Another quick update on Logan. The dietitian came to weigh him on Friday and we did not see an excessive weight gain as he's had the last few times. He actually only gained 4 ounces in 2 weeks putting him up to 13lbs 7oz. Our dietitian Brad said that there is no need to panic - after all we can't expect him to gain huge amounts every time. Logan is growing at his own pace quite nicely and as long as he's not plateauing or losing then there is no need to worry. However we are not ready yet to go without the g-tube, Adam and I would like to see him reach a higher weight before playing around with it. We also believe that there are 2 things contributing to him not gaining as much these last 2 weeks...one being that we don't use the g-tube faithfully EVERY night. He can afford to go a night or 2 during the week without it. The other reason being that Logan is VERY active and always moving, he most likely has a high metabolism. Brad agreed to wait 2 more weeks, weigh him again and go from there. As nice as it would be to have the g-tube removed before summer, its not worth pushing Logan and slowing down the weight gain process. We've realized that he still manages to gain more when he continues to use it. We also go for another follow up visit at Mac this coming Thursday with the GI team, so we'll see what they have to see with how far Logan has come since last visit.
We continue to thank the Lord for Logans progress. Its hard to believe that just a few short months ago we weren't even sure he'd make it this far and now he's surprising us all the time with the new developments that he has week by week. What a loving & merciful God we serve that he watches over us and carries us close to His heart. The Lord's love for us never ceases to amaze!
"Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." - Lamentations 3:22-23
From personal experience I would be hesitant to take the g-tube out after such a short time. You would hate to have to do surgery to put it back in again. Many families wait until they haven't used it for a year or so before they consider taking it out ... that way they've had opportunity to go through various ups and downs and see if it's needed at all.
ReplyDeleteIf I understand from you last post the reason you would like to put it is because it gets in the way. Are they not able to get a Mic-Key button tube for someone his size? If you are not aware of what a Mic-Key the best way to describe it is to say it is the cadillac of g-tubes - flat and pretty much flush with the skin, out of the way ... we loved ours ... haven't heard of anyone who hasn't.
Here's a picture of what it looks like: http://lysinuricproteinintolerance.blogspot.ca/2007/04/old-versus-new.html
Wishing you strength as you continue to care for Logan and watch his ups and downs. Thankful that altho not leaps and bounds this time he is still going in the right direction.
Thanks for the info Steph! Thankfully in Logan's case he will not being needing the g-tube longterm. We have high hopes of it being removed before he turns one at the end of summer. Our other son Malachi had this as well, just not as severe. The great news is that by the time he turned 1 he completely kept his food in and was growing more rapidly. Logan's being at about the same point Malachi was at this age, so we see a light at the end of the tunnel! :) We don't want to remove the tube until we are positive he's growing well because even if we don't use it for a bit it probably would be wise to leave it in just in case. Although with the way Logan's been our doctors & dieticians said it would be pretty odd if he had a relapse at this point and went backwards.
ReplyDeleteHe was given a PEG tube during surgery because apparently they always start with that and then after 3 months (when its healing) if its decided it will be more longterm they will switch to a Mic-Key. If they know a child will have it for life I believe they start with the Mic-Key right away. As nice as it would be to have the button in stead of this coiled up long tube, its just not worth the hassel of getting a different one put in when he won't be on it much longer.
It has become part of life and we are just used to using it, but I won't lie - I look forward to the day that its gone as it takes up alot of our time each day/night.
- Jenn Linde
I hope that Logan continues to progress and that solids will not be a problem for him. It's wonderful to hear that things are going well after how things were at the beginning.
ReplyDeleteAs far as a I know a PEG is always inserted when they do surgery (it's been a few years so who knows what advances they've made in this are), this is because it is anchored better with a bar behind to keep it from coming out and allow better healing as it's more open on the skin. A Mic-Key is held in by a balloon so it needs to be inserted into a healed hole.
All the best,
Steph