Tuesday, May 4, 2010

1step forward, 2 steps back

Well, since that last MARVELOUS update, poor Jayden has contracted ANOTHER staph infection. He had just gotten over a pretty bad one in March. This one is just above the area where he had the first one. He's on antibiotics for it and it's draining, but painful for him.

So today was his followup with the GI Dr. I was looking forward to this appt b/c Jayden has been eating so well lately. Well it seemed great to me b/c he went from not eating anything, to eating 3 meals a day (although very small portions and no real variety), and lately he's been eating 2 meals a day. I could even see that he'd put on weight. So we got to the Dr this morning and he weighed 32 lbs. He was 30lbs when he got out of the hospital, so he gained 2 lbs. The Dr walked in the room and the very first thing she said was "He's lost weight and I'm very concerned about that." Jayden weighed 35lbs at his last visit 2 months ago. During that visit, the Dr told me that she was concerned about his diet and that if he lost any weight, we'd have to discuss a feeding tube. So here he is 3 lbs lighter than he was at the last appt. She sent him for blood work and we have to send in a stool sample. Depending on those tests results, he may or may not need to have another GI scope done.

We headed upstairs to get his blood drawn. Jayden usually does so well with this, but I think after being at the Dr for the staph infection and remembering that pain, he was not ready for more pain. He did cry when they drew his blood, but he definitely didn't freak out. No kicking or screaming, just an upset cry. When the nurse finished, she gave Jayden 2 spiderman stickers and a sucker. We walked out and I was opening his candy when Jayden started crying and saying "Scared, monster." and he was walking very wobbly. I figured he was being dramatic so I said "It's okay baby. It's all over, no more needles." and I continued to open his candy for him. Then he stumbled over to me and clenched on to my leg really tight and let out a loud scream and said "MONSTERS!!" Then he was hyperventilating. He'd had a seizure :( I had to sit down with him and calm him down but I couldn't sit for long b/c I was starting to have a panic attack and needed to get out of the clinic for some fresh air. Jayden was a s sack of potatoes by then. I put him in his seat and we went to grab lunch (that he wasn't even alert enough to eat) and then headed back to the clinic to meet with the dietician.

As it stands, Jayden needs 1400 calories a day. The dietician estimated that Jayden takes in approximately 650 calories or less, which is not good. I told her what all I've been doing and she said it really sounds like I'm doing all I can. She suggested some minor changes to increase his caloric intake, but really she believes that his gut is just taking a longer time to heal. She mentioned the feeding tube as well, so I do feel a bit defeated and I feel anxious b/c I have 4 weeks to get him to gain more weight and even then, that won't guarantee us that he won't still need a tube. I know it's not the worse thing in the world, but I truly expected to hear different news this morning.

We made it home and Jayden got in his bed and immediately threw up all over himself and his bed. Today has been one of those days that I just want to wake up and start all over again. And also, I went to the Dr for my back last week and the x-ray showed that something is wrong with my discs, so I'm having an MRI on Thursday. I'm doubled over in pain now, from having to carry my sack of potatoes around after his seizure today. I hope that whatever is wrong with my back is easier to fix than Jayden's Celiac and seizures are b/c he depends on me!

BTW, I just want to make sure no one is freaking out thinking that their 3 yr old is underweight and may need a feeding tube b/c s/he weighs the same or less than Jayden. He's not underweight, (although he is on the lower end of the scale in comparison to his height) but it's not a good thing for a child his age to lose weight and we already know that he has the Celiac Disease so he has intestinal damage.


Jess said...

I have a good friend with twin boys who are my son's age (the three of them were born in Dec 07) and one of them has a feeding tube. It could be worse....it could be better (though I say this mostly because he's on 24/hr a day j feeds, so it's not as easy as a g, which I ASSUME? is what you're discussing.). Certainly it's done great things for him weight-wise. He's abt 19lbs now, so you know he was in dire need.

That said...I'm not sure it sounds like Jayden is in dire need....based on what that friend has gone though. Would he drink any formula/pediasure/carnation instant breakfast? Or can/do you add any supplements? If it's JUST calories, you can add a lot of things...duocal, polycose, etc. Polycose we used to use for Ethan, but that's really ONLY calories, the nutrition is far from complete.

I don't say this because I think it's the WRONG decision to do a tube...but that if perhaps you could get him GOING a bit in the few weeks you have, the dr would consider giving him some time? If you want any more info, I can see if it's okay to give you her email and she'd probably be happy to answer any tube/feeding questions.

Mommy said...

Thanks Jess. Jayden isn't in dire need, weight wise, but he is in need due to the lack of nutrition/lack of caloric intake/and the ongoing damage to his intestines. Also, secondary to all of this. His immune system is low and that's why he keeps getting sick. The Dr is speaking of a g tube, but yesterday evening Jayden did drink some pediasure! So, I think if we can replace his rice milk with the pediasure with no bad reactions, he may be okay. But in the end, it all depends on the health of his intestines b/c malabsorption is a concern at this point.

Cathy said...

I'm Jess's friend, she linked me over here.

If you do want to talk about feeding tubes, let me know.

If absorption is the main issue, a tube might not help. You can force in more fluids, but dumping 1400 cals into him a day might wind up making him feel sick and awful, on top of the problems inherent in feeding tubes.

I'd look into semi-elemental formulas (Vital Jr, Peptamen Jr) because they're more easily absorbed than Pediasure. MCT oil as an additive is easily absorbed. You can try cooking with formula (replacing milk with pediasure in recipes) to add nutrition and cals, add powdered formula to things, pushing pediasure/formula as snacks, making them into smoothies, etc.

It does sound like he needs SOMETHING to change, and I hope you guys figure out what's best for you!

Mommy said...

Thank you Cathy! He's been drinking the PediaSure now and he looks thicker to me but of course I have no clue. I don't put him on my scale anymore b/c it gives me false hope ;) We rec'd his bloodtest results and they show a deficiency in his immunoglobulin levels, so he sees an immunologist on Friday. I am so overwhelmed by it all, but I will definitely consult with the dietician and ask if we can try Vital Jr or Peptamin Jr. Thanks so much for the information and I will be in touch with you if we do need to go that route.