When I was younger I used to like to jump the waves at the beach, but this one time, I guess the water was too rough and a wave came and blind sided me, knocking me off my feet, sending me tumbling under the water. I remember the pressure of the water pushing me down but I wasn't in that deep of water so I kept hitting sand. I finally caught my footing, stood up and BAM! another wave sent me ass over head again under the water, tumbling, fumbling to gain footing. I got my balance yet again and was able to outrun the incoming waves to the shore. This past year, particularly the last few months had me thinking about this feeling. Just this feeling like I couldn't catch my breath, one hit after another. The bleeding episode, the endoscopies, hospital stays, doctors appointments, the passing of nana.
Then Tuesday morning we headed back to the hospital for Philip's third Endoscopy in a month. It seemed to take longer than usual but we were elated to hear that they did not find any more varices they had to treat. There is one small one but it is not raised so they didn't treat it. So Philip was able to drink right away and we were able to come home about an hour after the procedure. A small Victory that felt so sweet! Finally, a break in the waves even if it is short lived, it is just enough to make it to the shore and catch my breath a bit.
Thursday, September 4, 2014
Friday, August 22, 2014
Groundhog Day
It's starting to feel like that movie Groundhog Day over here.
Tuesday, Philip had to have another Endoscopy done to see if there were any more varices in his esophagus.
So the Friday before I had to take him for blood work, then Monday for Pre-Op testing because his procedure needs to be done in the Operating Room because of the risk of bleeding I guess.
So again, no food, but this time we got to wait in the ambulatory surgical waiting area so he was able to play with toys and walk around so he wasn't as irritable. Just the last half hour before.
I carried him to the OR and stayed till they put him to sleep. He wasn't happy when they tried to put the mask on and fought it so I put my face close to his to talk to him and give him a kiss. The nurse then said "don't breath in too deep Mom, we don't want you to sleep as well!." LOL Oops.
It went well but they did have to treat another varix, so that meant a stay overnight.
When the varices are treated(collapsed), the blood looks for another path and in turn can cause more pressure and others to pop up. So they need to check every two weeks until they do not find any more.
The point I guess is to treat the varices before one can rupture and cause bleeding again.
They were slow with discharges, so we were stuck in recovery for about 4 hours. He was able to drink pedialyte that night and boy did he take advantage of that! The nurses were laughing and saying we should put a keg of it in his room or give him one of those silly beer hats with the straw tapped into the pedialyte.
His belly was a little more distended than usual but I think it was from gas and all that pedialyte. He also had some blood in his stool so they checked his blood work to see if all was good, which it was. We were able to come home the follwing day.
We will now repeat this process in two weeks...
And every two weeks after that if more are found.
And every two weeks after that if more are found.
A lot has been going on lately and I'm finding it harder and harder to keep things in order and in place. So many appointments, medicines, people to call, questions to ask, my head is spinning. I feel bad because I feel like I cant give 100% to anything. I used to be one of the most reliable people at work but feel like a flake lately, coming and going unpredictably. And when I am there I am on the phone constantly with doctors or the insurance company. I've been very fortunate that my boss has been very understanding and allows me to come and go when needed.
And forget housework. Thank goodness Dan does most of it because we would all be wearing dirty clothes and mismatched socks if it weren't for him keeping on top of the laundry. The kitchen table is forever piled high with mail to sort through and I can never find my keys or phone. But to be honest, when I get home I'd rather lay on the floor and play with the kids or put the TV on after they fall asleep and binge watch Breaking Bad and I really don't feel guilty about it. LOL We like to say our house is "lived" in. So I'll keep tripping over some toys, searching for my keys and praying no one pops by for a surprise visit. I'll get to all that stuff eventually.
And forget housework. Thank goodness Dan does most of it because we would all be wearing dirty clothes and mismatched socks if it weren't for him keeping on top of the laundry. The kitchen table is forever piled high with mail to sort through and I can never find my keys or phone. But to be honest, when I get home I'd rather lay on the floor and play with the kids or put the TV on after they fall asleep and binge watch Breaking Bad and I really don't feel guilty about it. LOL We like to say our house is "lived" in. So I'll keep tripping over some toys, searching for my keys and praying no one pops by for a surprise visit. I'll get to all that stuff eventually.
So if you can, please pray and think good thoughts that they don't find anymore varices the next time we go so Philip can take a break from this stuff for a bit and just enjoy being a curious 1 year old.
Friday, August 8, 2014
The Sixth Sense...
Last week I was on and off the phone several days with Philip's GI doctor (Dr. Webster) for various reasons about appointments and medications. And after all issues were resolved she asked is there anything else? Like she knew I had another concern.
*Philip has portal hypertension and we've been monitoring him closely for that. We've been speaking about possible bleeding esophageal varices.
So at the last minute I said to her that I was starting to get paranoid about a bleeding episode and what I should do. So we spoke about it and had a plan in case it were to happen.
If it was a lot of blood and he was pale and not himself call 911 ASAP and go to the nearest hospital. If his poop was black but he was acting fine, I could drive to the ER myself. Assess the situation and make a decision. Fast.
I guess in some way(my sixth sense) I just knew it was going to happen soon...
And well, It happened.
WARNING: Description May Be Graphic
Monday morning I heard Philip wake up on the baby monitor around 7:30am so I let him play in his crib for a little bit like I do every morning. I could hear him jabbering and cooing with an intermittent cough here and there. I got up and got myself dressed and ready because he had his 1 year well visit that morning. I finally went in to him around 7:50 and saw what I thought to be an exploded diaper. The "poop" was sooo dark though, like almost black. "Poop" on his face, arms, legs, all over the crib... EVERYWHERE.
---->Cue the guilt and frustration that I didn't go in earlier. So I turned on the light and Instantly saw there were blood stains on his sheets and large clots of blood mixed in with what I still thought was poop. (Variceal bleeding can show up in poop or vomiting) And to tell you the truth I didn't think it was vomited up because in my head I though when it happened it would be like that scene from the Shining with the blood pouring out the doors( I know. I'm nutty.) and he would be limp and pale. He just looked up at me with a smirk like "What. What did I do?" So panic was starting but He looked and was acting great so I grabbed him and threw him in the tub. I took off his diaper and to my surprise it had poop in it and it was his normal yellow color. Now the panic really started. Hands start shaking realizing that it was thrown up and this was it. He was having a variceal bleed. It was actually happening. I made the decision to drive him to the ER myself instead of an ambulance because he was not actively vomiting and he looked and was acting fine and I wanted him to be at Cohen's Children's Hospital so he could be treated right away instead of waiting for a transfer to there from a local hospital. So, I grabbed a sample of the vomit and his diaper to bring, took a picture of the crib, grabbed Danny bare foot and all and started calling people on my way to drop Danny off and to notify his doctors we were on our way to the hospital. Special Thanks to my future sister-in-law Meghan for taking the crazy ride with me as we got stuck in traffic and missed the exit due to too many people calling me at once and climbing into the back seat mid trip to console Philip. (If this happens again I WILL be calling an ambulance, lesson learned) Docs said he was totally fine that I did the right thing but It was not easy trying to concentrate to get there. So they took us right in and I learned that generally when varices bleed it is a lot more blood than what Philip vomited. (Hence always thinking it would be like the Shining reference in my head) So they would be doing an endoscopy to see what was going on. They came with a crib to the ER to transport him to the OR for the test and we told them he would not lay down in the crib because he was very irritable from not eating. They said well that is the policy so we laid him in there screaming and lo and behold he tried to stand up and was almost falling over. So we laid him back down and they moved the crib and he did it once more and it was even worse this time. He literally stumbled over. So my sister yelled stop and we said this is not safe. You can't transport him in this. So we convinced them to put me in a wheelchair and hold him because we weren't going to go any other way. They took him in for the test around 2:30 and were done around 3:30. She had said it would take around 10-15 minutes or up to 45 minutes depending what they find. It could be just irritation, an ulcer or the varices. So when it took that long, me and my amazing sister who stayed with me all day figured something was going on. (Dan was in a class and we didn't want him to have to retake it so he stayed till it was finished then came after). She came out and said they found one esophageal varix that could have caused the bleeding. Its not always obvious that they have bled. But it was enlarged and angry looking. His was probably oozing which is why it wasn't bleeding profusely. He also has some smaller ones more toward his stomach opening but they don't treat those. So they injected something into the vein to collapse it and scar it so it wont bleed. That's not to say it won't bleed again or others might form and bleed. So after recovery we had to spend a couple of days in the Pediatric Intensive Care Unit because of a certain medicine he needed to be put on. He also was not allowed to eat until late Tuesday afternoon. Needless to say he was not a happy camper. Monday night into Tuesday was the roughest night and day I ever had with him. Dan was scheduled to work and we want him to be conservative with taking time off so he can take plenty off when transplant time comes. So I spent that night and day by myself. Thank God my sister was working Tuesday and got to visit me a few times. There was no consoling poor Philip. He was throwing his head back, arching his back and screaming. I didn't feel safe holding him but he didn't want me to put him down either. And he was connected to a zillion lines as well so he kept getting so tangled. And he was so itchy on top of all of that. They were trying to find a compatible medicine for IV use to help with it. He couldn't take anything orally yet so it had to work with IV and the other medications he was on. Finally at 3:30am we tried Benadryl and he slept for an hour or two.
Philip finally was allowed to eat that afternoon, He did a complete 180 and he was his normal self, charming all the nurses and everyone who saw him. Like nothing ever happened. He continued to eat well and they weaned him off of the medication and we were able to come home Wednesday afternoon. You would never know anything like this happened to him looking at him now. He is back to his smiley self.
All that being said, We will be going to Mt. Sinai on Monday to meet the Liver specialist and start the transplant conversation. I will update when we figure out what the situation is as far as that goes. Him having had a variceal bleed pushes him a little closer to a transplant.
I also want to send out a Thank you to the lady who refilled the supplies in Philip's room Tuesday Morning. She asked how we were and I said well it was a rough night. She said "Well today is a new day and it will be great. Good things will happen today."
It was exactly what I needed to hear at that exact moment.
*Philip has portal hypertension and we've been monitoring him closely for that. We've been speaking about possible bleeding esophageal varices.
- Portal hypertension is an increase in the blood pressure within a system of veins called the portal venous system. Veins coming from the stomach, intestine, spleen, and pancreas merge into the portal vein, which then branches into smaller vessels and travels through the liver. If the vessels in the liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops. This increased pressure in the portal vein may lead to the development of large, swollen veins (varices) within the esophagus, stomach, rectum, or umbilical area (belly button). Varices can rupture and bleed, resulting in potentially life-threatening complications. SOURCE:http://www.webmd.com/digestive-disorders/digestive-diseases-portal
Picture Source SOURCE: http://www.smcgi.co.kr/endoscopy/liver/liver.html
If it was a lot of blood and he was pale and not himself call 911 ASAP and go to the nearest hospital. If his poop was black but he was acting fine, I could drive to the ER myself. Assess the situation and make a decision. Fast.
I guess in some way(my sixth sense) I just knew it was going to happen soon...
And well, It happened.
WARNING: Description May Be Graphic
Monday morning I heard Philip wake up on the baby monitor around 7:30am so I let him play in his crib for a little bit like I do every morning. I could hear him jabbering and cooing with an intermittent cough here and there. I got up and got myself dressed and ready because he had his 1 year well visit that morning. I finally went in to him around 7:50 and saw what I thought to be an exploded diaper. The "poop" was sooo dark though, like almost black. "Poop" on his face, arms, legs, all over the crib... EVERYWHERE.
---->Cue the guilt and frustration that I didn't go in earlier. So I turned on the light and Instantly saw there were blood stains on his sheets and large clots of blood mixed in with what I still thought was poop. (Variceal bleeding can show up in poop or vomiting) And to tell you the truth I didn't think it was vomited up because in my head I though when it happened it would be like that scene from the Shining with the blood pouring out the doors( I know. I'm nutty.) and he would be limp and pale. He just looked up at me with a smirk like "What. What did I do?" So panic was starting but He looked and was acting great so I grabbed him and threw him in the tub. I took off his diaper and to my surprise it had poop in it and it was his normal yellow color. Now the panic really started. Hands start shaking realizing that it was thrown up and this was it. He was having a variceal bleed. It was actually happening. I made the decision to drive him to the ER myself instead of an ambulance because he was not actively vomiting and he looked and was acting fine and I wanted him to be at Cohen's Children's Hospital so he could be treated right away instead of waiting for a transfer to there from a local hospital. So, I grabbed a sample of the vomit and his diaper to bring, took a picture of the crib, grabbed Danny bare foot and all and started calling people on my way to drop Danny off and to notify his doctors we were on our way to the hospital. Special Thanks to my future sister-in-law Meghan for taking the crazy ride with me as we got stuck in traffic and missed the exit due to too many people calling me at once and climbing into the back seat mid trip to console Philip. (If this happens again I WILL be calling an ambulance, lesson learned) Docs said he was totally fine that I did the right thing but It was not easy trying to concentrate to get there. So they took us right in and I learned that generally when varices bleed it is a lot more blood than what Philip vomited. (Hence always thinking it would be like the Shining reference in my head) So they would be doing an endoscopy to see what was going on. They came with a crib to the ER to transport him to the OR for the test and we told them he would not lay down in the crib because he was very irritable from not eating. They said well that is the policy so we laid him in there screaming and lo and behold he tried to stand up and was almost falling over. So we laid him back down and they moved the crib and he did it once more and it was even worse this time. He literally stumbled over. So my sister yelled stop and we said this is not safe. You can't transport him in this. So we convinced them to put me in a wheelchair and hold him because we weren't going to go any other way. They took him in for the test around 2:30 and were done around 3:30. She had said it would take around 10-15 minutes or up to 45 minutes depending what they find. It could be just irritation, an ulcer or the varices. So when it took that long, me and my amazing sister who stayed with me all day figured something was going on. (Dan was in a class and we didn't want him to have to retake it so he stayed till it was finished then came after). She came out and said they found one esophageal varix that could have caused the bleeding. Its not always obvious that they have bled. But it was enlarged and angry looking. His was probably oozing which is why it wasn't bleeding profusely. He also has some smaller ones more toward his stomach opening but they don't treat those. So they injected something into the vein to collapse it and scar it so it wont bleed. That's not to say it won't bleed again or others might form and bleed. So after recovery we had to spend a couple of days in the Pediatric Intensive Care Unit because of a certain medicine he needed to be put on. He also was not allowed to eat until late Tuesday afternoon. Needless to say he was not a happy camper. Monday night into Tuesday was the roughest night and day I ever had with him. Dan was scheduled to work and we want him to be conservative with taking time off so he can take plenty off when transplant time comes. So I spent that night and day by myself. Thank God my sister was working Tuesday and got to visit me a few times. There was no consoling poor Philip. He was throwing his head back, arching his back and screaming. I didn't feel safe holding him but he didn't want me to put him down either. And he was connected to a zillion lines as well so he kept getting so tangled. And he was so itchy on top of all of that. They were trying to find a compatible medicine for IV use to help with it. He couldn't take anything orally yet so it had to work with IV and the other medications he was on. Finally at 3:30am we tried Benadryl and he slept for an hour or two.
Philip finally was allowed to eat that afternoon, He did a complete 180 and he was his normal self, charming all the nurses and everyone who saw him. Like nothing ever happened. He continued to eat well and they weaned him off of the medication and we were able to come home Wednesday afternoon. You would never know anything like this happened to him looking at him now. He is back to his smiley self.
All that being said, We will be going to Mt. Sinai on Monday to meet the Liver specialist and start the transplant conversation. I will update when we figure out what the situation is as far as that goes. Him having had a variceal bleed pushes him a little closer to a transplant.
I also want to send out a Thank you to the lady who refilled the supplies in Philip's room Tuesday Morning. She asked how we were and I said well it was a rough night. She said "Well today is a new day and it will be great. Good things will happen today."
It was exactly what I needed to hear at that exact moment.
Wednesday, July 23, 2014
525,600 Minutes...
How do you measure a year? A crazy year at that!
Today Philip turns 1!
He loves to play with his brother and cousins, he pulls himself up and cruises along furniture.
He loves to bang things. And to nod Yes! He says mamamama, dadadada, and nananana. He doesn't really like baby food and is just starting to tolerate a little texture. He still loves his bottle! He is still very happy and has the best smile. He can light up a whole room with it. He has brought us so much joy and happiness and we can't imagine life without him.
It's bittersweet looking back one year today as we hurried to drop off Danny at Dan's parents house, my water breaking in the car, freaking out that I was going to have the baby on the side of the highway with no drugs. Getting to the hospital and telling everyone I had to push but was really only 4cm, The doctor delivering him and yelling he has to be 10lbs!, then the nurses weighing him and yelling that he was 10lbs 5oz! We were so happy, oblivious to the shit storm about to hit us just a few weeks later. Everything as we knew it would be turned upside down.
This year as a whole has been a rollercoaster ride full of too many ups and downs that nobody should have to endure, let alone a little baby. The hospital stays, the poking and prodding, the endless taking of medication, you name it…I know. I know. This doesn't sound like my usual upbeat always look on the bright side self but I'll be honest … I'm mentally, physically and emotionally exhausted. The recent passing of Nana has been pretty rough on everyone in the family. It makes me sad that she wont be here to celebrate Philip's First Birthday with us and that he didn't get a chance to get to know her like Mike, Ava and Danny did, but she will be here in spirit and I'll make sure to have an extra piece of cake(or two) in her honor. LOL
Now for and update on Philip's health!
The past few months Philip has become very itchy. He scratches his arms, legs, chest, back, ears, eyes and head. He is up every 2 hours at night scratching himself. The GI sent us to the dermatologist and allergist who both said it was eczema. She wanted to rule out pruritus from anything liver related because his bilirubin wasn't really high enough to suggest it would be liver related.
Pruritus. Pruritus is caused by bile buildup in the blood and irritation of nerve endings in the skin. Prescription medication may be recommended for pruritus, including resins that bind bile in the intestines and antihistamines that decrease the skin’s sensation of itching.
Source:http://digestive.niddk.nih.gov/ddISeases/pubs/atresia/
So we slathered him up in creams and ointments to no relief. So our GI did another blood test and his bile acids came back elevated. So we need to start him on another medication to see if it can help relieve some of the itching. We do however get to stop his antibiotics TODAY!!!! He has been on them since his surgery at 8 weeks old. They have stained his teeth grey and I can't wait to be done with that sticky mess! His spleen is also more enlarged and his platelet count is a little lower (meaning the spleen is holding onto more platelets making it larger). He also gives us a really hard time eating solid foods. He will tolerate some baby food. But when he's had enough thats enough. He has a tendency to gag and throw up a lot. He is getting a lot better but if he has something with a little texture its not a good situation. He is just starting to try to bite into food and he wants it but if he gets a piece off and tries to swallow, he gags and throws up. I feel so bad for him because he looks at you eating and tries to grab it but he just can't tolerate it going down. We have an appointment with Early Intervention to see if he can qualify for some kind of feeding therapy but they said most likely he won't because his development has not been affected by it. So with all that being said we have been referred to Mt. Sinai in the city to see the liver specialists. We visit them mid August and will report back with more updates.
Happy First Birthday Philip! So, How DO you measure a year? Just like the song, measure it in LOVE!
Philip, You are SO loved and we have been so blessed this past year to have seen it through all of the support of our family and friends.
May the world always meet you with as bright a smile as your own!
We love you!
Today Philip turns 1!
He loves to play with his brother and cousins, he pulls himself up and cruises along furniture.
He loves to bang things. And to nod Yes! He says mamamama, dadadada, and nananana. He doesn't really like baby food and is just starting to tolerate a little texture. He still loves his bottle! He is still very happy and has the best smile. He can light up a whole room with it. He has brought us so much joy and happiness and we can't imagine life without him.
It's bittersweet looking back one year today as we hurried to drop off Danny at Dan's parents house, my water breaking in the car, freaking out that I was going to have the baby on the side of the highway with no drugs. Getting to the hospital and telling everyone I had to push but was really only 4cm, The doctor delivering him and yelling he has to be 10lbs!, then the nurses weighing him and yelling that he was 10lbs 5oz! We were so happy, oblivious to the shit storm about to hit us just a few weeks later. Everything as we knew it would be turned upside down.
This year as a whole has been a rollercoaster ride full of too many ups and downs that nobody should have to endure, let alone a little baby. The hospital stays, the poking and prodding, the endless taking of medication, you name it…I know. I know. This doesn't sound like my usual upbeat always look on the bright side self but I'll be honest … I'm mentally, physically and emotionally exhausted. The recent passing of Nana has been pretty rough on everyone in the family. It makes me sad that she wont be here to celebrate Philip's First Birthday with us and that he didn't get a chance to get to know her like Mike, Ava and Danny did, but she will be here in spirit and I'll make sure to have an extra piece of cake(or two) in her honor. LOL
Now for and update on Philip's health!
The past few months Philip has become very itchy. He scratches his arms, legs, chest, back, ears, eyes and head. He is up every 2 hours at night scratching himself. The GI sent us to the dermatologist and allergist who both said it was eczema. She wanted to rule out pruritus from anything liver related because his bilirubin wasn't really high enough to suggest it would be liver related.
Pruritus. Pruritus is caused by bile buildup in the blood and irritation of nerve endings in the skin. Prescription medication may be recommended for pruritus, including resins that bind bile in the intestines and antihistamines that decrease the skin’s sensation of itching.
Source:http://digestive.niddk.nih.gov/ddISeases/pubs/atresia/
So we slathered him up in creams and ointments to no relief. So our GI did another blood test and his bile acids came back elevated. So we need to start him on another medication to see if it can help relieve some of the itching. We do however get to stop his antibiotics TODAY!!!! He has been on them since his surgery at 8 weeks old. They have stained his teeth grey and I can't wait to be done with that sticky mess! His spleen is also more enlarged and his platelet count is a little lower (meaning the spleen is holding onto more platelets making it larger). He also gives us a really hard time eating solid foods. He will tolerate some baby food. But when he's had enough thats enough. He has a tendency to gag and throw up a lot. He is getting a lot better but if he has something with a little texture its not a good situation. He is just starting to try to bite into food and he wants it but if he gets a piece off and tries to swallow, he gags and throws up. I feel so bad for him because he looks at you eating and tries to grab it but he just can't tolerate it going down. We have an appointment with Early Intervention to see if he can qualify for some kind of feeding therapy but they said most likely he won't because his development has not been affected by it. So with all that being said we have been referred to Mt. Sinai in the city to see the liver specialists. We visit them mid August and will report back with more updates.
Happy First Birthday Philip! So, How DO you measure a year? Just like the song, measure it in LOVE!
Philip, You are SO loved and we have been so blessed this past year to have seen it through all of the support of our family and friends.
May the world always meet you with as bright a smile as your own!
We love you!
Friday, June 20, 2014
Nana Bunny
On June 15, 2014 the world lost one amazing person. It's hard to begin to describe what an amazing person my Nana was. She had this unique quality that made everyone she met feel special. She was warm and generous and caring. If you came into her house, you best believe you were going to be eating something. Whether it was her famous meatballs, pizzelles, eggplant, zeppoles or anything she could find to offer. And if you were a kid visiting, forget it. You'd be sure to leave with a goody bag full of candy and little toys from the "candy lady". She lived life to the fullest and had a great sense of humor. She loved a good party and was quite often the life of it. Always fun to be around. I'll always remember something would happen making her begin to giggle and it would be so contagious that me, my sister and mom would start in too and it would go on forever, the four of us giggling till we cried.
She was so special to so many people but be sure that so many people were special to her. Looking through pictures we found that she kept every picture anyone sent to her, whether it be a wedding photo, a child's school picture or Christmas picture, all in photo albums. She loved being with her sister and seeing her nieces and nephews. I'll miss seeing her sit at her table when I walk in the door at my mom's house or her saying to Philip "give me your hand!" We were so blessed that we got to spend so much time with her and I am thankful that my boys got to share in some of that time. I am comforted with the great happy memories I have with her and my family. She will forever live in my heart.
She was so special to so many people but be sure that so many people were special to her. Looking through pictures we found that she kept every picture anyone sent to her, whether it be a wedding photo, a child's school picture or Christmas picture, all in photo albums. She loved being with her sister and seeing her nieces and nephews. I'll miss seeing her sit at her table when I walk in the door at my mom's house or her saying to Philip "give me your hand!" We were so blessed that we got to spend so much time with her and I am thankful that my boys got to share in some of that time. I am comforted with the great happy memories I have with her and my family. She will forever live in my heart.
Wednesday, May 28, 2014
The Rally…in more than one sense of the word.
Rally 1...
On May 18th, our family and friends gathered together to walk for the Friends of Philip team in the Liver Life Walk Long Island at Eisenhower Park. When I joined up for the walk I never thought it would turn into what it did. I thought a few friends and family would join me and we would have maybe a 10 person team. Well our family and friends rallied together and close to 200 people came out for the walk and raised to date $15,282.14. And the donations are still coming in. It was an amazing day. The weather was perfect and we had an amazing picnic thanks to the FDNY and Massapequa Fire Departments. I was filled with emotion seeing how many people came out to show their support for us and our family. I still get teary eyed thinking about seeing the crowd of Friends of Philip shirts and Philip cutting the ribbon to start things off. It is so easy to feel alone with the whole situation and that just reinforced that we are and will never be alone on this journey. We even made some new friends and met some others who had Biliary Atresia and had transplants and are now 20 somethings in college. It was an incredible experience from start to finish and I hope to continue to raise money and volunteer for the American Liver Foundation. Maybe some day there will be a cure or a way to screen for the disease so children can get the help they need earlier, giving them a better chance of living a longer life with their native liver. Thank you from the bottom of our hearts again to everyone who participated and helped with organizing this amazing day. I am truly humbled and will never forget the day.
Rally 2…
A few days after the walk we saw Philip's doctor and she noticed his liver and spleen were a little larger than before. I've also noticed him being a little more distended. So we had some blood work done and she told us that maybe it was time to pick a transplant center to meet with. If just to start the talk and get to know them and them know us. So there we were researching between Mt. Sinai and NY Presbyterian driving myself crazy because I felt that whichever decision I made I was deciding his fate. If God forbid something doesn't go right it will be my fault for choosing that center and doctor.
Anticipating his bloodwork would get worse, we waited for the doctor to call. Well, we spoke last night about the results and somehow Philip rallied and it improved!
OK maybe improve isn't the right word but it got better by a few points on a few and stayed around the same on others. SO the doctor said with it staying the way it is, it is still too early to meet with the transplant team. Philip continues to be a fighter! Amazing news! We'll take it as long as we can.
On May 18th, our family and friends gathered together to walk for the Friends of Philip team in the Liver Life Walk Long Island at Eisenhower Park. When I joined up for the walk I never thought it would turn into what it did. I thought a few friends and family would join me and we would have maybe a 10 person team. Well our family and friends rallied together and close to 200 people came out for the walk and raised to date $15,282.14. And the donations are still coming in. It was an amazing day. The weather was perfect and we had an amazing picnic thanks to the FDNY and Massapequa Fire Departments. I was filled with emotion seeing how many people came out to show their support for us and our family. I still get teary eyed thinking about seeing the crowd of Friends of Philip shirts and Philip cutting the ribbon to start things off. It is so easy to feel alone with the whole situation and that just reinforced that we are and will never be alone on this journey. We even made some new friends and met some others who had Biliary Atresia and had transplants and are now 20 somethings in college. It was an incredible experience from start to finish and I hope to continue to raise money and volunteer for the American Liver Foundation. Maybe some day there will be a cure or a way to screen for the disease so children can get the help they need earlier, giving them a better chance of living a longer life with their native liver. Thank you from the bottom of our hearts again to everyone who participated and helped with organizing this amazing day. I am truly humbled and will never forget the day.
Rally 2…
A few days after the walk we saw Philip's doctor and she noticed his liver and spleen were a little larger than before. I've also noticed him being a little more distended. So we had some blood work done and she told us that maybe it was time to pick a transplant center to meet with. If just to start the talk and get to know them and them know us. So there we were researching between Mt. Sinai and NY Presbyterian driving myself crazy because I felt that whichever decision I made I was deciding his fate. If God forbid something doesn't go right it will be my fault for choosing that center and doctor.
Anticipating his bloodwork would get worse, we waited for the doctor to call. Well, we spoke last night about the results and somehow Philip rallied and it improved!
OK maybe improve isn't the right word but it got better by a few points on a few and stayed around the same on others. SO the doctor said with it staying the way it is, it is still too early to meet with the transplant team. Philip continues to be a fighter! Amazing news! We'll take it as long as we can.
Friday, March 28, 2014
Close Call!
Last Sunday Philip got a fever around 8pm. So I called the GI doctor and as I assumed they sent us to the emergency room to get checked out and have some blood work done. This time my mom and dad had been sick with fever so we hoped it may just be viral and not cholangitis.
We got to the ER around 10pm and by the time they were able to get blood and the flu swab it was 2am. The rapid flu came back negative so the decided to admit us. We finally got in our room around 4:30am. Thank you to my sister for staying and keeping me company since Dan was at work.
They started him on IV antibiotics in the meantime. They took the blood before the antibiotics started and It turned out his blood work came back better than the week before when we saw the doctor. So this made them believe it was just a virus but We still had to wait the 48 hours for the full result of the flu test. So we were quarantined to our room and he couldn't come out til we found out the results.
His next blood work still improved so there was some question on whether or not it really was a virus or the cholangitis. Well Tuesday night they came in and said his Flu test was positive! So that was the source of the fever. In the meantime my mom, Danny and I came down with symptoms as well.
SO they released us Wednesday afternoon and we are all taking Tamiflu which by the way has helped me greatly. Philip was released on oral antibiotics because the IV was working on something so they figured as a prophylaxis to continue on for 8 days with amoxicillin.
Such a weird feeling to be happy that he had the flu. I was smiling like crazy knowing he wouldn't have to endure IV antibiotics for 21 days again.
Over the last couple of months, Philip's platelet count had been dropping and While we were there his platelet count dropped significantly which we learned was from the flu. It did come back up a bit after a couple of days but we were told he is showing signs of portal hypertension.
We are still learning about it but in the simplest terms that way I understand it is as the liver hardens it causes a sort of traffic jam of the blood flow so it backs up into other veins and organs causing pressure like in the spleen which causes it to enlarge. There are other situations that can occur with this like esophageal bleeding but we are hoping that never occurs. Unfortunately this is the nature of the disease and although his bilirubin is the lowest it has ever been, the disease still progresses causing damage to the liver.
Philip still remains a happy little guy and is hitting all his developmental milestones. He doesn't like baby food much but who would I guess? lol
We will be walking in the LI Liver Life Walk this year at Eisenhower park on May 18th.
Please join us at the walk if you can and help us raise money for a great cause!
Our team name is Friends of Philip!
http://go.liverfoundation.org/goto/kimkennelly
We got to the ER around 10pm and by the time they were able to get blood and the flu swab it was 2am. The rapid flu came back negative so the decided to admit us. We finally got in our room around 4:30am. Thank you to my sister for staying and keeping me company since Dan was at work.
They started him on IV antibiotics in the meantime. They took the blood before the antibiotics started and It turned out his blood work came back better than the week before when we saw the doctor. So this made them believe it was just a virus but We still had to wait the 48 hours for the full result of the flu test. So we were quarantined to our room and he couldn't come out til we found out the results.
His next blood work still improved so there was some question on whether or not it really was a virus or the cholangitis. Well Tuesday night they came in and said his Flu test was positive! So that was the source of the fever. In the meantime my mom, Danny and I came down with symptoms as well.
SO they released us Wednesday afternoon and we are all taking Tamiflu which by the way has helped me greatly. Philip was released on oral antibiotics because the IV was working on something so they figured as a prophylaxis to continue on for 8 days with amoxicillin.
Such a weird feeling to be happy that he had the flu. I was smiling like crazy knowing he wouldn't have to endure IV antibiotics for 21 days again.
Over the last couple of months, Philip's platelet count had been dropping and While we were there his platelet count dropped significantly which we learned was from the flu. It did come back up a bit after a couple of days but we were told he is showing signs of portal hypertension.
We are still learning about it but in the simplest terms that way I understand it is as the liver hardens it causes a sort of traffic jam of the blood flow so it backs up into other veins and organs causing pressure like in the spleen which causes it to enlarge. There are other situations that can occur with this like esophageal bleeding but we are hoping that never occurs. Unfortunately this is the nature of the disease and although his bilirubin is the lowest it has ever been, the disease still progresses causing damage to the liver.
Philip still remains a happy little guy and is hitting all his developmental milestones. He doesn't like baby food much but who would I guess? lol
We will be walking in the LI Liver Life Walk this year at Eisenhower park on May 18th.
Please join us at the walk if you can and help us raise money for a great cause!
Our team name is Friends of Philip!
http://go.liverfoundation.org/goto/kimkennelly
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