Tuesday..

Submitted by Colleen and Derrick on Tue, 10/13/2009 - 11:04am.

Devin had a fairly stable night. This morning they placed a chest tube to help drain some of the fluid off his lung. His chest x-ray still does not look good, but hopefully taking some of the fluid out will help things along and allow them to wean some of the ventilator support. When they places the chest tube they got 250 cc out. We are now up to about 300cc.

Feeding.... his feedings are going well. They were able to advance his feeds to 30cc an hour.... OK... now for the BIG news!!! He POOPED!!!!!!!!

KEEP PRAYING!!!!!!!!!!!!!!!!!!!

Monday Evening...

Submitted by Colleen and Derrick on Mon, 10/12/2009 - 5:34pm.

We've had a good day today... Although Devin remains on a lot of ventilator support and his lungs remain very sick. We did make some progress today. He is currently off Dopamine and maintaining his blood pressure very nicely on his own. He is responding very nicely to his Lasix, which hopefully in turn will help pull some of the fluid of his lungs.

Now for the BIGGEST step.... We started to feed him via his feeding tube. He is on Elecare 15 calories at 20 cc an hour. Lets pray his intestines work!!!

The transplant surgeon came to see us today.. although I did not wanna hear what he had to say... it is the reality of transplant. Bowel transplants are by far the most difficult. You count on your transplanted organ to absorb the anti-rejection meds. Therefore if the bowel is working good your levels might be normal to high.... then if for whatever reason it is not working so great... your levels are to low... then you run the risk of rejection complication. This is a balance and an extremely fine line. To put in prospective he said... if you get a Liver, Heart, Kidney, or Lungs... you have your own intestines to regulate how these drugs are absorbed, therefore levels are much more stable.
SO... you wanna suppress his immune system enough to keep his organ healthy and free from rejection... but NOT too suppressed so he get this sick.. Thank God!!! they are the expert that will handle this balance. For now he said we need to focus on Devin's lungs!
Then I guess we will cross this balance bridge!!

Monday...

Submitted by Colleen and Derrick on Mon, 10/12/2009 - 8:50am.

Devin had a relatively stable night. His chest x-ray looks worse today. So the plan for the day is to stay exactly where we are with everything and just give his body a chance to recover. Between the flu and the septic shock each and every organ has been effected. Under normal circumstances our immune systems would be in over drive to help preserve everything and make us better. Devin doesn't have that, so of course this just complicates things even more. They can not let his own immune system kick in because then he will reject the transplanted organ. It's all a balance.

God willing we will have a quiet day!!

One day at a time.... One step at a time...

I will except the tiniest steps forward just to have Devin pull through this.

Sunday Night...

Submitted by Colleen and Derrick on Sun, 10/11/2009 - 9:07pm.

Today, Devin's been having some heart arrythmia's. So tomorrow he will have a full cardiac work up.. This can be a couple of different things... the fact that he is so sick, some meds he is on, or the anti-rejection meds. Unfortunately only time will tell. The story of this journey!!!
He has some skin breakdown on his back. So tomorrow they will be getting him a special bed to help and prevent further breakdown. Everything else is about the same.

Again Thanks for the prayers and support!!

Sunday...

Submitted by Colleen and Derrick on Sun, 10/11/2009 - 12:53pm.

We had a stable night. Unfortunately we have not taken to many steps forward, but we have not taken any back. Devin's lungs do not look good on x-ray, therefore they have not been able to make any changes on the ventilator setting. This is something that will take time and probably will happen in LITTLE... SLOW... steps. His blood pressure is slightly more stable. He remains on Dopamine and Milrinone. Dopamine to help his blood pressure and Milrinone to help his cardiac output. He is retaining fluid, so they have started a Lasix drip. His Liver and Kidney numbers look slightly better.

Slow and Steady... not much more we can hope for. This journey will be a long one. As all of you have read in the paper and heard on the news, the flu and pneumonia hits people with normal immune systems very hard. So you can all imagine what it has done to a little 5 year old with a suppressed immune system.

Keep Praying!!!

Thanks again for all the support!!!

Update...

Submitted by Colleen and Derrick on Sat, 10/10/2009 - 3:27pm.

Add the flu... just to complicate things even more..

But this does explain how he got so sick so fast... Flu plus pneumococcal pneumonia... Not a good combination for a healthy kid, never mind a kid that is immune compromised.

Update...

Submitted by Colleen and Derrick on Sat, 10/10/2009 - 1:13pm.

They did a bronchoscopy and they believe Devin has pneumococcal pneumonia... Of course this will be confirmed with the junk they took out of his lungs and sent to the lab. This would help us to understand how he got so sick so fast.

They have been able to wean him off Levophed, which was one of the drugs for his blood pressure. So far he is tolerating this wean. They were also able to wean his Dopamine a little (another blood pressure med) He seems to be a little more stable this afternoon. His fever has broken also.

Thank You All for your prayers, kind words, and support..

Keep the prayers coming!!

My Only Words...

Submitted by Colleen and Derrick on Sat, 10/10/2009 - 7:56am.

Keep fighting Devin... We all love you...

They are trying so hard to maintain his blood pressure.. Unfortunately those drugs run the risk of killing his new intestines, do to poor blood supply.. The Dr told us this morning.... we have moved away from trying to save the transplanted intestine... we have to save Devin!!

PLEASE PRAY!!!!!!

It All Began On An Ordinary Thursday....

Submitted by Colleen and Derrick on Sat, 10/10/2009 - 12:03am.

Thursday started out as an ordinary day for Devin. He was up by 6:45 waiting patiently to get on the bus. He was so excited, he was handing out his birthday invitation. At 2:45 he got off the bus with his new friend Gianna and reminded her... don't forget to come to my baseball game.. as i put him in the car he gave a yell to his friend Timmy... Timmy wanna play baseball later... Off to Raymond's baseball game we went.. He was full of life and energy. He did his homework in his usual fashion and was fresh as ever. From their we headed to his baseball practice where he did great!

Upon arrival home he complained of a headache and belly pain. Nothing very significant. Gave him a bath and some Motrin and off to bed he went.

At 9:00 we noticed he was breathing heavy... I went in took his temp and it was 102. I waited 4 hours and took another it was 102.2. I called the transplant center immediately and they said take him to the ER to be checked. We arrived at the ER by 2:00, Devin was awake, alert, being grouchy to the nurse, and still giving orders. At about 3:00 his breathing started to become an isssue. They put him oxygen.... by 4:00 it was worse and so on goes the story. By 10:00 Friday morning they where intubating him (putting him on a breathing machine), putting in Central Lines, and starting him on medications to sustain his blood pressure.

For all my medical friends... He is Intubated, has 3 IV's, 1 Central Line, an Arterial Line, NGT, and Foley. Vent setting are pretty high... He is on Dopamine, Levophed, and Milrinone.... He is sedated with Versed and Fentanyl... He is on broad spectrum antibiotics, gram +, gram -, and antifungal..

Major issues of the day were keeping him well oxygenated and keeping his blood pressure stable. These two things are extremely important for his new intestines to continue to function.

As you all can imagine... I can only ask how or why did this happen??? No sign, no symptoms, and now fighting for his little life...

THANK YOU ALL for your continued support and prayers!!! May God see Devin through this..

PS Derrick said he was stable during his flight from Robertwood, NJ back down to Georgetown..

Also last but by far not least.... A HUGE THANKS!!! to everyone at Robert Wood.... You all did an AMAZING job...

URENT PRAYERS NEEDED!!!!!!!!!!!!!!!

Submitted by Colleen and Derrick on Fri, 10/09/2009 - 4:06pm.

I will post the details later... as i type Devin is being airlifted to Georgetown from Robertwood, NJ... He is VERY SICK!!! His in on a respirator (breathing machine) and numerous meds to keep his little body going....

PLEASE WE NEED PRAYERS!!! Devin is not doing well !!!! and he needs the power of prayer again!!!

I will post the details tonight.. I am leaving to drive to DC. Derrick was allowed to fly with him.

Crazy....

Submitted by Colleen and Derrick on Tue, 10/06/2009 - 7:26pm.

Although we were given the ok to draw blood in two weeks something over the weekend suggested differently... On Saturday Devin complained on and off of a belly ache, which I believed was him just having to poop... being that he still made it to his baseball game... and a headache, which I believed was allergies... On Sunday while I was given him a shower I noticed he was very bruised on his legs and butt... I questioned him regarding falling and so on but nothing seemed to stand out. On Monday again while showering him I noticed bruises on his shoulders and back... That was it for me... It's time to do some blood work to see what is going on... He had no fever, no diarrhea, no vomiting, and no significant complaints...
We did labs today... his Prograf and Rapamune levels are to high, his Liver numbers are to high, his platelet count is to low, and his Kidney numbers are to high... ahhhh what is going on???? I am hoping and praying this is all a result of his drug levels being elevated.. We adjusted the dose today and will redraw labs on Monday unless anything changes...

Keep praying for my little trooper!!!

Welcome To Kindergarten....

Submitted by Colleen and Derrick on Fri, 10/02/2009 - 3:52pm.

We officially have our first cold and sore throat :( He got off the bus and proceeded home to bed.. Poor thing!! We will relax in bed and watch TV all weekend. I hope and pray it doesn't escalate into anything more then a cold.

It's Getting Chilly Here...

Submitted by Colleen and Derrick on Thu, 10/01/2009 - 7:38am.

As I woke up this morning and thought to myself, we could use a little heat!! It was a true sign that the seasons are changing and we are entering the season that we reflect and give thanks for what we have been so blessed with....
October is a big month for us. Devin will turn "6" !! an age we never thought we would see. On that day not only will we celebrate his birthday but we will also celebrate 8 months since transplant... Their is only one word to describe it AMAZING!!!
As I have shared with many of you, an isolated bowel transplant is a very difficult transplant. So to tell you that we are very thankful for every healthy day that Devin has is putting it mildly. He has truly earned them!!!

He loves school!! and those of you that know him can imagine he is NOT being a perfect angel. We are working very hard to change this!! He has his good days and his bad..

He is back in the full swing of baseball and of course loves that!! He has found the position he loves.... catching!!

Other then that he only has time for sleeping.. He is so tired when he gets home we have a hard time keeping him awake until 7 - 7:30.

We are so Thankful for all the positive things happening in Devins life!

We pray for a healthy fall and winter..