Desmond Update

18 posts / 0 new
Last post
KET_2010's picture
Joined: 08/13/11
Posts: 1737
Desmond Update

A little before the holidays they admitted Des to the hospital for "Elevated sodium levels" and did blood work on him. They had to put an IV in him to bring his levels down. They said he was dehydrated. And he lost weight...again.

however, before the IV was put in, the blood work came back saying his levels were never elevated (they were 142, not the 152 they originally said, and they're not suppose to be above 145). So all of it was pointless really.

Today we went in for another weight check (we had one on Friday as well). In Dec he was 14 lbs 3 oz. Friday he was 14 lbs 7 oz. Today he was 14 lbs 6.6 oz. BUT on another scale he was 14 lbs 7 oz and another yet he was 14 lbs 1 oz. WTH? NONE of their scales are the same and they know this. He was weighed on a scale he has never been weighed on before and the one that said he was the same weight as last week is one he has been weighed on before that said he was less than another scale. UGH.
I'm suppose to have another appt on Monday. They told me if he doesn't put on any (or enough) weight by then he has to be hospitalized. And not there. Either in San Diego or Loma Linda (which is in Palm Desert I think). They're talking about giving him a feeding tube because they said he's not eating enough. But he eats ALL the time. He just doesn't eat junk. He eats bananas and apples and finger foods. My mom says I have to put him on baby food. But even when he was eating that it didn't change his weight.
I feel defeated. My husband left today for 30 days of training. He doesn't even have his phone so I can tell him he may come home to his son with a feeding tube. I just want to sit and cry.

I need to get his weight up or something. They want him to be a certain weight. I was in the 0% as a baby and so is he but they won't accept that. I get that he shouldn't be losing weight, but how do I know he actually IS if none of their scales are the same? I'm so stressed out and I don't have any support around here (or from family) about it. all anyone will tell me is "Feed him more" I can't force him to eat. He barely will eat from a spoon. He nurses ALL the time. He's so active. But all they can tell me is that they are afraid his brain is going to stop growing and he won't mentally develop.

Sorry, I just had to get that out and at least here, I feel like I have the support to continue to BF and do finger foods and do "trust your gut" and stuff. I just wish they would get off my back about him not being a big kid.

KET_2010's picture
Joined: 08/13/11
Posts: 1737

And here are some recent pictures of Des (don't mind his runny nose, it's from him teething).

Joined: 01/16/07
Posts: 951

I'm so sorry I can't even imagine the stress.

My only thoughts are write a letter explaining your situation (stats, Desmonds motor level) anything of relevance and email multiple people requesting thoughts/suggestions/second opinion/options

Gastroenterology, Hepatology and Nutrition
this is the big sick kids hospital here in Toronto I'd email them plus any kids specific places that are big in the States

hoping for good answers soon. I would really fight a feeding tube too. There has to be other alternatives they can work with you on before it comes to that.

KET_2010's picture
Joined: 08/13/11
Posts: 1737

According to them, they've given plenty of chances for him to gain weight, and it's either that or hospitalize him where they would monitor him for 3+ days and probably do a feeding tube there as well. I made a giant batch of baby food last night and tonight and he's been eating it. I mixed it with coconut oil to help enrich it and raise the calorie count it in. I have an appt Monday at 10 to see if he's gained weight. He eats ALL THE TIME. And they can't tell me they know EXACTLY how much he's eating when they can't see how much he's eating when BFing. It's just so frustrating.

But I'm trying to take it one day at a time. I dunno what's gonna happen if they tell me he has to get a feeding tube. They acted like it was no big deal for him to have it. Anyone who has spent time around him would know how much he eats.

They also told me it doesn't matter how mobile he is because they're more worried that if he's not eating enough then his brain is going to shrink and he's going to not develop mentally and become slow. Wow my drs are nice lol.

Hopefully he will gain some (although it depends on what scale they're using!) and that this month will be over and all these weight checks will be over. As soon as that happens I'm switching drs (I don't think I can while in the middle of all this).

I will write to those people though. Hopefully I can get a response from them to see what else I can do. Thank you Smile

Joined: 01/16/07
Posts: 951

well good luck getting food into him. Keep track of all the extra food he's getting.....hopefully that will at least keep them happy. At this point I'd personally be willing to try formula (in addition to bm) before feeding tube (esp if they'd just be putting formula in feeding tube)
here if you need to vent

KET_2010's picture
Joined: 08/13/11
Posts: 1737

They want to supplement formula, but he won't take a bottle. They keep going off of how much I can pump out that "that's how much I produce and how much he eats" which I know isn't true. So they see I can sometimes pump out 2-3 oz every 2-3 hours so I only make that little amount. But I know that's not the case.
It's just frustrating that they're being so extreme. I was reading things online about others who had their babies on feeding tube and after so long their babies refused bottles and the breast and won't suck/swallow because they're use to their tummies just filling up. Do they really think that's the best way to do things? He does eat. If they suggest a feeding tube I'm going to refuse. I don't want him to regress because they're being idiots.

Sorry, I'm just so angry about this whole thing. I feel like they don't give small babies a chance and even though they know their scales all read different weights, that they just want him to be a 20 lbs kid at 9 months. But he's not going to be. He's a small kid, just like I was! At a year old I was 17 lbs. It just irritates me because they think formula will fix everything and honestly I don't think it will (nothing against FF).

UGH I just want them to back off and realize every baby is different.

Joined: 01/16/07
Posts: 951

I know Sad I'm feeling angry for you. Feeding tube to me is last resort (for a baby who's not eating).
If he won't take bottle what about sippy? Adam barely drinks water so I know not easy. If not what about seeing if he'll cup train? Or even try using a spoon to get some formula into him? Understand totally on formula just trying to think of alternatives to feeding tube.
Hope you get some answers from sick kids hospitals , they seem a little more open to various situations (likely because they see more than just the norm)

KET_2010's picture
Joined: 08/13/11
Posts: 1737

He more so chews on a sippy ha ha. I guess I could try to get him to drink out of a regular cup, lol never thought to try! With a spoon he battles me against the spoon I have (ha ha like a sword fight!) and he mostly just wants a spoon to chew on. I can try that too though since I've been meaning to Smile

I did write the hospital and I'm hoping I heard back from them before Monday. I was looking over his weight ups and downs, and at one point it said he gained almost 2 lbs in 2 weeks and now I wonder if maybe he gained only a pound and the nurse messed up. Then I did all the converting (from grams and .blah blah blah pounds) and saw that a lot of it is just a matter of ounces or even 1/2 ounce differences...which of course, with their scales being off, means he may not have been losing weight like they say. At this point, who knows what his real weight is anymore!

jhj
Joined: 08/06/11
Posts: 360

How are the other measurements of his growth?? Is he getting taller? Is his head circumference growing? You are in such a difficult situation. On one hand, you know your baby and your own history best, but on the other if there is something that needs medical attention you want to know and take care of him.

Hope you are able to get the answers you are looking for and CONGRATS to Desmond on walking!!! That is soo exciting!

Heather

KET_2010's picture
Joined: 08/13/11
Posts: 1737

He is still growing long. I know last time I checked he was 27 1/2 inches I believe. That was a month ago I think? Or last week. Honestly I can't remember because of all the appts we've been having Sad They never tell me his head circumference though so I dunno how that is. They never comment on his head not growing so I assume it's fine.

And you're right. If there is something wrong I would like it found out, which is why I had agreed to the blood work in Dec. But they lost all my trust when they screwed up the results :/

AnnaRO's picture
Joined: 07/06/08
Posts: 7033

You need a whole new set of doctors. In fact, I don't think he needs any doctors. He's fine!! He's way advanced, developmentally and formula is NOT going to FIX anything, because he's not broken!!! I am so irritated and frustrated and outraged for you I can't even sit still! Do NOT let them put in a feeding tube!! Tell them you want a second opinion, and then a third. Find a doctor who's an expert and knows that different kids are different sizes and that it doesn't mean anything is wrong with your son!!! I think you should threaten to sue them for all emotional distress and unnecessary medical bills. And then, when they find nothing wrong with your son, maybe actually sue them so they won't do this to anyone else.

Your momtuition would tell you if something was wrong with him. He is FINE!!!

KET_2010's picture
Joined: 08/13/11
Posts: 1737

BAM! Desmond gained a little more than 7 oz in 4-5 days.

At least they're off my back a little. We go in next week to make sure he's "maintaining his weight". As soon as this is all done, I'm switching drs. I went in prepared for a fight ha ha.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

You could do what they do for tiny babies. Weigh him before and after he nurses. The change in weight will tell you how much he drank. You need an accurate scale for this (one that is in ounces not just pounds). What you pump is not the same as what you get out while nursing. My DS is 2, if I tried to pump I would get NOTHING. But he nurses and he gets milk dribbles coming out of the corner of his mouth so I know he's getting milk.

:goodluck:

KET_2010's picture
Joined: 08/13/11
Posts: 1737

What's funny is when I asked the drs about that, they said no that wouldn't tell them anything -_- They also said my not getting to nurse him a few hours before an appt had nothing to do with his weight dropping (I think because I didn't nurse him before an appt, that's why it seemed he dropped 1/2 an ounce).

Naval sucks ha ha.

But I was looking in to getting a scale like that because they were getting so ugh about what I was pumping out and him "not eating enough". I was looking on Amazon for one so I can do weight checks at home as well so I know if I really need to worry or not. Smile

jhj
Joined: 08/06/11
Posts: 360

That is great news for Desmond! That is a huge weight gain. Hopefully the doctors will start to relax and let him grow at his own pace!

Heather

Lolkje's picture
Joined: 08/24/09
Posts: 90

If they are worried about his brain then his head circ is the most important thing. If his head circ is growing adequately he's fine. We only started supplementing DD1 with formula when her head growth dramatically slowed down. INSIST on seeing his head circ chart.

KET_2010's picture
Joined: 08/13/11
Posts: 1737

I was surprised they never said anything about his head growth when they were making a huge deal out of his weight. They never said anything about his height except one time when they said it slowed down. they just said they're worried that *in the future* his head would stop growing along with his brain.

I also have been learning that no one has had a problem with their babies dropping percentiles and such until moving out here and that it's also only those two drs I saw that make a huge deal about it. Another mom out here said that the dr we see told her she had to supplement with formula because he FOUR MONTH old wasn't sleeping through the night and that meant she wasn't producing enough BM and that that was why her baby dropped in percentiles.
Kind of irritating. The only thing he ever said about DD2 was if her height and weight had always been so dramatically different (both girls have always been 80-90% height and 10-20% weight). He left it alone after that. But with my son he won't, so I'm going to be switching to a dr who encouraged BM supplement if I was able to pump enough out. He was also the one who fought for us to get out of the hospital in Dec. He and the other guy I really like are in Family medicine whereas the others are in Pediatrics.

Shew, sorry for the rant. I'm just mad at Naval still lol.

Joined: 01/16/07
Posts: 951

sorry for my late reply

yay weight gain Smile
awesome news. Hope you can get new Drs or email response from some one that you can use as consultants with your Dr