Always

Sometimes, I sit here in shock when I realize what my days so often consist of now.  I--quite naively--thought I would never be thinking about these things. Deciding how to handle the possibility of a one month hospital stay. Moving things that belong in a bathroom (like towels) to the side to make room for the growing collection of medical supplies. Scheduling life around appointments, medicine, enemas, feedings...And I know the fight could be much harder, much scarier...there are mamas everywhere who have become nurses to their children. And I don't doubt for a second that at some point each one of them steps back and says to themselves, "wow...how did we get here?"

Warning-- this part isn't for the weak of stomach...you might want to skip ahead. But it is our reality, so I thought it would be okay to include. This week we are dealing with a severe rash and blistering on B's skin.  This child's bowel movement literally burnt his skin everywhere it touched.  It wasn't immediate, but over the course of the day, more and more blisters came up.  The pediatrician was truly impressed...not your everyday diaper rash. Everyone's comment was, "wow if this is what the outside looks like, can you imagine what the inside might look like?" The doctor believes his stool was just so acidic that it burnt him. The cloth diapers help keep it from getting to the point that it has in the past because we are not putting the chemicals of disposable diapers up against his injured skin.

You see, the problem is that he has decided he is no longer interested in his ex-lax squares, also known as "Choca." So we replaced the ex-lax squares with liquid senna (the same active ingredient). However, there is something in this liquid that his little body cannot tolerate and it burns his skin.  So the big conundrum is~  What do you do when you cannot tolerate the very medicine that you are medically dependent upon?  We have some ideas and things to try. And we hope every day that he will decide just to eat his choca.  Please be praying that we can get this figured out.

I want to share the lyrics from a song with you. It is called Always by Kristian Stanfill:

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always

So thankful that my help comes from the Lord- the maker of heaven and earth.  The one who made the moon and the stars cares more about my children than I could ever imagine.  He loves us dearly and provides for us no matter what the battle, and He is here to fight for us.  So we needn't live in fear of the fight, of the storm.  We have HIM.

Thank you for your prayers for our family as we have several big things coming up.  Please pray that his testing on his colon in April will be helpful.  We also ask for prayer in trying to learn what would be best for Beckett in regard to the inpatient hospital stay at Our Children's House.  We are blessed by our praying friends.  Thank you for your patience, love, and grace that you extend to our family.  We are thankful.

 

 

A Lot To Think About

Beckett had two appointments in Dallas this last week....one on Monday and one on Friday because of course I cannot seem to get them on consecutive days!

On Monday, we saw the GI doctor. She is overall not as impressed with the feeding tube as she would like to be. She does not think the extra hydration going through the tube is quite enough to help the little guy. So, she has ordered scopes and a colonic manometry to be done.  He will be admitted to Children's for 3 days for this testing.  The endoscopy and colonoscopy will allow her to see inflammation, etc on the inside, and she will also be able to take biopsies to check for certain food intolerances and other conditions. During the colonoscopy, the doctor will place a colon catheter for the manometry.  The manometry will show us how his colon moves and can help us see if there is a certain part of his colon that doesn't move.  For the monometry, he will have to lay in his hospital bed for 6 hours.  He is not under general anesthesia for this, so this should be interesting.

If his monometry is normal, the doctor thinks something called a cecostomy would be a good possibility for him.  A cecostomy would be a little button placed at his cecum so that we could access his colon that way to flush him out.  Basically, it is a way to give him an enema from the top down rather than from the bottom up and back down. 

We are waiting on the hospital to call to schedule the inpatient testing.  We will then go from there depending on what the scopes and manometry show.

On Friday, we went to a feeding evaluation at Our Children's House at Baylor in Dallas--referred by the GI.  He was assessed by a speech language pathologist, occupational therapist, behavioral psychologist, and nutritionist.  They are recommending that Beckett be admitted to Our Children's House for a month in order to get on a feeding plan that his body can tolerate. This came as quite a surprise to me, but they think the intensive individual treatment with medical oversight will benefit him greatly. They want to watch his in's and out's and how his body reacts to the food with a goal of finding high calorie foods that his digestive system can handle.  They will also use some behavior modification strategies to change the way meal times work.  I cannot exactly picture what it would be like to spend a month in a hospital. But I do know that poeple figure it out all the time. 

As you can imagine, this is all a lot to take in and think about it.  Just a day at a time right now, and we will see what happens.  It is hard not to be anxious- but I know we will be okay.  Thank you for praying as we try to figure out what needs to happen next and the best way to handle it for our family.