Today we celebrate Emily's eight month birthday! I would say that it is a happy day here in our household, but it is quite the contrary. For the past few days Emily has been sick...when Emily is sick, we all suffer! If you are a parent, you know what I mean.
For the past few months we have been trying to increase her food at each feeding. We came to a limit of 4 ounces, and she can't tolerate any more than that. If we attempt to give her more, she dry heaves. She would throw up, but she has a nissen, so she can't. She just wrenches in pain and makes some horrible noises until it subsides or we insert her feeding tube and watch all the food shoot out. All this was to set the stage for Friday...
Friday morning I was giving her the morning feeding and all was going well. After I was finished, she started to dry heave. I didn't give her more than she could take, so I was surprised and concerned; but went on as usual. At lunch, it was the same thing and, again, I was concerned. The only thing is that it didn't stop. All day long she was making wrenching sounds and gagging. We thought about taking her to the ER but we didn't want to wait hours for them to tell us she is fine. So on Saturday morning when the same thing happened, we went immediately to the pediatrician.
Our regular doctor had the day off, so we got a doctor who was new to Emily's situation. He was great and covered everything in her history to see if he could figure out what it could be without missing anything. Going to the doctor's office is always fun because there are so many variables to Emily's daily life. She is on seizure medication, that we just changed; she eats from a feeding tube; which many doctors never encounter; she gets most of her food during the night, which is different than most children...the list goes on and on.
After some tests and careful observation, we left with the knowledge that she has the flu! I think we went there with this knowledge, but now it was confirmed. She hadn't had a bowel movement in a few days, so he suggested prune juice to help her with this issue and said there wasn't much else he could do.
We went home and continued to try to feed her and just take care of her as best as we could. We put her to bed at her usual 9:00 pm bedtime and all was quiet for a short time. We went to bed about 11:00 and were woken up about 12:00 by her struggling to breath. She has allergies, like her dad, and was having trouble swallowing the mucus in the back of her throat. She was gagging and coughing and just plain struggling for breath. We cleaned her nose and held her upright for a while until she was breathing somewhat normally and finally went back to sleep.
Sunday was more of the same, but it was Sunday night when we really began to see trouble...As I mentioned, she gets most of her feeding through a pump over night. During the night, she began to struggle breathing again and she also began to dry heave. As she is dry heaving, the pump is pushing food into her belly. This was not good and had to be stopped. I took off the tube and food shot out like a bullet, releaving some for her discomfort. Fortunately, it was about 3:00 and there wasn't much food left in her pump, so we shut it off and didn't worry about it. Again, we calmed her down and put her to bed.
Last night was the same story, but this time she had her episode about 12:00. Because she had so much food left, I put her back to sleep without the pump and woke up at 4:00 to give her a regular feeding. I guess I will continue to do this until she is back to health. The things we do for our children!
I forgot to mention that on Sunday and Monday night, when she was having trouble breathing, we put her back to bed in her chair. This allowed her to be in a more upright position and allowed the fluid to drain from her throat. It took her a little longer to fall asleep, but she was able to breathe much better.
Today, I am just trying to do my best to make sure that she gets the food and sleep she needs to get better as soon as possible. I know that she won't remember her eight month birthday, but I'm sure it will be a long time before I forget it!
Please keep us in prayer as we try to do our best to take care of our little one. We are new to this and many of the doctors really don't know how to handle all her issues. We are in God's hand and know that He will bring us through each situation. He is faithful and has provided for us every step of the way thus far. We have no reason to think that He won't bring us to the end!
One last little note. We went to the orthopedics doctor yesterday to have Emily put on a medication to relax her muscles. We have been waiting two months for this appointment. We will start giving her this medication as soon as she is feeling better (to avoid interactions with other drugs that we are giving her) and she was also given a prescription for orthopedic braces for her feet; which we will probably get within a week or two.
So, we are doing well considering all that is going on. It is never dull in this household!...
All for HIS glory,