Wednesday, September 14, 2016

Still here

We are still here at the hospital waiting for Philip's last dose of antibiotics tomorrow morning. The plan is to be discharged after that tomorrow. 
They determined he had a bacteria called klebsiellla. Luckily it was sensitive to antibiotics. They switched from the original antibiotic to one more tailored to this bug. It's fascinating stuff that they can figure out what each bacteria is sensitive too and what it is resistant too and tailor each patients treatment of antibiotics. I am thankful everyday that we live in these times and in a country where we have access to amazing healthcare. I am also so thankful for our team of doctors and their communication with each other between Mt. Sinai and Cohen's. We are so lucky they all go out of their way to check up on him and make sure he is getting the best care. We are fortunate that we have met basically everyone in the GI department at Cohen's so we feel comfortable with whoever is on call. His normal GI who has followed him since he was 6 weeks old and worked with us through finding out that he had Biliary atresia wasn't on this week but she took time out to stop by to check in on us. Philips pediatrician who also does not round at the hospital anymore, stopped by to check in. And when I emailed his hepatologist at Mt. Sinai frantically on a Sunday night with some fears hoping to hear from them the next day, she called me that night to put me at ease. He is on contact and droplet precautions so he can't leave the room, so it's been a long week trying to keep him busy. He gets frustrated easily and is just plain crabby at times. Who can blame him. Being sick has caused his prograf( anti rejection med) levels to go out of whack. It was 18.6 when it should be around 8-10. Levels like that can be very dangerous. It can affect the kidneys so it needed to be reduced fast. So they stopped it for a few doses, which is very nerve wracking in itself. His kidney function so far seems ok. Now his dose is all messed up and we will have to figure it all out again. They've had to replace his IV 4 times and he has to get blood drawn every morning which ensues in lots of screaming and croc rolling which usually takes about 4 people to help get the task done. When I say screaming, I mean horrific screams that has surely terrified all the other patients and staff on the floor. People literally come out of their rooms to see if he is ok.  Every morning we are usually woken up by the phlebotomist and I have to sit in bed with him in my lap and cross my legs over him to pin him down and basically put him in a modified sleeper hold with my hand around his neck and grabbing his opposite hand to avoid him seeing when they stick him and him grabbing the needle out of the phlebotomists hand. I'm sweating just thinking about it. But these things are necessary. There is no choice in the matter. That is the only way to truly know what is going on inside. All we can do is try to make the rest of the time a little enjoyable and less clinical for him. This is how we spend some of our time. 
We have visitors.
We play pet vet.
We hide.
Where's Philip?
There he is!
We play cars.
And watch videos.
And play more cars.

Friday, September 9, 2016

And that's not all...

While staying overnight for observation, the doctor woke me up to tell me that Philip's blood culture had come back positive for bacteria. Meaning he has bacteria in his blood. This explains more why he was so extremely sick yesterday. It was not just a virus but bacteremia as well. I feel relieved I decided to come to the ER instead of just the pediatrician and they started the antibiotics right away even before the positive culture.  He's been in IV antibiotics every 6 hours and it seems to be helping. His clotting was a little off so they gave him a vitamin K shot to help with that. Today we repeated labs this morning and are waiting to see if his blood grows bacteria again. He had an ultrasound to rule out and absess or liver issue that might be causing the infection but that looked all good. His liver numbers remain good as well. They have to now isolate and figure what the particular bacteria is in his blood so they can fine tune the treatment if needed. But we heard that anytime bacteria is in the blood they would automatically treat for 7 days of IV antibiotics. I'm hoping I heard wrong but looks like we will be in for a few more days. I'm worried that maybe he ate something that was contaminated or I wasn't diligent enough watching what he ate or played with and washing his hands. He is 10x better than yesterday and almost back to himself so I am hoping the bacteria has responded well to the antibiotics and it is not a resistant strain. Continue to pray for Philip and that he can bounce easily back from this. 

Thursday, September 8, 2016

Well that didn't go as planned...

I used to love going back to school as a kid. Going back to school shopping at the flea market with my mother and Nana getting my share of leggings and of course My bright white Keds for good measure. Wearing my fall colored and way too warm outfit on the first day of school even though it was 89degrees. But it changed when I had Philip. September is when I heard the words Biliary Atresia the first time and when Philip had his first surgery. Those feelings from those moments swiftly changed my perception of September. Before I got to know more about the disease I didn't think Philip would be starting school with his peers. As I read about it more I readied myself for developmental and milestone delays that come with malnutrition and other issues that come along from Liver disease. But he surprised us at every turn and grew and developed and hit every milestone. 3 years later and after the crazy journey we've been on I started feeling excited again about Back to School season. I did my supply shopping early for the kids, but there's always that one item that gets you. Before you know it, It's the first week of September and all the stores are plucked clean of school supplies. I mean, Good Luck if you dropped the ball and didn't get the Paw Patrol lunch box your kid saw at the beginning of the summer as you said to yourself, I have plenty of time to get it. Now you've been to every store you can think of imaginable that would carry said lunch box, along with every other slacker mom only to find 500 of the OTHER Paw Patrol lunch box that makes your kid lose their shit when you suggest it as an alternative. How dare you! You pick out the perfect outfits for your boys, Your Facebook feed starts to be filled with First Day of School pictures and you can't wait to take yours. You plan for you and your husband to drop off and pick up your son for his first day of kindergarten and go to orientation for your other son going to Nursery school for the first time. You don't feel as nervous as other moms for your kindergartener. He's strong and adaptable, he'll get through it just fine. 
The one in Nursery is another story. He's been through hell and back. He's really never been in the care of someone other than family. And now, not only do I have to entrust him to his teachers, I have to entrust him to all the parents of the children in the class and now that I think of it all the parents in the community for that matter. I pray they keep their kids home when they are sick, pray they taught them to sneeze in their elbow, cover their mouth when they cough, and clean their hands often. I deeply pray they have vaccinated their children against so many illnesses that can cause real problems for an immune compromised child like Philip. Yes most of those illnesses were once "common" childhood illnesses but "common" is the important word. My child's health isn't "common" and these diseases can spell disaster in an immunocompromised person. Their bodies can not fight as well and rare complications may be more of a  reality than not. We rely on herd immunity. It's a very real thing my child depends on. Then the morning comes
and your little guy wakes up with a fever. You go solo to drop your other son off at kindergarten, and watch the other parents head into nursery orientation without you and your son. And realize he will have to go it alone for his first day at school now. You bring your sick son to the hospital to be checked out where they keep him overnight for observation, and you miss getting to pick your other son up from his first day at kindergarten. I am still so angry with Biliary Atresia. We've had to miss countless things due to this disease. I still hear of kids dying from this disease either waiting for a transplant or complications from transplant. Transplant has been an indescribable blessing that has given Philip a new better life, but is by no means a real "cure" for Biliary Atresia. It comes with its own demons as well. The virus he has really kicked his butt because he is immunocompromised. It's really just a normal cold virus but he was definitely not himself earlier. Fever, shaking, whimpering, aching all over. His coagulation numbers increased meaning it takes a little longer for him to clot. They had to give him a Vitamin K shot to help. We think maybe the stress of the virus caused that. His heart rate was fast and blood pressure low. He slept most of the day. They have him on IV antibiotics just in case. He is finally feeling better now. And hopefully we get to go home tomorrow.  This is definitely not how I saw this day going.