Blessings

Faith is a funny thing. Most people have a strong pull either way. For me, it would come and go, always being tested on a daily basis until a recent event pulled me, no, shot me out of a cannon into certitude.
I'll start by admitting that I had been having a hard time lately. Philip is doing great health wise but he has some habits that need to be broken. He is addicted to his bottle and while his new medication for the itching seems to have helped a lot, he still wakes about 4 times a night yelling "OW, MOMMY, NO, CAN'T, NO MOMMY". I am just at a loss. I don't know what to do for him anymore. So with all that waking for scratching and bottles (and changing sheets because he drinks so many bottles) I am not really myself lately. I'm short with the kids and Dan and exhausted and just plain not 100% at anything I do. I was questioning my faith a lot. Asking for help and guidance and patience.
God, Give me a sign please!
...And I got it BIG TIME on September 24th.
My brother in law Jimmy, was able to get us to the airport to watch the Pope land in New York and had hopes of getting he and Philip Blessed by the Pope. Jimmy is battling Hodgkins Lymphoma. It was an exciting day that started with us being screened by the secret service. Me, Dan, Danny, Philip, Jimmy and his wife Tara all walked onto the tarmac and began to wait for the Pope's arrival. We saw the White House Helicopters and some Osprey's and Watched the airplanes take off and land. About 45 minutes before the plane landed, Jimmy and Philip had to switch areas in order to be in place to be blessed. Philip wasn't cooperating to the fullest, so I had to tag along with him and Jimmy. We made our way over and were stopped to do interviews with CBS news radio. Thy asked why we were there and what we thought of the Pope. I was so nervous I had no idea what to say! So I talked mostly about Philip and his situation. After that, we moved into the Blessing "pen" (for lack of a better word). We were standing on the edge of the crowd and somehow got pushed back out of and behind the blessing area. I thought the chance of them being blessed was out the window but Jimmy somehow made conversation with two gentlemen in front of us and it turned out one man's wife is a principal in our town and in a school that Tara worked at! Small World. It turned out they knew someone in charge and he came over and said the best he could do was have us walk to the other side of the pen and squeeze to the front and Give Philip to these two women in red shirts and they would hold him. Jimmy would not be able to get into the area. So we made our way over and squeezed our way up and handed poor Philip over! He was so good for a while then he started getting agitated. The ladies wanted me to hop the fence and come up there with them. I said No Way! I don't want to get shot by secret service! LOL The people around the area were so friendly and helpful it was amazing. Thankfully after going back and forth a few minutes, Jimmy agreed to hop the fence and be with Philip. During all this commotion the plane landed and the Pope was making his way over towards Jimmy and Philip. At this point Philip had enough. He kept screaming and crying and yelling for me. But Jimmy kept him with him and Pope Francis approached them laughing. Maybe because Philip was screaming so much! LOL Jimmy told him about them both and someone translated into his ear and he blessed both Jimmy and Philip. He even kissed Philip's head. The tears just poured out. There was No stopping them. Everyone in our area was so excited and emotional for us. It was incredible. After the Pope passed us, Jimmy handed Philip over the crowd back to me. You could see him crowd surfing on the news. LOL We walked back to our family and told them what happened. They were in awe! They couldn't believe it. I STILL can't believe it. Thank you so much jimmy for making such an amazing moment happen for us.
It was an incredible experience and one that I will hold in my heart forever. And when things get a little rough and I feel myself starting to question my faith again I just have to look at these pictures and know that without a doubt there is something greater out there and is watching over me and my family.

 

Sweet Relief

Wednesday, we headed to the hospital for Philip's endoscopy and colonoscopy. His stool had tested positive for blood so we wanted to investigate further to learn the cause of it. Whether it be varices or a milk protein allergy. 

So Tuesday, I miralaxed him up and battened down the hatches and got ready for the shit storm about to hit. (hahaha-I'm a sucker for potty humor).

He did great and only gave us a hard time overnight because he still wakes for his comfort bottle(s) when he wakes up itching. 

He also did great at the hospital and because they were running behind he only started to get cranky the last hour really. He kept asking for a snack or a bottle or a cup and saying I want to go home and head for the door. Poor thing. I felt so bad I didn't know what to say to him. Thank God for Child Life at the hospital though. They were very efficient in distracting him long enough to get through that hour even though he would intermittently get up to "go home". 

He was pretty agitated by the time they were ready and the anesthesiologist said he could give him something to calm him down before hand but it would take a little longer and they would stay in his system longer as well, or we could just bite the bullet and bring him in crying and the big breaths would help him breath in the anesthesia quicker. Child Life managed to distract him one last time and we walked down to the procedure room with her walking backwards with the i-pad and me holding him.

The anesthesiologist allowed him to pick a flavor for his mask this time and we picked watermelon. So I sat him on the table, and the anesthesiologist showed Philip the mask and had me smell it to show him, then on went the mask and the crying began again. One quick minute and he was sleepy. It always hard to see him go down like that but I try to never let him see me worried about it. I want him to see me smile and kiss him and say see you in a little bit! 

Both procedures went well and to our surprise they didn't have to inject any varices again! They are still there but still only Grade 1 which means they are not large enough to be treated. The colonoscopy went well too. He had some irritation and varices and she took biopsies, So we will wait to hear in about a week about that. We were able to see him right away and go home soon after. It's always such a relief when we get to go home right away and he gets to eat and drink normally. This also means we can wait longer between endoscopies now. He won't have to get another one for 6 months.

We also got blood work done and His platelets went up to 91,000 which is good. But his total bilirubin went up to 3.1 and his direct bilirubin went up to 2.6 from 1.9 in June. He's fluctuated in the past but mostly has stayed about the same for the last 6 months. Some other numbers were elevated as well so we will have to see what happens with the next blood work. I guess at some point it will start to trend upward as the disease progresses but I just pray it goes back down and it was just a blip on the radar.

So for now we will savor the feeling that we were able to come home and in his full night of sleep last night; even if it was just one sweet night...

Happy 2nd Birthday!

Happy 2nd Birthday Philip!
Its been a wild ride and we can't believe its been two years since you came into our lives.
I am so happy that your health remains stable and we can enjoy your birthday like we should.
You are such a fun and silly little boy. You love your cars and doing anything that Danny does.
You like to bust everyones chops and laugh when you know you are doing something wrong.
We love you!

Status Quo

I've been finding it hard to decide what to write lately so I haven't written at all. I've been comfortable with the way things are going and am a little afraid of jinxing us if I talk too much about how well things are going. We've all settled into our summer routine, Danny and Philip are becoming best buds and Philip's health has been amazing the past few months. His last bloodwork came back pretty much the best it's been in a while. His total bilirubin has gone down to 1.7 and his GGT(which indicates irritation in the biliary system) is for the first time ever in normal range.

This threw the doc for a loop and she thinks it could be a lab error but we will wait to see with his next bloodwork. His last endoscopy also went great. They didn't have to treat anything in his esophagus so we get to wait three months before repeating. All of this is great stuff and we are celebrating every second of our "normalcy" lately.

Yet, I cant seem to shake this anxious feeling I get every now and then. I'll be sitting at work, or in bed at night and a feeling starts to creep in. Kind of like that nervous feeling when you're on a roller coaster and your making your way to the top of the hill, leaning back looking at the track in front of you, waiting to reach the top, then you see nothing but sky and you know its coming.
That feeling.
The drop...And then it happens.
But instead of my stomach being left at he top of the hill, it's my heart.
A little jump, a skip, a palpitation. Call it what you will.
Maybe its because I know how quickly things can change and I am enjoying how nice things have been lately, or because I recently have been following a story of a little boy who is the same age as Philip with the same disease who urgently needed a transplant. I just cant get it out of my head.
I try not to show my anxiety too much in front of the kids because I know they can sense these things. I must not be doing a good job lately though because Danny is showing signs of anxiety for Philip. He recently confided in me that he had a dream that Philip ran into the street and just missed getting hit by a car. And he's become very protective of him when we are outside and Philip takes a few steps away from us. He runs and yells for Philip to stay and grabs him and tries to pull him back. This breaks my heart because I am the one supposed to be worrying, not him. His job is to play and have fun and it makes me so sad that he thinks these things. The doctor said its normal for him to have these feelings because he cares. He knows Philip is sick and he doesn't really know any other way to express his feelings about it. And she re-iterated to him that its ok to have these feelings but its Mom and Dad's job to worry, not his.

We see Mt. Sinai and have his next endoscopy in August. So until then we'll take it as it comes and enjoy the status quo.

Liver Life Walk 2015

Family and friends came together once again for the Liver Life Walk Long Island on April 26th.

It was another amazing day and I can't really seem to find the words to convey how appreciative and thankful I am for everyone who showed support by walking with us, cooking food, coordinating drinks, setting things up, taking them down and monetary donations. And a special Thanks to the FDNY Corona Tigers and  Massapequa Fire Departments, your efforts and support go way beyond what anyone could expect. If I didn't get to thank you personally that day, Thank You! Know that each and every one of you are deeply appreciated.

Philip's health remains stable at the moment and we find ourselves just playing a waiting game majority of the time.

Waiting for his next fever.

Waiting in doctors offices and emergency rooms.

Waiting for lab results.

Waiting for the next endoscopy.

Waiting for him to get sicker and need a transplant…

Just stuck, waiting in one spot, not able to move forward.

Participating in this walk has made me feel like I am doing something really meaningful. Something that can really help. Moving forward in a sense, while we are just stuck where we are. Waiting.

Together, you helped raise $7,743 and the donations keep coming in. 

You have made this as successful as it has been. 

Thank you again from the bottom of our hearts. We really can't say it enough for the support that has been show to our whole family.

Scary Words. Scary Thoughts.

Thrombocytopenia. Hepatosplenomegaly.

Thrombocytopenia. (throm-boh-sahy-tuh-pee-nee-uh) 

Thrombocytopenia is any disorder in which there is an abnormally low amount of platelets. Platelets are parts of the blood that help blood to clot. This condition is sometimes associated with abnormal bleeding.

http://www.nlm.nih.gov/medlineplus/ency/article/000586.htm

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Hepatosplenomegaly. (hep-a-toh-spleen-o-meg-a-lee)

Abnormal enlargement of the liver and spleen. Hepatosplenomegaly is typically associated with chronic liver diseases.
http://www.medicinenet.com/script/main/art.asp?articlekey=3716

Thursday, I took Philip to his pre-surgical testing appointment at the hospital for his endoscopy next week. We were sent away last week because he presented with a rash and low grade fever. Which turned out to be a reaction to a medication he was on. This week, All went well and while we were there I had his blood drawn because they always check his coagulation profile among other stuff before they do the endoscopy.
Portal Hypertension (which Philip has) causes the liver and spleen to enlarge (hepatosplenomegaly). 
Because of the abnormal blood flow away from the liver with portal hypertension, more blood is shunted to the spleen.  The spleen, unfortunately, traps the platelets and the measured platelet count in the blood is reduced. A low platelet count may be associated with an increase chance of bleeding. (http://www.texasliver.com/en/cms/?207)

They also check his prothombin time which measures how long it take s for your blood to clot.

Normal Platelet levels are usually between 150,000 and 400,000.
Philip's usually hang out between 100,000 - 130,000.

I received a call from his doctor yesterday that his level had dropped to 28,000, Yet his clotting time remained within a normal range. This means he is at a higher risk for bleeding. So we will have to go in a few hours before the endoscopy to check the levels again. And go from there. Also we need to be extra vigilant with him playing. No rough housing, wrestling, running, or hard falls. How can you keep an almost two year old from doing these things? I mean not like he will be wrestling but he does like to play with his brother and cousins. He trips and belly flops like 10x a day, climbs on furniture and what not. 
The morning the doctor called to tell me, he took a header off the couch and banged his head on the floor. Now I couldn't get out of my head that he was internally bleeding or something.
The doctor reassured me that if he is acting fine after it he is probably ok. That is regardless of whether he has low platelets or not.
Platelets tend to go up and down so Im hoping it was a fluke and they go back up. 
I just feel like he was doing so good and the wind was taken out of our sails. I tend to not think about all the bad stuff that can happen on a daily basis. I try to live our lives as normal as we can, but when they call and tell you something not so good it's hard to not have the scary thoughts that come with it.

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Too close for comfort...

Last Wednesday Philip woke up and felt warm but his temperature only read 99.9 so I went on with our day as usual. As the day went on my sister called and said he felt hot to come home from work to see what was going on with him. I took his temp and my heart sank…102.5. So I made the phone call to the GI and braced myself for the instructions to head to the hospital because he had no other symptoms like a runny nose or cough. (This made my heart sink even more because Dan's brother was getting married Saturday and I knew it would be a very close call as to whether we would make it to the wedding because they usually keep us for 48 hours when this type of thing happens.)

They would call ahead and let them know we were coming. 

We got to the hospital and I took one look at the waiting room and knew it was going to be a long day, I just didn't think it would be as long as it ended up being. So I set myself and Philip up in a secluded spot so hopefully no one would bother us. They called us in and triaged us and said they were looking for a bed for him and then sent us back out into the waiting room, where we waited…and waited…for 6 hours…

It's hard enough to keep a 20 month old occupied for 30minutes let alone 6 hours all while dodging children coughing and vomiting. People were everywhere and literally "too close for comfort".  Kids kept coming up to play with Philip and I kept asking are you sick? Please don't get too close. I just wanted to run us out of there. Philip was a trooper though and handled the situation amazingly. 

We finally were brought back and they started the IV and took some blood and a nose swab.

The nurse came in and said he was positive for corona virus(same thing he had when he was in the hospital for Thanksgiving) and his liver numbers were similar to what they have been. Phew! So it is Not Cholangitis. BUT…

The nurse also said His hemoglobin is low and asked if anyone ever mentioned that before?

Nooo…What does that mean?

Well the doctor came in and said they were concerned he might be bleeding somewhere…Wait. What?

His levels were fine last month when they took blood but somewhere in there something happened to make his levels drop.

Google.Google.Google. Low hemoglobin in toddlers...

One thing kept coming up.

Milk…Lots of it. 

And wouldn't you know my little Philip switched to Whole Milk just last month and was drinking lots of it.

Like Lots…30oz a day lots.

So the doctor came in and was explaining some things and trying to figure out the source and that they were admitting us to figure this out. So I mentioned the milk thing and he flat out said there is the source right there! He could possible have a milk protein allergy and it is irritating his insides or Toddlers who drink a LOT of milk tend to get iron deficiency anemia. SO they took some more blood to check iron levels and he is indeed iron deficient. So no more milk for my little guy. He has to go back to formula for now.

We stayed overnight in the hospital ER because there were no beds available. I actually didn't mind because it was a private room and if we went to the floor, I'm sure we would have had 1-3 roommates.

They were debating keeping us overnight again to check the hemoglobin but I told them about my brother- in-laws wedding and they decided to let us go home but return in the morning to get blood work redrawn but if his hemoglobin went down anymore, we would be re admitted right then and there. So I took Philip back to the hospital Friday morning for blood work and hung around to hear the results. After an hour, I called the doctor and he said Philip's numbers were stable and didn't get worse so we could go home! Never been so relieved! After spending Thanksgiving and Christmas in the hospital I didn't want the kids to miss another special occasion. We were all able to attend the wedding and had an amazing time. It was definitely the closest call we've had and by all means embodies the title of this post and was…

Too close for comfort...

Pillows, Pillows, Pillows!

This past week, Philip finally had his endoscopy that we have been postponing since October.
Unfortunately they found two moderate size varices they had to treat as well as a small one they left alone. So that meant another night in the hospital and a prolonged period without drinking or eating.
We knew this stay would be a little different because he has really started talking a lot and understanding things a lot more over the last few months. I knew it would be harder because he can express what he is feeling more like saying Ouch and scratch when he is really itchy.
We finally got into a room after waiting 5 hours in recovery then were switched to a different floor after a couple of hours in our first room. Once Philip was able to drink he wanted to walk around the hospital floor and didn't want to be in his room. So after making our 10th lap around the receptionist at the front said Hi Philip! Are you having fun? Well, Philip yelled NO! so fast and loud, all of the staff up front were laughing so hard and telling everyone about his come back.
Then our lovely nurse tried to put his baby lo-jack on and he told her to "goway"! I felt so bad but all the nurses got a kick out of him. He then proceeded to tell every doctor and nurse to "goway"! who came to see him. Except for one who came in with doctors and he was screaming to get out of the room and away from them saying "goway". She asked him if he wanted to go to the playroom and he put out his arms and went right to her. This is a kid who is extremely attached. He screams if I go to the bathroom at home and he doesn't see me. He did LOVE the playroom though so that was a major factor in that too. He went to sleep at a fairly regular time and I thought this is going better than I thought, but of course in true hospital fashion they have to come in and do vitals and woke him up at 10:30PM. Recently Philip has a "thing" for pillows and this was the first time they gave him a pillow in the hospital crib. So needless to say he was beside himself that he had a "piwow" and he wanted everyone to know he had a "piwow" at 10:30pm - 1:00am. He repeatedly yelled in excitement "piwow" over and over til he finally fell asleep on his "piwow". Our poor roommate. He probably kept them up half the night. LOL.
The next morning an Asian lady was outside our door speaking another language and I was holding Philip walking by the door. I can see he was interested and he all of a sudden started yelling back at her mimicking the language she was speaking! Like really loud!! I almost died!!
It stinks having to stay at the hospital but his emerging personality gave us some comic relief and makes the time go a little faster. The doctor said we can probably wait til the Spring to do another endoscopy, which is great because I can't do it every 2 weeks again. That was a nightmare.
His liver numbers continue to remain the same and fluctuate back and forth. It's his itching that is the most difficult to deal with at this point as nothing helps. We see the Liver specialists at Mt. Sinai next week so we will see if they will appeal for points or possibly remove him from the list all together. We are just stuck in a holding pattern right now as far as the transplant goes. We'll just keep enjoying his emerging comedic personality in the meantime!