Dodging a bullet

After Philip's last hospital stay we followed up with his hematologist at Mt. Sinai. His nuetrophil count as well as his hemoglobin remained low and they wanted to start him on a shot called neupogen, to help his bone marrow produce more white blood cells. But they also felt the possible need to explore a little further to make sure his bone marrow was working properly before they started the shots. Although the white cells did increase a tiny bit from prior blood work it still remained low. So when we saw them last week they scheduled a bone marrow biopsy for today and planned to discuss it with Philips's transplant team. So we got a call Wednesday that they discussed it and decided to go ahead and give him the shot and wait and watch before doing the biopsy. Phew I felt much better about that plan. They also mentioned that if he does get sick again they would like us to go to Mt. Sinai instead of Cohens. His prograf levels skyrocket every time we are there and it takes forever to get levels back and we end up chasing the correct dose after discharge. Dan and I had actually discussed that before they asked and we would be much more comfortable there anyway. 

So we got to clinic today and got some labs drawn before they started the shot. While we waited with Philip in the playroom, she came over and sat with us and said "Well I guess all I have to do is talk business with Philip and he makes white blood cells for me. His count is in the NORMAL range!".

Wait, WHAT? LOL His numbers are normal!! No shot?! This is amazing! And wait, He can go back to school?!! Yup! 

When we told him he could go back to school, You could see he was so excited too. Maybe he just fed off of our excitement but he was squealing and talk, talk, talking away. He said mom I'm so proud of you! Which usually means he's excited. I am so excited for him.

I also got a call that his prograf level was low, so we adjusted his dose. I'm hoping that his numbers didn't increase just because his level was low. 

I hope things continue in the right direction and I can't wait for him to go back to school on Tuesday!

Fingers crossed he stays healthy from here on out! 

Guilt, Fevers and a New Year

As the new year begins I can't help but reflect on 2016. It was a scary, exciting, frustrating and fun year. I watched as Philip and Dan get wheeled into a surgery that was sure to be life changing. What we feared for a couple of years was actually unfolding right in front of us. We could move on and Philip could live a more normal, comfortable life. And it has been all of that for him but at the same time, he's had more hospital visits in 2016 than the year leading up to transplant. The itching has been  long gone and I can barely remember waking every hour at night to comfort him. But in its place, immuno suppression has shown us that life after transplant is still challenging but just in different ways. He's been struggling with low neutrophil numbers which make it hard for him to fight infection and keeps him from attending school.  It makes living a normal life a little harder. I am nervous about bringing him anywhere or who he comes in contact with. I thought hospital stays would lessen but most recently found us in the hospital for two consecutive stay with only a week or so break in between. We prayed so hard for Philip to be home for Christmas and were blessed that he was able to be there.
One issue I personally struggle with is a situation that came up this past week. A good friend was getting married in Florida and I was asked to be a part of the wedding. There was no question that I wanted to be there for her so I planned my trip several months ago. As it got closer we prayed Philip would be ok for me to go and luckily he came out of the hospital the week before and he seemed to be doing well. In the back of my mind though I was worried something would happen while I was gone. I had overwhelming guilt for wanting to go away and be with my friends to help celebrate but at the same time felt bad that I was leaving my family in a precarious situation.  Dan and I talked about it at length and decided we too had to live our lives. We can't sit and wait for things to possibly happen and potentially miss other important events in our lives. So I headed to Florida On Wednesday to start  a week of celebrating my friends nuptials. Dan had to work Thursday so the kids would stay at my parents house for the night.  I was having so much fun hanging out with some of my favorite people and then Thursday night right after I went to sleep, I got a call from Dan around 12:45am. I knew immediately what the call would be. Philip had a fever. Well, I've never felt guilt so bad in my life. How could I have agreed to go away and have fun when my poor baby is sick and on his way to the hospital. Guilty for putting my parents in that situation and for Dan being all alone at the hospital. Dan had to leave work and meet my parents at the ER. I must be a terrible mother for doing this. How selfish of me. I immediately started looking for flights back but Dan said to wait a little bit and see what some blood work said. Again all signs pointed to a virus. The wedding was Friday So we decided that I could wait it out and go to the wedding. If I went home I would just be sitting there doing the same thing Dan was. I would be flying home Saturday anyway.  There wasn't much time to make a decision as I was up til 3am waiting to hear some info and we had to start getting ready at 8am for the wedding which I think helped make it a little easier to say ok I'll stay. And it was an amazing day. I was so happy to be there for my friend and to help her celebrate and I will never regret that. I face timed the boys in between and was able to relax and have a great time. Looking back now that I'm home, I don't think it was selfish. I am allowed to look forward to events and want to spend time with friends I don't get to see often. Philip was in good care, they knew what to do if this happened and it played out exactly as if  I would have been there from the beginning. So I flew home Saturday and came straight to the hospital from the airport. We always joke that a holiday is coming so get ready because Philip will be getting sick any minute and no joke, We spent New Years Eve in the hospital this time. This stay has been very similar to the last weeks stay. Headaches, diarreah, irritability, high blood pressure, high prograf levels, dehydration. He is finally starting to act himself and eat something so hopefully we will be able to go home very soon. It is so frustrating that if he was a normal healthy kid, no big deal, he'll just be sick for a few days but any little bug Philip gets, it hits him hard and we get a hospital stay. It can always be worse though, we've seen families that are still here from last visit.
So here's to a happy and healthy 2017! Can't wait to see what it has in store for us!

'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