Friday, January 22, 2010

The Good, The Bad and The Ugly

Thanks everyone for your comments. They keep me going!! Here are the updates from the last couple of days. There is some good news and not so good news. The good news is that my mom was discharged from the hospital this afternoon sometime. She is outta there!!! Yah and now at home and will have home care come and help her. She still has a tough road ahead but at least she is at home for now and no more procedures at this point.

The bad news is that I didn't get to see her today at all. Why you ask? Because we spent most of the day at the hospital( out of town one) with Wysdom. Last night we noticed that he was getting a puffy spot around his tube AGAIN!! It is in the exact same place which leads me to think that the first infection never truly went away at all. On Thursday we went back to the hospital and talked to another doctor. The g tube area looked fine from a quick glance. However if you touched it or moved around that area Wysdom freaked out. The doctor that we saw was great. He did order an ultrasound for Wysdom which was not fun at all. However he did believe me when I said I thought that there was an infection since Monday and finally gave us a prescription for an antibiotic.

Now for the Ugly. Well by early Friday morning we noticed it gathering into a boil or abscess again. We called our out of town hospital since they were the ones that put it in. We talked to another on call doctor and she was less than helpful. After taking to her, we quickly called her back in less than a couple of minutes and asked her if we should bring him to our local hospital instead. Can you believe that she had the nerve to tell Julian that we disturbed her from her sleep.!!! Julian handled that better than I would have. He said with all due respect how are we supposed to know if you are at the hospital or at home in bed. UGH!!! Anyways I was less than pleased. What's with the hospital's this week. So in the morning we went to Hamilton and they looked at it and immediately decided to cut it open again and drain it. They put some local freezing on it and after a 20 minute wait they went to drain it, however it had already torn open. My poor little man has to go through this again. They don't know why really. Either it's his skin flora or it's rubbing too much. They don't really know for sure. I am very frustrated and don't want him to go through this again. I told the nurse that I can't keep having this happen. He is missing all of his developmental activities like floor time and sitting. He can't do much because he is always healing. Julian and I are now under a bit of pressure we feel to find our own strategy for cleaning the tube and keeping infections away. They say that this is so RARE. Yah right. Not for us. We also feel we have to try to get Wysdom to feed orally as we don't want this tube anymore. This is definitely where I am asking for miracles in my life right now. This g tube is so time consuming right now and we still have eye, ENT, cardio and all other therapy appointments.

So if anyone uses anything really different to wash their g tubes or knows of anyone who does I would be interested. I am going to look into something natural to maybe put in the bath water or something. Who knows? I am not sure yet..but I can't have his tummy splitting open week after week and I can't go back to the NG. So that is where we are at. I know he is really strong and tough but enough is enough.

We got home around 3:00, I called my mom and then went right to bed. My house is a disaster and the food we are eating is not the greatest as we just can't keep up. Through it all though, Wysdom is STILL SMILING AND SPREADING LOVE. Poor Blyss, she has spent the whole week the hospital too. She is going to need a special treat for being such a good girl.

My new motto for the week is "Miracles are welcome"


Lacey said...

I can't believe he is having that many problems with the g-tube. Seriously it is really rare to have infections there. Maybe it needs to be pulled and an NG put back in. I know that sucks but it might be the only way. :(

Kristen's mom said...

I am so sorry to hear about all the problems at the hospital. I seriously can't believe your mother was in the hall! That makes me feel so bad. I know nothing about G-tubes, but hopefully the antibiotic will help. Thinking of your family.I wished I lived close so I could make your dinner.

Unknown said...

I don't have any advise for you. Carly never had any type of tubes. Well, other than oxygen for a few months. I think, if I were in your shoes, at this point, I'd tell the doctor to get that blasted tube out of him. Poor little guy. I can imagine it hurts like the dickens when they're working on draining it. OUCH!!!
Hoping you all have a wonderful, peaceful weekend. You all deserve it!

Erin said...

So sorry to hear you're having bad luck with medical personnel, I've been there myself. I hope this infection clears up soon, what a little trooper!

Cathy said...

No advice here either. Just wanted to let you know that I'm thinking of you and praying for everything that's going on.

Lisa said...

Sasha, I don't know anything about G tubes, and I'm not sure how you are cleaning it right now, but I thought I would share my experience cleaning my brother's broviac tube (it was a tube in his chest that went straight to his heart to administer chemotherapy - so it HAD to be clean because infection would have been fatal).

We used big medical alcohol swabs (think of a Q-tip but 50 times bigger - they come individually wrapped as medica supplies) and big medical betadine swabs. Two of each and I did it like this:

1. First alcohol swab: open when ready to use; starting right up against the tube make one circle around it; continue to make bigger circles (like a spiral coming out of the center) around it until you've cleaned a large enough area around the tube; BE SURE YOU ONLY DO THIS ONE TIME WITH THE FIRST SWAB - IT'S IMPORTANT THAT ONCE YOU MAKE A CIRCLE YOU DON'T GO BACK OVER IT WITH THE SAME SWAB

2. The second alcohol swab: repeat the same as above

3. The first betadine swab: repeat the same as above

4. The second betadine swab: repeat the same as above

5. We had to bandage my brother's broviac (we used sterile gauze and sterile tagaderm to seal everything) - HOWEVER, if the infections are coming from Wysdom's skin flora this would not be a good idea

Some other tips other people used: antibiotic ointment (just a small dab) right at the tube might help lesson an infection if you start using the ointment right away at the first signs of infection

I hope this helps :)

I'm thinking about you and your family...

Gabriel and Alyssa said...

We clean Gabe's tube with Dial soap and water on a Qtip. Sometimes at the hospital I work at, I've seen patients use a solution of half hydrogen peroxide, half water. Good luck. You're a great mom.

Googsmom said...

Dangnabbit! Poor Wysdom. Give him some {{{{BIG GIANT HUGS}}}} from Brook and me. When the in-laws come down try, try, try to get some rest for yourself. Praying for all of you!

Azaria's Mom said...

Sasha... I'm so sorry to hear about all the issues you guys are having with the g-tube. We'll be praying for God to provide you with that miracle that you're looking for!! I'm glad that 'miracles are welcome' cause I have a feeling you'll be getting many this week! :) Sending lots of love (and strength) this week, along with prayers for the miracles...

オテモヤン said...


Beth said...

Oh, Sasha, I don't even know what to say to you, because I feel like my words would fall short. Please know that I am thinking and praying for all of you and that I *KNOW* that Wysdom is going to move beyond this and continue to be the amazing, strong miracle that he is.

There is a blog that I read that often gives me a lot of comfort and I read a post on there today that really did my heart some good. I leave you the URL in the hopes that when you have a moment, you can read that post and it can give you some strength as well.

Beverly said...

what a tough week you had. glad your Mom is home and hope you get to see her soon. praying all gets better for wysdom and that the drs and hospitals give better treatment and are more helpful and understanding. hugs.

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