Never give in

I have felt so defeated so many times the last 3 days and I could have given in so many times, but because of the support of so many- we are all still fighting :) Evan is proving to be the strongest of us all- GO LITTLE MAN!!! I guess I have some catching up to do on here since my last post. I had to eventually have Ben come in for a "new voice" as I felt I wasn't getting anywhere with my concerns on Tuesday. It just so happened that when he arrived the hospital administrator on duty stopped by to see if my concerns from the night before were addressed (no). At this point Evan was much more agitated and having worse withdrawal symptoms and it was apparent to everyone in the room (including the resident, finally) that he needed to be back on the methadone ween regimen that the pharmacist initially prescribed that was d/c'd prematurely. I should also mention that earlier in the day the surgery fellow came in to talk to me about my concerns and convinced me to start feeding Evan again in order to allow the meds she was going to prescribe for "gut mobility" to work. I agreed but told her that he was refusing so if he really needed to eat a feeding tube would have to be put back in, so we did. I wasn't going to refuse feeding him like my initial instinct if they were advising me that they have a reason as to why he needs to eat even when he doesn't want to, I am not a negligent parent.

We all got some rest after the weening meds were started again. Ben and I then brought up the other littles Wednesday late morning and were happy to hear that Evan had not thrown up since the meds were started. YAHOO!! We were feeling relief that it was withdrawal and not anything worse causing him to go downhill again. About this time Dr. Z returned, we were very pleased to see him again after many days. We didn't re-hash through everything with him as we were optimistic that all our worries were going away now that we "believed" he was on the mend. We did tell him that we thought the 36 hours he was off of meds and suffering was completely unnecessary and we wish we would have been listened to earlier. He replied that he was happy he was back on them now. Fair enough. As we talked Evan started getting upset and gagging a bit, seconds after they left the room he spit up a small amount of brown liquid. Hmmm, weird. This is new, here we go again?? We again started waiting for what was going to happen next. As the day went on Evan once again grew angry and inconsolable. Sure enough the next time I tried to feed him he threw up, lots. It was brown specked again and the nurse and I had a feeling it was blood. It tested positive on the litmus test, dang it!! Now I am back to believing that it wasn't completely withdrawals and indeed something else is going on. I am going to tread lightly here, and not document fully what happened next. All I can say is that I have not been happy with the communication I have received from residents over the last 2 days. I was panicking at this point and thank goodness for understanding and supportive nurses (on staff here and from the little's peds office!) and for a fantastic pediatrician who called me after getting my email after hours. I needed someone to listen to me and be empathetic and show concern, and she did. I am not saying that she would even do anything differently than the surgeons, but I strongly believe that pediatricians should be involved to look at the big picture during times like these and consult with the surgery team. I think the surgeons are experts in what they do best- surgery, but I think we need a pediatrician hospitalist to manage Evan's medical issues and hopefully prevent them from turning into surgical issues. I am very thankful for Dr. Z, he had a hand in saving Evan's life and I am forever thankful for that. I believe that when Evan left the PICU and the intensivists that were also watching over him along with the surgeons that he should have been assigned a pediatrician to watch over him along with surgery team. Surgery residents, from my experience, have surgery on their mind only. They assess if Evan is a surgery candidate, and if he's not than they believe "he is doing fine", even when I say he is not doing fine. I don't want him to be a surgery candidate again. I don't want him to get to the point of critical condition before action is taken again, like what happened when I said he wasn't fine and we were sent home from the ER. I want pro-active care and thinking. I want them to believe me when I say that something has changed, that Evan was doing great for 2 days and now he is reverting back and something is wrong. I want to hear what the possibilities are that could be causing this, even if no action is taken. I want to be confident in the care he is receiving and in order for that I need to believe that more is being taken into consideration than if he is a surgery candidate or not. I don't want to hear "he looks great" when I am telling you that he doesn't. I am his mother who has been by his side (along with the best dad ever!!) through this horrific time and I am telling you that something is wrong, please listen to me and quit looking at me like I am crazy!

After my pleading that "something is wrong" they ordered an xray knowing that it couldn't rule out an obstruction or stricture completely but it could show signs of NEC recurring, which isn't what I think (pray) is happening. The xray didn't show signs of NEC (yay!) but also couldn't rule out a stricture because his stomas allow gas to be released so they can not check for gas in his rectum which would mean gas is passing all the way through. So, the resident said they will "consider" doing a contrast study tomorrow (today). Well, he ended up having another large blood filled emesis a few hours later. They FINALLY discontinued his feeds and ordered a UGI with small bowel follow through to be performed in the morning. That brings us to now, I am waiting to take him down to Radiology to start the exam. He is much more content now that he is not being forced to eat, but is still not comfortable completely.

So for all you mamas and papas out there- speak up!! I just spent an hour with the hospital administrator documenting all of this (again) because I feel so bad for other patients who may not know any better or who think that doctors know all and shouldn't be questioned. This is a service issue here that needs to be changed. For now my main concern is Evan getting what he needs, I will fix the system later, hahaa! Maybe they should hire me ;) JUST KIDDING!!!!

**Update** Just returned from radiology, yep, something is going on. The contrast is not draining from his stomach like it should. They also did an ultrasound which ruled out pyloric stenosis. So now they know what it isn't, but the rad couldn't tell me what she thought it was. She was going to consult with Dr. Z and try and put the puzzle peices together with him.