Saturday...

Submitted by Colleen and Derrick on Sat, 10/17/2009 - 1:12pm.

What a difference a week makes... Last Saturday they were telling us they weren't sure they could pull Devin through this and if they did... he probably would need to be re-transplanted because of.... the amount of medication it was taking to sustain his blood pressure, the difficulty they were having oxygenating him, and his poor pulses... all of which would play a part in the perfusion to his transplanted intestines.

As the doctors came in last Saturday morning only one phrase that they said stuck in my head... WE NEED TO SAVE DEVIN, WE WILL WORRY ABOUT THE TRANSPLANT ORGAN LATER... AND IF NEED BE RE-TRANSPLANT.... how could all this be happening? A parents worst nightmare unfolding before our very eyes.... and to make matters worse a PICU nurse and Doctor. We work on saving peoples kids... how, now could this be happening, how could we be the one standing outside the doors... how could we stand by and do nothing to help him... we stood for the 24 hours listening to them call out for things and drugs that were all to familiar to us... How could we not be in their hands on making sure everything was being done we had no CONTROL......

Here we are a week later and MANY small steps forward, and by the grace of God not to many backward. Devin had a great night... Vital sign wise he is very stable... little by little he is having lines removed... slow and steady.. Today they will allow him to eat regular food by mouth along with formula via his feeding tube.

I can not ask why... their will never be an answer.. I can only Thank God that Devin was given one more opportunity to live life to the fullest!!!!

Friday Night...

Submitted by Colleen and Derrick on Fri, 10/16/2009 - 8:34pm.

Devin had a GREAT DAY... He looks very comfortable breathing on his own. He is requiring oxygen support, but doesn't seem to be in any distress. They were able to take out his foley catheter and he is peeing great on his own.. NO! help of drugs. He is back on his tube feedings tonight and they will slowly increase them as tolerated. He has had some water by mouth today..

He is so Amazing... he wanted to try and walk today so he can feel better.
Unfortunately he has a central line in his left leg and an arterial line in the right leg. Not to mention he has been heavily sedated for the last week.. God Bless This Kid...

One Week....

Submitted by Colleen and Derrick on Fri, 10/16/2009 - 11:18am.

One week... One HUGE mountain... One Amazing kid.... Well I am hoping and praying that lat night Devin reached the top of the mountain and we are now on the other side..

***This morning they were able to take Devin off the ventilator. He is breathing comfortably on his own with some Oxygen support. His chest
x-ray does not look great and he does have some pleural effusions (fluid on the lungs)... but they were able to wean the vent successfully... so they decided to push forward...

He is awake, alert, and weak... It is so good to hear his little weak voice.. We were a little concerned about his perfusion to his brain last weekend.. But thank the lord he seems to be just as bossy as ever. Cover me, rub my legs, put chapstick on me... and of course we are thrilled to do it.

This journey is not over... Devin's lungs and kidneys took a hard hit... and we need to get the bowel back to where we were... He is very weak and frail at this point...

ONE STEP AT A TIME... ONE DAY AT A TIME....

Thank you all for all your love, support, and prayers!!! It has been a very hard week....

Thursday Night...

Submitted by Colleen and Derrick on Thu, 10/15/2009 - 6:49pm.

Progress!!!! Devin is peeing very well today, with the help of medications. But we will take it, considering yesterday the medications weren't working. This hopefully will help his lungs. They were able to wean some of his ventilator settings and decrease some of the pressure he was on. His blood gases look okay so far.

Keeping Praying!!!!

Thursday...

Submitted by Colleen and Derrick on Thu, 10/15/2009 - 11:48am.

Not a lot to say.. Bumex is working slightly better then Lasix.. Kidney numbers don't look any better. Chest x-ray remains unchanged..

Thanks for the prayers and support!!!!

Wednesday Night..

Submitted by Colleen and Derrick on Wed, 10/14/2009 - 9:25pm.

Nobody said it was going to be easy to pull through this... Devin's not really peeing enough. Today they took him off Lasix and started Bumex with the hope that the response would be better and he would pee... Time will tell!! Unfortunately his lungs will not improve unless his kidneys improve. He is 10 pounds heavier do to the fluid accumulation in his body.

Today was a rainy grey day here in DC... it does wonders for the mood!! Why, why oh why... does he have to go through all this... why,does he never catch a break.. why, must he suffer.. He is only 5 almost 6 and he has dealt with more illness then some 90 year olds. He was so excited to give out his birthday invites last Thursday. We were in the planning mode.. The list of what he wanted for his birthday was as long as your leg.. How can it be.. he was finally going to be able to eat and enjoy cake for the first time in his life... He was going to be just like every other boy and girl their... and here we are on this grey miserable October day watching him fight to recover... Why???

Wednesday...

Submitted by Colleen and Derrick on Wed, 10/14/2009 - 9:31am.

Devin had a good night. His chest x-ray does not look any better and the fluid they took off yesterday is back... They might have to reinsert the chest tube today. His liver number have improved considerably. But his kidney function remains poor. He is tolerating his feed. Today they will go up on the calories instead of the volume. We do not have much wiggle room with fluid volume. He is not peeing great and it is all settling in his lung which is making his respiratory status worse.. He is still requiring a lot of ventilator support. As you can see over the last few days it is a balancing act.. and it is not always easy to manage. As long as we continue to take small steps in the right direction we will be thankful.

Tuesday Night...

Submitted by Colleen and Derrick on Tue, 10/13/2009 - 8:29pm.

Devin had a good day today.. Slow and Steady!!!! As sick as he is, today is the first day he is actually fighting to be awake. This is leading us to believe his liver must be doing better... because he is on the same amount of sedation, but finally responding. We will see when his morning labs are done. He is still on a lasix drip but he is responding well. He is tolerating his feeds very nicely and has pooped again! I am hoping this is a good indication that his bowel did not take tooo much of a hit. His chest tube is out.. thanks to the man taking the x-ray. We will see what the morning x-ray shows... but his blood gases look better.

Tonight my heart is heavy... and I have a favor to ask of all of you.. When we first came to Georgetown we met a little boy named Thomas. Thomas too was waiting for a transplant. Tina (Thomas's mom) and I have walked this journey together. Thomas and Tina truly hold a special place in our hearts. After transplant Devin got out of the bed to walk with 36 staples and 2 drains because he believed Thomas "NEEDED" to see him. Well, tonight our dear little friend Thomas was diagnosed with cancer. Although I am here with Tina I feel so helpless. At this point all I can do is ask for you to include Thomas in your prayers. May Thomas and Devin continue to FIGHT!! May God watch over Thomas and give Tina strength as Thomas starts chemo tomorrow.

Thanks again for all your love, support, and prayers!!!!