Monday, July 2, 2007

Short Story:
We're still in the PICU, but the good news is that Frankie has really done a great job at getting better over the past 24 hours. Most likely they will move us back to our "normal" wing on the 7th floor tomorrow or the next day.

Thank you to everyone who has sent prayers and messages of love his way.

Long Story:
The enzymes continue to decrease. Today's levels were very close to "normal" and that's a very good sign, if not an incredible sign.

GI came by today to let us know how impressed they are with his recovery thus far. Sometimes, they said, it could take weeks for the enzymes to drop from such a severe abnormal rate to where they are right now. All of the doctors were surprised that he was not intubated the first night in the PICU. My boy's a fighter, that's for sure.

We were given the okay to offer Frankie clear fluids today. He accepted readily, and was able to keep the very-watered-down juice in his belly. We will be consulted by nutrition as to the type of diet Frankie will have to be on in order to keep his pancreas under control. I'm not sure if this is a life-time change diet, or a temporary one until his system heals. Either way, it will be good for him, but I have a feeling he's not going to like it too much. I have a feeling we're going to have to say goodbye to the Buffalo Ranch Doritos he loves so much!

Today, he was unhooked from everything and was able to walk around as best he could for not having walked in five days. He was a little unsteady on his feet, but was able to manage a few steps without needing to hold onto something.

Tonight he will only be hooked up to monitors... no IV infusions, no TPN, no Insulin, no morphine drip, etc... YEA! The pumps make so much noise, but he's so used to it, he sleeps through anything. It's a good thing too, because this floor isn't the quietest around bedtime, but it doesn't bother him one bit!

I can't remember everything that has transpired over the past week, but I do know this... This had to be the scariest time ever in the hospital with Frankie. He amazes us every day with his strength.

I thank God for you, every day, my sweet baby boy!

Thursday, July 5, 2007

Short Story:
We're out of the PICU and back to our "normal" floor at Yale... our home away from home 7W. Which, technically is just down the hall from the PICU, so we were never that far away.

Frankie's doing much better. We've been given the OK to go to Stage 2 of reintroducing "food" to his diet. That includes saltines and applesauce. Prior to that, Stage 1 is just juice.

Long Story:
Frankie's pancreatitis enzymes have gone back to normal ranges. His ANC at last check was above 2000 and his FK level has been therapeutic at even a lower dose of the medication!!

Each morning, he has gotten up with a better attitude and comfort level. This morning, he didn't fuss so much as I believe his belly is still showing signs of pain, but nothing nearly as bad as even the day before. This was good, because I really thought he was hungry, and we were waiting on GI to give us the word to move to Stage 2 of his diet. Thankfully, they saw how good he was this morning, so we were able to give him applesauce and 2 saltines. If he tolerates this for an undetermined length of time, he'll progress to Stage 3, a tiny bit more fat and a tiny bit of protein.

That being said, our trip to Duke has been postponed for a few weeks. While he may be safe for travel, none of the doctors want to push it... nor do his parents, for that matter! Throughout this whole ordeal, our motto has been "We're not in any rush."

I have to say, our stay in the PICU was very comforting. The nurses and doctors there were just as informative, reassuring and honest as they are on 7W. Both Frank and I were very impressed with the care he received there. And, it was nice to have everyone on board for the decision to move him there. He definitely needed the extra care to get him through the disease.

Today I really feel I can relax, or at least exhale a little. Right now, he's napping... a normal activity for him at this time. Normal... hmmm.

Thank you to everyone who has left a message in his guestbook, said a prayer for him, sent me an email with prayers and good wishes... it has helped him, and us, through this "bump" in the recovery road.

My deepest appreciation to you all!

Sunday, July 8, 2007

Short Story:
We're home.

Long Story:
On Friday morning, we were given the OK to go home. But, the doctors were leaving it up to us to decide if we wanted to wait just another night to make sure. After all, what's a Friday night without a post-discharge visit to the ED??!!??

Frank and I discussed the pros and cons of being given the decision. My main concern was leaving Friday night, only for Frankie to pull is normal "Friday Night Fever" act. He was still showing some abdominal pain, but other than that, he was doing quite well.

After a few hours of going back and forth, we decided to go home. Thankfully, the resident started the discharge paperwork earlier that day, so we were only waiting on the FK level to come back. In all honesty, we didn't have to wait for that, but by the time we made the decision, and the discharge orders were written, etc... we were walking out the door when we got word that his FK level was 11.

Okay, so for the transplant-savvy, here's the wrap-up of medical issues that have transpired over the past 10 months, keeping in mind that this all started AFTER he was 1 year post-transplant!
1. Since October, we've been wrestling with a therapeutic FK level.
2. Since October, we've been in and out of the hospital at least twice a month.
3. In December, ulcers were found in his colon.
4. Since about February, we've been wrestling with his ANC levels, having to give him GCSF shots about every 1-2 weeks.
5. We were in the hospital for almost the entire month of March - line infection that wouldn't go away.
6. Despite all of the hospital stays, since late April, his FK levels have been so therapeutic, we've been able to wean him down from 10mg BID to 1mg BID, with the latest weans coming quicker (4mg BID to 1mg BID within two weeks).
7. With his FK dose dropping, we've been able to wean his steroid very slowly, too, while being able to maintain good skin (fending off GvHD).
8. Every time we're scheduled to go to Duke, some "major" medical issue pops up and we wind up at Yale.
9. All of this, and we are still standing strong!!!

A couple of notes, in no particular order, of course:
- Thanks to my mom, who cut her trip short to come home for mental support!
- Thanks to Marie, who spent the first night in the PICU with me!
- Thanks to my in-laws who brought us food and coffee during our stay!
- Thanks to my family (both sides) that always offer any and all help.
- Thanks to Cari, Matt, Jessie and Dylan, who sent us some VERY YUMMY brownies!
- Thanks to Jean, who left me a sweet message on my phone!
- Thanks to Jason, Yngrid and Victoria... we missed you on 7W this time!
- Thanks to Kristina, Glenn, Kacey and Max (who I met for the first time) for being our friendly neighbors at our "home away from home"!
- Thanks to all of the nurses, PCAs, doctors and staff who always make our stays at Yale much more comfortable and less stressful... and for putting up with me!!
- Thanks to Frankie's Duke nurses, Chris and Jenn, who keep in touch not just because they were Frankie's nurses, but because they became our friends.
- And, a special THANK YOU to all of the wonderful people who continue to follow Frankie's progress! We feel your prayers and your support daily!

I don't normally call people out in my thanks because I'm always worried that I've forgotten someone. But, I couldn't let some of these people go unthanked (is that a word??).

Friday, July 20, 2007

Short Story:
We've been hospital free for two weeks... sort of.

I had to bring Frankie to the clinic Tuesday, unscheduled, for maintenance fluids. He was not drinking nearly enough to keep himself hydrated. By noon yesterday, he had only had two ounces of fluid, and not much more to eat, either.

Thursday's clinic was uneventful. He decided to do some crazy turn-around, but even as I write today, I can never be sure.

We're headed for Duke. Evaluations start Monday.

Long Story:
So, out of the hospital two Fridays ago and it's been a little touch-and-go. Our first weekend home, we were still very much on guard with Frankie's health and recovery. Since he had received the GCSF shot on the Thursday prior, we expected a fever Friday night. He did get one, low grade, but nothing to get too worried about.

The first week home must have been ok, because I can't remember much from it. His FK level has been stable over the past few weeks and his ANC has held nicely. Our main concern is a repeat of pancreatitis, as it can definitely occur.

This past weekend, Frankie decided he didn't want to drink. Every day was a challenge. But, thankfully, he didn't need to be admitted for fluids. By Tuesday, we were all concerned, so I brought him in for fluids. And, as typical behavior, he started drinking right away... throughout getting fluids. Sometimes I think it's an attention thing.

In addition to his ANC (1400, by the way) and his FK (7), and his GvHD under control, his blood pressures have been consistently acceptable (92/52). I'm hoping that soon, we'll get to drop down the dose of his BP meds. However, we're still waiting for the dust to settle on the pancreatitis before making any crazy changes.

But, then last night, for whatever reason, Frankie decides he's going to vomit. And, whenever that happens, a thousand things go through my head as to what could be the cause. I gave him some zofran and his meds. He slept fine last night. But, now this morning, he's not drinking as much. A little knowledge is a dangerous thing in this house.

So, as I'm trying to clean the house and pack for our trip, my mind is racing as to what may be brewing. I just hope we can make it safely down to Duke for his 2 year post-transplant evaluations.... wish us luck, they start Monday!!!

Tuesday, July 31, 2007

Short Story:
We're home, in Connecticut, back from Frankie's 2 year post-transplant evaluations at Duke.

Long Story:
We drove (okay, Frank drove) the entire trip in one day--12 hours, door to door. It wasn't pretty, but all three of us collapsed in our bed at 10:30pm Saturday night.

The evaluations at Duke went very well. In short, they were pleased with his progress, especially in light of January's ulcers, the multitude of inpatient stays at Hotel Yale, and July's pancreatitis. Where he didn't improve from his 18 month visit, he stayed stable, which was very impressive to Dr. Szabolcs and Jerelyn.

I planned on writing more details--the longer story--but I'm swamped right now with some other things. So, I'll just recap quickly:

Monday - EEG went okay, although it took an hour for Frankie to settle down enough (without sedation); X-Rays and skeletal survey, also went okay, other than a heck of a lot of screaming

Tuesday - Developmental review at CDL in Chapel Hill - surprisingly, went well despite Frankie's lack of interest in doing anything the evaluators wanted him to do. Then, in our review session with Dr. Escolar, three reps from Shire were there and wanted to observe Frankie -- Shire is a company that is trying to make an enzyme replacement for some of the MPS disorders.

Wednesday - Big Clinic Day: Blood draw, vitals, PFT, Echo -- all went okay, nothing crazy to note.

Thursday - Ah yes... the MRI sedation... MRI went fine, Frankie woke up from sedation fine this time, however, he decided to spike a fever (101). No admission to Duke, just antibiotics, GCSF (ANC dropped to 110) and IVIG and cultures were drawn - automatic must stay for 48 hours (in the Durham area).

Friday - Eye appointment where we confirmed Frankie's slightly near-sighted. No action right now, but possibly in future. Back to clinic for antibiotic and another shot of GCSF (ANC still below 500). Then had a review with Dr. Szabolcs and Gil over the week's evaluations.

Saturday - Clinic for FK level (we changed dose) and the last dose of antibiotics before heading home to CT. Wendy had trouble drawing FK peripherally, so we skipped that. No big deal since he seems to be tolerating the new dose on a clinical level. After clinic, I finished packing and loading up the car for our trip home. We left our Durham apartment at 10:30am and got to our home in CT at 10:30pm!