Wednesday, April 23, 2008

Family Update

Jonathan did great last night with the pump and his feeding. His feedings started off at 50% and each night we'll increase by 10% until we reach his goal of 10 hours at 100%. He slept like a baby, BUT his Momma DIDN'T ! It has been 4and a half years since he had his G-tube. I had forgotten about all the getting up in the night when the pump alarm goes off. I guess like child birth you only try to remember the good things...LOL! Well, Jonathan went to bed at 8:30pm and I went to bed early 10:30pm , I knew I would be having another crazy day on Wednesday and NEEDED some rest. At 11:45pm the pump alarm went off, that was the start of my VERY LONG NIGHT! The alarm went off because Jonathan was laying on the line, it had a crimp in it .....this is the part I forgot! The alarm went OFF every hour,and I'd have to go in and reset the pump...Ugh! Jonathan and William slept through the alarm, but NOT Wesley! Around 1:45am it went off AGAIN, I fixed it laid back down and hear Wesley. He moaned some and then went back to sleep, but not for long. By 2:15am he was up(kind of like my post Wesley's Up) I let him cry for a few minutes but the crying got louder and louder. I went in to check on him and surprise, surprise a diarrhea diaper. I get him up change him put more medicated cream on his blistered bottom, that isn't getting any better. I rock him and it takes me a hour to get him back down. By that time it's 3:30am, then the pump alarms...sigh.. it does this 2 more times. At 5:45am I just turn the pump OFF, I'd had enough! Our alarm clock was set for 6:00am, and I needed to get ready to leave the house by 7:25am Elizabeth was going to get her wisdom teeth pulled this morning. So, I thought turning the pump off was the best idea for this morning. I pray tonight Jonathan stays OFF the line, and we get more sleep.

Tuesday Jonathan had an appointment with his Sleep Disorder Doctor, Dr. Viscomi.We told him how well Jonathan did with the CPAP mask and that he hasn't worn it since he had is tonsils, adenoids, and tubes were put in. We go back to the ENT next week and he should be able to wear the CPAP mask again. Then I told him the GI doctor said that he couldn't wear the mask with his feeding tube. Dr. Viscomi said yes he can wear the CPAP mask with the feeding tube and he would talk with the GI. I'm looking forward to Jonathan using the CPAP mask again, I think that is a large part of the reason he is sleeping wild and getting on the feeding tube line, we'll see.

Elizabeth did good today. She slept the whole way home and doesn't remember a thing. When I got her home I fed her soup, gave her some medicine, and put her on the couch. At 4:30pm she woke up and said she felt like it was 10:00am. She ate a little supper, but has been sick at her stomach. She has Art class tomorrow and it is her last one before their end of the year show, I hope she feels well enough to go. She'll be so disappointed if she can't.

I think it's time I take Wesley back to the doctor again. He can't keep going on like this. The diapers I can handle, it's the rash and blisters that bother me. It's pure torture to change him, then you can't hold him afterwards, it hurts to put pressure on his bottom. Wesley is also cutting teeth and pulling at his ear again. If, it's his ear it will be the 4th time in 5 weeks. Guess we'll just have to make an appointment for tomorrow.

As it stands for this week Jonathan has been to 2 doctors,1 hospital, Elizabeth the oral surgeon, Rebekah and Amanda went to the orthodontist. We still have 2 more days to pack a few more appointments in...just kidding! Really, I'm not sure I'd know how to function without medical appointments, I'm open to new things,I think it would be nice, I may even like it...sigh....one day! For now this is the my life, I thank God for it and feel blessed beyond measure!!!!

3 comments:

rigman0221 said...

You put me to shame woman! Bless your heart and your family. I just love you guys.

Give Jonathan a hug from me and tell all I said hello. :)

Tammy

Nancy said...

"Freedom, Healing for Parents of Disabled Children" a wonderful resource for parents of children with special needs, is now available through the Olive Leaf Ministries. As the parent of an Autistic and deaf child, Nancy Douglas has brilliantly written her account of what life with a disabled child is truly like. Written especially for and in honor of these parents, "Freedom" brings the much-needed hope of Christ to those amidst great grief, pain, and sadness.

Read an excerpt from "Freedom" by visiting: www.oliveleafministries.com

Blessings,
Olive Leaf Ministries

The Journey Begins Here said...

Wow Laura,
Do you drink lots of coffee? How do you function? I am miserable when I am tired.

I will be praying for you and all your little/and big children. I hope you get some sleep.

I know that this is nothing compared to what some people go through but I can't even imagine having more than two sick at a time.

Thanks for all of your comments. One of these days we will have to get all of us together...Mimi, Renee, Peggy and the bloggers, on a big KLove cruise or something. I'd just love that.

Take care on this glorious Sunday. And never think that all you can provide is prayer. Prayer is the most important thing we can do. Fundraising, well that's the easy part!

Love you, Theresa