Friday, June 6, 2008

Screaming baby, Weary mommy

Well, we did end up coming home yesterday evening, and though I am thrilled to be back in my own environment, it has been a rough 20 hours. Ethan has been extremely fussy and he doesn't have much of an appetite. From the day he was born, he has never been a really fussy baby. He generally cries when he's hungry, has trapped gas, or fighting sleep. Generally easy to console one way or another. That is not the case as of late which indicates to me that something is wrong. But, it's trying to pinpoint WHAT is wrong that's causing my headache right now. I expect he's in some sort of pain, though there are no visible signs of problems in his mouth or on his bottom. The side effects from chemo can be delayed a couple of days and since the chemo stopped around 3:00 yesterday afternoon, we may be hitting the brink of some side effects surfacing. The tricky thing is that the potential side effects from one of the chemo meds he got this time is nerve pain and jaw pain. How in the world do you know if your baby is experiencing that kind of pain? Exactly.... it's a guessing game. I've also been wondering if he's teething. He keeps chewing on his fingers and bites down on teething rings, but with all that's going on with him, it's too hard to tell one way or another. The only thing that seems to calm him for a short while is Tylenol. However, I don't really want to have to give him Tylenol around the clock every 4 hours because that will mask a fever that we need to be watching for any time we are at home from the hospital as that is really our only warning sign that an infection has set in regarding his cancer treatments.

So... needless to say, things are hard for us right now. Please be in prayer that Ethan will start to eat again and that we can better understand why he screams and cries so often. Pray that if the pain is a result of a chemo side effect that it will disappear quickly and if he's growing a tooth, that it will just pop right out!

I talked to the Boston Children's contact this morning. No news yet on the donor situation, but they have been in contact with several people to have further testing conducted. He thinks we should have more information next Friday.

I'd write more, but I'm thoroughly exhausted... Happy to be home, but in desperate need of the Lord's assistance right now with Ethan.

13 comments:

Anonymous said...

Praying.

Linsey said...

Try the baby orajel if you are allow for teething. That might help. Will be praying! It is hard being a mommy sometime. Hang in there!

Marge said...

Praying for you both

Anonymous said...

Oh Kasey--my heart hurts for you right now. Just wanted you to know we continue to pray for you all. A crying baby can be wearisome for mommy, especially when you don't know the cause. We are praying that this subsides soon and that you can get a decent night's sleep tonight! It's a good thing, though, that the Lord is on duty 24/7!! We love you all! Molly

Anonymous said...

Hi Kasey,
Sorry it has been so long since I have written, we have been so busy on the road....but never to busy to pray for Ethan!!! I am simply praying for a miracle...the Lord gives us mircales everyday....I hope Ethan is over his fussyness and that it is just a tooth coming in...Much love to you, you are such a strong woman...I admire you! Love Uncle Mike and Kathy

Megan said...

We are with you and in prayer for you all. If he is teething there is a couple of things to try that worked for us. Cold wash cloth to chew on, teething tablets which does not contain medicine so you can give it to him often. Not sure how they work but they do work for my little one. I also give her a fruit popsicle or an ice cube to suck on with my assistance. I hope it is teething since there are things that can be done to help with the pain. We will be in prayer for you guys. I hope you both get a good nap in today. Lots of hugs your way.
Love,
Megan

Anonymous said...

my "mommy" sympothy goes out to you today. it is frustrating when you know something is wrong and you can't pin point it. i do know to trust the mommy instincts that God gives you. i have a personnal testimony with that one that i'll share with you at a later time. we will continue to pray. Hang in there. know that we a praying!
michelle

April R said...

It sure sounds like he's teething! That is the only time my sweet, calm baby screams and fusses. I used a little baby wash cloth and wrung it out in water, then froze it flat in the freezer on a plate. That way they can hold it themselves and it melts quickly so it won't be too cold on their hands or gums. I hope to see a new pic of his first tooth really soon!

Hollie said...

On my knees praying for you all!!

Anonymous said...

Praying for all your needs right now. Hang in there. Your not only dealing with chemo side effects but also everyday baby issues. It will get better.
Praying that you have a peaceful evening and new day tomorrow.
Sharan

Kara VanDyne said...

Praying for you!

Anonymous said...

Not a day goes by that we are not praying for you. We pray for all 3 of you, but especially Ethan. We pray that God will give us all a miracle and heal him.

Love,

Auntie Joann

carleigh said...

makenzie got her first tooth at 5 months, and she did have a decreased appetite and excessive fussiness. like the others have said, try either orajel or teething tablets ( at walmart they are located in the vitamin section instead of the baby section!!) we love you and know that you are a great mommy!!