Ticking Time Bomb

Saturday morning, Philip was brought in to have his endoscopy. So off we went and we waited to hear what they found. The doctor finally came out and said he did great but they saw 4 very large varices, one which was actively still bleeding. So they had to do sclerotherapy on all 4. They responded well to the treatment and flattened out and the bleeding stopped. She said she was actually shocked by the findings because he was just scoped 3 weeks ago and the varices were all flat at that point. The covering doctor said she always refers to kids with esophageal varices as ticking time bombs because this is what happens. It's so unpredictable and could be worse too. 

He was put on restriction to have nothing by mouth which is one of the most stressful situations for a 2 year old to be in. He was not happy and as time went on became pretty combative when any doctor or nurse tried to take a look at him. He just repeated I want my Baba, I want to go home now, can you lay with me, can you hug me, which turned to get me my baba now, I gotta go home right now, can you scratch me, and just good plain old NO! For good measure. These were repeated over and over for hours and hours into Sunday. He had 3 IV's fail and had to be stuck multiple times for blood draws, including a not so fortunate incident with a resident who I had to ask to stop and take a break because Philip was thrashing around and compromising his IV's and she was coming at him like Norman bates in Psycho with the needle. Literally, me and nurse had to duck out of her way because she was trying to

follow his hand with the needle and then repeatedly stuck him about 5 times in the hand in quick succession with no success. She had no patience and caused him unnecessary stress. The transport team who I have to say was amazing was called in and they came in , treated Philip with respect, had this cool like infrared tool that shows where the veins in. We wrapped Philip in a blanket so he couldn't be so combative and 1,2,3 done! I also have to say we've had some of the best nurses ever this stay. A special thank you to our nurse Cristine 

Today. I've never experienced a nurse like her before in any of our stays. She had her shit together, was on top of everything and She went above and beyond to advocate for and help Philip make it through til he could finally start eating at 2pm. She was truly amazing.

Once Philip was able to drink and eat clears like water, juice and jello, his personality started to slowly come back. It's still mixed in with I want to go home. And even a smile and I I get to go home now! Like he's trying to convince us that he's allowed to go home. But it's a little more bearable now. He did have another black stool earlier so they did bloodwork and it was still stable so they believe it is just residual blood left over still making its way out. But if there are more, they need to recheck bloodwork every time. 

All in all he is doing well and improving and is stable at the moment. We are doing ok as well. A little exhausted emotionally and physically but it's nothing compared to what Philip is going through so we will push on through it. 

 We will be in contact with Mt. Sinai the transplant center to see what they think about getting exception points and moving forward with living donation. 

Thank you for your continued prayers and support. 

We know they are working and someone is looking out and watching over Philip.