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 I found a few blogs but so many were years out of date.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

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!

What a Day!

OK so I have to start by saying, seriously this shit actually happens to us. I really am not lying. You wouldn't believe the day I had. I drove to city this morning with my Dad and Philip started screaming half way there of leg pain. There wasn't anything I could do so, we drove for half hour of him screaming in pain. We get there, he gets out of car and is a new kid. Walking fine, no complaints. So we do bloodwork, then run into pharmacy down block to get tylenol to help with leg pain, and of course he has to go to the bathroom but they won't let us use it. Se we had to walk back to hospital for bathroom. Gave him tylenol and the ride home was pretty good but again starts complaining the last few minutes of leg pain. Get to my Mom's and again seems fine when we get out of car. I leave him at mom's for a bit to run errands and she texts me that he's complaining of belly pain and gagging. So I drove right over and he's itching and scratching all over, blotchy and crying in pain and pointing to his chest bone and stomach. I call hematologist and she said it's most likely bone pain from the neupogen shots. No more shots till Monday when they recheck blood. I then call liver team and liver numbers still creeped up a little bit too. Bump up Prograf and hopefully Monday they will go back down with labs. Then my mom starts talking about what he ate  and said he had a bite of a Reese's peanut butter cup. So now I start thinking, itching, belly pain, gagging. He's never had peanut butter before! Hurry up, give benadryl right away, drive to pediatrician. When we get there, they ask if his throat hurts and he said yes, so that with belly pain, they swab for strep throat and whamo strep throat! 
And yup its an allergic reaction to peanuts.
WTF! Why can't this kid catch a break!!!

On second thought...

You would think I'd be used to the merry go round of Philips health by now but it still stings when things change course again and again and we have to find our footing again and again. So when his repeat bloodwork last Thursday came back and of course his neutrophils are low...again (sense a pattern here...lol) I shouldn't feel so frustrated.

So today, it was back to the hematologist to repeat bloodwork and again his neutrophils were lower. Although other number were improved and she feels like his bone marrow is recovering, she decided to start him on neupogen shots. So they gave him his first shot, which he fought...hard. The poor nurse ended up sticking him twice because he kicked so hard out of my hands he moved his leg just as she got it in and it came out. We also had some teaching to do the shots at home. We went to pick up the prescription and of course it needs prior authorization so we can't get the medication until possibly tomorrow if we're lucky. So now we have to go back into the city to get his second shot tomorrow.
We also stopped in quick to visit with his Liver team. Unfortunately, we are STILL trying to get him back into his target range for his FK level(prograf anti rejection medicine) . It keeps coming back low, and his liver enzymes have creeped up just a bit. Hopefully this weeks enzymes will have recovered a bit with a higher dose of medication and not an indication of rejection.
And I decided that I will now return to the city to get his bloodwork on Thursday because labs here take way too long to get levels back, and in turn it's that much longer to fix his dose if needed.

It makes me angry to think all of this is most likely caused by him having back to back to back viruses. 

I have constant emotional motion sickness. His numbers are good, oops now their bad. Oh looking good again, Woops. Nope. Fool you.
I want him to be a normal kid and be able to do things like and with other kids. They specifically mentioned to be careful of the flu and don't let him around people who have not had the flu shot. How can I possibly monitor that? How do I know if all the kids in his class had the flu shot? Or that their parents didn't send them to school sick. The whole things is just so frustrating, but things could always be worse, and we continue to be thankful that he is pretty healthy and so happy go lucky and is one resilient little guy. And it makes me feel bad writing and complaining because he makes you really think about life and how much pain he can be put through and still smile and laugh and make us laugh all day long. As young as he is, he definitely has purpose in this life and watching him makes me strive to be a better person every day for him and Danny and to appreciate the small things.

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!