Reincarnated As A Mother

Tuesday, August 7, 2012

Rough Waters

I had a not so brave day.
Let me start with my idea to try and take a picture of him each day-- I've decided it's not such a good one.
He looks miserable in every picture I take.
Poor little guy.

I thought today was going to be an easy one.
Kean had two appointments.  First, he had to get his blood drawn.
That was a fiasco.  The poor nurses at MSTI couldn't get his veins to cooperate.
Let's just say the Voodoo Doll made quite a scene-- to the point I felt sorry for the three nurses they had in there.
But once again, we survived. 
I took this video of him as we waited for our second appointment.

This next appointment was with the doctor who is supposed to put the port in his chest during surgery on Thursday.
She was very kind but I left there in near tears (I waited until I got to the safety of my car).
In short, she said she'd have to put the port on his right side-- a less preferable side.  She is quite concerned
about the clot (still discolored and swollen) on the left side and said he is "moderately at risk for clotting on his right side, which could be dangerous"... and cause all kinds of problems.  They'd then have to remove the port
and put it in his groin which is problematic in that he is in diapers and there is a high risk for infection.  But she said we needed to get it in for Chemo so "we are between a rock and a hard place".
Blah, blah, blah.  It was all negative.
And all I could think was why can't we just deal with Leukemia and Chemo and all of the horrible side effects
that come with that-- instead of all of these other problems.  It just seems never ending.
I had a good cry fest and dumped on Byron-- I just want to wake up from this nightmare but instead it keeps going on and on and on.
On the bright side, the doctor did let me take Kean home instead of waiting (and wrestling him) while she conferred
with his Cancer doctors. 
Things got much better this afternoon. She called to say they are postponing his port surgery until next week to allow his clot to hopefully get better.  They will go ahead and do the chemo through his Spinal Tap on Thursday and they will go forward with the bone marrow draw.  So Thursday will still be a big day-- but a lot of the dread has been taken away.
I think the Lord must've figured I was near breaking point today because I got a pass from giving Kean his shot in his belly tonight... something I dread beyond words.
One of his nurses, Amy came by the house tonight to buy blackberries.  She was running late and got here just in time to give me the break I needed.  I'm sure it sounds silly but trust me, her giving Kean his shot tonight was nearly as good as a day on the beach in Hawaii.  I'm not kidding.


coosmom said...

Bless your heart - I so feel for you ! I wish I could be helpful - but love and prayers are your daily !!!

CarolF said...

Yep, giving Kean a shot sounds awful...on top of everything. That's just craziness. Shouldn't someone else do it every day? I cannot imagine the mom having to do that!

emily sessions said...

I could tell you were frazeled when I talked to you tonight. Now I know why. Please Lonni know that you can give me a call at a moments notice to take your girls or help out in any way. Prayers for you and Super Kean!

Pam Beeler said...

Wishing there was something I could do to make it all go away ... but, you are, of course, in my daily prayers. Hang in there, sweet lady.

karen said...

oh, darling Lonni. I can't tell you how sad I feel for all these compounding issues that are weighty indeed. His suffering (and yours) just breaks my heart.

Hope of a better day tomorrow, and the small mercy of you not having to give the shot today. The Lord knows. He knows. Love you.

Darlene said...

I'm sooo sorry about all the setbacks and problems. I KNOW how frustrating it is. I've gone through all the port problems, central line issues and clots. You remain in our prayers. It's TOUGH Lonni. Watching your children suffer and having to do all these procedures of shots and bandage changes on central lines is grueling. I could relate when you were talking about having to give Kean shots. I was one of those people who couldn't stand to see a needle go in anyone, including myself and I was suppose to GiVE the IV shots to my kids? It was HARD. But I did it because I had to. You will rise to the occasion. Some of this stuff will get a little easier as you get the routine down. Hang in there. I prayed to Heavenly Father that I was doing ALL I could and that He would have to pick up the slack and ease my burdens. In looking back...I think He did.

Chris said...

Oh, honey. I wish I could just give you a hug. xoxo

Christy said...

This is Christy, Mitch and Elizabeth's niece, if you will meaasure from Kean's chin to lap while sitting and from shoulder to shoulder and tell me what size t-shirt, not button up you buy him, I will make you some bibs and ship them out to you by Monday...let me know. littlefamily1997@msn[dot]com