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.

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. 

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. 

3 Months

Its hard to believe it has been 3 Months already!! Dan has been medically cleared to go back to work and of all restrictions. Philip continues to thrive and get stronger every day and his blood work remains stable. He always had a little trouble with stairs but now is a lot more confident and strong and starting to not hold on anymore. He loves to jump and climb on all of my furniture and likes to raise his eyebrows really quick if he's excited about something and says "Look, I have crazy eyebrows!" He is potty training now which is the pits. I really hate potty training. Just when you think they got it, they run up to you saying they have to go potty but already have poo dripping down their leg and a trail through the whole house. Yeah, it's my least favorite parenting duty.
He has been weaned off several of his medications and now is only on Prograf, prednisone, pepcid and asprin. They just took him off one of his anti-rejection medicines called Cellcept so he needs bloodwork in a week to make sure his body is handling it well and if all is good we can wait three weeks to repeat. I remember coming home from the hospital feeling overwhelmed with all of the medication saying how the heck am I going to do this?!! And here we are just 12 weeks later with only 4 meds. We now get to spread our trips to his transplant doctors to every month. I really love his doctor. She remembered he loved his muffins, so for his birthday on this last visit she had muffins waiting for him. He was so excited.

I am enjoying watching Philip get to enjoy his summer and have his visits and blood work get spread out but at the same time I feel the worries in my head start to push into the foreground a little more. I mean he looks and acts great but the proof is in the bloodwork and to have to wait it out gives me anxiety. I just have to have faith in the fact that I know what to look for and can read him easily and if something were going on I could probably notice early enough. I am loving our new normal and hope we can keep it for a long time!

Blip

It never fails that when I post how good things are going, it is usually followed by a little health blip and yesterday proved no different. LOL I just have to laugh it off. We had Our first post transplant blip since we've been home. 

Philip developed a fever yesterday that landed us in the hospital.

Because he is so close to transplant he needs to be monitored closely for infections. Mt. Sinai agreed we could head to Cohen's Children's Hospital instead of the city to get checked out and if need be we could transfer. It's been a while since we've been here but since we've spent so much time here over the last almost 3 years, it almost felt like coming to our 2nd home. LOL

All of Philips blood work in regards to his liver look good. We are waiting for blood cultures to come back and some viral swabs so we are stuck here for a couple of days at least. He's been putting his fingers in his mouth a lot so someone mentioned maybe it's coxackie. Either way we're just hanging out here for the time being. I just pray he can fight whatever is brewing in him and we can move forward again. He's in good spirits but wants to go home! Poor bub's been through so much.

Couldn't forget to bring the crew!

Still has a thing for muffins! 

The Other Side

(Flashback)We walked into the diner, black binder in hand. We just came from Dan's appointment with the Living Donor team where they explained some things and sent us home with this binder to read over and make a decision to go forward or not. We slid into the booth knowing there was really no deciding today. The decision was made long before this appointment when they first mentioned living donor, that if it was an option, we would do it. We didn't know all the risks or anything about the procedure then but we knew that if it gave Philip a better chance at life, there was no question. But reading the book in the diner that day made us very nervous. Nervous of the unknown.  For both Philip and Dan. Phrases like bile leak, bleeding needing transfusion, donor may need more surgery after donation, donor may need a transplant them self or even death. Questions like Would the transplant take, would there be complications, would Dan's job be ok after surgery, how would Danny handle having his whole family away. So many questions and uneasy feelings.  People would ask how are you guys doing?, and We kept saying we can't wait to be on the other side of it and Everyone to be home. We knew the story would still continue after and there would always be more worries but to know the immediate outcome where we could all take a collective sigh for a minute was what we wanted and needed so badly.

...And here we are almost 8 weeks after transplant. And as everyone knows, I don't like to talk to much about when things are good for fear of jinxing but things are sooooo good. Philip amazes us every day with his energy and zest for life. He loves to laugh and to make people laugh. He is quite a character. We've adapted a few nicknames for him since his personality has exploded. 

First nickname is Repeat. He repeats everything his brother says and does. To a "T". 

Second is "The Lawyer". If Danny gets in trouble and I take a car away, Philip swiftly comes to his defense to explain why Danny did what he did and that he just wants his car back! 

Philip sleeps through the night now.  (one of my favorite improvements)

Although he does have bad dreams sometimes where I go in and he is crying in his sleep scratching himself but not really scratching. So sad, but he usually calms quickly.

He has given up his Bottle too! This has been a bone of contention for a while with many a doctor. But also many said let him keep it if it's a comfort in the hospital. Since he's been doing so great sleeping and he'll be going to school in the fall, I decided it was time to say bye to it. We gathered them all up to "give to another little boy who needed them with a booboo on his belly" and he's been great with it since. 

He loves to play baseball and go outside and play in the water.

He also loves to stay up late. It's like he's enjoying life so much he doesn't want to miss anyhing. 

His bloodwork remains stable and normal  so they've just changed our appointments to every 2 weeks. 

Dan is doing well also. They've lifted some restrictions so he can jog, ride a bike, swim etc. Still no lifting more than 30lbs though. They should lift all restrictions at the 12 week mark. 

I know he can't wait for that day!

We still can't believe we are on the other side already. 
What we've anticipated for so long, It's here, we're in it and It is so crazy, but oh so sweet!

Philip loving the sprinkler

Philip's favorite food "Chips and Dips"

Philip runs the bases

4 weeks post transplant

7 weeks post transplant 

Indescribable Feelings

Have you ever met someone throughout life that you just look at them and say, man they "get it". They are full of life, genuinely happy, all smiles. I've been around a few and always found myself envious of them. Why are they so happy all the time? Maybe they've had to deal with some pretty awful circumstance and they've come out the other side shining or maybe they were just born that way, it's in their genes. Either way I've found myself drawn to know why and longing to be that kind of person. And now I find myself looking at my son, whose only almost three years old, and I can already see this quality emerging in him.
Since his transplant and coming home, me and Dan have seen this amazing little person come to life.
We can't find the words to describe how he has changed but I can definitely see why some refer to their transplant as a re-birthday of sorts. Looking back, we never realized how crumby he must have felt all the time. He was always a funny, happy kid but his whole being has transformed into this spunky, hysterical, talkative, outgoing little kid, that just amazes us everyday with what he does or comes out with. If you already didn't know he had a transplant just 4 weeks ago you would never know it by looking at him. He has 10x more energy, wakes up happy and smiling, basically sleeps through the night, doesn't itch, and is so lovable all the time. He always comes over and says I'm going to give you a BIG HUG and then squeezes me so tight. If you ask him how he feels and how his belly is, he just might lift his shirt for you and tell you it's all better now! He takes all of his medicine like a champ and will also tell you it makes his belly feel better. Even the yucky ones!
And he is on several medicines several times a day. How he puts up with it I don't know. And even when he doesn't want to take them he easily gives in and does what he has to do.
Here is a quick list of what he is taking.

1. Prograf 2x/day- Anti-Rejection which is one of the most important ones he is on. It is important it is taken at specific times exactly 12hours apart so he has a balanced level of the medicine in his body.
2. Cellcept 2x/day- Anti-Rejection
3. Prednisone 1x/day- Anti-Rejection
4. Pepcid 2x/day - Antacid to help irritation in tummy from steroid
5. Ursodiol 2x/day - Makes bile thinner and flow easier
6. Bactrim 1x/day- Antibiotic to help prevent a lung infection called PCP
7. Valcyte  1x/day- Antiviral medication to prevent/treat viral infections like CMV(cytomegalovirus) or EBV(Epstein Barr)
8. Nystatin 4x/day- Anti fungal to prevent thrush. He swabs his mouth 4 times a day with this.
9. Baby Aspirin 1x/day - prevent blood clots
Also was on Magnesium and Lasix but was able to stop those this and last week.

He will be the most immuno compromised for the first three months. Meaning he will be the most susceptible to various infections during this time. So we just have to be a little careful with who is around him and where we bring him. No crowded malls or stores, no sick people, no kissing or excessive hugging from visitors and hand washing, hand washing, hand washing!!! I have anti bacterial placed all around the house in every room LOL.
Our team is pretty laid back on the other hand and want him to start living a normal life. Isn't that the reason they do the transplants in the first place? To let these kids live normal active lives. They don't want him rock climbing just yet but he's definitely ready to play baseball!
Dan is feeling great too. Maybe getting stir crazy because he has such restrictions on his activity. Hopefully in the next few weeks they will start to lift some restrictions.
We want to thank everyone again from the bottom of our hearts who continue to pray for us and support us. A special thank you to the FDNY Fire Family Transport Foundation (www.firefamilytransport.org)  and the guys in Dan's firehouse who volunteered their time to drive our families back and forth to the hospital and continue to drive us for follow up visits twice a week. Thank You so much!

 Coming Home!

 Welcome Home Philip! My sister decorated the lawn for him!

 17 days post transplant

 23 days post transplant

Huggies!