Wednesday, June 6, 2007

We're in.

After a bumpy week last week, a good weekend, Frankie was admitted for vomiting and diarrhea.

Last Thursday night, Frankie had a fever of 101.5. And, after a phone discussion with the doctor at 10pm, it was decided that we not come to the hospital. Frankie's fever broke on its own by 1am Friday morning. This was a very good sign of his overall ability to fight off infections, germs, bugs, etc...

Yesterday, Frankie didn't really seem his normal upbeat self. He had a long nap (over 3 hours) before I felt the need to wake him up. I believe he would have slept longer had I let him. Later that afternoon, he vomited during his Special Ed session (Sorry, Michelle!)... three times! Michelle was a wonderful help while Frank and I comforted and cleaned up Frankie.

This lasted about four hours. He would fall asleep in my arms, wake up, crawl onto the floor and fall asleep there before waking up and vomiting again.

He didn't sleep all that well, but after our talk with the doctors, we planned on bringing Frankie to clinic this morning for fluids, at the very least.

So, after they saw him at clinic today, everyone was in agreement... Frankie was just not Frankie. He was absolutely miserable. They gave him a HUGE bag of fluids and he still didn't perk up. In fact, as soon as we got admitted to the 7th floor and he could lay down in a crib, he's been sleeping on and off all day.

So, it's 9pm, and the doctors still don't know what is really wrong with him. He hasn't had any stool to be able to test for the battery of viruses that could be coursing through his system. I'm hoping tomorrow will be better. Thankfully, he hasn't vomited since 8pm last night... but, he hasn't eaten anything.

More tomorrow...

Wednesday, June 13, 2007

We're out.

Short Story:
Frankie was severely dehydrated from vomiting and diarhhea caused by an unknown virus coursing through his system. He's still not 100%, but he's A LOT better today.

Long Story:
Frankie was discharged on Sunday, but not without concern on the part of the parents. Frankie was still acting "funky" and we were both worried that we'd just be right back on 7W within a day.

So, what was wrong?? Apparently, Frankie was severely dehydrated. Which, is a pretty weird thing for me to imagine since he drinks so much during the day. But, with all of the vomiting and diarhhea, he just couldn't keep up.

We'll never know exactly what caused the V & D, but the concensus is "virus." And, that's how he was treated. He didn't get any new medication, but just a ton of fluids.

If he doesn't show progress of getting over the virus with just fluids and time, GI is considering scoping him again. My concern from the start was that the ulcers had returned. We did find an ulcer in his mouth, but the more we looked at it, the more it did look like trauma (he bit his cheek). And, as of today, the ulcer is pretty much gone.

So, every admission to Yale, I learn something new. I learned that severe dehydration causes blood pressure to drop. And, since high blood pressure was an issue for Frankie, we had to stop his two oral medications for high blood pressure. If his pressures increased, the plan was to restart, but at a lower dose... only what was necessary to keep his pressures "normal".

Even though we were discharged on Sunday, we were back at clinic on Monday and Tuesday for blood draws. His FK level on Monday was incredibly high (31), and he was still too lethargic for my liking on Tuesday, so we were back in clinic for a recheck of FK, fluids and a battery of chemistries (20ml of blood taken).

Before we left clinic on Tuesday, we received the results from most of his chemistries. Carolyn, Frankie's NP, put my worries to ease, for the most part... I'm a mom, I'll always worry. In any case, everything was coming back normal. She even consulted Endocrinology regarding his steroid levels. All docs are in agreement that his "funky" behavior was just him needing more time to heal and get over the virus. Patience, mommy... patience.

Short story WAY long... Frankie's doing much better today. Frank & I are happy with his level of energy, even though it's not completely back to normal.

Sunday, June 24, 2007

All quiet on the DeMatteis front...

I guess the lack of updates can sometimes mean a lot is going on and I don't have time to update. Fortunately, the long span of time between this update and the last was due to "nothing to report."

Father's Day was very nice. We brought Frankie over to Frank's parents and he was able to see some of his cousins. His social skills are still a bit lacking, so he kept his distance from everyone. However, he does get a kick out of his youngest cousin, Noah, so there was a lot of laughing, but still from a safe distance.

Frankie also likes his grandma's dog, Murray. He seems to like dogs in general. We'd love to get him one, but it's just not the time. Plus, I'm sure we'd have to get the "ok" from the doctors. Maybe sometime in the future.

Yesterday marked the birthday of three of Frankie's cousins, Reese, Eve and Andrew. Reese and Eve are 7 year old twins on Frank's side and Andrew is my sister's youngest boy. He turned three.

We went to Frank's sister's house to celebrate the twins' birthday. It was nice to start feeling like a normal family. I can't speak for Frank, but I still get nervous. Any silly leniency could lend us back in the hospital for days. So, it's hard to relax completely.

Sorry for such a boring update. But, I guess that's a good thing, right??

Thursday, June 28, 2007 - 1:45pm

Frankie was moved to the PICU. His condition is serious, but not life threatening at this moment. The main reason for moving him to the PICU is the ratio of nurses to patients. On 7W, the ratio is around 4 patients to one nurse. In the PICU it's one-to-one. Here, Frankie will get more devoted care, something he truly needs right now.

Please continue to say prayers for him. The pancreatitis will get very painful for him before it gets better. His going to be put on a continuous drip for pain.

Thursday, June 28, 2007

We're in.

Short Story:
Tuesday's levels showed that Frankie was neutropenic. We were scheduled to go to clinic on Wednesday for a GCSF shot and for me to get a lesson on how to draw up GCSF for future needs. Wednesday morning, Frankie woke up at 6:30am vomiting and didn't really stop until he had nothing left in his belly. After a few blood draws, XRay and CT Scan, we have discovered he has pancreatitis. I have no idea how long we will be here. But, to give you an idea, PICU has been alerted to his condition.

Long Story:
When we arrived around 9am at clinic on Wednesday morning, Frankie was retching every 2-3 minutes. He was begging for his bottle, but every time he drank, it came right back up.

After four hours of fluids, Pepsid, and Zofran to settle his stomach, the decision was to admit him. Prior to going to the 7th floor, an abdominal XRay showed a large bubble in his bowel loops. Who knew???<br>
We finally got to 7W around 4:30pm. To say he was miserable would be horribly understated. And then the bomb dropped... NG Tube.<br>
We had gone so long without ever needing an NG Tube. Knowing my son, I knew this was going to be a challenge.

I have no idea what time the first attempt was made. He panicked. And, since he's got the strength of 10 men, he was able to gag the tube into a twist. How did we find this out, you ask... Well, since it wasn't suctioning any of the fluid and/or gas out of his stomach, he needed a CT Scan to confirm the placement (or lack thereof) in addition to getting a better look at the air in his bowel loops.

The CT Scan confirmed the NG tube was twisted. And, it also confirmed pancreatitis. A new tube would have to be placed. At this point in time it was after 9pm.

The second NG tube worked wonderfully, until, that is, he pulled it out sometime after 2am and before 5:30am. I heard him fussing more than usual at 5:30 and awoke to find one of his no-nose arm bands was completely off and the tube completely out of his body.

Since then it's just been a matter of keeping him comfortable. He's on pain medication now, but even that doesn't seem to give him complete relief. His breathing is labored, his body is swollen - third spacing, and another NG tube is eminent.

Unfortunately, only time and non-eating/non-drinking heals a pancreas. But, there are and can be complications along the way. That's why PICU has gotten involved.

Bottom line... we need some major prayers coming Frankie's way. I can't believe his 2 year anniversary for transplant is this Saturday (June 30). I would have hoped for a better recovery for my son. Two years post transplant, and this should be the farthest thing from our minds.

We're also scheduled to go to Duke July 7th for a week of annual evaluations. Who knows if we'll make it.

Saturday, June 30, 2007

Happy 2nd Anniversary to Frankie!

Granted, we had expected to be celebrating his second anniversary of his umbilical cord transplant in a completely different way.

NOTE: Added two pictures of Frankie in PICU

Short Story:
Frankie's doing so much better this morning. He had a decent night's sleep last night which allowed for a decent night's sleep for Frank and myself. We took turns (three hour shifts) making sure Frankie didn't pull out any of the dozen tubes protruding from his body.

Long Story:
Pancreatitis is an extremely painful disease that can come on wicked fast, which it did for Frankie. Unfortunately, only time and pain control are the "cures" for this disease. In addition, no one could really tell us when he'd be out of the proverbial woods on this one, mainly because we cannot pinpoint an exact cause.

The doctors' main priority is to treat the pancreatitis. His medications for transplant recovery were on the back burner over the past three days, and for the most part, still are. Unfortunately, one evening the staff gave him IV Tacrolimus through his port. This is a big no-no because Tacrolimus clings to everything; therefore, we'll never be able to pull blood from his port to test his FK level. Thankfully, this isn't such a big deal, since we do peripheral blood draws anyway. We just have to make sure that any FK levels drawn are done through a stick.

A little recap of a scary episode yesterday. Since pain control is one of the main treatments for this disease, our main concern was to make sure Frankie was as comfortable as he could be. However, the pain medication was overshot and his oxygen saturations levels dropped rapidly yesterday morning. His body was basically shutting down, with the morphine telling him it was "okay."

So, he was given two shots of narcan to reverse the effects the hydromorphone (pain med). FYI... Narcan is given to heroin overdosers in the ED to keep them alive. Since then, we've dropped the amount of pain med he's getting, and even though he's getting less, he's actually doing much better. He's a little whimpery, but more alert. And, surprisingly, he slept so much better last night than when he was doped up.

This morning, he's much more responsive and alert. The plan is to wean him off of his oxygen (changed from the mask to a nasal cannula this morning). He's currently at 28% oxygen, which is only slightly higher than normal room air. So, we're getting close.

He'll keep his NG tube until GI says it's okay to pull. His catheter will come out, and his pain med will stop altogether. They'll keep him on the monitor to check his vitals hourly and then eventually every 4 hours.

Renal is watching his blood pressure, as are we. If he consistently keeps his systolic under 120, then there won't be a need to reintroduce his blood pressure meds right now.

The enzymes in the pancreas, amylase and lipase, that were insanely elevated, have come down very nicely over the past few days. To give you an idea, the normal range for these enzymes is under 60, Frankie's levels when we first were admitted were in the thousands! Today, his levels are under 300, still not normal, but definitely much improved.

In all honesty, no one, not even the doctors knew which way this was going to go for Frankie the first night here. Today, everyone is very pleased with his progress and very much relieved.

Thank you for your emails, your messages in Frankie's guestbook, and most of all, your prayers. He's still healing and has a long way to go. We're still in the PICU, and that's the best place for him. He's getting the care he needs to get better.