James Patrick

Here I am at The Pirates Of The Caribean ride at Disney World. Do I look cool or what!?!?

Welcome to our Child's Web Page. It has been provided to keep people updated about our James Patrick, a preemie baby that has had his share of challenges since leaving the NICU. James Patrick has Spastic Diplegia Cerebral Palsy, he also has a Bard Button feeding tube and Bronchopulmonary Dysplasia lung disease. He is the happiest kid ever with the longest eyelashes in the world! Please sign the guestbook so we know you were here :-)

Journal

Friday, March 16, 2007 10:43 PM CDT

Hello Everyone,
It has been forever and a day since I was able to update! Sorry! My silence does not mean that life around here has been boring, it never is. This is gonna be a long one so go get a drink and have a potty break now..........

James was just sprung from a 4 day stay at Walter Reed Army Medical Center. He has been sick off and on since Christmas, but the latest round of sickness was a doozy. It all started with a sinus infection a few weeks ago, he took the antibiotics for 10 days and all was well for a few hours at least. Then he had a horrible, awful constipation episode that left him unable to stand or walk. This resulted in a few ER visits, lots of abdominal x-rays, enemas, suppositories and laxatives (oh my!). And me asking him about every five minutes 'did you poop?!' After our poop patrol let up a bit James got a nasty upper respiratory infection that inflamed his asthma. So he went on steroids for 5 days. Which made him grumpy and very hungry, kinda like his Daddy.

All was well for a total of about 34 hours when he awoke last Wednesday morning with a fever and his throat so sore he couldn't swallow, he was crying his head off. Off to Walter Reed we go when he begins having bad belly pain in the car on I-95 in horrible rush hour traffic. I pull over to try to calm him down and he tells me to keep going, he just wants to get to the doctor. About 30 seconds after I pull back into traffics he starts screaming and then retching horribly. Because of James' major stomach surgeries when he was 3 years old he cannot vomit and retching is extremely pain full for him, one such instance even caused him a stomach bleed a few years ago. I pull over with the retching terrified kid and I have no choice but to call 911, because I know that I cannot vent his tummy with his feeding tube and drive in all the freaking traffic with a retching kid all at the same time. By now the traffic reporter on WTOP is talking about the 'motorist on south bound 95 with a medical emergency' and I think "that's my boy!" He's still thrilled that he made the traffic report, not once but three times! Fred/Daddy was waiting for us at Walter Reed having taken the bus there from work so I had to call him and tell him James was coming via ambulance, not comforting news. So I have to leave James in the ambulance with the medics to be whisked speedily away while I had to sit in traffic for another hour wondering if he was OK. By the time I got to the ER James was happy as a clam telling his Daddy how much fun the ambulance ride was. Sigh. His rapid strep tests comes back with what the doctors call a raging case of strep, not regular old strep, but raging! All throughout his ER stay he has a great time batting his long lashes at the doctors and nurses, telling everyone he feels fine. Thereby making his mother, that would be me, look like an idiot. So he is given a dose of antibiotics orally and sent home. We all get in the car and I drop Fred off at his bus stop so he can head back to work, as soon as we pull away from Fred, James starts retching awfully again. So I pick Fred back up and take James back to the ER. They give him a shot of penicillin in his leg that will cover the 10 days of oral antibiotics, they also give him a dose of anti nausea medicine for the car ride home, he also charms the docs into giving him two popscicles. When I return to the ER after filling his prescriptions he is sitting on the lap of the attending doctor eating a popscicle and cuddling with her. They do notice he is quite warm and take his temp, it's 101.1. He gets Tylenol and once again we are released. James does well when we get home, I put him to bed with more Tylenol and when it is due to wear off a few hours later I check on him sleeping, no fever but he is scratching at is neck like he has fire ants on him.
The next morning James awakes and his throat feels much better. He is however itching a lot. When he takes his jammies off I notice that his neck chest and abdomen is covered with a red rash that feels like sandpaper. Hmmmm, wonder what that could be? I look step throat online and read about a complication of strep, scarlet fever? Huh?! Do people still get that? Isn't that something from the age of polio? Nope, the description of scarlet fever matches the rash James has perfectly. So I make an afternoon appointment at the local pediatric clinic, and they confirmed it, scarlet fever.
James was doing ok, just itching a lot, so I went and bough him every Aveeno product available and went home to bathe him and slather lotion all over which made the itching much better. We all eat dinner and all is well until bedtime when James starts complaining of his belly hurting. He says it feels like it does when he is constipated (although not that eloquently) so I mix him up a laxative cocktail and give him a glycerine suppository. What do you do on Friday nights for fun? He is still in a lot of pain, so I give him an enema and that seems to help a tiny bit. He was cuddling on front of the TV with Fred when he started vomiting, actually barfing! I'm not sure who was more shocked, him or us! He apologized profusely for doing so and for making a mess, he is my kid after all. He hasn't been able to barf in 5 years! I had a feeling things were getting bad fast, so off we go to Walter Reed ER. As soon as we get there and they begin to triage James he starts barfing again. He has a high fever now and he was drifting in and out of sleep and barfing occasionally still. After an hour or two of this we all want to barf, because they are *stripping the floors in the ER* the ammonia fumes are overwhelming and making James feel even sicker. At some point he also starts to have awful diarrhea. He gets an abdominal x-ray to rule out a bowel obstruction. James is hooked up to an IV now and we are trying to get some Tylenol in him to get his fever down. He is barfing anything he tries to take by mouth, and he is having diarrhea about every 10 minutes now, so a suppository isn't a good idea either. Whomever invents a fever reducer that can be administered by IV will be my hero and very rich indeed, so get right on it people. Some time during this fun filled time they decide to admit James to the pediatric floor but it takes about 5 hours to do so and we are stuck in the ER all night overcome by fumes, and in my case, panic attacks.
Fred stayed with James on the early hours of Saturday morning while I went home to try to get some sleep, when I ended up sanitizing my entire house and fantasizing about tenting the house with a termite tent and bombing it with Lysol. I head back to Walter Reed where my poor buddy is still so miserably. Fred, bless his soul, spent 3 hours giving him Motrin by syringe a drop at a time to try to get the fever down. James is still not tolerating anything orally and he is pooping every 5 to 10 minutes, no I an not exaggerating. Outside of the NICU ,which we are graduates of, I have never seen a kid so sick, and so violently ill at that. Father Gianni comes by to do an anointing of the sick for James and he gives Fred a special dispensation to drink soda during Lent, which he valiantly had given up and was refusing to drink the only available beverage in the hospital. James slept off an on when he wasn't dragging his IV pole into the bathroom and his fevers got up over 103. Fred again spent the night with him and I went home to be alone with my terror and Lysol. Sunday morning James was actually able to take a few bites of toast and keep it down, yippee! Now if only we could get him to stop pooping every 10 minutes, he is still running fevers. At one point James was so out of it, he didn't know who I was or what his name was, it was one of the most terrifying moments of my life. Thankfully he snapped out of it, but man that scared me. Fred went home Sunday afternoon to take a much needed shower. He called me from home to tell me that my entire side of our large walk in closet has collapsed, leaving an explosion of clothing in it's wake. Sadly, I have had this effect on a closet before in our previous home, it is a phenomenon my friends call 'critical mass', Fred thinks it if proof that I have too many clothes, I don't see what that has to with anything. About 10 minutes after Fred calls to tell me of the closet's demise he calls to ask where the Immodium is. UH-OH! Ugh, Fred has come down with the dreaded virus now too! He insists on coming back to the hospital anyway, he goes to the garage and his car won't start! I think the only way his day could get worse is if I told him I was pregnant, ha! Which I'm not for the record. Fred insists on staying at the hospital again even though he looks like death, unfortunately sleeping in the chairs at the bedside would have rendered me and my 3 herniated disks paralyzed so I couldn't really argue with him. So I go home to my cleaning products. Monday morning dawns and James can drink without barfing! He is still having lots of diarrhea but the docs think that he can hydrate himself now so we can take him home. Monday afternoon we leave the pediatric floor, and guess what they were doing? Stripping the floors! Someone must have gotten the memo about all the squalor at Walter Reed! Just kidding, we saw no squalor and I know every inch of that hospital. James received the best care and we are so grateful to Walter Reed for saving his life yet again.
James continued to poop like crazy Monday and Tuesday at home, but that stopped finally. He is still recovering and he has lost 10f his body weight, you can see his ribs. Hopefully Angelina Jolie won't come by because she would totally want to adopt him. So to sum up, James gave us quite a big scare that my sanitizing won't wash away, and Fred has lost a bit of weight himself. Fred went back to work on Wednesday and we are all trying to recover. Thanks to everyone for all your heartfelt e-mails and messages, it really means a lot to us, and James told me 'that so many people are praying for me because they are my family and they have to' I assured him that it's because he's so lovable. He remains to be my hero.
James has been home with me all week, and getting more bored as he starts to feel better. Looking back I can't believe that he had strep throat, scarlet fever, and horrible gastroenteritis all at once. The trifecta of diseases all coming together to form the perfect storm. At least now no one can fault me for my extreme germaphobia, although this incident has certainly not improved it!
Love & Prayers,
Maureen

Read Journal History

Hospital Information:

Patient Room: Ward 51

Walter Reed Army Medical Center
Georgia Avenue
Washington, DC

Links:

E-mail Author: mosiphine@aol.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.