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.

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.

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.

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.

• 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

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.