Sleepy boy

Charlie was able to come home on Sunday. Yea!!! It's so nice to be out of the hospital. I think Charlie was starting to think that it was his second home:)

We figured out that he had got a staph infection, specifically staphlococcus epidermidis. Vancomycin is a really good antibiotic for this bacteria. He had got admitted again the day before Thanksgiving because the levels on his vancomycin weren't high enough to take care of it completely. So his dose was increased yet again. Nick's dad got a chance to talk to Dr Book and she told him that she has never had to give such a high dose to any patient before. It was obvious that he needed it that high though. Just another example of him being a unique little guy:)

Grandma Campbell has offered again to take the girls for a couple days in order to let us spend some time with Charlie adjusting to home. He has been coping okay. He sleeps a lot but whenever he is awake he is always needing to be comforted. I think he is still just a little leary of what is going to happen next. Poor guy, I feel so bad for what he has had to go through. But also very fortunate to have him as healthy as he is, considering his condition.

Thanksgiving

I thought that there was no way I was going to be able to make it to Thanksgiving dinner in Ogden this year because of Charlie being in the hospital. But I was wrong. The nurses that day were not very busy and Charlie was doing really well, so I decided to go for a few hours. It was so refreshing to get out of the hospital and to spend some time with the girls. We all had such a fun time that day. Kayla even got to play football with Nick.

Another day

Well, I lied. I found out today that he is actually coming home tomorrow. Probably. It will depend on how his blood cultures look from today. Also, he is scheduled for a heart echo on Monday to make sure the bacteria is not in his heart. I'll update more later...

Coming home tomorrow

Charlie has done quite good again today. We are planning for him to get discharged tomorrow! We are excited for him to be home but not excited for all the meds he will be on. For the next week or so, Nick and I are going to be crazy busy. Wish us luck with getting sleep:)

Thanksgiving

The doctors have decided to keep Charlie in for at least another day. Although it stinks that him and I are in the hopsital instead of at his grandparents house, I am glad we're are keeping a close eye on him. He is definately becoming best friends with all the nurses and aides. They just love him!

Short visit home

Well, yesterday went pretty good. Some high temps but overall Charlie was improving quite a bit. He was scheduled to get a PICC line in early this afternoon and afterwards we could all come home for Thanksgiving. Our friends Luke and Lauren were absolutely wonderful and chose to spend their day off with us. Lauren kept me company as we waited for Charlie's PICC line and Luke was home with Nick helping out with the girls.
So around 3pm Charlie was ready to get discharged. The nurses set up home health nursing to come and IV therapy to drop off all his drugs at our house. We finally got home around 4 and started making plans to go to Ogden for Thanksgiving but Charlie of course had other ideas in mind. About two hours after we got home, he got another fever. So I called the GI doctor and was told to come into the ER again. It looks like his antibiotic, Zosyn, was stopped too early and he still has some sort of bacteria. The good news is that it still isn't affecting his liver at all.

Red man syndrome

We are beginning to discover that Charlie really is an unusual little guy. A few months ago our friend Joe Hanson said that we should try the lottery and to use any numbers that are associated with Charlie. This is because Charlie has beat the odds in almost everything in his life. First of all, he is a twin, about a 1 in 40 chance, then he gets diagnosed with biliary atresia, a 1 in 16,000 chance of that occuring. In addition biliary atresia is more common in girls and in Asians or African-Americans. Also, Charlie has so far been in the top third of patients having a successful Kasai surgery. Today has shown us that he is definately continuing on in this "beating the odds" pattern. He had been started on an antibiotic called vancomycin late last night and soon after his first dose was started he began turning red. One of the rare adverse reactions to vancomycin is a thing called "red man syndrome" a condition characterized by flushing and a rash that affects the face, neck and upper torso. It occurs in less than 0.1% of the patients that recieve IV vancomycin. Fortunately, it is not a serious side effect and can be treated with benadryl before each vancomycin dose.
Other hospital updates: Charlie was negative for rotavirus. We will get results back to see if it is C diff or not later today. Also, we are still unsure if the infection is cholangitis or not so Dr. Book has said that the safest route is to treat as if it was cholangitis. That means another cycle of antibiotics and possibly the need for another PICC line.
Charlie continues to be such a cute and happy boy during all this. We sure are lucky to have him.

Here's a pic of him and I the day before we brought him into Primary Childrens again...

Back in the hospital

Yesterday, I noticed that Charlie was not feeling well. He wasn't eating and he was feeling really warm. After getting 102.7 for a temp, I took him into the emergency dept. We were concerned that it might be cholangitis, infection in the intestine. However today, after lots of labs, positive blood cultures, high white count and his temp spiking up to 103.3 it looks like he has a staph infection. We aren't sure of the source yet but his liver enzymes and bilirubin are fine, so it is most likely not his liver or cholangitis. The plan is to treat the sepsis with antibiotics and monitor him for a few days in the hospital.
Through all this, Charlie has been such an awesome kid. He has stole the hearts of all the nurses who are always saying what a cute, sweet boy he is. Nick and I have been grateful to live so close to Primary Childrens and so impressed at how caring and kind the medical staff has been. It feels good to know he is in such good care.

Nov 15, 2007

On Monday, Charlie had another appointment with Dr. Book, his liver doctor. It went great. Again, she said we should be thrilled with the results. Not all kids are this fortunate. She also said he is able to stop the vitamin K and to continue tapering off the steriods. So, now he only has meds twice a day. Not too bad compared to 2 months ago. And he is doing so well that she doesn't need to seem him again until February.
On another good note, this morning was his evaluation with DDI Vantage, an early intervention program for kids with possible developmental delays. And, no surprise, he passed with flying colors!!! I'm so proud of my little guy! This is where he is on various developmental areas; gross and fine motor skills-4 mo, expressive and receptive language-5 mo, cognitive and self help-6mo, and of course social/emotional-7 mo. I am always telling everyone that he is such a little flirt!

labs look good

I called to get Charlie's lab results today and they all look really good. His total bili was 0.3, ALT 139 and AST 119. Those are all lower than the previous labs. Also, his stools have been a better color and he is throwing up a lot less today.

Here's a few pics since I haven't posted any for a while:)

???

The last few days Charlie has been throwing up quite a bit. It's fairly large amounts too, like half of his bottle. Normally this wouldn't concerm me too much because sometimes babies just do this. Kayla did for a while as well. But I ended up calling Dr. Book's office because of the last diaper I had changed. His stool color was significantly lighter than what usually had been. It still had some greenish tint to it but it was closer to the color it had been before his surgery. I am hoping it was just a one time occurance because he is doing great with everything else. His eyes and skin aren't showing any yellowness and his belly doesn't seem distended or hard. He is running a really low grade fever of 99.4 but he has done that off and on for a while now. So, just to be on the safe side I called and am waiting to hear back from her. I'll post more after that.

Update: I am scheduled to take him in for labs tomorrow morning. She wants to get a liver panel done to see if any of the enzymes or ggt are elevated.

Nov 3, 2007

Charlie is continuing to do really well. We were so happy to hear that Charlie could finally get his PICC line out. It came out just in time to get him and Hailey dressed up in their halloween onesies and head to the grandparent's house. Him being done with all the IV meds is so wonderful for Nick and I because we can finally start getting some more sleep!
Also, his last labs were even better than last week. Ggt was down to 1269, uncongugated bilirubin an awesome 0.2, and WBC back to normal at 10.6. His liver enzymes were a bit higher than last week but not significantly, ALT 183 and AST 124. I am still amazed at just how white his eyes look. When I look at pictures I had taken of him in August, they were so yellow almost greenish. Poor guy. He's been through a lot these last couple months.
I do need to remember how fortunate we have been to have Charlie as healthy as he is. Our friends Jenn and Justin lost their baby boy, Ian, on Thursday. Ian and Charlie were PICU roomates at Primary Children's after his surgery. Please keep their family in your prayers. Jenn and Justin were such an example to me about how to never lose faith and trust in our Heavenly Father, even in such trying times. They were such strong parents and my heart goes out to them.