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.

Dehydration and "Cool-zants"

As you may remember from my last post, Philip had been dealing with prolonged diarrhea for about 8 weeks. We had been doing a pretty good job of keeping him hydrated but last Monday night he came down with a stomach virus and vomited once right after he fell asleep. He seemed fine, didn't happen again so we thought maybe it was a fluke and we all went to sleep. Woke up the next morning and he had a rash all over his back and slept a lot later than usual til about 11:00am. He was yelling that he had belly pain as well. I called his liver team and they said to bring him to the pediatrician. He wasn't very awake during all this time so I knew we were probably headed for the hospital. I got to the doctor around 12:15 and he barely stayed awake while we were there. She tested for strep, thinking it may be Scarlet Fever because of the rash, but that came back negative. Being that he had only been awake for about 15minutes total that day, she said to head over to the ER.

So off I went with Philip, dreading the wait in the ER. I hate the ER waiting room. disgusting germs everywhere. So we walked in and requested a mask right away for him and after the heard his history, they brought its right back without even being triaged. I was so thankful for that.
This is where it gets a little hairy. He hadn't pee'd either that day yet and it was now around 1:30pm.
Then he vomited again. Luckily my cat like reflexes helped me jumped over our bags, into the cart, grab out a bucket and get it under his mouth just in time! Phew. He was asking for a drink and food at this point but I wasn't allowed to give him anything until they decided what they needed to do.
They were concerned it might be intessuception, which is when a potion of the bowel slides into itself, kind of like a telescope. Kids who have had multiple abdominal surgeries are more prone to it.
So they did an ultrasound and ruled that out. Now the fun really began when trying to get an IV in him. They couldn't...
The nurses tried 3times, then they called in a special team and they tried about 4 times but couldn't as well. He was so dehydrated, they couldn't get an IV in. They were able to get a tiny bit of blood to get labs and His kidney function had suffered a bit and I was starting to panic. Then the nurses mentioned something called hylenex.
They inject the stuff called hylenex into the fat pad between his shoulder blades and deliver fluids subcutaneously under the skin and hopefully he would get enough hydration that way to allow an IV to be placed a few hours later.

And they finally did get one in his foot late that night after another few sticks. One of my least favorite places for an IV because he moves so much and they come out so easily. So he got a few hours of fluids and of course the IV came out overnight. So back to using the hylenex in his back.
Apparently word got around about him and how many times he was stuck and how no one could get n IV in him. So no one wanted to come and try again to do it. Anasthesia had to end up coming to do it. If they couldn't get it, we would have to go with interventional radiology and put him out and place a PICC line. But thankfully, he got it! And it was a good one. So being he was still so far behind with fluids that gave him another bolus and gave him fluids at a higher rate than usual.
Funny enough all this time, NO DIARRHEA! Being he was on contact precaution , we couldn't leave the room. So we played as usually on our window sill.

And of course, the IV stopped working overnight. The nurses tried their best to save it but it wasn't savable. So he went half the night without fluid.
When he woke up, he was so puffy from all the fluids they pushed the day before. He could barely open his eyes. My sister came to visit for a bit and he kept asking where his "cool-zant" was.
We just kept looking at each other and asking him, cool cars?, cool zots?, Is it a toy, What color is it. We kept laughing because he was getting so mad and we had no idea what he was talking about and we just kept asking questions and he was so frustrated. Finally I said is it food?, He said yes! I said fruit snacks? NO! He said you know they one with the thing underneath? Then I realized what he wanted. Every morning I go to the breakfast cart and bring back his breakfast on a little plate.
a CROISSANT!!!! LOL We just about lost it. YES! my Cool Zant! Oops, its in the garbage...
He got over it fast though.

The doctors agreed to give him a chance to drink and eat that day without sticking him again.  The fluid retention went away as the day went on. He did great and they let him come home Thursday evening.
Of course when we came home, the diarrhea returned, so we started him on a medications called Flagyl, and so far so good. I pray it stays this way.
I hate that he gets so sick when he gets a virus. Hopefully with the nicer weather, will bring less viruses. He is happy to be home and his labs improved, although we are chasing his prograf level again as it spikes each time he gets a virus. He can't wait to go back to school since his diarrhea is gone for now. He has an Easter celebration in class tomorrow and I hope he will be ok to attend in the morning.
Hope you all Have a wonderful Easter!

C-Diff and EBV

(Warming: If you don't like bathroom stories, don't read, contains graphic descriptions)

This winter has been brutal on us! Philip has been sick with one thing or another for 4 months. He has been getting 2x weekly blood draws and finally can stretch them to 1x week. His white blood cell count (Neutrophils) has returned to the normal range so he can finally go back to school. Unfortunately,  for the past 3.5 weeks, he's been having diarrhea. Yes that's right, 3 weeks! So no school yet for him till we figure it out because the personal hygiene skills of a 3 year old is not something I want to subject his classmates to! lol
I think it's finally slowing down and he tries his best to run to the bathroom, but I really thing he now enjoys the look on my face when he announces that he has sharted, and proceeds to check thing out and say Aww it's so cute! 😳 (Maybe its the fact that I'm a sucker for potty humor and can't contain my laughter when he does this) My silly boy!
It's getting frustrating because I have been putting him in a pull up because I'm done cleaning poo and anything that gets soiled goes in the trash at his point. I don't want him to regress too much with the potty training. 

Anyway, his doctors requested some tests to see if we can see what is going on...
My friends, I pray you never have to collect a stool specimen from your child. 
(Gag)I was lucky enough to have to do it twice in the last 3 weeks. (Gag)
Convince Philip to actually sit on the "hat" in the toilet and then (Gag) pour it into
4, yes 4, separate cups(Gag). And then bring it to the lab. (Gag) So I hid it in a paper bag so no one would have to endure looking at that shit(haha) Your Welcome, fellow waiting room patients. Not to mention the lady at the lab couldn't stop laughing at he fact that I was holding it only between my two fingers out away from my body the whole time. 
Anyway...
His doctors were concerned it could be something called C Diff. because he had been on many antibiotics in the past.

Clostridium difficile [klo–strid–ee–um  dif–uh–seel] (C. difficile) is a bacterium that causes inflammation of the colon, known as colitis. People who have other illnesses or conditions requiring prolonged use of antibiotics, and the elderly, are at greater risk of acquiring this disease. The bacteria are found in the feces. People can become infected if they touch items or surfaces that are contaminated with feces and then touch their mouth or mucous membranes. Healthcare workers can spread the bacteria to patients or contaminate surfaces through hand contact. Clostridium difficile is shed in feces. Any surface, device, or material (e.g., toilets, bathing tubs, and electronic rectal thermometers) that becomes contaminated with feces may serve as a reservoir for the Clostridium difficile spores. Clostridium difficile spores are transferred to patients mainly via the hands of healthcare personnel who have touched a contaminated surface or item. Clostridium difficile can live for long periods on surfaces.
(https://www.cdc.gov/hai/organisms/cdiff/cdiff-patient.html)

Good news is they all came back negative! Both times.

They believe it could be viral and because he was neutropenic for a while it is taking him just that much longer to get rid of the bug. 


During this time his blood also tested positive for EBV. It was a very low level but still there.

Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses.
(https://www.cdc.gov/epstein-barr/about-ebv.html)

EBV can cause some issues down the road if his levels don't go away again.  They routinely monitor for this and they basically expected him to get it because most people do get infected at some point in their lives. He could have been exposed or Dan could have had it and it was in the organ when transplanted. Totally expected though.
To treat this, they lowered his immune suppression medicine, so his body had a chance to fight it.
And it did! His last blood work on Monday came back non detected for EBV. So hopefully the level stays undetectable from now on.

 Philip remains a very happy kid. The diarrhea doesn't phase him one bit. He is happy go lucky and very funny. We are anxiously awaiting Spring when hopefully all these nasty viruses can go away and we can enjoy going back to our normal routine again. Philip misses school!