Tuesday, the 9th, Gracelyn stopped eating. She ate well all of Monday but then Tuesday morning, nothing. I really didn't think anything about it because as a mom of 4, the boys have all gone through those phases. I tried often throughout the day and still couldn't get her to eat. Wednesday came and still she wouldn't eat, but she showed no other symptoms, other than having moments the last 2 days of being inconsolable. I still didn't think much of it because I thought she may be teething. We went to church Wednesday evening and she people watched and interacted with people who gave her attention, like she normally would do. That evening she ran a fever of 102 but since she hadn't eaten anything I wasn't sure if she was able to swallow so I opted not to give her Tylenol. I bathed her instead and her fever eventually broke. Thursday night, sleep was nonexistent, we were up all night long, not even sleeping for a solid 30 minutes. It was bad.
Thursday morning I was preparing the little boys for CDO and getting dressed myself while Gracelyn was propped up on pillows on my bed. Even on nights she doesn't sleep well, she will be awake for a short time before taking a little morning nap so I was alarmed when I looked over and she was sound asleep, completely hunched over. I went over to her and tried to wake her up and noticed she was having difficulty keeping her eyes open, like she was drowsy and her eyes were glassy and not tracking . I was immediately concerned so I took her footed sleeper off and observed her arms just fall onto the bed when I removed them from her sleeves. She was completely limp. I was scared. I loaded the boys and Gracelyn in the car and called the pediatrician. I explained to the nurse what was going on and she asked how quickly I could be there. I told her an hour. I dropped the boys off at church, jumped on the highway, turned on my hazards and prayed and bawled for my baby.
We arrived in exactly one hour and the nurse took one look at her and I could see her concern. The doctor came right in and I could see it in her face too. Gracie's vitals were strong, her abdomen was soft, her eyes were the cause for extreme worry. They tested her blood sugar and it was normal so the only thought was something mental like a tumor or metabolic disorder. At this point I totally lost it. Dr. Bowen called for an ambulance to take us to Children's Hospital so I called Ryan and my mom to meet me there.
Doctors and nurses were waiting for us when we arrived in the ER. They immediately started an IV for fluids because she was dehydrated and then began lots of tests, including a CT scan, spinal tap, blood work and urine tests to see if possibly she had been given any meds by her brothers. After nearly 8 hours in the ER, all the tests came back negative/normal and the doctors were scratching their heads and throwing their hands up as we were moved up to PICU. I was feeling very discouraged, not sure that we were ever going to find out the cause of Gracelyn's sickness, because she certainly was a sick baby. She had laid on the narrow ER bed the entire time, not moving a muscle or uttering a peep, definitely not normal for a baby about to be 5 months old.
In no more than an hour after arriving in the PICU, her doctor, walked in and began examining her. I was on the other side of the room speaking to one of the residents, telling him her story (for about the millionth time) when suddenly Dr. Gesseroun announced that he was pretty sure he knew what was wrong. He told me that she still had her reflexes but all other symptoms pointed to infantile botulism. I was stunned. I quickly told him that she is a strictly breastfed baby and had never had honey or raw meat. He said she could contract it other ways and no matter how hard we tried we would probably never know how she got it. He left to go pull up some information for us to read. When he returned and I read the infant botulism article, it certainly did fit what was going on with her. He went over the plan of action and even told us that it may not be botulism and they wouldn't rule anything out and would keep working to find the cause of her illness. He had treated botulism in the past and warned us that it could take 2-10 weeks and would be a very long and bumpy road.
The CDC had to be notified so that we could obtain an immune-globulin IV medication. We found out that a botulism treatment center in CA had the medicine that we needed but it was a race against time before more receptors between nerves and muscles were terminated and she lost control of her lungs! Her face was sunk in, eyes had been affected, she had no gag reflex, no voice, no ability to suck or to turn her head or lift her arms and that is only what we could tell, we didn't know the extent of the damage. The lungs were next in line to be targeted by the toxin. The medicine was scheduled to be flown in Friday morning and we were assured that it would be plenty of time. The doctor reminded us several times that the medicine would simply stop the toxin from destroying any more receptors, it would NOT heal what had already been killed. We understood.
Friday brought another scary day. Gracelyn was declining and at rapid rate. The flight with the medicine was delayed and didn't arrive until evening. By early afternoon she was even weaker than she had been that morning and her arm reflexes were non-existent. At 6PM, she received the BabyBIG globulin intravenously without any allergic reactions so the first goal was met!!! Now we waited to see if she became worse.
It was and has been all about patience and faith.
Gracelyn on Friday as she was waiting for the med to arrive.
No comments:
Post a Comment