3 Years! (A little late)

Hi Everyone!
I am a little behind but I wanted to update the blog because it been so long - almost a year! And Ive always promised to keep it somewhat up to date.
Philip celebrated his 3rd Transplant Anniversary this year and has been doing great! The year was pretty uneventful and he managed to stay out of the hospital and avoid any major illnesses at school. I am still knocking on wood that it continues to be that way going forward.
He was chosen to be the Liver Champion at this past years Liver Life Walk, so that was really exciting. He went on his Make-A-Wish trip to Legoland California, which was absolutely incredible!
He got to sleep in a lego hotel, go to Legoland and create his "mini" self and put it anywhere in mini land. He chose right next to the fire engine in New York City. He also got to go to the Zoo and the Safari Park. So amazing.
He turned 6 this year too. He played baseball and will play football this fall. As scared as I am for him all the time, I try to let him live life to the fullest and try new adventures every chance we get.
He even tried indoor skydiving! It was a little hard for him and his brother to do and they really couldn't do it but I hope they will try again when they get older.

 He will start first grade next week at a new school and I am excited for him to meet some new friends and start a new adventure literally in our backyard! lol
 He will receive some services like Occupational and Physical Therapy through school. I am not certain he needs the services as a direct result of the transplant but I can speculate that his fine motor skills may haven't had the chance to develop as strongly as others because that was around the age when he was in the hospital so often and generally had IV's in his hands and arms compromising him being able to use those fine motor skills. And being that he has had three major abdominal surgeries, his ab muscles are surely compromised and have affected him having a strong core. But that is what is great about CSE services and I am sure he will improve and be on track in no time.
Thank you to everyone who continues to pray for his continued health!
Here's to another great year! Lets hope I don't have any updates til his next Anniversary!

“This is the Worst!”

I get the feeling sometimes that there’s some force out there that sees me get comfortable in our quietness and good health and says No, No, No, wait a minute. Check yourself. Don’t you be thinking you can get all comfortable in your new normalness.
This summer has been full of swim lessons, Family festivals, friends houses and we were loving it!
Yesterday, we headed out to our first LI Duck’s game but Philip started getting bad stomach pains while there and I decided to take him home. He definitely didn’t look good and he could barely walk upright. So I took him to PM pediatrics thinking maybe it was just gas and they referred us to go to the ER. So I called his team and they agreed, so off we went to Cohen’s because it is closer than Mt. Sinai. He vomited once we got there and they took some X-rays and labs and were concerned he had another bowel obstruction. So they inserted the NG tube again in hopes it would relieve some pressure and possibly fix the obstruction. Philip looked at me and said “This is the worst ever!” With tears running down his face. Heart. Broken. This shit just does not get any easier. I had let myself slip Into some fantasy that maybe since it had been a year since he was hospitalized that maybe we could go years without any. Maybe it can still happen but I have to be more realistic in my thinking. This is going to be a life long battle. Transplant is not a cure. It trades one set of issues for another.
 They also wanted to transfer us to Mt. Sinai. So deja-vu almost exactly a year apart, me and Philip took a ride in the ambulette to Mt. Sinai. They did some more x rays but slowly Philip started feeling better and no more belly pains. The thought is that it could have been a partial block and the NG tube relieved the pressure and it was able to fix itself or it could have been just a virus. I am not convinced it was a virus because of how much pain he was in and how he looked. So we are Inpatient now for observation and hopefully they will let him start drinking and eating soon. He is not happy at all with the NG tube and wants it out NOW!! Please pray he stays well and we can come home soon!

2 Years

Today is Philip and Dan's 2 year Liversary! I can't believe its been 2 years already.
And I can hardly believe it's been almost 6 months since my last post. And that's basically because life's been pretty quiet on the health front for Philip. Actually, Things have been pretty great. Its been 9 months since Philip has had a hospital visit; the longest stretch since he was born. It's pretty incredible. I'm getting used to being able to watch him at home instead of running to the hospital. I am waiting for the day when I will feel like I can completely relax and just worry about regular kid illnesses with him. But the truth is, I'm pretty sure it may never come and I'm ok with that.   I still catch myself checking his eyes everyday to see if their yellow. Or if maybe his skin looks yellow. I'm afraid I might get complacent in this new life and miss the signs of rejection or something else. Health wise, His labs have been great the last 6 months. Unfortunately because he's been on antibiotics so many times, he recently had a bout of C-DIFF that resolved quickly. I hope that never comes back but he is more susceptible because he has been on antibiotics so many times.
We are enjoying expanding Philip's world and taking him more and more places. He's experienced so much the last 2 years that I always wonder if he would have been able to if he didn't have transplant. How sick would he have gotten? I shake that thought off often. I thank God everyday for living donation and Dan for giving Philips such a precious gift. And I continue to thank family and friends who continue to offer prayers and all kinds of support, 2 years later.
Here are some of Philips adventures over the last 6 months. He is such a fun kid. He has a great personality and just loves living life to the fullest!

We went to Mt. Sinai transplant kids party!

Built rice krispie treats

Got to pick favorite gifts from the grab bag at Christmas.

A Vegetable Spiralizer!

Went to Monster Jam

Played at he park

Learned fly a plane at the Air Museum

Played in the snow

Planted Dune Grass

Had a normal kids illness

Marched in my baseball parade

Went to a transplant service at St. Patrick's Cathedral

Got the game ball at my baseball game

Withdrawals

(Knocks on wood)
If you've read my blog before, you know I hesitate to actually write how good Philip is doing because almost every time, I jinx it and he ends up being hospitalized for something.
But when I started this blog I made a promise to myself, to keep it as up to date as possible.
When we first learned Philip had Biliary Atresia, I scoured the internet for hours, looking for personal experiences, outcomes, whatever they may be. I found a few blogs but so many were years out of date. I longed to see how these kids were doing long term. Did Philip have a chance at a normal life? What was in store for us?  So often I would only see the worst stories and outcomes. And that's the kicker about Biliary Atresia, no kids journey is the same. It is so hard to talk and compare your child to others because all of their paths are so different. There is no set path. I only hope this blog can be a little glimmer of hope for a parent with a newly diagnosed baby.

Last week Philip had liver clinic for his 1.5 year post transplant appointment.
One and a half years...can you believe it?
We've had a good few moths since his bowel obstruction and haven't needed to contact the doctors for much since then.(Knocks on wood again) I should get used to carrying around a piece of wood with me the way I've been knocking lately!
Dr. Chu said she always asks Fiona(Nurse Coordinator) if she heard from us. She said they were going through a little bit of withdrawal from hearing from us. But she said that's wonderful. That is what they hope for. They need to take a step back and hope he is doing so well that they don't need to hear from us. He had labs done and his liver numbers are great. He needs to repeat blood work in 4 weeks because they couldn't get a few labs they wanted. I'd say Philip has had hundreds upon hundreds of blood draws over the last 4 years and they never get easier! He is getting stronger and fighting harder now. He wiggled and squirms and it usually take a few people to have a successful draw. We don't have to go back to clinic though for 3 months! He generally has no restrictions, although we had planned a trip for Great Wolf with Danny's cub scouts and she said its probably not a great idea for Philip to go. The water can be a host of many bacteria and we know when he gets something, it hits him hard. They would like him to wait a little longer. Its never easy having to make decisions about cancelling trips or figuring out whether to leave one out. Its not fair either way to either of the boys and its something I struggle with having to decide.
I've been having some other feelings too. Except mine are more of the feeling of waiting for the other foot to drop so to speak. When things are going good, its hard to get fully comfortable in that space. I'm so afraid that as soon as I do, something else will happen and we start all over again.
In the meantime, we will take every healthy second and not take it for granted!
Philip started Pre-K and played soccer over the fall. I really can't imagine how he would be if not for transplant. There's no way he would have been able to participate in normal activities that he has been able to do so this year.
We remain thankful to everyone along our journey and for organ donation!

If you won't do it then I will...

GASP! SUCK! GASP! GAG!
This is the sound I heard 3:45am this morning. I woke to Philip gasping and gagging. I got up so fast without my glasses, grabbed a bucket (good thing I didn't grab a bed pan Haha) and ran to his bed, sat him up and put the bucket under his mouth just in case he was vomiting. I thought, oh boy here we go.
I rang the call bell, grabbed my glasses and it was then that I realized the tape came off his face and his NG tube was half way out. He continued to gag as the nurse came in, and I showed her. She turned the suction off and called the resident in the room. The tube was probably suctioned up in his esophagus and that's why he was gasping. The resident tried to push the tube back in but Philip said "I don't want that" and starting fighting the doctor and in the flailing of hands, he managed to get himself in between the hose and with a swift arm swat, the tube came all the way out! Like he was saying, if you don't take this out, I will!
Thankfully, they decided to see how he did overnight without it and he did ok. Surgery came in this morning and being that he finally pooped and did ok overnight they allowed him to start a clear diet. Woo hoo for chicken broth and jell-o! So now we wait to see if he can advance further to a soft diet tomorrow.
We also had a special visit from Danny today! It's hard to really know how Danny handles all this stuff with Philip and me away for so long. He just goes along with what needs to be done, but he finally told Dan that he hates when we are in the hospital and he has to go back and forth to everyone's houses. To be honest, I never though it bothered him much because he never says anything. I feel so bad that I've kept him away from the hospital settings for so long now. He's visited occasionally in the past but Maybe I should have let him come more often. I guess I've always relied on the fact that it's easy for me to trust he's taken care of  with mine and Dans parents. And he is, and he loves them but now I see how deeply it does affect him.
He was so happy today. We were able to go out to lunch just the two of us. He and Philip played and Philip was able to bring him to the playroom and The Zone today. It really lifted Philips spirits. It was so nice to see them smiling and laughing together. Danny didn't want to go home. He declared that he's coming back everyday this week!

Obstruction

Well, it's been a crazy few days since the last post. Unfortunately, Philip did not improve overnight on Monday so Tuesday, they decided to do a CT scan. He continued to vomit green bile and Because he couldn't keep anything down and they needed him to take some oral contrast, they inserted an NG tube which goes up his nose into his stomach. They were able to suction his belly for a while and that made him feel better too. At this point they started thinking he had a bowel obstruction. The first treatment for that anyway is to decompress/suction with the NG tube in hopes that if it was an obstruction it would correct itself. So inserting it was helping either way. He had his CT scan done and indeed they found an obstruction.
His team from Mt. Sinai were contacted and they wanted him transferred that night. So me and Philip  got a special ride over in an ambulette. Wednesday was a lot of the same hoping the decompressing would help. Unfortunately the surgeons looked at the scan and believed it needed surgery. So we were told surgery would be Thursday. That morning the 1 of 2 surgeons who can perform Philips surgery he needed, was called for and organ procurement. And that surgery when he got back was a 20hour surgery that had to take place, can you imagine 20hours!!! So they weren't sure if they could get OR time in order to squeeze Philip in around that major surgery with the other surgeon.  So last minute they came up to our room and said he's going down in about 1/2 hour. As soon as he saw them come to the room with the other bed to take him down, he said I feel better Mom. He knew something was up. He was very nervous and scared going into the OR and because he hadn't been suctioned while we waited, he threw up all over himself. They had to change him and the OR table. Surgery went well and basically he had a "blind loop" of intestine that attached to another part of the intestines. A blind loop is kind of a little pouch that forms to the side of the intestine and his little pouch drooped and connected to another part of the intestine. So they detached it, cleaned off the pouch and cleaned up the adhesion.  There is a little speculation that this had been happening intermittently and could have been the cause of the long diarreah stretch he had a few months back. He is quite uncomfortable but woke up this morning wanting to walk to the play room. So we sat him up and he took two steps and he realized it was a little too much for him just yet. He's a little too scared to try again but he'll sit up in bed and play a little before he gets tired and wants to just lay down. So now we just wait for his bowel function to restore which means yes, I am basically sitting around all day waiting for him to fart. LOL
After that they can take out the NG tube and he can start eating. He hasn't eaten anything really since Sunday. We were playing before and any food commercial that came on he would say hold on a minute I have to watch this. He watched one commercial and kept licking his lips. He said Mmmmm. Garlic Knots. I like garlic knots. Bud, you can have all the garlic knots you want when we get home. You've earned it! He's such a trooper and continues to give little smiles through the pain.

Jinx

Every. Single. Time.
Seriously. Every time I say anything about the fact that Philip is doing good, I jinx it.
After a nice day celebrating Philips birthday. He was up on and off the whole night with belly pain.
Then at 5am it began.
He proceeded to vomit every 20 minutes or so for the next 4 hours.
I knew the call had to be made and we were sent to the ER for Fluids.
The poor guy had belly pain all day. They ran every test, X-ray, ultrasound and blood work and all came back ok. They seem to think it's just a stomach bug, but if you ask Philip, it's from the nose of the angry bird cupcake I made him for his birthday!!LOL
So since he was still vomiting at 7:00pm and not able to keep anything down, they kept us overnight.
They are giving him some bowel rest, which means no food and limited drinking. We are hoping with the rest, he improves and we can go home. If not, they worry about something called intessuception, which is when a part of your intestine slides into itself kind of like a telescope. All imaging points to that it's not that but if he doesn't improve we'll have to think that it's a possibility. So please keep praying for Philip and that he improves overnight.