No Life For A 6 Year Old!!!!

Submitted by Colleen and Derrick on Sat, 01/23/2010 - 11:07pm.

Devin is in the hospital… AGAIN!! On Thursday he had a very mild cough.. No fever, no runny nose, no loss of appetite, or energy, and was tolerating everything just fine. He had, had labs drawn Thursday morning before school and everything came back ok.. On Friday when he got up he seemed to be coughing a little more, but again nothing significant. He came out of school on Friday complaining of a horse voice and coughing a lot. Spoke with doctors and they said to watch him closely.

At 3AM he called me to say he was burning! 102.9… He complained of chest pain and shoulder pain… I immediately called my local GI doctor who said bring him to the ER. On the way I spoke to the transplant center who said…. This is not good!! O Great!!! Just what I wanted to hear.

We are currently in Robert Wood Johnson in NJ.. All labs and tests have been sent off for all different types of viruses and infections.. He has been started on broad-spectrum antibiotics. His chest x-ray showed some infiltrates on the right side and he has some decreased breath sounds on that same side.. I think he has pneumonia! But we haven’t gotten any official results yet.

Now for the hard part… as you all know Devin suffered rejection just a few short weeks ago. This required an increase in immune suppression and steroid treatment. Unfortunately this also increases his risk of catching common everyday illnesses. But without immune suppression he will reject his transplant…. With immune suppression he can not fight off any kind of illness… So today they had to stop 1 immune suppression drug, cut the dose of the other, and cut his steroids in half… This God willing will give his body the ability to fight this off without it getting any worse... The down side is it increases his risk for rejection :( !!!

The plan… is to watch him very closely to make sure his condition does not get worse. Re-evaluate every day and hopefully within 4 to 7 days restart the meds he needs to prevent rejection… and it hasn’t been said but I can see a colonoscopy in his near future…

So, tell me what life is this for a 6 year old!!!

Thank You Lord!!!

Submitted by Colleen and Derrick on Tue, 01/12/2010 - 8:13pm.

Devin is REJECTION FREE! Biopsy results look good they are back to baseline....

Plan... decrease his steroids in a week... get his prograf and rapamune levels (anti-rejection drugs) stabalized... and re-scope in 4 wks :(

Thank You ALL for your continued support and prayers!! We truly appreciate all of you.

((((FRUSTRATED))))

Submitted by Colleen and Derrick on Mon, 01/11/2010 - 11:27pm.

As many of you re-call this is the information I was given Tuesday night before leaving Georgetown…. the biopsies are NO worse... nor better! Leading the team to believe that this was not rejection... but possibly a virus or bacterial infection.. The one piece that does not make sense then is why did he not get sick when they suppressed his immune system again??? What I was told, "Not especially concerning... has to be watched very closely... never really been seen before" The plan... cut his steroid dose in half, just incase it is a virus or bacteria... watch him very closely for signs of illness.. Fever, vomiting, diarrhea, belly pain... and Colonoscopy Monday morning!!

We arrived today, as they prepared Devin for his colonoscopy and endoscopy Dr. K explained to us…. The last scope showed marked improvement and that the rejection seems to have gotten much better.. Now I heard what he was saying, but it really didn’t register, because Devin distracted me. But for those of you that know him the look on Derricks face clearly showed there was a problem. Once Devin was sedated.. I mouthed, “what’s wrong”, he mouthed “rejection” I shrugged my shoulders..

When the procedure was complete we clarified the information we were given.. On 12/28 Devin’s biopsies showed mild rejection.. he was hospitalized and given high dose steroids and started on a second drug for immune suppression.. On 1/4 Devin’s biopsies showed marked improvement, just some non-specific inflammation. We will have today’s biopsy results tomorrow night.

So to sum it up, this has been rejection which seems to be improving.

Why Oh Why...

Submitted by Colleen and Derrick on Sun, 01/10/2010 - 10:07pm.

Does any 6 year old go through this... gggrrr! He has been screaming for food.. He is starving! I am going to get thrown out of the hotel... between the screams for food and the screams of "no more things in my butt please!" (the suppositories for the bowel prep)...

Help us Lord!!

GGGRRRRR...

Submitted by Colleen and Derrick on Sat, 01/09/2010 - 8:36pm.

Back to DC tomorrow for a colonoscopy Monday morning.. My poor little dude.. Please pray things go very smoothly and pray the biopsy results are back to baseline.

We Are....

Submitted by Colleen and Derrick on Wed, 01/06/2010 - 12:43am.

((((((((HOME))))))))

The Results...

Submitted by Colleen and Derrick on Tue, 01/05/2010 - 5:52pm.

I know many of you have been patiently waiting... as were we... So, the biopsies are NO worse... nor better! Leading the team to believe that this was not rejection... but possibly a virus or bacterial infection.. The one piece that does not make sense then is why did he not get sick when they suppressed his immune system again??? I believe they are all scratching their heads.. what I was told, "Not especially concerning... has to be watched very closely... never really been seen before" The plan... cut his steriod dose in half, just incase it is a virus or bacteria... watch hime very closely for signs of illness.. fever, vomiting, diarrhea, belly pain... and Colonoscopy Monday morning!!

Not really sure what to think or how to feel...

Thanks again for all your support...

Short And To The Point...

Submitted by Colleen and Derrick on Mon, 01/04/2010 - 9:08pm.

NIGHTMARE!!!!! from beginning to end…. Devin’s procedure started at 1 …. and finished at 4:45!!!! Long story… too long to go into!! Devin did well during the procedure… Dr K was called in around 3:45 to relieve the situation… Biopsy’s done… Bowel still looks BEAUTIFUL! But as we all learned last week the final results will come after pathology looks at the biopsies.

Thanks to our great nurses… Devin has already had his ham sandwich (wanted a second, but kitchen closed), 3 pancakes, and his milk!! He is laying peacefully with his heating pad on watching TV…

Long hard day!!!! Bed is calling!

My Poor Dude...

Submitted by Colleen and Derrick on Sun, 01/03/2010 - 7:46pm.

I have come to the conclusion that one day Devin will probably need post traumatic stress therapy... Surgery, Surgery, Surgery, Transplant, Drains, Flu, Multiple IV's, Multiple Colonoscopy's, Multiple Endoscopy's, Multiple Bowel Preps, and the list can go on.....

Today, as he laid in bed promising he would be good if they didn't stick him again for an IV. I realized this poor kid is so confused as to why this is all happening.. Their have been a couple of times lately that he blames himself or the situation in relation to medical stuff... ie when they can't get an IV in he cries "but I stayed still, I was good" and when we were heading down here the other day he was so upset saying " I followed all the directions yesterday I stayed still, so why do I have to go back?" He has been through more in 6 years then some adults have been through in their entire life.... WHY???? It is so wierd how life works.... will he ever catch a break!!! I am so concerned about all this immune suppression, school and every day life... How do you protect a 6 year old who loves life from germs... aaahhhh Another day another worry!!

Please extra prayers tomorrow... his colonoscopy is scheduled for 1:30... we will NOT have results until TUESDAY EVENING... I will post the minute I hear anything...

Thanks for all your prayers and support!!!