Guilt and Adjustments

As parents we've all had those moments (I think) when you WANT your child to do something and they refuse to do it.
Put their diaper on.
Brush their teeth.
Take a bath.
Eat their dinner.
Go to bed...
But what if you NEEDED them do it? What if their health depended on it? Or if they didn't do it, the consequence would be much worse than the actual doing of the thing? Or what if it was for selfish reasons or a combination of both?
When it comes to the point of full out screaming and kicking and crying, do you use any and everything in your arsenal to get it done?
And although I am scared to admit it and am risking being criticized, yes, I have. And this is where the guilt comes in.
On our last day at the hospital, we were awaiting discharge and were informed that Philip's potassium was low and they wanted him to take a supplement before we could leave. Sure, no problem. So we waited, and waited and waited for 3 hours for the supplement to come up from the pharmacy. After 6 days in the hospital, we as well as Philip were drained. Physically, mentally and emotionally. They brought the supplement in and it wasn't just a teaspoon full but a giant syringe and then some. We tried to give Philip the syringe and he flat out refused to take it. Like gritting teeth, hand over mouth no way am I taking this shit refusal. I didn't blame him, after all the stuff he dealt with over the week. After a few squirts and his gurgling it out of his mouth we decided to take another approach. We put it in some apple juice so it would mask the flavor. One sip and he refused again. I didn't want to push too much but we were so close to him going home, and he needed to take it for us to go. His IV was already taken out (which should have waited till after he took this but that's neither here nor there at this point) The nurse said she had to get the resident and they would have to put the IV back in for him to get it or they would have to take a blood test for the potassium again and hope it went up. I knew that him being stuck again would hurt far worse than him drinking this stuff.  It was not an option in my book. He had been stuck well over a dozen times while we were there and it was getting hard to find places to stick. He had bruises and hematoma all over his hands, arms and feet. So we started bribing him with toys, cars, food, other drinks. Anything we could think of. Still refused. He even said he was staying there now and he didn't want to go home. So out of frustration in the moment, we said that he could stay but mom and dad had to go home. He immediately said OK I'll drink it, no crying or anything. It took him 1/2 hour to do it but he got it done with huge high fives and dances after every sip. We were out of there within 10 minutes of him drinking and he was asking to go in the big bathroom like a big boy, as if nothing ever happened. I immediately felt so guilty. I would never want him to think I would leave him there all alone. I hope that the saying actions speak louder than words is true because then he would see that I would never leave him and didn't leave him this whole stay. I am so mad at myself for saying that. Was I being selfish because I just wanted to get home too? The longer we stay the more germs he's susceptible to get and I wanted to get out! But at the same time, I feel like it was the only thing that I could do at that moment to save him from more pain of being held down by 4 people and being stuck. I'll just chalk this one up to a parenting fail and try to come up with a better strategy for next time.

And Danny. I feel so bad for him. I didn't see him for 5 days. I feel so guilty having to spend so much time away from him, but this time Philip did not do well with me away for any length of time. And he is such a good boy. He never complains about me being away, he just does what he has to do and gives me extra hugs and kisses when he sees me. He does want some extra attention but I don't mind giving him that. He's so sweet to Philip and will rub his arm and back. That's not to say they weren't fighting over a car within 10 minutes of being home and then play nice 10 minutes after that, but hey, boys will be boys. And He's been my shadow since we came home. I had some side work to do so I let him press the wireless remote when taking photographs and he pulled up his chair and sat in my office with me tonight while I caught up on some more work and fell asleep.

Now for adjustments...
There is always a period of adjustment after a hospital stay. We basically do what we have to to get through the stay and deal with the consequences when we get home and hope we can adjust quickly back to our normal routine. We were on the right track of finally reducing Philip's bottle use but that went out he window in the hospital, especially that he couldn't eat for so many days and just could drink, so we have to start again with that. And he started hitting himself when he gets angry or frustrated in the hospital and talks through gritted teeth when frustrated, so we have to work on that. Sleep, well he never really slept good to begin with but the hospital throws that out of whack too. The day after we came home he whined and cried til 4:30pm.  He kept thrashing around and finally said his ear hurt. So, off to the doctor this morning and he has an ear infection on top of everything else. It was probably brewing in the hospital and what was causing the fevers. The poor kid can't catch a break. Today he is finally acting like himself and his appetite is back in full force.

I spoke with the doctor and asked again what could have caused the varices to get that bad so fast because 3 weeks ago when he had the endoscopy they were flat. There is some speculation that whatever virus/infection he had caused a strain on his body and liver and thus led to the varices bleeding but there is no real answer. Sometimes it just happens. It's very unnerving that it could happen that fast and that next time it could be even worse than this time. And that every time he gets sick it could take a toll on his body causing this to happen again. I'm afraid to take him anywhere now for fear of him getting sick. We are now waiting to hear from Mt. Sinai. They will be discussing his case at the team meetings to see what they want to do as far as transplant goes. We will most likely see them in the next 2-4 weeks and have more information.

Thank you for all of your continued prayers and support. Keep praying Philip stays strong and that this doesn't happen again anytime soon.

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. 

The Feather and the Transfusion

Yesterday, when I picked Philip up, he looked a little pale and my mom said my sister had mentioned it as well and that he was a little clingy to her the whole day.  I didn't think much of it because he's been having a rough time sleeping lately and figured he was tired or coming down with something. 

But when I changed his diaper this morning, his stool was black. I wasn't sure, but it was dark enough to cause concern and coupled with the paleness and dark circles he had that morning as well I  felt it warranted a call to GI.

The nurse called and said they felt it was a good idea to head to the ER. 

When we got to the ER they took us right back into a room and started his work up. They were concerned he was having a bleed from somewhere. When they took his blood it was very thin like water and his heart rate was rapid. He quickly declined and became very lethargic and mushy. His blood pressure was low. He was just out if it. Not himself at all. Scary to think how quickly he deteriorated and what if I didn't listen to my gut. The doctor came in explained that he was in fact having a bleed from somewhere. His hemoglobin was very low at a 6 and before they can do an endoscopy he needs to be fluid and blood resuscitated.  

Because there is more of a chance of bleeding going in and looking and if he had an active bleed his current blood doesn't give any room for more bleeding. 

So that meant he needed a blood transfusion. My eyes started to well up but I was still alone at that point and didn't want to lose it. He was doing so great I just never saw this coming. Especially not a blood transfusion. 

My sister arrived and as they were preparing him for the infusion we both caught sight of something and followed it

At the same time. It was a little tiny feather floating. We looked at each other and I started to bawl. We both felt it was Nana Bunny there saying everything was going to be ok. The nurses probably thought we were crazy as we tried to explain what just happened as I was crying out of nowhere. He also spiked a fever before the transfusion so we are trying to figure the cause of that too. We are in a step down PICU right now. He received 1 unit of blood and will get labs at 1am to see how everything looks and if he needs more. He's also on octreatide to help stop the bleeding and some antibiotics just in case. He can't eat or drink so he is not happy and keeps asking to go home. He even demanded to my sister that she " get me my baba right now". Endoscopy should be tomorrow. Hopefully early so we can get him drinking sooner. He's still spiking a fever and heart rate is high now so we are hoping that goes down too. Please say a little prayer for your friend Philip that this resolves quickly  and he can come home soon.