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. 

Old Worries, New Worries

I just put the boys to bed, and me and Dan were having our usual powwow about how we can't believe its so close. (I'm even hesitant to write anything because Ive been so paranoid someone will get sick beforehand, I can't keep enough anti bacterial in the house or on me. I'm driving everyone insane. )Anyway, back to the story.  So Dan said this is the last night at home before it, and it hit me. I could literally feel a sucker punch in my gut. I just put Philip in his little Thomas bed and it will be the last time pre-transplant. Next time we will spend the night at home, it will be a completely different ball game. Old worries will hopefully vanish but new worries will take their place. And to be honest I am terrified of the new worries, I'm comfortable in my old worries, I know what to expect and what to look for. But with the new worries I know he will have such a better life, and that makes all the worries in the world worth it.
It's a change we welcome as His itching has gotten even worse over the last couple of weeks and we can't wait to give him a chance to be itch free.
I Can't wait to say Bye Bye Biliary Atresia! And all the nastiness that comes with it.
At the same time, I find myself a teeny, tiny little bit sad. I've grown to love his little belly over the last almost three years. A little rub or pat here and there is one of my favorite things to do.

His scabs have been a part of him for so long I've grown to love them when most people look at them in disgust. Him saying "Scwatch" too many times a day to count is such a part of our daily routine I can't imagine life without it.

 But I can't imagine him living like this even more than that. And I am so excited that he will get the chance to hopefully experience that in such a short time thanks to Dan.
And speaking of Dan, how can I even put into words what he will be doing in a couple of days. I know there was never even a second thought to help Philip. He is amazing. I can't thank him enough or tell him how much I appreciate him. I know it is going to be a little rough in the beginning but he has held me up through the last few years so I know this will be nothing for him to get through. I usually rely on him for stability through these things and As crazy as I've made him over the last couple of days, I promise I will be strong enough for all of us.
And Danny, is the best big brother ever. I know he's scared  and he doesn't want us to be away for a while but he just goes with the flow and does whatever we need him to do. He's is such a great helper too. I hope knows how much we love him and what an important part of our family he is.

Thank you to everyone for all the continued support and prayers. I believe they have worked thus far so please keep us in your thoughts on Tuesday. I will try to update as I can.

Things I've learned while raising a kid with Biliary Atresia

Transplant is about a week away and I find myself reflecting on the last couple of years and what we've been through. I've been very emotional and anxious just waiting for the day to arrive. The blog has been a place I can come and let out my feelings and hopefully share my experience with others who may be in the same situation, but I can't really find the words to share with you how I'm feeling right now and I'm not sure there are any that are appropriate. Instead I am going to write a little about what I've learned over the last couple of years living with a kid with Biliary Atresia.

Not in any particular order.

1. Biliary Atresia Sucks!

         Not much more to add to that.

2. Google is your worst enemy!

         From the minute you hear those words Biliary Atresia, you will google the shit out of it.

And with all the medical pages you will happen to find every worst case scenario story with it. Websites, blogs, Facebook pages and groups, and the more you read the more you will drive yourself crazy. I took advice from our GI when she heard I was googling and joining groups on line. She said please stop! You will mostly find stories of the sickest of the sick and worst case scenarios so please try to limit yourself. Don't get me wrong, these pages are full of the most amazing kids and parents fighting to have a normal life but I found myself obsessing over them thinking all of these things will happen to Philip and becoming depressed. So, I limited myself and I joined only one group on Facebook and it is a great place to ask questions and get support from people in similar situations. But I don't dig anymore than that. I know my limits and I just mentally can't handle it. 

3. There really is no rhyme or reason to the   disease. Every kid is different.

         There really isn't. One kid may have the Kasai and never have a problem till they are 18 years old. Another might have the Kasai and it will fail immediately, making the child need a liver transplant quickly. Some kids like Philip's Kasai works ok but their liver sustains damage over time causing other issues like portal hypertension and GI bleeds. Some kids just itch. Some need feeding tubes, some don't. Some have major vitamin deficiencies, some don't. And just because it happens to one kid, it doesn't mean it will happen to yours. Who knows why it manifests in such different ways. Just focus on what might or might not happen to your kid, just take it day by day and deal with the next issue as it comes. 

4. While your world feels like it is crumbling, life goes on for everyone else.

        From the minute Philip was diagnosed, I felt like the world was crumbling around me. All my hopes and dreams for our little family of four were forever changed. Yet everyone around me was still living their lives like normal. Going to work, going on vacation, doing things that I had to put on hold for a little bit. I wanted to yell at everyone and make them feel the pain I was feeling. Don't you know what my newborn son is going through and you are just standing there like everything is fine!!

Looking back, I'm not sure what else I expected. Life does go on and it eventually did for us as well. Back to work, activities, and even a little weekend vacation thrown in. You'll find that some people might avoid you or not know why to say, friends you thought would come visit the hospital might not. Don't take it personal. They're probably uncomfortable and don't know how to deal with it, and that's ok.  I don't hold it against them. Heck, I don't know what to say sometimes when someone is going through something difficult. 

5. Trust your gut!

         If you feel something isn't right with your kid, trust your gut and bring it up to the doctor. Most of the time you will probably be right.

6. Speak up!

         This was a hard one for me. I am typically a shy person when it comes to asking questions or confronting someone. If you're not sure of something or something doesn't seem right, whether it be medications, hospital stays, anything, please speak up!! If you're not comfortable with your childs care, speak up! In hospitals there are nurse managers, patient advocates, a lot of resources to use if you're not comfortable with a situation. Ex. We always have a bad experience when residents try to take blood from Philip, so now I speak up and request transport or phlebotomy to do it. They may think Im being pain, but I am saving my son from undue pain.

7. Be Nice 

        I know this sounds obvious, but when you are in the moment and frustrated because your child has been crying for 2 hours and they can't eat, or when I get another hospital bill for $4,536 when the same procedure was covered last time in full, it is easy to snap at the person you are speaking with. But I have found when I am super nice on the phone with billing issues they are nicer in return and willing to help a lot more.  I'm guilty of it but have learned to just smile through it all. Even a simple chat with housekeeping can make your day brighter.  

8. The nurses are your lifeline

You will most likely see your nurse more than anyone in the hospital. They bring the food, the medicine and basically everything you need. Appreciate them and cut them a little slack if they take a little longer bringing you something you requested, they are often over worked and under appreciated. 

9. Make time for yourself (and significant other) I know we feel like we need to be there 24/7 for our little BA fighters, but we need time too. Don't forget to take care of yourself. Go get a pedicure, go to a movie, get lunch with a friend. Get out and take a break. It's OK. And don't forget about you're significant other too. Go on a date night and talk. Don't stop communicating with each other!!

10. It's OK to laugh

This is the most important to me. Yes things might suck and you feel like you want to throat punch someone but its ok to smile and laugh even though your child is sick. I completely feel that they feed off of our energy and if they see us laughing and smiling, then they will know everything will be ok. 

Dan and I try to find the humor in most of our situations. They might be politically incorrect and just wrong on so many levels but if something makes us laugh and gets us through a rough time and lets us forget about all the crap going on, then I'll laugh at it.

And just like that...

A date is set.

May 10, 2016. Seems like a pretty normal date, and to anyone else it will still remain just another day in the life. Another day to go to work, or a baseball game or to eat pizza...

But now, this date for me, will mean something. A re-birthday of sorts, a celebration, the day my husband gave my son a chance to live a better life. The day I watch not only one but two people I love dearly be wheeled/walked away to the operating room. It's really a crazy feeling of excitement, fear, and anxiety all at once. Excited that Philip will be on a road to good health, fear that all may not go as planned, and anxiety, well, you name it and I'm anxious about it. 

If all goes as planned Philip will have about a 2 week stay and Dan will have about a week stay at the hospital. Both livers should start growing back right away with Dan's being pretty much 80-90% regenerated by 6weeks post surgery. His body will use all of it's energy trying to regenerate it so we anticipate him being very tired after surgery. He also needs to take it easy for several weeks. They will not clear him to go back to work for 12 weeks and then they will see how he is doing to put him back full duty or not. I will take several weeks of as well to care for them and to get Philip's medications down pat and full understand them. They said he will probably be on about 9 medications coming home from the hospital. 

It seems as if time is moving faster now and this now special, precious date is just around the corner. We have a lot of loose ends to tie up before surgery so days are full of calls to insurance, doctors and other various entities. Both Philip and Dan go for pre surgical testing May 2.

A lot of people have asked how I feel about a date being set and basically My whole mind and body is just a constant buzz, often accompanied by chest pains, heartburn and the BG's (bubble guts as Dan affectionately calls it).  But generally, all I can come up with and say is shit's getting real...