Friday, November 6, 2009

A Little Glitch with the g tube.

Things have been a little crazy around here and I haven't gotten a chance to update. We got home on Monday from the hospital.

Tuesday we went and got some blood work done for Wysdom and he got his H1N1 shot. I must say that it was pretty uneventful. We were able to take him into the clinic and get it done right away.He didn't have any fever or reactions and we are so thankful for that. The clinic treats children with high needs so there was no line or chaos. When we got home on Tuesday we had a home care nurse come and visit us and order some supplies for us. She thought that the g tube site looked a little gunky or full of leakage and pus. Yup it didn't look to good. I have never seen one before in person, but I felt that it looked a little painful. Wysdom would scream his head off every time we cleaned it. Oh how my heart hurt this week just hearing him in so much pain. My stomach would start to knot at the thought of cleaning it and I was worried if I was doing it right. So I was very happy to have the nurses opinion.


So Wednesday we continued to clean the wound as best as we could. It was very difficult to clean as the g tube was so tight against the skin. We were given all these instructions to clean underneath the tube and rotate the bar,but we were having a hard time. Later in the the day we had our feeding team come in to weigh Wysdom and to see how he is doing. His weight is 19 pounds and he actually gained some through the week in the hospital. He has started to babble more, respond to more noises and open his mouth for food. Ah what a great site that is. It's so encouraging to see now that the ng is out.

Thursday our nurse came back to see how the g tube wound was doing and she thought that something was not right. She thought that it was still to tight and wanted us to go back to the hospital for them to check it out. That's right! Can you believe it. So we called and got an appointment for Friday morning. She was also concerned with how much pain Wysdom was in when she went near the tube. I was also alarmed and emotionally drained from all of the pain he was in and screaming he was doing.

Today(Friday) we headed back to the HOSPITAL. The nurse and the surgeon decided that the tube was to tight. Unfortunately since it has been so tight we have not been able to clean under the t bar and the bad news is that the pressure of it cut his wound open more.!!!!!!!!!!!!! So now there is a tear. Oh my poor little man. The surgeon says that this can happen and that now we just have to wait to see if it will heal. So we headed home a little disappointed that this happened. Blyss can literally not take her brother screaming anymore and has to be removed from the area while his dressing gets change. We tried to do this at the start but both my husband and I were working on Wysdom together. The good news in all of this is that his eating and babbling seem to be thriving in the absence of the ng. As well for the first time tonight he didn't freak out and scream when we cleaned the g tube. So that was encouraging and such a relief to me.

Sorry for the long blog. All I can say that it is sure hard sometimes to be a mom to a medically fragile child. It's not that you don't love them, because I love him more everyday. It's just that I hate seeing him in pain. So I am praying that he has better days ahead. Boy Wysdom, you are one tough boy.

16 comments:

heather said...

What a blessing your nurse found the problem sooner than later. His site will heal and he won't scream during the dressing changes once it is all healed up. You are doing a great job and you're right...it's not always easy. Sometimes I think thats what makes it so worth it!

Adrienne said...

Oh I hope it heals up quick. Poor little guy but you're doing the best you can-so glad they were able to figure things out for him! Hope this weekend goes better for Wysdom and for you!

Lisa said...

Oh, Wysdom! I hope you heal quickly!

Lacey said...

Hopefully that site heals quick. Make sure you put some cream on it. If they didnt give you any desitin or baza cream work great.

Baby Gabe said...

Because the Gtube is so fresh, I would expect the tear to heal quickly. Gabe's actually popped out during a bath 1 week after he got his b/c the suture came loose. His tore a little. They put a new one in and we cleaned with half hydrogen peroxide/half sterile water and it has healed up great. We also put Mepolex lite bandage around it to secure it and prevent the wafer from rubbing against his skin. This has also promoted healing. His stoma now looks really good and isn't painful at all. Good luck!

ch said...

I hope your wound care assistance is helping out and that you feel supported. I'm learning more and more how lucky we have been with LC's Gtube site and the fact that our first tube placed was a fit.

We'll be thinking of you and hope the tear (ouch!) heals quickly!

RK said...

Better days ARE ahead and very soon. And yes, he IS a tough little guy!!

Stevenson Family said...

Oh poor Wysdom!! You guys have been through so much. Hope it only goes up hill from here.

Sasha said...

Thanks everyone for all your comments and tips. I will look for the products that you have mentioned. Right now we are just using saline. Doctors orders.

Kim Rees said...

Hi Sasha! Just got a chance to catch up on everyone's blogs this morning. I agree with the above comments in regards to keeping the site clean. We too had issues with the site and to make matters worse we were on vacation and had to go to an emergency room that was not familiar with g-tubes to have them basically send us home. It turns out that our Lily has a ton of granulation tissue around the site. I clean it and I put a 2x2 gauze on it daily but the only way to get rid of that nasty pussy, junky, junk is to have them use some silver nitrate to remove the excess tissue. Our GI doc here did it once for Lily but it didn't work. She won't do it again because we have had too many issues with her mic-key button leaking and she is afraid that the silver nitrate would cause a leak in the balloon. Complicated I know. I totally feel for you though cause I have been in your shoes. Will continue to pray that all goes well and that your little man is on the mend. Take care! If you ever have any more questions or concerns just put them on my blog or email me. Lily had her tube for 12 weeks before getting her button. God Bless!

Beverly said...

oh Sasha it just must be so hard to hear him cry like that. So sorry! I pray he heals perfect and soon. Happy that he is wanting to eat and gaining weight!

Beth said...

I'm so glad that the hospital checked Wysdom's tube out and discovered what the problem was. Poor little guy - it must have been so hard for you to hear him cry like that.

Hurray for Wysdom being 19 pounds though! That's fantastic! And to hear that he's grabbing for food and trying to eat...well, that just makes my heart so happy. :)

Michelle said...

Oh I'm so sorry to hear what Wysdom has been going through! It does break a mom's heart when they are in pain and you can't really do anything to help them; I'm sure it was hard cleaning his gtube when he was crying like that :( Hope it heals soon!

Stephanie said...

Boy can I relate. We went through nearly a YEAR of poor V screaming at every dressing change! I am the queen of wound care.. seriously.

Two things I found invaluable during his worst times.. #1 was a foam dressing called Mepilex Lite. It comes in big sheets that can be cut to fit around the tube site. It protects the skin and lets it heal underneath. It adheres to the wounded skin but DOES NOT HURT when it's removed. It is amazing stuff. Our surgeon uses it on burn patients (it's that good). You can get it from the hospital or home health. Since he tore and has issues from the surgery, wound care should cover it (ask your surgeon for it).
#2 are the barrier creams called Critic Aid Clear or one called Ilex Paste. They are basically super high grade diaper rash creams. They both worked wonders. The hospital wound care dept. carries those as well, or you can order them through your pharmacy. It's definitely worth the cost (around $20). A little cream under a dressing will really knock out any skin breakdown and help him heal more comfortably. Either cream can be used under the Mepilex Lite also.
Best of luck. If you need any advice let me know, we've been through this big time.
God Bless.

mauimom said...

Oh gosh, it is so hard when your baby is in pain, I am so sorry that you are going through this. Things will get brighter and better soon. Will be thinking and praying for you all.

kangfamily said...

Just got a chance to catch up on your blog. I hope Wysdom is healing up. You guys are amazing and he is such a little trooper after all he has been through. It will get better!! Sending healing thoughts your way. I love the new pics too...he is such a handsome boy!