JollyRoger
Shared on Mon, 01/08/2007 - 10:26Hi guys, just wanted to let everyone know that we were able to bring Megan home from the hospital this afternoon. After a very long and tiring week for all of us it is so nice to be home and have her home too. When I would come home and work late at night while she was still in the hospital, I could hardly stand it because it was so quiet and lonely here, I couldn’t wait to get out of the house. Tonight it was so nice. Megan sitting in her chair eating and the boys playing with her and laughing, I had never been so excited to hear noise in my life. I really don’t have a whole lot to tell you believe it or not. Megan had to come home on the continuous 24 hour drip. They took her back down to 20 calorie formula instead of the 26 because her body just couldn’t handle it. Her poor little tummy is just so sensitive. We still have some tests pending that Neurology ran on her but it takes a while to get those back. She had so much done to her but she took it all very well. It seems like every time we turned around they were coming in to take blood from her. On Thursday night they came in about 9:00 to take blood from her and I had just looked at her arms and saw how black and blue they were from the other two times and her veins blew. This time they had to take 5 vials of blood from her (I was pretty sure she did not have that much left) and when the guys had filled up the syringe something happened and it broke. Her blood went every where. Oh, I felt just awful for her because he had taken as much as he needed and now he had to go to the other arm and start all over. She cried so hard that she sniffled for about three hours. I also woke up in the middle of the night to check on her and she was asleep and still sniffling. Talk about breaking your heart. I often sat there and watched her as she would sit in that bed looking between the bars and I wondered what she must be thinking. You know was she thinking, please don’t let them come in and hurt me again or was she just excited to be able to have a whole bunch of toys in her bed for once? Maybe a little of both. During the day I would sit and talk to her and tell her just how many people were praying for her. “One day, baby girl, you and mommy are going to have a girl’s day” I would say. We can do anything you want. I would start naming things and it’s as if she understood me and she would just smile. It actually made me pretty excited too. I would talk about her Daddy, brothers and her Nana, Pepaw, Mimi and Papaw and the rest of her family and just how much they loved her. One day I was even lying in her bed with her, just rubbing her head and telling her all about the day she was born. She just sat there and stared at me and listened. It was just wonderful. We met a lot of people too. It was sweet because the nurses started calling her the porcelain princess because they said she looked like a little porcelain doll. She loved it when they would come in and talk to her. Anyways, I totally got side tracked; we just had some really sweet moments that I won’t forget. Anyways, two things we still know exist, she still has a place on her brain that is sensitive, meaning that she can have seizures and we may not even know them. We also know that she has thickening of her small intestines. In about 6-8 weeks they will most likely have to go in and do a biopsy on her small intestines to find out what exactly is going on. Maybe within that time it will heal itself and just be nothing. That is what we are praying for. Yesterday when they weighed her she had actually lost weight from the day before. I was glad that the doctor was able to see how she did that in the hospital. See, they had tried her on bolus feedings (feeding her every 3 hours) the day before but she just couldn’t handle it. She was messed up all day. She started choking and her Physical Therapist even had to cut her session short because Megan was just getting too weak and winded and choking. When they put her back on her drip yesterday she did not choke as much and she gained the weight back. The bad thing about that is she is now back to being confined to her chair or bed and I feel just awful for her. She makes the best out of it though. I did decide to make some room down here in my office for her pack-n-play so she can have a little bed down here and lay down but still play with her toys. I kind of wish I had another crib to put down here but we will make do with what we have. Since she is also on 24 hour drips her doctor called our health care company and set her up with a new feeding machine that is a lot more portable that this one. It is smaller and it has its own carrying case. We had to wait to see how long she was going to be on drips and get the doctor to write for her to have one in order for insurance to cover one. They generally only cover the portable if they are on 24 hour drips. Oh, I can’t remember if I told you guys this in my last email but Megan also does not have the desire to eat. We kind of already knew this but it was very evident on Tuesday. She went from 5:00 that morning until 3:30 that afternoon without anything to eat because of surgery and her upper GI, well, she not once cried for food. She does not have that craving or anything. Most 10 month olds that went without food for that long would be screaming and Megan just sat there like she had never missed a meal. Her doctor said that something in her brain just isn’t connecting with something in her stomach telling her that it is time to eat. Oh, my goodness, I totally forgot one of the most important things, which is, Megan was able to gain back her weight that she had lost. Now, she is only up to 13 pounds but that is much better than when she went in weighing 12 pounds 6 ounces. PRAISE GOD! He said that changing the caloric intake, getting rid of her infection and changing her tube really helped. She had just been so sick and throwing up so much that it really took its toll on her. It seems as though Megan can’t go any length of time at all without food or she will lose weight. What I mean by that is she reacts much better to a continuous drip constantly going in that the bolus for some weird reason. He hated to send her home on continuous but right now it is working so we need to keep it up. We are still trying to find out what else is causing all this stuff but right now it is so important to just get weight on her and keep it on her so we have to do what ever it takes. We are just praying that she doesn’t get hit with another virus like she had that makes her drop like that. It seems so unfair for her to have to be confined like this still and it is heart breaking thinking that she is missing out on exploring and all those other wonderful things 10 month olds get to do but it is so awesome to have her here and at home so you have to look at that as such a huge blessing. I really apologize if this has not made much sense or if everything is all jumbled around but Jim and I are way past the point of exhaustion right now and I kind of feel like everything is in a fog or something. You ever get so tired you almost just feel sick to your stomach? Well, that’s us right now. Anyways, hopefully being at home will help and sleeping in our own bed sounds just wonderful! God is so good, you guys! He has once again brought Megan through and let her come home with us when things looked pretty bad. Megan’s road is long but we are not traveling alone. Our Father is on this trip with us and we couldn’t ask for anyone better to travel with. So I guess that is about it for now. We are praying that her weight will continue to rise and one day soon maybe she can get off her continuous drip so she can have a little fun of crawling around and exploring. We will be doing weight checks and doctor’s appointments as usual just hopefully not from the hospital. Thank you for praying and all your support. Love and God Bless!
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JR
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JR
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