Dr. Higgins (GI) suggested that we rapidly increase the rate of the feeding tube. We have been inching our way so far, only increasing by 1 cc./day. He wants to start increasing by 10-15/day. We have been at 30 all day today. (yesterday we were on 21) They will continue this provided that his digestive tract can accommodate each amount without problems. We also have a BIG praise to report!! The little skinny portion of his sm. intestine that was constricted is now NORMAL!!! So...right now they are concluding that the sm. intestines are normal size and healthy, except they just work very, very slow. The sluggishness (hopefully) will be corrected by those large increases in rate of the feeding tube.
Dr. Goldthorn (surgeon) explained that in Caed's case the "volvulus" is a rare kind because part of his stomach was also twisted up with the bowels. The pyloric value (between stomach and sm. intestine) may have been affected. (this could be the cause of the frequent throwing up) This value is not releasing into the sm. intestine as it should, therefore whatever he takes by mouth never gets into the intestine and eventually he throws it up. There is a surgical procedure which enlarges this value, but the drs. want to use this as a last resort. However, if the increase in formula from feeding tube doesn't work, this will probably be necessary. They should know something by Sunday. Dr. G also said that if we do have to head back to surgery, it would be carefully thought out and planned, much less traumatic (unlike his 1st one). All the doctors agree that the anxiety from all he has been through is definitely getting worse and he needs to go home ASAP!! The infection Caed has is contained in his broviac tube (chest catheter), and they are confident it can be corrected with antibiotics.
So far Caed has handled the feeding tube increase well. (he still threw up several times today, but it was never the formula). However, GI dr. said we may not fully see the effect for 12+ hours. Please pray that tonight and tomorrow go well for Caed. We dread so much if it doesn't. It will be a very miserable couple of days for him.
We have also decided to let Reagan fly back to Celina with her Daddy next week. (Tues. - Thurs) She is very excited!! We know it will do her a lot of good to be back in her room and see all her friends!! (even for just a short time)
We wanted to say a special THANK YOU to all of you who have been sending Caed (and Reagan & Caleb) gifts!! Miss JoJo and all the Cubbies, I have been saving your special box for just the right time. What a cute idea you had with all the puzzle pieces! This week wasn't very good for Caed, and I wanted to wait until he could really enjoy it. (hopefully that will be REAL soon!) I couldn't possibly thank everyone else by name, but please know you have most definitely put big smiles on their faces. They get so excited when we bring in a new package from the mail. They have all been just the perfect gifts! Also, thank you to everyone who is supporting Todd and I through this. (airplane vouchers, gift cards, etc...) We are seeing THE LORD provide for our every need through you all!!! Thank you for being His vessel! We have truly been humbled and overwhelmed by your generosity.
Please continue to pray for this weekend. Future procedures (surgery) will depend how things go. Sarah B. sent me these verses this morning and it is so fitting:
Have mercy on (us) , O God, have mercy on (us), for in you (our) soul takes refuge. (We) will take refuge in the shadow of your wings until the disaster has passed. (We) cry out to God Most High, to God who fulfills his purpose for (us).
Psalm 57: 1-2
Sometimes Caed gets SO tickled he's almost crying.
This was one of those times. (laughing at
Daddy throwing Batman against the wall)
He wanted to mix all 3 Power Ade flavors together!
Being "left alone" for a short moment
5 comments:
praying for your precious family... may the Lord give you rest and pour his renewing spirit into each of you this weekend! much love to all of you!
Hi Lori:
I have been praying so much for a release for Caed. What an answer for him and to our prayers.
My heart jumped when you spoke of the pyloric valve may not be open. This happened to our Matthew @ 5 l/2 weeks old. The surgeon told us this often happens in first born males. I had mentioned this to Todd a couple of weeks ago but didn't think it applied to Caed.
It was just an experience we went through with Matt as a baby. Even though the doctors suspenioned it initially, it took about a week of trying different things to acknowledge the diagnois. Matt was a big, thick and large boned baby. They could not exactly be sure what they felt under the ribcage was the closed valve. He drank the barium in a baby bottle to find the blockage. As I stood beside the radiologist watching the x-rays during the procedure, it was very evident there was a block and showed exactly where it stopped. They immediately admitted him to the hospital and was in surgery by 10:30 pm.
After the fact, I learned the seriousness in the function of that valve. Nothing would stay down and waiting too long, along with projectial vomiting, at that age, could cause dehydration. The surgeon at the time was not happy it took them so long to diagnois it but God was truly faithful in watching over Matt.
As it turns out, Matt is our gentle giant and survivor. God had already destined him for a greater work and for his purpose. Even more so, it was destined for Matt (or me) to pray through for Caed during this time. What an awesome God we serve! God is a good God and will confirm his word!
I praise God for doctors with discernment of medical issues and Godly wisdom. I was excited to hear their decision that Caed needed to go home. Hallejuah!
Oh Lord you are a supernatural God. We lift up our hands of faith in praise before you! Amen!
Praising you Lord @ 2:00 am.
God our Father, we thank you for your presence in Caed's life. We thank you for your healing power.
You are going to create great and mighty things in this hour.
As the song goes, "You are the potter and we are the clay. Mold us, make us and have your way. You are our creator! We surrender! All we need is for you to have your way!! You are God! Our soul longs for you. Nothing else will do! Call out your reign! You make all things new! Hallelujah! Let it reign!!!
I'll set a seal upon my heart! My heart is yours. Oh, consuming fire, you're our heart's desire, come baptize us!"
Another song goes, "God touch us, keep us, cause your face to shine on me, Lord be gracious, in the light of your countenance, give us peace. For we live only to see your face, so shine on me!"
The Lord is faithful to show His signs and wonders. Lord, move by your spirit.
Lord, you bore our sicknesses, carried our diseases and by your stripes we are healed. Touch and heal Caed's body. Thank you God for your victory. Thank you God for your deliverance! Amen!
hey todd, lori, and caed
it is addie. emily, and maddi checking in at 3am
addie: caed i luv u so much and want you to come home VERY soon. i pray that the throwing up decreases and the increase in the feeding tube works. i am so excited to see reagan and pray for their safe trip back home. luv u guys addie
emily: hey guys. u may not know me very well, but i go to the church group on wednesday very often. My name is Emily Jowers. Ever since Addie told me about Caed's condition, I havent been able to stop praying for your family. Seeing how strong Todd and Lori are only inspires me to be just like them,,,,,,,,,,
i love u guys verrrrryyyyyy much!!!
~Emily~
heyy this is maddi!!! i have been praying for you guys. I have been praying for and will continue to pray for you guys: Pray that caed will stop throwing up,increase in the feeding tube,that Reagan and Todd come home safe, that the doctors are in God's hands, and that Caed comes HOME VERYYY SOON!!!
Lovee you guys ,
maddi :]
caed we are with you in prayer tonight. we luv u so so so much
addie, emily, and maddi
Lori-
I feel like God must be working the same in both our minds and hearts....I read the blog from Thursday and was just amazed at what you said. You have been on my mind so much the last few days...not just about Caed, but about your spirit and the things you must be feeling. As I was doing the never-ending laundry this week and dishes and cleaning the house and running all the errands, I felt tired and started to get frustrated and then all of a sudden, I just started crying (call it pregnancy hormones or God's hand working on me...?)but, I was not crying for me, because I was tired of doing all that. I was crying for you, and how you would give anything for your life to go back to normal...to do all the laundry and dishes and errands and all that daily stuff that is so normal! I have been overwhelmed with that for the last few days and it has really made an impact. Every load of laundry I do, I praise God..every dish I have to wash, I praise God...every little normal everyday thing I have to do...I am praising God that I am able to do it and my precious family is home and we are able to be that...a normal, everyday, "boring" family. My prayer is that all this will be over soon and your life can return to just that...normal & boring! Your family may have been chosen for this certain path, but in so many ways, God is also using this and your family to touch us (& so many others). I don't think you all are the only ones God is trying to teach through all this.
You know how much we love you and we are praying for you (& your "normal" family) every day!
Love,
Leann
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