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!
Saturday, February 7, 2015
Wednesday, December 31, 2014
Reflections...
Well I can't say that 2014 was "our year" and that I'm not anxiously awaiting it's demise in less than 24 hours. But Thank you 2014, for opening my eyes and teaching us so many things in the wake of your passage.
January - February taught Endurance, Courage and Faith.
March -April brought Frustration and Relief.
May taught me about Generosity, Community and Support.
June taught me to Live Life and Have Fun and about Love and Loss.
July - August brought Fear and taught Perseverance.
November taught Patience, Humor and that Sometimes you just have to Let It Go!
December taught me that Family is everything.
January - February taught Endurance, Courage and Faith.
May taught me about Generosity, Community and Support.
October brought More Frustration and Relief.
November taught Patience, Humor and that Sometimes you just have to Let It Go!
Holidays come and go so quickly we shouldn't wait for them to show or tell the people we love how much they mean to us. We would not have gotten through this year without our family and friends. You've been there at the drop of a hat when we needed you and if I don't say it enough THANK YOU for everything you have done this past year and all that you continue to do for us.
I will try to be better this year at showing how much you are appreciated.
We Love You!
Monday, November 3, 2014
Sidelined...
Yup, Philip was sidelined.
We met with Mt. Sinai last week and they said this was a possibility. We were trying to go forward with Living Donor and they had said they didn't want to do it this early as well.
So, Just as he got into the transplant game, and was listed, we got word today that he has been de-activated from the list. Now don't get me wrong, this is a good thing. This means he is too healthy to be considered for a transplant at the moment but I can't help but feel disappointment and frustration. Its hard to put into words, but having him listed gave me a feeling that things were moving forward. Things were being done. We had a plan. I mean I fully understand not wanting to do it too early so he can grow more but we are pushing off the inevitable. I don't want to trade one set of problems for another but its hard to not feel like "Lets get this show on the road" and start our next chapter and give him some relief. Why wait till he gets more sick?
You would think it would be better to do while he is fairly healthy. But they don't want to put him or the living donor at any unnecessary risk.
And by too healthy, I mean by the numbers. The parameters for listing don't take into consideration the varices in his esophagus that had to be treated again after the last free and clear one or that he needs to have yet another endoscopy again next week.
It doesn't take into consideration how the poor kid rips his poor legs apart from them itching so bad, or the sheet burn on his nose from rubbing his face back and forth to scratch his face from the itching.
Or how he is up multiple times at night crying, sitting in the dark scratching himself.
The doctors need to appeal for these to be considered, and they don't feel it is necessary at the moment.
So we will continue to wait it out and learn more about the transplant game and just be grateful and enjoy that he is still happy and healthy at the moment, as we've learned that it could always change with a drop of the hat with this disease.
We met with Mt. Sinai last week and they said this was a possibility. We were trying to go forward with Living Donor and they had said they didn't want to do it this early as well.
So, Just as he got into the transplant game, and was listed, we got word today that he has been de-activated from the list. Now don't get me wrong, this is a good thing. This means he is too healthy to be considered for a transplant at the moment but I can't help but feel disappointment and frustration. Its hard to put into words, but having him listed gave me a feeling that things were moving forward. Things were being done. We had a plan. I mean I fully understand not wanting to do it too early so he can grow more but we are pushing off the inevitable. I don't want to trade one set of problems for another but its hard to not feel like "Lets get this show on the road" and start our next chapter and give him some relief. Why wait till he gets more sick?
You would think it would be better to do while he is fairly healthy. But they don't want to put him or the living donor at any unnecessary risk.
And by too healthy, I mean by the numbers. The parameters for listing don't take into consideration the varices in his esophagus that had to be treated again after the last free and clear one or that he needs to have yet another endoscopy again next week.
It doesn't take into consideration how the poor kid rips his poor legs apart from them itching so bad, or the sheet burn on his nose from rubbing his face back and forth to scratch his face from the itching.
Or how he is up multiple times at night crying, sitting in the dark scratching himself.
The doctors need to appeal for these to be considered, and they don't feel it is necessary at the moment.
So we will continue to wait it out and learn more about the transplant game and just be grateful and enjoy that he is still happy and healthy at the moment, as we've learned that it could always change with a drop of the hat with this disease.
Monday, September 15, 2014
The List...
I love this time of year. I used to look forward to the shift in weather, school starting, new clothes. A new beginning so to speak.
But this year, with the shift of the weather, it brings up some different feelings.
A year ago this past week was when I first heard the words Biliary Atresia.
What is PELD? How does it differ from MELD?
Candidates age 11 and younger are placed in categories according to the Pediatric
End-stage Liver Disease (PELD) scoring system. Again there is a Status 1 category
for highly urgent patients, representing about one percent of those listed.All other candidates in this age range receive priority through PELD.
PELD is similar to MELD but uses some different factors to recognize the specific
growth and development needs of children. PELD scores may also range higher
or lower than the range of MELD scores.
The measures used are as follows:
•bilirubin, which measures how effectively the liver excretes bile;
•INR (prothrombin time), which measures the liver’s ability to make blood clotting factors;
•albumin, which measures the liver’s ability to maintain nutrition;
•growth failure; and whether the child is less than one year old.
As with MELD, a patient’s score may go up or down over time depending on the
status of his or her disease. Most candidates will have their PELD score assessed
a number of times while they are on the waiting list. This will help ensure
that donated livers go to the patients in greatest need at that moment.
SOURCE:http://www.unos.org/docs/MELD_PELD.pdf
So since PELD scores are based solely on those measures, Philip's score is so low because he is fairly healthy. But these measures don't necessarily show how sick a patient is. So they can appeal for more points if Philip's health starts to take a turn for the worse.
Unfortunatley, New York has one of the lowest rates for organ donation in the country. So who knows how long Philip will have to wait or how sick he would have to be before he could receive a liver. So we will be going forward with hopes that me or Dan will be able to be a living donor for him. We will start that process in the next few weeks. The screening process for living donors takes 6-8 weeks and if one of us is a match, he could be transplanted soon after.
Some Organ Donation Facts:
• 22% of New Yorkers age 18 and over have enrolled in the New York State Donate Life Registry as organ. tissue and eye donors. Nationwide, the average is 47%.
• On average, 18 people die every day while waiting for organ transplants in the U.S., and every 10 minutes, another name is added to the waiting list. In New York State, someone dies every 15 hours waiting for an organ transplant.
See more at: http://www.donatelifeny.org/about-donation/quick-facts-about-donation/#sthash.X6jINCoC.dpuf
I remember standing in the doctors office with Dan and my sister and listening to the doctor explain what they thought Philip had and that ultimately he would most likely need a liver transplant.
I remember breaking down crying in the office, not knowing what the future held for my newborn baby boy. I remember seeing the doctors eyes tear up. I remember my sister holding me and saying we'll all get through this together. There were so many questions racing through my head. What kind of life will he be able to lead? Will he be normal? Is he in pain? Why him? Why us? How the hell am I going to deal with all of this? I remember handing him over to the OR nurse when they did his surgery, then Dr. Prince coming out and saying it all went well, checking each diaper with bated breath hoping there would be some color to his poop to show that the surgery worked.
…And here we are a year later, facing the exact thing I most feared when we first heard about Biliary Atresia.
A liver transplant.
And to be honest, it hasn't been as dramatic as I had envisioned the whole process. We have been SO blessed that Philip has done so well this past year. Dont get me wrong, he has had some major hiccups but compared to most kids with his disease, he is doing great.
The last two fridays were spent at Mt. Sinai going through a transplant evaluation, which consisted of meeting with Social Work, Nutrition, Infectious Disease, Cardiology(EKG and Echocardiogram), Surgeon and will be getting a CT scan in the next couple of weeks.
Well Sunday, we got a call from our transplant coordinator that Philip is now listed for a transplant. His PELD score is -4. He is inactive at the moment because they are waiting for the CT scan but he will gain points for just being on the list.
Candidates age 11 and younger are placed in categories according to the Pediatric
End-stage Liver Disease (PELD) scoring system. Again there is a Status 1 category
for highly urgent patients, representing about one percent of those listed.All other candidates in this age range receive priority through PELD.
PELD is similar to MELD but uses some different factors to recognize the specific
growth and development needs of children. PELD scores may also range higher
or lower than the range of MELD scores.
The measures used are as follows:
•bilirubin, which measures how effectively the liver excretes bile;
•INR (prothrombin time), which measures the liver’s ability to make blood clotting factors;
•albumin, which measures the liver’s ability to maintain nutrition;
•growth failure; and whether the child is less than one year old.
As with MELD, a patient’s score may go up or down over time depending on the
status of his or her disease. Most candidates will have their PELD score assessed
a number of times while they are on the waiting list. This will help ensure
that donated livers go to the patients in greatest need at that moment.
SOURCE:http://www.unos.org/docs/MELD_PELD.pdf
So since PELD scores are based solely on those measures, Philip's score is so low because he is fairly healthy. But these measures don't necessarily show how sick a patient is. So they can appeal for more points if Philip's health starts to take a turn for the worse.
Unfortunatley, New York has one of the lowest rates for organ donation in the country. So who knows how long Philip will have to wait or how sick he would have to be before he could receive a liver. So we will be going forward with hopes that me or Dan will be able to be a living donor for him. We will start that process in the next few weeks. The screening process for living donors takes 6-8 weeks and if one of us is a match, he could be transplanted soon after.
Some Organ Donation Facts:
• 22% of New Yorkers age 18 and over have enrolled in the New York State Donate Life Registry as organ. tissue and eye donors. Nationwide, the average is 47%.
• On average, 18 people die every day while waiting for organ transplants in the U.S., and every 10 minutes, another name is added to the waiting list. In New York State, someone dies every 15 hours waiting for an organ transplant.
See more at: http://www.donatelifeny.org/about-donation/quick-facts-about-donation/#sthash.X6jINCoC.dpuf
Thursday, September 4, 2014
A Small Victory!
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.
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.
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.
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