long because she is one tough cookie! During this whole time she continued to smile which kept Josh and I in good spirits. She is the reason I did not cry ONCE while she was in the hospital. Except for once when the Dr told us her surgery went well and they thought she would be recovering well. These were tears of joy.
Time is precious. Family is precious. I already have know before I have amazing little humans, but this experience has brought me even closer to them all, and has changed my little family. I could see that in times that were rough, and we didn't know how it all was going to work out, Josh and I were a good team. He was there for me as I was there for him. My parents came in and helped so much with the boys. They have returned home, and have shown so much love for their little sister.
Jacob knows and understand his sister is "a lil sick," and has some owies. They care and watch out for her safety. What an amazing team the three of them make. What an amazing family I have. I have never felt so blessed in my entire life. Claira's strength has shown me there are so many possibilities out there, for all of us.