Follow-Up... Part 2

Submitted by Colleen and Derrick on Mon, 06/14/2010 - 8:27pm.

Heard from the transplant center... they are VERY concerned with his liver numbers.... so tomorrow we will repeat the repeat labs and add a few more... they are concerned that their may be a virus lurking.... If his liver number are not were they would like to see them then.... I O I O off to DC we go!!!! They feel without a glaring illness causing this elevation their is cause for concern...

Stay tuned....

** Kindergarten graduation this Thursday...
** Last baseball game this week...
Although unimportant in the grand picture.... VERY important to Devin... hoping he makes it to both!!!

Follow-Up...

Submitted by Colleen and Derrick on Mon, 06/14/2010 - 3:52pm.

Fever yesterday... but seems much better today... Labs from today are moving in the right direction... we will repeat them in a couple of days!! Unfortunately whenever Devin gets sick... simple or complex his Liver doesn't seem to like it.. I think it's from all damage the TPN (IV nutrition) seemed to cause over the years.. I am just waiting for that one thing to tip it over the edge..

(((LONG DAY)))

Submitted by Colleen and Derrick on Sun, 06/13/2010 - 9:02am.

Got home last night around 11:40 pm.... arrived at the ER around 2:30 pm... what should have taken maybe 3 hrs... took 8.5 hrs!! I only have one thing to say ((( I MISS MY DOCTOR )))... unfortunately she needed some time off and will hopefully be back by the end of summer...

We had a good night... Devin is still sleeping!! I think he wore himself out yesterday in the ER because his anxiety level was soo high!!!

We have a slew of labs to do in the morning and he will see the doctor tomorrow too. I am sure I will also be speaking to the transplant center regarding his liver numbers... I am hoping this is either part of the illness he currently has or maybe one of the medications he is on causing this... LORD knows he does not need anymore complications!!!

ER... LONG DAY!!

Submitted by Colleen and Derrick on Sat, 06/12/2010 - 8:28pm.

Still in ER patiently waitng as things play out... Getting IV antibiotics.. chest x-ray shows early signs of pneumonia.. left ear infection.. and his liver seems to be acting up.. His liver numbers are about 4x what they should be.. WHY?? The ultrasound of the liver appears to be normal... So the mystery remains!!

Plan... going home!!! will continue on oral antibiotics. Monday we will repeat all his labs plus a few extra to check for viruses and other things that can be effecting his liver... and a trip to the doctor for a follow-up.. God willing we can weather this strom at home.. If not we'll be headed back to the ER...

In The ER...

Submitted by Colleen and Derrick on Sat, 06/12/2010 - 3:56pm.

Devin woke up this morning complaining of not feeling good... earache, headache, sore throat, and belly pain.. fell back to sleep until 12.. and then the fever!! aahh!! We are in the ER waiting for his lab work and chest x-ray to come back!! Praying infectious disease allows us to go home and treat!!

Things We Take For Granted....

Submitted by Colleen and Derrick on Wed, 05/26/2010 - 3:24pm.

Living and Learning.... I am learning after "15" years as a PICU nurse... and "5" years as the mom of a very sick little boy... that their are more pieces to a medical journey then illness and treatment... Their is the psychological end... the isolation... and the stress... I have learned in the last couple of weeks that this is something we take for granted in children... "Their young... their resilient... they bounce back... they get over things..." Do they??

Devin had homework over the weekend and it asked him to name things you see in your neighborhood... Honestly he really didn't know what a neighborhood was... and couldn't really name anything... When I thought about this I had to scratch my head.. How often has he really been out in the neighborhood?? Library, never... Bank, ATM drive through only... Grocery store, maybe 2 times... mall, maybe a hand full of times... a park, maybe 2 times... and so on!! What an isolated life he has lived.. All with the goal of keeping him HEALTHY!!

Yesterday we went to the doctor which is located in the hospital... I said "Devin please don't touch anything... you know what lives in a hospital" he said... and I quote "germs, viruses, bacteria, flu, pneumonia, infection, all bad things that can make me sick"... "then I'll have to go back to Georgetown and maybe get a new belly"

NOW!! I realized that I have not given complete credit to the impact hospital life and isolation in the name of health has had on Devin's everyday life...

I always said... but maybe did not live by my belief of Quality over Quantity... So , now I am going to make that my goal... Devin's missed out on some of the "normal" everyday experiences of a kid!!

Ahhhh..... Part 2

Submitted by Colleen and Derrick on Tue, 05/25/2010 - 4:08pm.

Devin is still complaining of belly pain... still complaining of headaches... and sleeping a little more then usual... My gut is telling me he is suffering from sinusitis again... spoke with the doctors today and although not jumping for joy.. they have agreed to start antibiotics... god willing his headaches will improve... and his other symptoms will subside! If not I won't know what to think.. he is tolerating his feeds... no diarrhea, no fever, no change in bowel pattern, and his vomiting is usually after a coughing fit.. nothing "clearly" leaning toward any type of bowel issue...

If things do not improve in the next 3-4 days... I see a trip to DC in our near future..

Where are the headaches and belly pain coming from?????

Ahhhh.....

Submitted by Colleen and Derrick on Fri, 05/21/2010 - 8:46pm.

Devin has been complaining since yesterday morning of belly pain... he spent all day yesterday sleeping on and off... no fever, no vomiting, and went to the bathroom 3 times... different for him but not overly concerning... Today, again complaining of belly pain.. BUT this afternoon started vomiting.. :( Ahhh! what to think?? what to do?? We started him on pedialyte and will see how things go... if he gets a fever or is complaining that the pain is getting worse... we will be off to the ER!!!

Praying for a peaceful weekend!!

June 22nd is his next Colonoscopy & Endoscopy....

Another Day... Another Hurdle....

Submitted by Colleen and Derrick on Tue, 05/18/2010 - 3:25pm.

As some of you know Devin has been struggling behaviorally and emotionally... in my crusade to find an answer we managed to wean him off all the medications that had been added since September... because before January none of these issues where a problem... Mission accomplished! my happy go lucky little boy was back... smiling and laughing... but VERY HYPER... and still NOT interacting well with others... Last Thursday I took him to a Pediatric Developmental doctor... VERY INTERESTING!!! Devin is suffering from ADHD! which we have started medication for.. :( and Post Traumatic Stress...

Devin received his transplant 15 months ago after waiting 11 months. We were so happy to get the transplant and make a full recovery, his feelings were NEVER considered. In October of this year he had a near death experience. Once again do to the seriousness of this, we were so happy he survived we didn’t give much thought to his feelings or what his little body had been through... In January he had 5 Colonoscopies, which is a complete invasion of personal space not to mention being held down by 4-5 adults well they stick him MULTIPLE times for IV’s. This is not even taken into consideration the multiple hospitalizations he has had between October and now.

The results of post-traumatic stress can appear in two very different ways. One they withdraw, get quiet, don’t make eye contact, self stimulate, and just shut down. Two is they become hyper, loud, defiant, try to control the situations, need excessive amounts of input, thrive off any attention negative or positive, and always need to be focused on.

So, her first question was. “How could you (meaning me) possibly expect him to learn and pay attention with all this going on?” Unfortunately, I have spent so much time focusing on getting him caught up on his school work. I didn’t think about any of this, :( and for that I do feel horrible.. But, I need to move forward and learn from this... we are getting him evaluated for Occupational, Behavioral, & Play Therapy! We will have a very busy summer ahead of us... the good news is she feels by September he will be a new child... I hope and pray!!

Unfortunately, he is do for a Colonoscopy and Endoscopy in June.. :( I am sure this once again will be very difficult on him... but I am better prepared to help him along! The good news is.. we can finally go to getting his blood drawn every month instead of ever week.. This might not sound like a big deal but it causes him a great deal of anxiety..

Thanks again for all your prayers and support!
One Day At A Time... One Step At A Time!!!