Thursday, January 3, 2008

Happy New Year!

First, let me start by saying that we had a great Christmas! We had a busy Christmas, but it was great to be with family and friends.

Second, thanks to Cari, Matt, Jessie and Dylan, for taking time out from their busy schedule to stop by our home to wish us a very special Merry Christmas! It was so wonderful to see everyone after two years. The last time we saw them, in person, was at clinic at Duke, when we were all discharged, but still in Durham. She looked wonderful, and was having a good time walking up and down our street with Frankie and Dylan in tow! Jessie's still learning to walk again, after her procedure and subsequent cast removal. But, she was doing such a great job with just a little help.

And, finally, an update on Frankie. New Year's Eve was great. We had dinner at my parent's house to celebrate the New Year, as well as my sister's birthday. Then, we stopped by Frank's sister's house for a little bit. Everything was great. Frankie had a fabulous time at both places. Which is why the next day came as a bit of a surprise.

You guessed it... Frankie woke up vomiting and having continuous diarrhea for two hours straight. He was so completely wiped out by 8am, he fell asleep with Daddy.

At 10am when he "woke up" and was still amazingly lethargic, I called Yale. By 11am we were packing up and going to the Pediatric ED. Even after 2 hours of fluids, he still hadn't perked up. He was tachycardic (Heart Rate 160s) and the could barely get a blood pressure on him (70s/40s). His WBC count was in the mid-20s. His stool was testing Hem-positive (blood). And yet, thankfully, though, no fever.

So, we were admitted to the 7th floor. At roughly 6pm, Frankie started to get more energy. He was able to take in fluids by mouth without vomiting, but his stool was not getting better, in fact, it was getting worse. I'm not going to bore you with details, but trust me, the last too diapers of the night were horrible.

On Wednesday morning, Frankie woke up so much more like himself. His diapers were getting more normal. And, there was talk of getting discharged that day. But, we were still expecting the GI consult, so I wasn't going to jump to any conclusions.

To make a long story less long... We were discharged from Yale yesterday afternoon. Frankie is scheduled for a full colonoscopy and endoscopy on Tuesday, January 8.

For those of you who don't know, one year ago, almost to the day, Frankie had a sigmoidoscopy which revealed ulcers in his colon. We're truly hoping for a better year, this time around.

Monday, January 7, 2008

Well, two things to note...

One, Frankie's guestbook has changed (quite dramatically, at that). My web host has changed, and thus the original guestbook is no longer offered. So, I had to change with the times, and adopt their new (free) guestbook. Unfortunately, it won't look anything like this website, as I have no control over the background, fonts, layouts, etc... So, please continue to leave us notes in the new guestbook as it is now up and running. <Frankie's New Guestbook>

Two, it's been a grueling 24 hours. To prepare for Frankie's double procedure tomorrow (Colonoscopy & Endoscopy), we had to begin giving him laxatives last night. It's an oral dose that is extremely salty and cannot be masked by any type of beverage. I love that the packaging says "unflavored"... whatever.

So, we gave him one dose last night and one dose this afternoon. Then, tonight, we get the pleasure of giving him the first of two enemas. Tomorrow morning's enema will be the final step in preparing his little body for the GI folks. I hope they appreciate this!

Now, try explaining to any child that they can't eat anything but broth, Italian Ice and clear fluids for 2 1/2 days. Now, try explaining it to a child with special needs... see where I'm going with this? Frankie has been a trooper, putting up with me telling him "later" and "not now" over and over again. He's only lost it a few times, pushing me quite forcefully into our kitchen, screaming. Can you blame him??

Thankfully, the procedure isn't as late as I thought it was going to be. We have to be at Yale by 11:40am. I'm not sure how long the double header will take, but I'm going to assume that we'll be leaving the hospital just at the heart of rush hour! It's our luck... not good luck, not necessarily bad luck... just our luck. :)

Take care, and we'll update again soon.

Wednesday, January 9, 2008

Yesterday went pretty well. I'll have to say that I'm incredibly impressed with my little boy. Despite a couple of hunger screams, he handled the no-food issue without too much fuss. So long as we could distract him, he did fine.

The procedure was delayed for two hours. But, out of the house, he doesn't really look for food, thankfully. So, armed with all of his DVDs and his player, we waited patiently for our turn in the OR.

The double header lasted roughly 2 1/2 hours. And, recovery lasted another hour or so. The GI doctor couldn't really give us any "results" as the biopsies (roughly 20) had to be sent to pathology and will take roughly one week to review.

Frankie was only slightly wobbly on his feet once we got home (6pm). The anesthesia they use, Propophol, is awesome. He always wakes from it without any major issues. The anesthesiologists call it "milk of amnesia". I always ask for it, if I know that an anesthesiologist will be in the OR with him. Nurse anesthetists are not qualified to administer the drug as there is no reversal should anything go wrong.

So, the rest of the night went without any issue.

Unfortunately, this morning, Frankie woke with a fever of 101.7. Off to the hospital we go! His energy level is fine, but we still have to be cautious for possible infection. It's entirely possible that this is "normal" from the procedures yesterday, but again, we can't assume anything.

I'll update when I know more. Til then, we're hanging at clinic...

Sunday, January 13, 2008

To catch everyone up, we were sent home on Wednesday after Frankie got some antibiotics, a little bit of fluids, and his monthly infusion of Pentamadine. We set an appointment for the next day, Thursday, to get another dose of the antibiotic.

However, that night, his temperature never really came down to his normal baseline. And, still, I was surprised when he woke up the next morning with a fever of 103. After a few calls to the doctors, they wanted us in earlier than our 2pm appointment. As a warning, they told us to pack our things for at least an overnight stay.

They started giving him fluids in the clinic and a dose of antibiotics along with a stress dose of steroids. When we got to clinic, his fever had gone down from the 103 I had taken, so technically, he never had a fever while we were at Yale. But, they have to take what I told them as being valid. Which, is completely and perfectly fine by me. Better safe than sorry.

So, before we went up to the 7th floor (not 7W, mind you as all of the rooms were full), they did a chest X-ray on Frankie to make sure he didn't aspirate any fluids while under anesthesia on Tuesday (possible pneumonia). That came up clean.

While on 7-3, he had another X-ray done of his KUB (kidneys, urinary track, bladder) and an ultrasound to rule out any other belly issues, like kidney stones. The ultrasound came out clean but the KUB X-ray went missing. GI docs were okay with not having that information since the ultrasound came up clean. However, it does make you wonder where the heck the X-ray wound up, and who would pay for it?!? It's the least of my worries, though.

So, they kept us until yesterday. We have no answers other than his LFTs are elevated, his WBC were elevated and the preliminary biopsy results show some inflammation in both areas (upper and lower GI). Docs point their fingers to either infection or virus. But, since nothing is growing on any of the many cultures that have been sent, they are leaning more toward virus. And, there's nothing they can give Frankie to get rid of a virus. Thus, the sending home that occurred yesterday.

We have a follow-up appointment on Thursday. I'm not sure we'll ever get answers. I'm just hoping for an easier year than last, for Frankie's sake. It's his turn to be happy and healthy.

Thursday, January 17, 2008

Frankie's back in the hospital (Yale) since yesterday. Same story, severe dehydration. Only, this time, it was slightly worse.

Without getting into crazy details that most people outside of the "transplant" world wouldn't understand, we need a new plan for Frankie because what's been going on for the past two and a half years hasn't worked to our satisfaction.

We've got GI and Hem/Onc on board, along with PBMT at Duke. So, hopefully, we'll get a better answer to the unanswered question of "what the hell is going on?"

On a brighter note, Frankie is doing much better today than yesterday. He's active, drinking, eating, and laughing.

Sorry to be so short in this write-up. I'm just "slightly" stressed and not quite in the mood to talk and/or write about this any more.

Tuesday, January 22, 2008

Frankie was discharged from Yale yesterday. But, that's not to say that we have any answers, only that he was no longer, technically, sick enough to stay in the hospital.

To summarize, here are the doctors now on-board with respect to Frankie's "unknown" dehydration issue:
1. Hem/Onc at Yale
2. Duke Transplant Doctors
3. GI at Yale
4. Infectious Disease at Yale
5. Endocrine at Yale
6. Renal at Yale

So, I'm thinking that we've covered our bases here and we're hoping that sometime (SOON) we will have more answers.

In the meantime, we're waiting on the results from the biopsies that were analyzed here, but now sent off to a special lab in Seattle. This lab is specialized in diagnosing GvHD of the gut.

Regardless of what's going on in his colon (unspecified colitis, by the way), his adrenal system is not nearly strong enough to handle high stress situations -- vomiting, diarrhea, fever. And, it appears that each episode, his body handles the stress worse and worse.

I won't put it too lightly, just so people understand, this passed episode of dehydration was bad. His adrenal system couldn't "fight" properly, and he lost circulation to his extremities. He went into "dry" shock. His temperature dropped to 92 degrees; the tips of his fingers and toes turned black; he was lethargic. Doctors told us that basically, the blood in his body was busy circulating around his heart and brain, that's why his color looked so bad.

It took Frankie almost 4 boluses of fluid to rehydrate him. One bolus is 400cc, to give you an idea of the amount of fluid his body lost and needed replaced. He was perking up after 24 hours, but not really back to his base-line until day two.

We were admitted from clinic on Wednesday straight to the PICU, where they put Frankie under a warming blanket to bring his temperature back up to normal. With that, IV fluids and stress doses of steroids, he was gradually making a turn-around. It wasn't as apparently scary as when he was in the hospital in July with the pancreatitis, but his body was fighting just the same.

My writing is a little scattered, sorry. I just remember things a little out of order and then that's how I type.

So, Infectious Disease (ID) is on-board because they could give the rest of the teams the yea/nay on more antibiotics... which was a "nay" by the way. And, they also thought up a few more viruses to test just in case. And, so far, those have all come back negative.

Endocrine is now on-board because we now believe that his adrenal insufficiency is pushing him over the edge when he has his GI issues. There may be an issue with him absorbing his maintenance level of steroids he gets daily. This could cause any failure in his GI track to be so much worse, as we've already seen.

So, Frank & I now have "emergency" stress doses of steroids to give Frankie should he start presenting this decline again. It's an intramuscular shot (deeper than subcutaneous, and has to hit muscle). I truly hope neither of us ever have to give that shot, but I'm glad we have it, just in case.

Wednesday, January 23, 2008

Home two nights and one day... back in the PICU this morning.

Well, I was able to earn my IM shot wings this morning at 7:30am.

Frankie woke up at 6:30 with the same symptoms as the past few admissions. So, by 7:30am, we had a call into the doctors, an intramuscular shot of his stress dose hydrocortisone, packing of bags and off to the ED by 8:00am.

Frankie was put in the trauma in the ED since his temp was falling again. They put heat lamps on him and ran warm water through his IV to bring his temp back up. The nurses in the ED miraculously were able to get a peripheral IV in him (I was completely shocked, as that's a very difficult thing to find on him). So, they started fluids in both the peripheral and his port, so he was getting double the amount of fluids, which was definitely a good thing.

By the time we were ready to be transported up to the PICU, Frankie was already turning around. He started to perk up about 1/2 hour before we got there. But, it's always better to be safe!

So, now the doctors are more convinced that the adrenal insufficiency is definitely a key player in this game. It was definitely a good thing to have that stress dose on hand to give it to Frankie as soon as possible.

Now, we're just hanging out in the PICU waiting for the next step.

Tuesday, January 29, 2008

After one full day/night in the PICU, Frankie was moved to our "home away from home" 7West.

So, it appears that a combination of the stress dose steroid and fluids is the magical combination to get my little one back on track. But, the issue now is the absorption of his maintenance steroid.

We, the collective team of doctors and parents, now believe that the cortef tablet we were giving Frankie three times daily, was just not absorbing into his system properly, if at all. This would cause his rapid and rather severe crashes he's been going through.

So, after much deliberation, we've changed some medications around. On top of this, his blood pressures have gone back up, so we've added back the Amlodipine drug that helps keep those back in a normal 4 year old range.

We stayed on 7West a few days more so the doctors could watch his "reaction" to the added/changed drugs. Since all of his cultures were coming back negative, there really wasn't much more reason to keep us there after his I/Os leveled out, too. He was putting out double of what he was drinking/eating, so they were concerned that he still wasn't "right". However, that all went back to normal by Sunday, and we were home that afternoon.

Last night, however, Frankie vomited. I think it was his dinner (didn't agree with him) because his behavior after was completely different than when he has had his prior "episodes". And, this morning, he's been perfectly fine. So, I'm still sort of holding my breath, wondering when the shoe is going to fall. Until then!!!