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I am not sure exactly where to post this but I thought maybe some of the mamas here might have some advice.<br><br>
My almost 10 month old son just had his cleft palate repair surgery on Wed. He of course was in quite a bit of pain and wouldnt eat.<br>
The second day after the surgery, he ripped his I.V. out and they left it out for almost 24 hours saying it might make him thirsty and want to eat. He got dehydrated and they kept telling us we HAD to force feed him. We refused and kept just offering food by bottle, syringe and spoon. Finally, I got him to take 4 ounces of banana mixed with milk. He devoured it! He kept grabbing at the spoon and crying if I didn't get it to him quick enough. And then 30 minutes later I got him to drink 3 ounces of formula. They said he was dehydrated and hadn't pee'd and then the Speech pathologist from the cleft lip and palate clinic came with her entourage and they stood there staring at us and said what i had fed him wasn't enough and that I had to get another 3 ounces down him right that minute or they were going to finally give him another I.V. I said the I.V. was fine and that we would continue to try to get him to eat as he wanted it. They got mad and said I was letting him fool me and that he was just refusing food because I let him get away with everything. They then also accused us of lying about how much he had eaten for me because he hadn't wet his diaper yet. I took a break an hour later thinking they would just place an I.V. and we could continue offering him food. How I regret actually trusting any of them to respect our wishes.<br>
They force fed him while I was away. They force fed him 8 ounces of banana/milk mixed and then as I walked back in the nurse shoved his haberman in his mouth and he puked ALL of the food up. The look on his face was horrible. I have never seen such a look of fear and I swear he thought he was dying. I was trying to get to him to grab him from her ( i'm pregnant so I just wasn't quick enough), instead of her trying to help him stop choking, (He was gagging, stiff as a board and turning blue) she held him down and said he had made himself throw it all up and we couldnt let him win. I LOST IT and got him away from her but she refused to admit any wrong doing. The surgeon, residents and all of the other nurses, charge nurses don't believe us when we say he is Traumatized. They put another I.V. in him but it went bad last night. The thing is that now the second anyone picks up a bottle, a spoon or whatever even across the room, my son goes catatonic. It's awful.<br><br>
I let him play with food in a high chair trying to make foodless traumatic, but it's not working. I don't blame him at all after all he has been through.<br><br>
The Hospital staff wont get off our backs and they think forcing him to eat is the only way. I can't leave him for a second unless my husband is with him because I don't trust anybody in this hospital.<br><br>
I just don't know what to do. We are on day 5 and I can't find anyone to listen to my side and of course they are threatening us with all kinds of stuff like a feeding tube. I am so frustrated that all the progress I made with him they destroyed.<br><br>
We are home right now on an afternoon pass. They agreed to let us bring him home until 5p.m. thinking he might be more relaxed and eat for us here but his response is still the same.<br><br>
I don't know what I'm asking for exactly, I guess just some support and I am open to any advice. Is there a way to get it in his chart that we do not want him force fed? Is there a way to ask for them to not force feed him without them taking this as us not trying/refusing to let them feed him?
 

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Gosh, I don't have any firsthand experience with this, but I just wanted to let you know I read your post and I'm sending some hugs and positive thoughts your way! Poor little guy...I can't believe they gave him all that so quickly and no wonder he vomited and is leery about eating <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I hope things really start to improve and he continues to heal well.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Mama<br><br><br>
I couldn't read and not respond. Maybe there is an patient advocate that you could talk to at the hospital. I don't know...<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I am so sorry you and your DS are having to go through this. Will he eat mushed banana off your finger? Just thoughts
 

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What an awful experience for all of you. I'm so sorry to hear it.<br><br>
Can you get a consult with another speech pathologist or an occupational therapist who specializes in pediatric feeding? I'm a speech pathologist myself. There is definitely a wide range of approaches within the field - it sounds like it would be good for you to find someone who has a more "child-centered" approach, to say the least.<br><br>
Also, I'm not sure how it works in Canada, but if it's anything like it is in the U.S., you absolutely have the right to refuse or decline any treatment. If there are any hospital staff members that you think are a little easier to talk to, you can even just ask them to clearly explain to you what the protocol is for you to accept or decline any recommendations so that all staff are aware and can comply.<br><br>
In terms of a feeding tube, I don't know what kind of feeding tube the staff was talking about but there are definitely times that a temporary feeding tube (through the nose) can help a person get hydrated and get stronger so that they can then eat better and not need the tube anymore. I don't know if that's the case with your son, but from what you've described it sounds like the bigger issue is his stress from the situation.<br><br>
There are plenty of compassionate, capable pediatric feeding specialists (speech paths and OTs) out there who ought to be able to help you! Can you request a different speech pathologist? Is there a social worker at the hospital that might be able to work with you through this difficult situation?<br><br>
Good luck! I hope it gets better soon!
 

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Having read the other responses, including the one about the patient advocate I thought I'd suggest speaking w/ a social worker who could help you negotiate the gentle care your family needs?
 

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nak<br><br>
Wow. That is awful. DD1 was traumatized at birth from deep suctioning and cried while nursing for months. It was a horrific experience. Craniosacral therapy healed her. You can read a little more about it here: <a href="http://www.iahe.com/html/therapies/cst.jsp" target="_blank">http://www.iahe.com/html/therapies/cst.jsp</a>. You can search for a practitioner here: <a href="http://www.iahp.com/pages/search/index.php" target="_blank">http://www.iahp.com/pages/search/index.php</a>. They should have taken CSI, CSII, SERI and CSP at a bare minimum. And ask if they have experience w/this. It might take a few sessions for him to work through and release the trauma. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">s mama, and good luck.
 
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