Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


Wednesday, June 20, 2007

Update

Well a lot has been going on and it has been tough to update due to late nights at the hospital and the network at the hotel not working. So on with the updates.

Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.

Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.

He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.

There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.

So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.

There have been many things that have occurred that I have left out but I am trying to remember as much as I can.

We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.

Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.

Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.

God Bless Caleb!!

10 comments:

skeybunny said...

Sarah,

We think of your family often. Caleb is in my thoughts and prayers--keep taking each day as it comes.

Hugs,
Sarah (mom to Evan)

Anonymous said...

Hi Sarah,
I am a Mighty Max fan and have been following Caleb's journey as well. My heart goes out to you and your family. Your paragraph of wishing that Brian (my husband's name also) was with you, brought tears to my eyes. You are an amazing woman and I continue to pray for God's strength as you face each hour, day, and months ahead. God bless! Chantel

chris said...

Hi Sarah-
How nice that you had visits from Larry Kline and Jo and Rick - I'm sure it is uplifting to all of you to see familiar faces when you feel so far away. I continue to marvel at your strength and positive attitude when I know how difficult so many of your days are. You all remain in my daily thoughts and prayers. I was so glad to hear you say Caleb giggled at you today - I love to hear his giggle in the videos that have been posted!!
Much love to all of you-
Chris

Aunt Jen said...

What music it must have been to hear your beautiful boy's beautiful giggle again!!! I can only imagine how your heart must have soared when you saw his beautiful smile!! Thanks for taking the time to update! I can only imagine what your days must be like! We love you all so much. You and Brian are making such tremendous sacrifices for your boy, but what else would amazing parents like you do?? I wish we could figure out a way to get you all together again too!!! We will keep praying for Caleb's health...and playing the lottery!! I am so glad you got to see some familiar faces as well. I would love to be able to give you a hug right now, but just know I am sending it from afar. We love you all so much. Kisses to Bubber and have your mom give you a big squeeze for us (and then squeeze her back)! We love you, miss you, and are so amazed by you all. As much as you are proud of Bubber (and we are too) we are SOOOO PROUD of you and Brian and your family for the way you have, and continue to handle everything. God Bless you and God Bless Caleb!!

Love-
Aunt Jen, Uncle Andy, and Haleigh

Eva Nichole said...

We are always thinking about you. Everyone who sees Eva's site asks me all the time, "How is Caleb?" He is loved by many and we are always thinking about him.
God bless,
Crystal and Eva

mighty max and mommy amy said...

I check your site several times a day and have been very concerned. Thank you for taking the time to update...I know that is difficult to do with so much going on.

We are thinking about you a lot and keeping you close in our prayers. One minute at a time, one day at a time...

Amy and Max

Linden said...

Sarah,

I was so glad to see your update on Caleb. Your family remains in our prayers. We did not as many medical worries with Cameron, so I don't know exactly what you're going through, but as a mother, my heart is with you.
Take care,
Rebecca
Mom to Cameron,5, CHaRGE) and Nathan, 7

Becky said...

Hi Sarah,
Thank you for the update. Happy to hear of the good news in your post about his lungs and response to you. What a fighter your little guy is!! It's times like this I wish I were Donald Trump or someone like that, where I could arrange Brian to be with you permanently in NC while Caleb has to be there.
All our love and prayers for you guys,
Becky and Bobby D.

CorrieYoung said...

Hi Sarah,

What wonderful news about Caleb's lungs and laughter!! I know that laugh was music to your ears!

My heart just aches for you and Brian. I know you both are being SO strong and this is beyond words hard. Days with your child in the PICU are the toughest and I can't imagine how hard it is to "go it alone" for each of you.

We feel so helpless so far away but I firmly believe the most important thing we can do is to pray for all of you. What you've been doing requires superhuman strength and there's only one way to get that!!

Give Caleb a kiss from his MO adorers and tell him that he has Sugar Ray Tate(and CO) in his corner for his next "round".

Take care of yourself Sarah...

Love,
Corrie

Anonymous said...

Sarah, Brian & Caleb,
Thanks for the update! Glad to know Caleb's lungs are getting better. We are so proud of you all for your courage, strength and ability to keep a positive attitude in spite of everything. You are amazing! Please know our love and prayers are with you contsantly.
"God may not always give us answers, but He always gives us grace."
Robbie, Drew & O