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 I found a few blogs but so many were years out of date.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.

Happy 4th Birthday!

This hasn't been the easiest year for us or Philip, but in true Philip fashion,

every day he continues to amaze us in every way possible.
His strength, resilience and ability to make us laugh makes me so proud to be him mommy.

His personality continues to crack us up daily and his love for life is inspiring. 

Keep being you Philip! 

Also, his health continues to improve and I can only hope this next year, it continues that way.

Spiritual Connection

I'll start by saying this post will be a little off topic. I usually use it to share and catalog Philip's medical journey but today warrants a little different post.

I never had any brothers, but when I married Dan, I gained two. Over the years they've truly become like real brothers. And they always treat me like a sister in return. I love teasing them to no end. Especially Jimmy's taste in cars. Dan's younger brother Jimmy, is Philip's godfather. And over the last few years they have grown to have a deep spiritual connection.

Let me tell you a little about Jimmy, he is the kind of guy that everyone likes. One conversation with him and you have a friend for life. He had a knack for talking to anyone, even celebrities and getting them to pose for a picture with him more than once. He was the most loving, caring and giving person. When he had a chance to be there when the Pope came he made sure he had Philip with him to be blessed. And when we were getting pushed out of the blessing area, he used those conversation skills to get moved up closer and even jumped a fence so they both had a chance to be blessed. Him and Philip fought their illnesses side by side, several times mirroring each other. When Philip was having his liver transplant, Jim was having his stem cell transplant. He had an enormous smile and even more enormous hugs. In the hospital, there was a pigeon that would come visit his window, usually after a bad moment. And no surprise he showed up yesterday, with a little white flower in his mouth, soon before Jimmy passed. You know I love my signs, and I like to think that he was there the whole time watching out for him and finally was his ride up to heaven. 

Jim was a true fighter in every sense of the word. I've never seen someone fight like he did. And I'll forever be thankful that I was there and grateful for having him in my life and the boys lives. 

I know he'll continue to watch over and protect us and I'll be looking for the signs.

Full Circle

One year ago today, I sat in the waiting room at Mt. Sinai waiting to hear the news as two of my boys underwent surgery that would hopefully change our lives. And it definitely has. It hasn't been the smoothest year, with Philip still having many hospital stays, but his new liver is doing its job and that is a truly amazing thing. I remember a post I made about old worries and new worries, and Now my new worries have found a comfortable spot in my mind like they were never new to begin with.
Philip has been able to do so many wonderful things this year that I'm not sure would have been possible if he was still waiting for a transplant. He plays baseball, goes to school, and even went on vacation to Disney World to celebrate his transplant anniversary. He is so full of life, love and personality!
We had planned to celebrate the day by having some family over and ordering some pizza(Philips favorite) and having some cake. But instead, we celebrated right where we started exactly one year ago today, Mt. Sinai Hospital.
Philip started getting a fever Sunday night, so I called the on call and we decided to let him wait it out overnight and just come in to clinic in the morning as we already had an appointment for Philip one year check up. He still had a fever Monday so he got Tylenol and we headed to clinic. I should have known how the day would turn out because as I headed out that morning, a cardinal flew past my car. I've seen them a couple of times before when Philip has ended up in the hospital later that day.
Dr. Chu had muffins waiting for Philip because she remembered that's what he wanted to eat the night before surgery and she ran to Dunkin donuts to get them for him that night. At clinic he did not have fever so we did blood work and were able to head home to just wait it out. Later that day I got a call that his white blood cell count was again low so if he presented with fever again to call and see what they wanted to do. And he did, so I called, and they wanted him to be seen at the ER. We decided to go straight to Mt. Sinai this time. It is les stressful because his whole team is here and there is no middleman and waiting for people to be contacted. His white blood cell increased while here the second day but then tanked once again. He continues to get fevers that are hard to break. And now has diarreah again.  So since the white blood cell count is low, they want to be extra careful because of the fevers. His blood cultures for bacteria so far have been negative which is good so they think it is some kind of virus but so far all testing is coming back negative. His hematologist came by and They gave him a shot of the neupogen to hopefully kick start his white blood cells again. He also is complaining of back pain which no one seems to know the source of. And now a subtle rash has started. Infectious disease team has stepped in as well to see what they can come up with as to why he's having these fevers. So we just sit and wait til it passes hopefully soon.
Since our plans had to change today, we celebrated the day with some balloons, little gifts and Philip's team stopped by the hospital today and even a couple from Dans team to wish us Happy Anniversary. Dr. Chu stopped as well even though she is not on service this week. She bought Philip a little tiger too. I really love his team here.
As I looked out the window of our 5th floor room today, thinking of the past year and taking in the beauty of Central Park, I caught a glimpse of a fluffy white feather floating past our window. A familiar feeling like a warm blanket came over me And I knew in that moment that we are exactly where we need to be at this moment in time and Philip will be just fine.