Sunday, March 4, 2007

Frankie's cultures are still coming back positive from his line. While he's showing no signs of having a line infection (fever, vomitting, etc...) and now on two IV antibiotics, the possibility of having the port removed is almost certain. This persistent infection is what keeps us inpatient at Yale right now.

If the culture that was drawn today comes back positive (48 hours), Frankie will most certainly have his port removed. He will have a peripheral IV to administer antibiotics for a currently, undetermined length of time. After that course, he will go in for another surgery to place a new port. All the while, we'll be inpatient. Our longest stay yet.

The C-Diff and high blood pressure are under control right now. Frankie's BP oral med was increased again, and that seems to be helping. He's taking Vancomycin orally to help with the C-Diff and based on his current FK levels, that's doing it's job too. My only question is with the added antibiotic... will that counter-act the effects of the PO Vanco?? Apparently, that was a good question, because his doctor didn't really have an answer. So, I guess we'll just have to wait and see.

The good news is that he doesn't appear to be in any pain or discomfort. He's acting like his normal active self, just a little crazed being cooped up in one room for so long.

I should find out about the culture tomorrow or Tuesday. Then we'll know when/if surgery will be scheduled. I'll update then. Until that time, hug your kids!

Big smoochies to all of you and your little ones!

PS... THANKS to everyone who has written me emails or left messages in our guestbook. I've been a little occupied, but please know that I am reading them and very much appreciate all of the support!

Wednesday, March 7, 2007

Thankfully, Frankie's culture from last Saturday is still negative. And, being negative for this long, they assume it will remain that way. That being said, it appears (as nothing is ever certain lately) that the doctors will not remove his port, and that the two antibiotics appear to be doing their job.

His FK level has been on a roller coaster ride in the meantime. We had a high of 36 on Thursday, and a low of 7 over the weekend. We're not completely sure what's causing the low count lately, but we're hoping that the C-Diff is at least under control and not the culprit this time.

His blood pressure continues to be high, but that's because of the second antibiotic that was added.

Okay... so while typing this at roughly 9pm, Frankie started coughing in his crib. When I got to him, he vomited. I immediately took him out of the crib and called for the nurse.

Holding him on the floor, he vomited a little more. After watching a few minutes of Barney, I put him back in his crib and he's sleeping soundly right now.

I hope it's a quiet night after that. We don't need another reason to stay in the hospital!!

Saturday, March 10, 2007

On Thursday, Frankie tested positive for RSV. It's a respiratory virus that manifests itself as a cold in children. It's more dangerous for small children with weak lungs or already complicated respiratory issues, but for Frankie, it's just another inconvenience.

I won't go into the long and drawn out story about how we found out about the RSV, but let's just say, despite my efforts, it was at Frank's request to test him that we were able to figure out why he started coughing and vomiting Wednesday.

Today, at 4pm, Frankie will get his last dose of his second antibiotic. Earlier this morning, he pulled his needle out while getting Vancomycin (his first antibiotic) and before we knew it, his shirt was soaked. Thankfully, the antibiotic didn't infiltrate subcutaneously, it just leaked out under the dressing and onto his clothes. So, we're not sure exactly how much of that dose he really got.

He'll be continuing his Vanco for a full 10 days since his first negative culture. By our estimates, that's around Tuesday... give or take a dose.

So, between today and then, nephrology will be checking on his blood pressure and the medications to properly wean him. But, even with the latest addition of the second BP med, his pressures haven't been all that great, so who knows.

Monday or Tuesday of next week, they'll probably retest his stool for the C-Diff virus. We're hoping that the RSV will have passed by then, too. There's no treatment for the RSV, by the way. And, since the C-Diff has been reoccurring, the doctors are planning a slow wean off of the oral Vancomycin.

Even if we do get discharged sometime next week, we'll have to go back into clinic to retest his blood to make sure the line virus is still gone. If it shows positive again, they will not even "waste" time treating the port. He will go for surgery.

Happy Birthday (tomorrow) to my brother-in-law, Jon and my uncle, Emin. And, a belated Happy Birthday to my aunt Sue (her birthday was yesterday).

Tuesday, March 13, 2007

We're still here.

Meds have been changed more often than I can barely keep track. Thankfully, I keep a diary, daily, if not at each med-time. This comes in very handy when we're given different doses than we were told. It is very good to be able to double check the doctors and nurses.

Today, Frankie had his last IV dose of Vancomycin. Now, it's just a waiting game. They want him still here to monitor his blood pressure now. And, for those of you who have been with us from the beginning, you'll remember that his blood pressure issues were what kept us inpatient at Duke longer than originally planned.

So, the kidney doc just walked in to tell me they want to do an ultrasound on his kidneys (again, but looking at the blood flow to the kidneys) and also an Echo on his heart to make sure the high blood pressure isn't doing any damage to his heart.

Wish us luck... we're here for a little while longer, it seems....

Friday, March 16, 2007

We're finally home!... but get to the bottom before getting too happy for us... there's more I just wrote something new based on a phone call....

We were discharged on Wednesday afternoon. And, while we sort of knew we were going home that day, we weren't completely sure. So, we had to wait for the Echo of Frankie's heart and the sonogram of his kidneys to come back "ok" before we knew for sure.

Then, we had to wait for the discharge notes to be written and all of his new medications to be called into the pharmacies (we use more than one). I hope that one day, he'll only have to take a multivitamin!

And, even though we were discharged on Wednesday afternoon (out of the building around 4pm), we had to go to clinic on Thursday to check his FK level and to do another blood culture to make sure the infection in his line was still gone. If it grows anything at all, the line will be pulled and we're back in the hospital another two weeks!!

Frankie's drive home from the hospital was hysterical. He had a grin from ear to ear. And, when he got back in the house, he ran straight for his toys. He was giggling and laughing all night long. But, he didn't sleep as soundly as we thought. We think he might have gotten confused as to where he really was in the middle of the night.

He still has his RSV cough, but it's getting better. He still has a little diarrhea, but it too is getting better. And, from the report from clinic yesterday, his FK level is still theraputic (14). All good news to report. So, now we just wait on the culture... we're not completely out of the woods yet.

Well... I just got a call... it's positive. We're going to the Emergency Room after breakfast. Surgery has been called. We're back in everyone... I'll update when I know more...

Saturday, March 17, 2007

Two years ago today, Frank and I found out that Frankie tested positive for MPS III Type A. It wasn't exactly a "happy" Saint Patrick's Day, but did give us a reason to drink! :)

We're inpatient (again) and waiting for the port surgery. Unfortunately, since the surgery isn't emergent, Frankie's port removal is considered an "add on"... meaning, if an emergency surgery case happens this weekend, and a team is pulled in, then they will do Frankie's surgery that same day.

The only problem with this plan is that he has to be NPO for 6 hours prior to the surgery... for which we have absolutely no set time. So, do we keep him NPO all day??? No. We kept him NPO this morning until we were told there were no morning emergency surgeries. Now, we keep him NPO for the afternoon until some undetermined time. If no surgeries happen this afternoon, then we start the process all over again tomorrow.

However, even if nothing happens this weekend, and they've said his port removal will happen by Monday, the latest, on Monday, his procedure is still an "add on" basis, and we follow the same NPO pattern.

Add onto this whole surgery thing the snow (Nor 'Easter) that started yesterday and has mucked up the roads still today. I didn't go home last night, so Frank and I crammed on one couch for sleep. I'm hoping by this afternoon, the roads will be better.

I'm not sure what happens next or when. But, rest assured, I'll be updating when I do know. Thanks for reading!

Monday, March 19, 2007

Frankie had a successful port removal on Saturday afternoon (4pm).

However, right after his nap (noon) he vomited his breakfast, and things pretty much went downhill from there. Silver lining: at least it was easier to keep him NPO for surgery.

Surgery went very well. It was quick and he recovered easily from it. We were worried that he wouldn't sleep that night, but he was okay. The only problem was his inability to hold his PM meds down. And, horrible diarrhea started again. Fortunately, Frank was able to redose him and he was able to sleep after that. But, the peripheral IV was in a place that was not conducive to a very active, mobile child.

While in surgery, the anesthesiologist had to stick him with a peripheral IV so Vanco can be given over the next 48 hours. (Nurses tried prior to going into surgery, but after two attempts, we left it to the anesthesiologist). The only spot they could find a good vein was in his right foot. So, he's pretty much immobilized for that period of time. He can only be in his stroller or in the crib.

The spot where his IV comes out is very tricky. Any movement causes the line to occlude, and not push the fluids into his system. They put a board on it, but he's so wiggly that didn't work completely.

Last night, they put a second board on his foot and that seemed to do the trick. We thought we lost the line, which would have really sucked, but thanks to our diligent nurses, that didn't happen. If we lose the line before he gets all of his antibiotic, we're in trouble.

This being said, we will have to have another port placed. There's no way we can draw his weekly labs and administer IV meds (monthly, when he's healthy) with a peripheral line.

I'm trying to remember everything that's happened in just 24 hours, and it's getting increasingly difficult. So, here's where we are now:

- Port removed successfully
- RSV still positive
- C-Diff almost certainly positive, if not another GI virus
- High blood pressure - under control with two meds and a patch
- Surgery again sometime in future for new port (within next 3 weeks)
- Possible colonoscopy/sigmoidoscopy if necessary (to be determined by GI department sometime in near future)

Wednesday, March 21, 2007

I'm not even sure how I feel right now. I know I felt like I hit a wall last night.

Right before Frankie went to bed last night (still at Yale, by the way), I had him on my lap, snuggling. Which, probably should have been my first sign. His head felt warm to me, so I checked his temperature... 37.8C (low grade fever, probably around 100F).

When the nurse and PCA came in right before 8pm, they rechecked his temp and it hadn't changed. I asked them to come back in an hour to recheck... I knew something was up. I knew, especially when he was sleeping for that hour and his breathing got progressively faster. When Frankie's heart rate increases, he has a fever. Sure enough, at 9pm, his temperature was 39.4C (roughly 103F).

We had to call in a nurse from the PICU to draw blood for cultures. I tried to lessen the trauma by waking him up slowly and putting on a "calming" DVD for him to watch before they started to poke him. After cultures were drawn, they started two antibiotics (Ceftaz and Vanco). By 11:00pm, I had given him Tylenol to bring his fever down and put him to bed.

Based on his paperwork, his temp came down to normal around 1am. He slept until 8am, and has been without fever all day. You wouldn't know by looking at him that he's sick. His behavior is still upbeat and active (although basically tethered to his stroller due to the IV in his foot).

I'm thankful for two things... one, for not pulling the IV yesterday (24 hours early, just so he could run around) and two, for him spiking a fever while we were still inpatient.

Thank you to everyone who continues to share in this crazy journey. I'm sorry if I haven't been able to respond to emails as frequently as I used to (if at all, for that matter). I am honestly just completely drained. I summon the energy to update the website, and that's pretty much the extent of my mental ability right now.

Please know that we appreciate all of your emails, the messages left on Frankie's guestbook, prayers and good wishes. When things get back on track for him, for us, I will be better at keeping in touch.

Thank you. From the bottom of my heart, thank you for your continued support of our little pride and joy.

Sunday, March 25, 2007

Frankie's peripheral IV (in his foot) lasted almost one week. On Friday, we removed it for two reasons, it was starting to occlude more often and his course of antibiotic (this time) was finished.

The latter reason is sometimes scary since he has the tendency to spike fevers 24 hours of stopping antibiotics, or within a few hours of being discharged from the hospital. Our record over the past five months speaks volumes. You'd think we'd learn. Thankfully, while the nurses never get a chance to miss us, they continue to welcome Frankie with big smiles and hugs.

Speaking of his nurses, I have to say a huge THANK YOU to all of the nurses on 7 West that continue to provide excellent care and support whenever we're there. I'd like to thank a bunch in particular: Carol, Tricia, Donna, Laura R. and Laura L., Lindsay, Alicia, Jenn, Lucy, Jill, Cindy, Wendy, Michelle, and Tracy. And, life wouldn't be "normal" without the PCAs, either: Angel, Jonathan, Judy, Donna, Sonia, Sandy. They do an amazing job with putting up with my crazy antics, that's for sure! If I'm forgetting someone, it's only because I've completely lost my mind this last stay at Yale!

On a funnier side, one of the other parents on the floor used to hang out with Frank in their younger years. It took a while for both of them to figure it out, a while of Frank saying, "I know I know her" and of her asking me if Frank ever wore glasses! :) It's such a small world. And, if you're reading this, fellow 7-West mom, we're saying our prayers for your little one!

And, with all of this rambling, I'm sure you're all wondering about Frankie's status. Well, at the risk of jinxing myself, he's doing pretty well. We thought he was going to spike a fever last night, but thankfully, it didn't go that high (98.9 degrees, 3 degrees warmer than his normal resting temp) and he's doing much better this morning.

I'm not completely sure of the exact details of his impending surgery -- replacing the port, but when I do, I'll be sure to update the site. In the meantime, I hope this update finds you well.