Wednesday, September 1, 2010

bitter

Well I spent some time yesterday talking to the surgeons office, the DME, and more. The doctors office told me that they cannot do the mini one initially. The lady that called me also told me that Jude would not come home with a button initially, but she was wrong. I was told he will have the Mic button, and then if it doesn't work they can switch it out in six weeks. He said there is a chance he could come home with a peg if they encounter complications, but hopefully that won't happen.

So I am wondering if other moms felt a little bitter when going into this surgery, because I do. I have been scanning facebook, and when I see that someone is having a bad day I just get irritated. I feel like putting "If you think you are having a bad day, at least you aren't ordering a feeding pump, and IV pole for your child". It's not that I wish any ill upon them, it's just wanting to share a perspective about being grateful. Even in our situation, and even though I am bitter right now, I am still very grateful. Jude doesn't have a central line, his heart is in great shape, and more. Sometimes it's a matter of just wanting to shake people to make them realize just how amazing their life is, just the way it is!!!

So after going rounds with our current DME yesterday I called Jude's home health care to see if they could recommend a new medical supplier. This morning I received a call from Andrew with medco, and he was amazing!!! He took my doctors phone numbers, and said he would make the necessary calls for me. The other facility had me calling everyone, which is fine, but it's hard to do at work. Anyway, he said they would be ordering the pump, and are going to try to get it out to us prior to the surgery. He wants to bring that in, set it up, set the IV pole up, and teach us how to use everything. He also said he is going to try to start getting Jude's diapers and wipes delivered to us, which will be a nice relief.

Emily finds out today if she received a lead role in her school play. She made the call backs, and then they kept her there singing rather late. I know she is so excited so I hope she receives a role, but she said she would be perfectly fine with just an understudy part.

So once we get back from our vacation in February, I have to find another car. I HAVE to find something that will house Jude's wheelchair, and that is in better condition. It seems various items have gone out on this car including the horn, and BOY that's annoying when someone makes me mad!

8 comments:

Debbie said...

bitter?

yep...know exactly how you feel!

Reagan Leigh said...

When it came to Reagan getting her feeding tube we were in patient with a child who was throwing up nonstop and wasting away...so we didn't have a lot of time to weigh the pros and cons or feel bitter about anything. Reagan's surgeon did not do the PEG procedure (he did not think it wasthe best way to place a tube)....so Reagan had an incision and came out of surgery with a tube (not a button). Our surgeon also felt it was better for the healing process to have the tube...less irritation aroun the site. 6 weeks later we had it changed out and it was no big deal. We've been told many times that Reagan has the best G button site they've ever seen...so obviously he did something right. And our g-tube supplies weren't delivered until the day we left the hospital...nothing was done ahead of time.

Gilda said...

Hi, Jenn haven't commented in a while but still keeping up with you all. I will be keeping you and Jude in my prayers as always all goes well in the surgery.I also wanted to share with you that I saw Emily on a spanish program on Ch 39 Telemundo called Al Rojo Vivo. They told Judes story and how Emily got her Smile boxes and why, that was awesome after they did the enterview the host talked about how a great young lady she is and how she can give encouragement to others because of her caring heart.

jocalyn said...

yeah. i get bitter too...

not only because people on facebook just don't get it, but also in the special needs community...some people think they have it bad...when really they have no idea how bad it could be...

but to some people "a lot" of hospital stays equate to one or two nights, when there are people having to leave their families for months at a time.

guess it's all relative. so i try to ignore it for as long as i can...

Katy said...

I did NOT want the feeding tube, but they didn't give us a choice.Don't be too worried about switching it out and stuff. When we had it, it was fine.

I think we all have those feeling sometimes--when people are complaining about the tiniest things and we're dealing with bigger ones on a daily basis. I'm telling myself its normal.

Holly Mackerel said...

Girl, I hear ya. Especially after my recent trip. Nothing really makes me mad or matters anymore after what I have seen you and the people in Africa deal with. I love you, and I am sorry you have to deal with these things.

Bronx Cataldo's said...

We had the PEG done and they put a micro button with a spacer in. Some of our supplies were delived to us in the hosptial and the rest were delivered to our home the day we got out of the joint.
We went back in 6 weeks and they removed the spacer and I think we went back 2 months later and they put a mini one with balloon in. We had a little accident when on vacation in Ireland and they put in a Mic key button which I really liked. We are back using the mini one ballon.It is a much smaller button than the mickey. But its all on what works better for the child.
Bitterness is something I can really relate to

Jamie said...

I would be irritated too if the plan changed from what you were told previously! I don't think the people who run the show really get how stressful this is for a parent! If you are set on having the button first then I wouldn't hesitate to get a second opinion. I had just posted last night about how humbling a trip to the Cook's Neuro department is. I get frustrated with our situation sometimes but going there makes me realize how good we really have it. I still seem to get bitter when people are freaking out about their kid getting tubes in their ears and stuff like that though. Our DME also didn't deliver the stuff until the day we left the hospital. They brought us the pump and 1 box of formula and then shipped the rest. If Jude ever ends up on Peptamen Jr 1.5 please let me know because we have 2 cases that I don't know what to do with. I am sorry you had a difficult day and hope tomorrow brings better things for you!