'Tis the Season...

...to be queasy. Fa la la la la la la la la.

As much as I tried to keep Philip from getting sick, it was inevitable and Wednesday he ended up with a fever. So off to the ER we went. The ER this time of year is hell on earth for me. People hacking up a lung, holding vomit basins, vomit bags strewn on the waiting room couches. (Cringe) Luckily we got fast tracked and waited less than two minutes in the waiting room where I learned that I can hold my breath pretty long. I won't divulge all the details of the last two days but it goes something like fever, chills, rash, diarreah, bed pan, vomit, 5 outfits in the garbage, fever, chills, diarreah, commode, fever, diarreah, fever, rash, chills. It's been a really challenging couple of days to say the least. I had to resort to putting Philip back in diapers because he's just too little to understand the need to quickly make it to the bathroom. He continuously says ow but won't specify exactly what hurts. It's a different part every time. He moans in his sleep and barely eats or drinks. The original blood cultures from the ER came back negative for bacteria so that is good. They repeated them today so we will wait to see if those are negative too. They are pretty sure it's a nasty virus. Me or you would be able to fight it off but Philip is having a harder time because his immune system isn't 100%. Please pray for Philip to fight this thing quicker and for me to have patience. It's so hard to see him not feeling so good and missing out on all the holiday happenings. 

Neutropenia

Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria.
Some people have lower-than-average neutrophil counts, but not an increased risk of infection. In these situations their neutropenia isn't a concern. Neutrophil counts less than 1,000 neutrophils per microliter — and especially counts of less than 500 neutrophils per microliter — are always considered to be neutropenia, where even the normal bacteria from your mouth and digestive tract can cause serious infections.
© 1998-2016 Mayo Foundation for Medical Education and Research. All rights reserved.

I received a call from Philips doctor this week that his liver numbers were good but his white blood cell count was extremely low. This means he can catch something very easily. They asked if he was feeling ok or any fevers but Philip was fine. They said any fevers or anything g else out of the ordinary and we should go to the ER. They had hematology look at the blood and he had a little protections from another component of white blood cells but they were pretty concerned.  He had a ear infection about a week earlier and they seems to think it may be that it was viral and it caused his numbers to tank. They were only 120. So we've been repeating bloodwork every other day to see if it is recovering and to check for some specific viruses that can be pretty harmful for transplant patients. Those are still pending but his numbers went up from 120 to180 then jumped to 480. Which is good but still not normal. So we have to be extra cautious with him in general and around people and no crowds. Which is difficult this time of year because there is so much to do. We had to miss a Christmas party this weekend and He can't even go to school for now. I hate that he still has to miss out on things but it could be much worse. We are so thankful his liver is doing good for now. We repeat blood on Tuesday and hopefully it still recovers and he can resume activities as usual next week!

Thankful

Well this year has been crazy, and I'm not sure where to start
But there's so much to be thankful for
And all of you played a part.

In February, Philip became more sick
and we had some bad news
He needed a new liver
And now there was no time to lose.

It was time for a transplant,
 but so many kids were more sick.
So what could we do
to make his time on the list go quick?

Living Donation, they said
Could it be?
That Dan is a match
We'd have to wait and see!

Everyone sent us good thoughts
And some prayers
We couldn't believe how many people cared.

Then
Late March came around
Dan was a match!
Could this be the moment
That would make Philip not scratch?

It was May 10th
When they both went in
I held my breath
And my head would spin.

Again
You all came to my side
Lifted me up
And filled me with pride

They both did great
We count our blessings
Everyday is a gift
That keeps on giving.


I always worry I don't say Thank you enough for all of the support I receive from family, friends and strangers. Thank you!
I am thankful for my family, friends, Philip's doctors, surgeons and nurses.
I am thankful for every good day Philip has.
I am thankful for no more scratching, no more endoscopies, and no more Biliary Atresia!
I am thankful for modern medicine.
I am thankful for organ donation.
I am thankful.


If you're looking for a way to give back this holiday season, consider registering to be an organ donor. It is the ultimate gift.

https://www.donatelife.net/

6 Months

Six months ago today, we hopped in the FDNY Family transport van for the first time and headed into the city to face the unknown. Emotions were running wild, stomachs turning but we held on to hope and faith that both Dan and Philip would come through with flying colors. And boy has Philip emerged over the last six months as quite a colorful character.
Some things are becoming faded memories, like the waking every hour for itching. And watching videos like this one from the night before surgery, make me remember how marked his skin was and how his cheeks weren't always as big as they are now from the prednisone. He seems like such a baby in the video. He's really grown in leaps and bounds since surgery.

Some people have said, well now you can move on, forget it ever happened, and while he certainly acts like nothing ever happened and Dan feels like nothing ever happened, and I've wished and hoped it would be as easy as that for me, but these types of things stay with you. I live every day with the memory of all the discomfort he had to endure the last three years.
I mean, doctor's appointments are  becoming less frequent, less hospital visits and procedures, less medication, and it seems like everything is back to normal and I revel in every minute of good health, but I will forever have a child that has a life threatening condition. I continue to pull Philip back to me and look in his eyes to see if I saw a little yellow or if it is just the color of the room thats making them look like that. Or is his belly looking a little bigger than usual? Why is he bruising so easily? Does he feel warm? Did I wash that piece of fruit good enough? Did I cook the chicken long enough? When are the next labs so I can have a little piece of mind...
I wish there was some sort of live feed of blood work in him so I can make sure all is going ok all the time.
And as much as I limit my internet searching, the last couple of months, I've read about a few children with Biliary Atresia passing away. It breaks my heart that there are still children passing away from this disease. Some just get too sick too fast before they can get a transplant, and others pass waiting for organs because unfortunately there aren't enough and they are not eligible for living donation.
But with all that said, we couldn't ask for a better outcome so far and we thank our lucky stars every day that he was given the chance to lead a normal life. Prayers continue to be answered everyday, and we continue to be thankful for each and every blessing.

4 months post transplant(don't mind sticker marks from his hospital stay)

 Working on his car

School Picture

Community

I've been trying to find the right words to convey how I've been feeling the last few days but I can't seem to find anything that could do it justice. Words just seem flat and can't convey all of it.
People always say to me I don't know how you do it. You're so strong. But the truth is, you go into survival mode. You do what you have to do to get things done and take care of your child and family, regardless of how you feel or the cost. We've been very fortunate to be able to heavily rely on family and friends for support. Every one of you, our family, friends, and people in the community have lifted us up and carried us through the last 3 years. I can Picture the 4 of us kind of crowd surfing on all of your thoughts and prayers, just rolling over all the crappy stuff. That is how you get through it, and when you get to see it in physical form, it is truly overwhelming.
On October 1st, our family, friends and community came together and had a fundraiser to help us with costs we have incurred and continue to incur due to Philip's illness. It was amazing to say the least. We are so lucky to have everyone of you in our lives. The amount of people who came out and donated, to the friends, family and businesses who donated goods and services, it was truly a beautiful day.
We can't thank everyone enough. Know that we don't take a single thing for granted and all the help and donations are deeply appreciated. Know that we count our blessing every day.
Philip had an amazing day running around, playing with new friends, meeting new people. Watching him be able to run and play and have so much fun fills my heart with so much joy, its hard to keep it from spilling out of my eyes half the time. He loves life and is doing good. He loves school and looks forward to going. We are still trying to get his anti rejection levels back where they need to be but we are on the right track.
I want to say a special thanks to my sister for all of her hard work on the fundraiser and for always being there for me the last three years. Always by side and I definitely couldn't have gotten through a lot of stuff without her. And if we didn't get to thank anyone personally for coming, I apologize.
Massapequa is an amazing place to live and we are very fortunate that so many people in the community showed their support.
Special Thanks to The Heather Pendergast Fund, Massapequa Fire Dept., FDNY 138/289, Anne Marie Roth, Stacey Shortell, Beth Collins, Joe Maneri, Our families, friends and so many businesses in the community who donated. Please consider patronizing them while out and about.
Thank you again!!!

http://www.heathersfund.org

 Philip joining the band

 Enjoying the Joe Saladino Band

The best family pic we could get by the end of the night. LOL

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!

Naivety

I guess being that Philip was in such great shape going into surgery I thought his recovery would be easy simple and we'd be out the door shortly after Dan. And had some issues not arose, we probably would have come home the day after him. What made me think that we would escape any issues? Who the hell did I think I was? 

So naive...

First there was the soft rejection issue that was due to an anti rejection medicine he is on called Prograf, not being the right dose. That was quickly taken care of and so far the liver seems to be doing good. Other than that, The week following transplant was great, then At about 7-8 days post transplant, he started having black stool. Then Philip was restless through one night and woke up in a lot of pain. This is the same kid who never had to use the morphine after surgery and only used Tylenol scarcely up to this point so I knew something must be up. I was sitting in his bed facing him and giving him a drink when he started to gag and vomit everywhere. The whole day he remained lethargic, had cold sweats and was not himself at all. It was the scariest I'd ever seen him before. My mom and sister had happened to come in that day right after the vomit episode

And thank God they were with me. I was a nervous wreck. He was sent for an emergency X-Ray which looked fine and They kept checking his vitals often all day long. They did some blood work and his white blood cell count went up and his hemoglobin dropped. So they were concerned he was getting and infection being he is significantly immuno-compromised. And at the same time concerned he was bleeding in his GI tract somewhere. 

Isn't this part of why we did the surgery to avoid GI bleeds?!!!! What the hell is going on?  The doctor kept coming in overnight and checking his pulse like every hour. They started antibiotics and that seemed to help his white blood count. But they still have no reason for the infection And said the blood count could even Be a side effect of the steroids he's on. The black poop stopped and his hemoglobin went up

So I thought we were on the right track but they returned and his hemoglobin dropped again. There is talk of a transfusion or endoscopy if it continues. Poop is back to normal right now so hopefully it is resolved. They explained that around this time frame, this happens sometimes. Being that the intestines were manipulated in surgery, they are raw and can create ulcers near the connection to the liver. And these bleed sometimes. This is what they believe is happening to Philip. They also think the blood thinners he is on the hell it so there are no clots in the connections to liver is aiding the bleed. So he had to be taken off o those for the time being. They would like to avoid transfusion and endoscopy because there is always a risk of infection and an endoscopy is an invasive procedure. At the same time all this is going on his abdomen is still draining too much fluid called ascites.  He has something called  a JP drain, where a tube is inserted into his abdomen and it drain excess fluid from it. Split livers tend to give off more fluid than whole so it is not out of the ordinary but his body needs to learn to reabsorb the fluid or pee it out. He is not doing that so they are trying diuretics. Unfortunately the drain is also leaking where it is inserted into his abdomen causing quite a mess. They have to change the dressing often and it has irritated his skin so bad. They can not take the drain out or his belly will fill up with fluid and become severely distended. So we wait and hope that the fluid dissipates quickly because that is what is basically keeping us from going home at this point. As well as the hemoglobin. They will re check blood in morning. 

On the other hand, We've had some pretty amazing nurses and staff here. Everyone is so nice and helpful and wants to see Philip do well. 

Philip was eyeing up the play room today but he is not allowed in it with other children. So we were in our room and child life came by and said they cleaned the whole room just for him to have a private play session. They even put a sign on the door. It made him so happy. You could see the rest of the afternoon he was more like himself than any other day. It's going to be a huge transition home because he has become accustomed to my attention and now demands it. I basically can't speak with anyone or he keeps yelling MOMOMOMOMOMOM !!!

And if I try to answer a text or pick up my phone he has a fit. 

Anyway, I hope that one day this week we will be able to come home because if I have to drink anymore ginger ale or eat any more hospital food, I'm going to vomit!

The Big Day

May 10, 2016. A day that we waited for anxiously, nervously, and feared came and went as fast as you can say transplant. 

Me and Philip headed in to the hospital on Monday night to get settled in and have blood work drawn and make sure all was set for the next morning. Philip made himself right at home but he kept saying I want something. When Dr. Chu(his hepatologist) came in, she heard him say that so both she and I asked him what he wanted and he decided on a muffin. A blueberry and chocolate chip to be exact. I told him I couldn't promise I could find one so Dr. Chu said she would ask the kitchen. Five minutes later she came back in the room with a box of muffins from Dunkin Donuts! It made his night! 

We were escorted early the next morning to a holding area where we met up with Dan. It's hard to explain the depth of emotions and anxiety that were going on. Philip fell asleep so he was the only one who was relaxed! There were tons of people asking different questions and saying how amazing what Dan was doing. So we would get very emotional and start crying, pull it together, then Someone else would start saying all these wonderful things and we'd lose it again. 

Then, before I knew it, with two swift kisses, both were being wheeled off into the unknown. 

Dan's coordinator came out a short while later around 8:30 to say they were both sleeping and that Dan had two requests right before he went under for when it was over..."warm food and back rubs". 

Ok, I'll give you "warm" food not "hot"! We were laughing so hard at that. And before I knew it she texted at 11:30 saying Dans piece was almost out! Then around 12, she came out and said Dan would be done in a half hour and they were ready to take Philip's liver out. 

1:30 came and his surgeon came out to say everything went well during surgery and we would likely be able to see Dan in about 2 hours. 

So I ran up to see Dan who looked good. And wouldn't you know, Philips surgeon came while I was up. I missed him by two minutes! He spoke with my sister and said everything went well. His liver was functioning, and he didn't need any blood products. He said it was great timing and that his liver was pretty cirrhotic. And it was going to happen sooner or later and better to do it now while he was fairly healthy and before he went over a cliff so to speak. My sister started crying so I was like why are you crying??!! Then 5 minutes later, it hit me and I was sobbing with my head in my hands in the middle of the waiting room. So much tension released at that minute. I ended up having a headache for three days straight due to all the emotions that day I believe. 

Then it was time to see him. This was a huge fear of mine! We spoke about how he would look very puffy like a Michelin baby and have the breathing tube so  I walked down the hall with clenched teeth waiting to see my puffy baby and as I turned into the room, I saw my sweet sleeping boy and he looked so good. I couldn't believe it. I yelled out "He looks so good!" He wasn't very puffy, he looked healthy, just asleep with a lot of wires hanging off of him. He was still intubated so it was really just sitting and watching him that night and the next day they started to wean him off the sedation so they could take the breathing tube out. 

Which they did around 5:45 on Wednesday night. The first word out of his mouth was scwatch, then I want my baba in a little groggy tiny voice. My heart sank instantly. Isn't this part of the reason we did the surgery to stop the itching and that's what he says first??!! So the itching was not only not gone but it got worse as the night went on. He was scratching like crazy!! I fell asleep for a few minutes and woke up to two nurses scuffling in the room and him crying so I put my glasses on to see him looking at me and he is covered in blood. All over his face and hair like the movie Carrie! I jumped up and they said he's fine mom he just pulled out his "A" line which is a catheter inserted into an artery so they could monitor blood pressure in real time during surgery and then draw blood after. 

So they had to bathe him, change bedding and all of his dressings because he was a mess. I'm surprised my reaction wasn't a little stronger but I had a feeling he would pull something important out even before surgery. So I felt I had to sit up and stare at him the whole night to make sure he didn't get to his central line which was in his neck. The nurse found these cute little mittens or more like boxing gloves for him to wear so he wouldn't get anything else.  

The next day he got to drink water and then eat some jello. His nurse Glynda was amazing. She was so wonderful with him. He didn't like her but she would get him out of bed, go for a ride in the stroller, clean him up, and make him walk.  

Dan was finally feeling well enough to visit the next day. He had a lot of pain and got tired really fast so it was a quick visit. 

By Friday he was allowed to eat, went for a long walk and even got to have a lollipop! And we were moved to a regular floor. 

Over the weekend he started perking up a bit here and there, eating more and being himself. Mostly he wants constant attention and is very demanding! Lol

Everyone keeps saying he looks so good and did this kid even have anything done?! And wouldn't you know his itching has basically disappeared! I haven't heard the word scwatch in 3 days! I'm still crossing my fingers it stays like this!!

Danny came to visit today and that was awesome. He was very nervous at first and didn't want to come in the room because he had to wear a mask to come in. So he hung out in the hall for a little bit then he slowly became comfortable and was talking to Philip. It was so nice to get a huge hug from him.

Unfortunately both Dan and Philip had some jumps in some liver numbers so Dan was not allowed to be discharged today. Philip had to get an ultrasound to to rule out vascular issues and that was found to be ok. We are just waiting to hear word on both so please keep saying some prayers for us. I really need them right now to keep me strong for both my boys.