Surgery update

[Anonymous]

Thank you for your prayers…. the surgery went well. The endo showed his stomach and esophagus are in great shape (he had some irritation prob caused by NG but was really tiny). Doctor said was a great incision and his body reacted well. He woke up at around 11.00am (so one hour after going under) and was freaking out but he was on a low dose of morphine for about 24 hours. They were really worried because his blood pressure was extremely low (something like 80/20) at times but turns out it was just the way he was reacting to the morphine. We tested the tube with pedialyte yesterday (thank god, he pulled his IV out shortly afterwards) and was on continous feeds at night doing well. He drank a whole 2 ounces of formula this morning for breakfast and had some stuff for lunch but then he threw up (my fault… i now have 60cc syringes and i think i went too fast).

The wound is clean and no irritation for now. It is easy to clean. ONly problem is Matthew is pulling it from the part that it enters the stomach. hopefully he is going to realise soon that it hurts.

It is going to be an adjustment period BUT we can finally see his face and he is just so cute. He also lost about 2.5 pounds but hey, what can we do. We have to feed him slowly now so we expect more weight loss and then hopefully up from that!!! I have a panic attack everytimme i have to touch tube and wound but now i remember i was the same way when he had the NG at first.

The almost 3 days at the hospital were tough… finny i knew more about feeding pumps than the nurses so at least i could get around.

Dr Sockolow was just amazing, as usual.

Now life is going to be stressful… i have ot learn to operate the pump, watch the Gtube and we are moving on wednesday, so may not be around much but wanted to thank all of you who prayed for my little one.. he is a fighter adn now… we will work on putting on some weight and then slowly think of a path for waening.

[Anonymous]

Oh and i forgot… we went to feeding clinic on Tuesday. They were really really good. First, he had OT session… he cried all of the time and thew up a little bit BUT the OT thinks he is strong and really can do moves when pushed. Now it is going to be a few weeks until we get another session because Gi wants to give stoma a chance to heal, but we will continue to do some exercises if he lets us.

On the feeding – again he was watched when feeding. THey told us again that for babies with aversions, there is no real miracle. We are going to have to work long and hard. They still want to concentrate on pooping so we are on 2tsp a day and we will see if that helps. They said NO WAY to starting offering cups or eat and dissolve or anything like that. We need to work on his volumes and how to get him to take more solids because eventually he will really only eat those, so they are not worried about formula (i guess they are thinking we have the tube and it is more important to get him to like solids). They gave us some tips – offer up to 40cc of formula at the beginning of the feeding; then offer 4 spoonfuls of solids, one every 15 seconds. (You offer for 5 seconds and you take away for 10seconds) regardless of whether he takes it or not. You say open when you offer spoon and you leave it in the same place for the 5 seconds, regardless of where baby’s face is. then you say well done but not much enphasis just small praise. After the 4 bites, you offer sip of formula.

The feeding therapist that gave us these tips was nice. He said it is going to take time… real aversions can take up to one year and we are looking at a long time with the tube. But they were nice and supportive. With these kids he said you cannot really do too much at once. Because of Gtube they want to see us in 3 weeks

Supposedly this is a good strategy if you want to move your child from eating formula to eating more solids… if you are interested i could email you the form – just email me as i am not going to check this too often

[Anonymous]

I’m so glad the surgery went well and that you are home. I hope you
find some time to relax over the next few days and I hope the move goes
well and that Matthew gets used to the new tube and starts putting
weight back on – would love to see his cute face now too!

Has the Miralax been helping?

Sounds like good feeding tips too – I’d love the form if you can email it to me – I’ll email you as well.

Hugs to you and Matthew!

[Anonymous]

Thais, thank you so much for the update. I’m so glad that the surgery is over and that you are home with Matthew again. Of couse, I have been thinking of you over the past few days. It sounds like he did very well overall. It must be so wonderful to look at his beautiful face and big blue eyes, but not to see the tube now. For what it’s worth, our doc (who we just saw) told us the same thing about feeding issues… that it can be a long haul for kids with feeding aversions, so I am just glad that I have the rest of you to help me along on this journey. It sounds like you may have some challenging days ahead as you adjust to the tube, but it will be a learning curve and I know that you and Matthew will do great. Good luck with the move. Lots of HUGS.

[Anonymous]

I’m happy to hear that Matthew is o.k. and I will continue to keep him in my prayers.

[Anonymous]

I am so glad it went well! I will be praying for you and Matthew!

[Anonymous]

I am so glad that all went well. It took me months to get adjusted to a feeding schedule and to get used to the travel/feed thing…I am sure you are going to be much better than I was at that.

Interesting method of the offering food for 15 seconds. We meet Christian’s new feeding therapist on Tuesday – hopefully we can get some good advice soon too.

[Anonymous]

So glad all went well. Hope things continue to improve. Its good to hear a positive story from feeding therapy for a change.

[Anonymous]

Thais – I am glad to hear that everything went well. I remember when Brian was 10 month old, his eating was really really bad (1-2 oz every 4 hrs, then syring feed), that was when he had endoscopy and ph test done, but his eating gets better as he gets older, so I hope Matthew eating will get better too as he gets older and gets help from the feeding clinic. Sharon Liu2006-6-12 21:22:40

[Anonymous]

Was just wondering how Matthew is feeling/doing. Hope all is well!

[Anonymous]

Thais,

Sorry, I’m a little behind on posting to your message. I am so glad that everything went well with the surgery. How are the both of you doing? Is he adjusting to having the tube, and are you getting more comfortable with taking care of it? I often think that Noah still may end up with a tube someday. Even though he is eating some purees and is getting liquids from his sleep feeds, I know that he cant continue getting his liquids while asleep for much longer. After that, I have a feeling that we will either hit rock bottom because of his lack of weight gain or because of his aversion to liquids.

I would love to see the form that your feeding team gave you. If you get a chance, could you email it to me at [email protected]

[Anonymous]

Lisa

Have not been around for a bit… Matthew is doing well, thank you. He is adjusting to the tube and so are we (it is a bit tougher at night and he is throwing up a bit because we are not getting the speed of the feedings right) but he does not seem in pain and it is so great to see his face (oh yes and no more stares from anybody, unless his tube shows from under his pants LOL). I am going to scan the feedinng page and email it once we are all settled but i kind of put the jist of it in the poster by Tracy under feeding. We are going next week again to clinic so will update everyone on techniques etc.

[Anonymous]

Thais, ignore my post to you from the other section. I was just wondering how things are going, but I found it here. Glad everything is going well! Sounds like things are going great!

[Anonymous]

Lori

Yes, just saw your post… don’t know how i am going to catch up on everything but we are doing well, thank you! New house is great… we have a small backyard and more space so Matthew is loving it. He took his first real steps yesterday and we are just trying to figure out how to help him learn the transitions etc (i posted under misc) and waiting for EI to come around. Unfortunately, they said that they may not be able to help him because his feeding skills are appropriate and he is kind of walking but we shall see… we are hoping they will help.

How is Hailey? I saw the post about Sarah – pretty good to have a translator, hmm? Hope Hailey is taking more foods these days!

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