Monday, June 23, 2008

Rhett's "Uppy"

As promised, here are some picts of Rhett and his "Uppy." These two are fast becoming best friends. Only problem is, is that soon little Uppy is going to be twice as big as Rhett!!

Like his Monkey Quilt? It's the first quilt I have ever done. I don't have a sewing bone in my body, but after looking online it seemed simple enough to tie, then I had a neighbor sew around the edges for me. It ended up being alot bigger than I thought it would, but I guess that's good, it means he can use it longer.

The next part and picture read at your own risk, it's kinda yucky.

Now a question for all you G-tuber's out there. Rhett's stoma is draining like crazy, I have to change his dressing about every 2 hours. It's a dark brown color, with a just a tad of red blood in it. When I changed it tonight, he started crying and the stoma itself was gurgling and had bubbles and liquid coming out of it. I pulled back the water in his balloon, and there was only 4 ML in it, so I added 1 ML, they say there is supposed to be 5. Also, on one side it seems to be healing well, but the other side looks like a gaping fresh hole. It's been a bit red, and I took him to our regular ped today. They put him on an antibiotic just to be safe.

I am putting a barrier cream on it, then the gauze. It's hard to get the barrier cream around it though because of the retention disk. I know it hurts him for me to be moving it. It's also hard to clean around it, I clean it as well as I can with a q-tip and I am only doing it once a day. Should I be cleaning it every time I do a dressing change?

This all seems really overwhelming to me right now. I cannot hold this kid on my own and do dressing changes. My sister has been off of work today, so she has helped me, but I don't know what I am going to do when she goes back to work. I have a really good friend who's son also sports an extra chromosome, and her mom is willing to stop by every day around 5 and help me. I am sooooo thankful for that. But during the day if it keeps needing it every two hours I don't know what I am going to do. I'm sure it is hurting him like crazy. You go to pull his onsie up, and he grabs it an pulls it back down. He doesn't want anyone looking at it.

Another thing that's hard on me, is before he has just cried when I have had to do things to him, like the NG tube, or changing oxygen stickies, but now he has this really pathetic "don't!!!" that he has added to it. Oh my gosh it just breaks my heart. It hurts me to have him communicating with me and telling me that he doesn't want me to do it. I am glad he CAN communicate, but it is so sad.

After he is done, he gets a love from me and runs into the living room like nothing happened, but while it's going on he just cries. All he has to do is take one look at my bed with the medical supplies on it and it sends him into a wave of tears.

Please somebody tell me this is going to get easier. I had no idea it was going to be like this.

Anyways, he got a bath last night in the sink.....the only place shallow enough not to soak his incision site. He was pretty darn happy that he got to have a bath. Tonight didn't work out so well as far as the bath thing went. He ripped his dressing off, and sent his stoma into a bleeding fit, and we had to run him into my bedroom and get it all taped back up. Boy this kid's got some naughty little wandering hands!!

But he sure is adorable!!


Damama T said...

The hardest part of being a mother is doing the things that have to be done. It takes a mother's heart to not just give up and give in because it would just be so much easier. I don't know anything about all of the medical stuff you are going through, but I do know about how hard it is to do the hard thing when quitting would be oh so much simpler. Hang in there. As ALWAYS - you are in my prayers. xoxoxo

Carla said...

We never had a gtube, but we had a port a cath, and I was the one who accessed it. It always broke my heart when Gavin started crying as soon as he saw me even standing near the supply door. What made it worse was that not only would he yell "don't" while crying these crocodile tears, he would also yell while crying "Mommy you are hurting me!" : ( I cried so much, I hated it. It does get easier though because they get used to it. So hang in there and lean on those who can help as much as you can. You will get through this too : )

BTW I LOVE the picture with nothing on his face! I dont think I have ever seen him without anything at all on his face! HIs skin has healed so nicely (sorry that I notice, my son is super rashy, so that is what I always notice first out of habit).

Him and the pup are adorable, thanks for sharing!

Carla MWP

little.birdy said...

Lil' Uppy is going to be a good protector and friend for Rhett, I just know it. I bet he'll be one of those dogs that wakes you up in the night if Rhett isn't feeling well or something.
I hope the medical side of things starts to get easier. :/

RK said...

Hey Pam... First it WILL get better. Don't even worry about this lasting a long time. I'd say you'll be so surprised at how much better it will be in one more week.

Granted, we had the PEG procedure, not an open placement, so that will change things, since it's much more invasive and "surgical." But I can tell you that we cleaned the site a few times a day for a couple weeks. The fact that you have an incision there instead of just a stoma hole is complicating things, I'm sure. The drainage is normal, but don't hesitate a minute to call the GI and ask about any changes in it or concerns. I do it alot, even still, if something looks funny. Braska has one side of the stoma that has always looked fine and the other side has had the trouble with granulation tissue and inflammation. I don't know why. We have Kenalog (strong steroid) cream that we apply to help the inflammation stay down if it starts to threaten granulation again. But we didn't get that until the first time the granulation grew in.

Also, before we moved down here close to the docs, I took pictures every day of the button when it had issues so that I could email them to the nurse so they could verify what I was describing on the phone and note the way it was changing. Might be a thought if the trip is a concern.

As far as cleaning, I'd do it each time you change the bandage, as much as that may be hard. Even if it's just clean water on a q-tip, it's better than just putting a new gauze on the goo. We don't use a barrier cream, just water, sometimes Dove soap, Kenalog when there's a problem, and new gauze.

Feel free to email if you have more questions or if you want to see pics of our problem times to see how it looks.

It WILL get better!!

Leah said...

It sounds like he will probably be prone to granular tissue. Kind of a pain in the butt, but something you just don't know until there is a stoma to deal with! Angela had lots of granular tissue. Kenalog cream worked great for her stoma healing issues. It's a VERY strong steroid creme, and I had trouble getting our surgeon to prescribe it. I'd heard about it from another gtube mom. Since then (10 years later) our surgeon still prescribes it all the time for his patients. Angela also had a very "wet" stoma. Always draining. I kept "2x2 IV sponges" on it. These are 2x2 gauze squares that have a pre-cut slit in them so you can get it around the stoma. This helped absorb drainage throughout the day. We changed it twice a day. Alot of this is just getting used to the logistics of dealing with a tube...and healing. It takes a few weeks to heal, and for the body to adjust to the anatomy change of the nissen.

Leah said...

Oopps. Just checking...they did the NISSEN in an open proceedure, correct? The stoma was done endoscopically just like they always do, correct? (just a hole, not an incision for the stoma?) Angela's nissen was an open procedure as well, plus the gtube. So, if I'm seeing correctly, the incision on his belly is the nissen incision, and the stoma is to the right of that, under the square bandage, correct?

~Melissa~ said...

I wish that I had some sort of advise to offer you, but it sounds like you are getting some from many here. Just wanted you to know that Rhett is still in my prayers, and he is such a cutie!!

Stephanie said...

I'm so glad you have a network of loving friends to give advice and support! I have no expertise in this area. The puppy is adorable and your son is handsome fella! Love you both!

The Bryant Family said...

Tucker Gtube site goes through stages, red and then clear, red and then clear. We have had a yeast problem and drainage from the button. the balloon tends to lose water over time, and begins to leak what is in the tummy...just do what you did and fill it back up. You are doing great. We have some wonderful stuff called PolyMem, it is pink and sponge like. The guaze sticks to the wound and pulls and hurts the little guys. This poly doesnt stick and pulls the liquid away from the skin helping with the moisture.
i promise you will like the gtube much better as time goes on. Tucker went through a stage of pushing my hand away but has since gotten over that. it is easy to take care of after the healing process and much better than sticking that darn ngtube down and tearing up the face.
Rhett reminds me so much of Tuck....they are such troopers!! Hang in there. Hugs to you and kisses to Rhett.

Maren said...

Rhett looks so adorable with the puppy. He is such a handsome little boy and his smile is contagious!

Heather said...

I PROMISE things will get better. I love the "uppy" and the pictures. As far as the g-tube.... Zoey had a Mickey straight out of the gate so that was slightly easier then what you are dealing with but she has had a few issues here and there. Some better then others. A couple staph infections so when in doubt have your Ped. check things out. We have used two creams One, ILEX, goopy, and sticks to gauze and 2x2's so if you try it use it as a stand alone thing. The other, which I think I like better, is Calmoseptine. Both are over the counter (behind the pharmacy counter usually though)Washing is key, at least a few times a day. Also, drying after each wash is super important too. It will come along. The site is still so new. Hang in there Pam. Lean on us.

Love, Zoey and crew

Shannon @ Gabi's World said...

What kind of "uppy" is it?

I hope his GTube is better soon! Looks like you have lots of people willing and able to help with advice in that area. I have only dealt with them at work, and my 12 hour shifts experience is nothing compared to the moms who do it 24/7. I'd take their advice!

Jake & Stephanie Ellinger said...

Oh Pam, I completely understand what you are going through, except that now Nathan doesn't remember life without it! Nathan has the Mic Key button which they just gave to him straight out. Nathan had the same drainage for almost 3 weeks after placement. Then all of a sudden, things got better. Nathan's still drains quite a bit, but it is usually clear. Dr. Downey placed it. He recommended cleaning it with a q-tip a couple of times everyday for the first few weeks. We also put Baza Protect (thick) on it to protect the stomach from being burned from the drainage. At 2 months out Nathan got his first granulation tissue and we started using triansinalome (steriod creme) on it. I would put that on it and then cover it with the 2x2 iv bandages with the slits opening on the opposite side. You will probably need to use both bandages that come in one package. I apply cavilon (a sticky barrier film that helps the tape stick to the belly), let it dry for about 30 seconds or so and then tape down the bandage with Mefix tape. When I had to change the bandages every couple of hours I didn't tape the button down because that was causing it to be unbearable for Nathan. The trick is to figure out how to keep Rhett occupied and not thinking about what you're doing while you are changing the dressing. If you don't mind me asking, where do you live? I'm in Springville and if you'd like I could come by some time to help you. I promise that after the first couple of weeks life gets better. Now I'm only changing the dressing every 2-3 days. Knock on wood, but we haven't had problems with it (other than popping out unexpectedly) in weeks. Now the tummy troubles are a completely different issue.....

Good luck! Leave a message on my blog if you would like me to come over and help you.


Mrs Wibbs said...

Awwww... I love those pics of Rhett and his new 'uppy...!! What a beautiful, cute pair! And I'm sure it'll prove to be a great help in his overall development and happiness. If we had more space inside we would get one, but we are thinking about getting chickens as our garden is big enough.
Big hugs; looks like things are on the up for you guys.

Niksmom said...

LOVE the pictures! As others have said, yes it gets easier. It will all become routine and second-nature for both of you after a while.

It took a long time for Nik's stoma to be completely clear/clean. A lot of what you are seeing (the brown/red icky goo) is OLD dried blood from inside the stomach; it's normal after surgery.

One very important thing to know...and which the docs don't tell you but a really good nurse practitioner will (from our 3 1/2 yrs experience so far) is that Ibuprofen (Advil/Motrin) given on a frequent/regular basis (like Rhett's been getting post-op) actually irritates the stomach lining and makes the stoma more sensitive and gooey. If you need to use pain/fever relief, see if you can get by with just Tylenol during the day and save the Advil/Motrin for night or really bad stuff.

You can also use something like Maalox on the outside of the stoma. Apply it with a cotton ball or q-tip. The acid from the stomach (even if he's on Prilosec, etc.)is really tough on the outer skin. The Maalox can soothe it. You can also ask for a Rx for something called Calmoseptine; it's a pink ointment which has both soothing and barrier properties (looks kind of like pink desitin ointment!).

If you can get the tummy pain (from the acid and advil) under control, it will be much easier on Rhett and he won't fight/be upset as much after a while.

For cleaning, yes, you need to clean it several times a day until any of the open skin is healed. Ditto for rotating the fitting (so it doesn't develop any scab/scar tissue inside the tummy).

I won't took us a long time to get Nik to the point that we can go a couple days between cleaning his stoma and he doesn't need the gauze anymore. His stoma is now smooth and clean, the fitting turns easily and he no longer fights when we clean it. If he does fight, we usually know he's got some sort of infection brewing.

Sorry for the LONG comment...

Leah said...

Oohhh...I forgot about the Maalox! Yes, we mixed a paste of maalox and aquaphore! Aquaphore, of you're not familiar with it, is the consistancy of vaseline, but is water soluble. I thought it would cause problems with harboring bacteria, but it doesn't! I would wait until the stoma is well healed first though. Hopefully you won't have any problems with drainage once everything is healed up.

jenny-up the hill said...

Sounds like you got a lot of good advice!! Hope things are going better...You will get used to all of this're a SuperMom!!