On Friday, November 1st, Eleanor started acting like something was hurting her. It was as if she had a really bad diaper rash. When you picked her up she would tense up and pull up her legs and she was kind of fussy. However, she didn't have even a hint of diaper rash. Being that it was Abi's birthday I was busy and didn't pay too much attention except to note that maybe Ellie was getting sick or something.
On Saturday Ellie continued to seem like she was in pain and be fussy, but again, because of the birthday party I just figured she was coming down with something and didn't pay a whole lot of attention. By the end of the party I thought Ellie was running a fever so I took her temperature. It was 99 point something. A slight fever, nothing to worry about. I took her upstairs where Dave was watching sports and asked if she could nap next to him on our bed, which she did.
After she woke up I nursed her and took her temperature again. This time it was 102 point something. I stripped her down until she was just in a onesie and was holding her on my lap while she chewed on some baby toys. After a few minutes she started drooling like crazy. I thought it was kind of weird, but she was slobbering on toys at the time and babies drool, right?! I wasn't concerned until I saw her doing something odd with her tongue. She was pushing her tongue out and back in and there was copious amounts of drool. And then her mouth started shaking. I called Dave over and said that it was really weird because it looked like her mouth was having a seizure. Dave took her so I could go call her pediatrician. Because it was Saturday I had to call the nurse because the office is closed. I described what was happening and the lady said, "Okay, someone will call you back soon."
What!!! Call me back soon? By now I was getting seriously worried because Ellie was non-responsive. I told Dave I was taking her to urgent care and to call Nathaniel (Dave's brother) to come over RIGHT NOW to give her a blessing first. By the time I had Ellie buckled into her car seat her arms and legs were starting to shake. Now I knew she was having a seizure and I told Dave I was calling 911. Nathaniel came right then, so they gave her a priesthood blessing while I was on the phone with the dispatcher. A couple of minutes later the ambulance pulled up and Ellie and I climbed in and were off with Dave following behind it in the van.
The EMT gave Ellie a shot of something in her left leg. She threw up all over my leg and arm. Her left side soon stopped shaking, but her right side kept on shaking. The EMT gave her another shot on the right leg, but she still kept on shaking. The EMT did point out to me that her eyes would focus for a second and then she was back to non-responsive mode. They took us to Harrisson Hospital in Silverdale. The emergency room action is kind of a blur now. They continued to give Ellie medicine until she finally stopped shaking. Now she was in a drug-induced sleep. They did a CT scan, drew blood etc. The head doctor told us he didn't know why she was having a seizure, but that maybe it was meningitis and that regardless she was a very sick little girl and they were going to fly her to Mary Bridge Children's Hospital in Tacoma. All of this took several hours. My Mom came and watched with Dave and I as they got Ellie all ready to be life-flighted to Tacoma. At first they told us there would be no room for me in the helicopter, but when the actual crew arrived they said I could come (after warning me about motion sickness because it was kind of windy outside). So, Ellie and I hopped in the chopper and Dave drove the van to Tacoma and my Mom went to take care of our other three kids.
We arrived at the hospital in Tacoma and took us to PICU where the doctors let me stay for a little while. My brother Kevin is living nearby right now, so he came in and they all thought he was my husband. Then they needed to put in a central line from Ellie's neck to her heart so that they could be ready to administer any medications or antibiotics she might need. Kevin and I were hustled into a little waiting room where Dave joined us when he arrived. Then we were able to come back to Ellie's room and be with her again. The next few days are a blur again. They did scans, tests, poked, prodded. Dave stayed that night with us and most of the next day. After reviewing all the info they had of Ellie's brain the doctor told us that he was 100% sure that she had a genetic disease called Tuberous Sclerosis. They handed us some information about it and it was shocking news. We had come in thinking our daughter was just having a seizure due to a high fever (the same thing happened to me when I was 14 months old) and now they were telling us she had an incurable disease! There are a lot of things that can happen with this disease. According to the paperwork they gave us it can be so mild you can go through life never even knowing you have it. Or you can be severely disabled. It can cause autism, can cause problems with different organs in the body and cause death. Like I said, shocking!
I cried a lot and tried to focus on the facts instead of the "what ifs" of the disease. I felt comfort knowing she had received a blessing. We were told that she would be on seizure medication from now on because most people with TS do suffer from seizure activity. The doctors now wanted to take an in-depth look at Ellie's organs to make sure there were no problems there already. So she endured more tests. They did ultra sounds of her kidneys, an EKG on her brain waves, an echocardiogram of her heart. They did find one spot where there is a fatty deposit in her left kidney and one little spot in her heart. Neither of them are things that are life-threatning, but they will be monitered closely all her life to make sure no problems develop.
According to the doctors (and I saw and talked to a LOT of them) Ellie has a good chance of being a normal little girl who takes seizure medication. Because her development so far has been normal it will probably continue to be normal. Since leaving the hospital we have also been to an eye doctor who said her eyes are just fine and he expects they will stay that way. All in all the news so far has been good. Eleanor may have an incurable disease, but we are full of hope that her case is a mild one and that she will live a full and happy life. We are so grateful for the family and friends who have rallied around us during this difficult time. And most importantly, we are thankful the Lord has blessed us with a sweet baby girl who we love so much!
Ellie turned 11 months old on her last day in the hospital so these pictures are from the next day. She was still not quite back to her normal self and was not really interested in having me take her picture. I did manage to get a couple where she is not crying.
2 comments:
we are so happy she is going to be a happy and mostly healthy baby!
We are so grateful to have that sweet baby girl in our family!
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