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Our life with a toddler and identical triplet boys!

Life with Big Big Brother and Identical Triplet Boys!
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Thursday, April 21, 2011

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.

5 comments:

  1. Brooke and Ben you are both so strong and Evan is so lucky he has you to voice what he needs. I am so sorry you have to go through all of this. Keep up the good work!!

    Praying everything turns up OK with his tests.

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  2. I AM SO SORRY that you guys are going through this but Evan is such a lucky boy to have you both! I can't say I have gone through even a fraction of what you guys have been through, but I have had to fight doctors to get the best care for my kids as well. Doctors have a hard time thinking out of the box and they will never know you child(ren) as well as you so don't ever let them tell you he is fine if you feel differently. I am so glad that you are sticking to your guns and fighting for what Evan needs. He is a fighter and has proven that many times already. I will continue to pray for all of you and I hope you get some answers soon.

    Take Care,
    Chas

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  3. Good for you, for speaking up! You are the best momma. We love you!

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  4. Oh Booke and Ben ! I cannot imagine how you are feeling, but keep your heads up ! You are doing the right thing by pushing for Evans needs. One time Ellie ended up in the ER with pneumonia and after a few breathing treatments and somw steroids the Dr tried to send us home. I could tell she was still struggling to breath and I was scared we would get home and something would happen. When the nurse came in to discharge us I told her that we were not leaving and that Ellie clearly was still very sick. She agreed and we were admitted into the hospital. I remember feeling like the Dr probably thought I was crazy for refusing to leave but I would rather be a crazy Mom with a healthy child than a passive Mom with a really sick child because I didn't speak my mind. This situation in no way compares to all you have been through but I learned then that I must be her advocate. Because even a Dr who we want to believe has our best interest at heart doesn't always know best. Anyway sorry for going on and on :) Praying for Evan and all of you. Stay strong !

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  5. I am keeping you in my prayers. Just remember God is good, and never give up. Evan is soo lucky to have such strong and amazing parents as well as brothers. He needs that. We are here for you guys! And never hesitate or be scared to ask the damn doctors questions! You're his mom! Momma's know best!!

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