Wednesday, June 11, 2008

Post-Op Day 19

I have a lot to report that happened yesterday. I had another melt-down, maybe not so mini this time. I was feeling ignored and that the nurses weren't listening to my concerns. There is more to the story of the desat episode yesterday, namely that we were on our second nurse of the day, one that wasn't from our floor, and she didn't seem to know how to get the oxygen working for my baby. She also did a horrible job on the dressing change, and when the third nurse of the day showed up and took a look at Drew, the gauze was not taped down at all and his wound was open. I could feel myself getting so angry and I told Dan I had to step outside. I had myself a good cry and then found the NP and told her that I was upset and I needed to talk to her.

When we had our conversation it went something like this:
"We are on our third nurse today. The kid who freaks out when anyone touches him gets THREE different nurses? That is not ok."

"I have been asking about the results of the chest x-ray for three hours. I don't know if the nurses aren't telling you, or you aren't telling me, but I know the x-ray is back by now."

"I know this sounds terrible to say, but can we please get a nurse that knows how to do a dressing change? They keep asking me how to do it, and if they are going to ask me I'd rather do it myself. I understand that this is a teaching hospital and people need to learn how to do things, but if someone has never done a packed wet to dry dressing change before they need to ask someone who has done it to show them, not just guess."

So we ended up with x-ray results (the same as that morning), primary care nurses and the option to make a list of people we like. I am also going to start doing the dressing changes myself, because I probably know how to do it better than they do and I will definitely be more gentle and use less tape. The surgical PA showed me how to do it today and I'm on for tonight.

The x-ray from this morning showed fluid in Drew's lungs which accounts for the still low oxygen saturations and being on 1 liter of oxygen. They changed his lasix back to IV and they think that this will make a big difference in pulling that fluid out of his lungs and increasing his O2 sats. And we are on day 10 of IV antibiotics, but the surgeons want to keep him on them longer, no word on exactly how much longer.

We did spend some time in the play room today, playing with trains and the basketball hoop. It's harder to get around now because we have to take the oxygen tank and the portable monitor with us wherever we go.

Drew playing with trains, a little oxygen can't get him down

19 comments:

Anonymous said...

Don't worry about the "melt-downs"...they are normal, and if you didn't allow yourself to vent, that would mean you're keeping everything inside, which isn't healthy!

Be patient with the O2 sats, they will jump up once they get rid of that fluid.

You continue to be in our thoughts and prayers.

-Paul Thompson

Valerie said...

I loved being able to listen to you vent yesterday and know that you can call me anytime. I think you are handling all this very well. You are an incredible person Andrea Himmelberger!

Please, everyone, do not forget to check my blog for the VERY popular Drew Raffle!

Anonymous said...

Hi Andrea,

It sounds like today is going better than yesterday and I am so very thankful for that. You are an amazing mom and I couldn't ask for better parents for my precious grandchildren than the two of you!

I noticed that Bobbie is still in the playroom picture with Drew today. Any word on her baby sister?

I love you all and you are constantly in my thoughts and prayers.

Mom

Baker Family said...

Andrea,
I'm sorry that it feels like a constant battle, where would our kids be without us to advocate?? (it is sometimes scary to think about) Hang in there, you sound phenominal to me. Just being in that hospital environment is enough to send anyone over the edge, considering this is going nothing like expected! You are amazing and doing an awesome job!
amber

Carrie said...

Good for you!!! I'm sure it feels good to know that the melt down was productive...sometimes I think we all need some of those! And the staff needs to hear those complaints as well! It makes me a little angry though that they aren't teaching the nurses to do a proper dressing change and are rather having you do it. (NOT that you aren't capable..gosh only knows you are..but it is a teaching hospital and what a better opportunity!) Although I'm sure he's happy his Mommy is doing it now! Hang in there! Drew is a lucky little boy to have such great advocates!

Anonymous said...

Hi Guys,
I am sorry to hear that Drew is back on oxygen, but hopefully it will not be for long. I am sure you will do a better job with the dressing change, sometimes nurses can be so frusturating. You will conitue in our thoughts and prayers.

Love,
The Myers'

Kathy said...

Oh Andrea...
I just want to give you a BIG HUG! It's SO hard for those nurses to understand what we, as parents, are feeling. That our kids aren't just "patients"...they are PEOPLE..with feelings! Have you asked for my Melissa yet?? And who's your NP?? Raji?? WE LOVE HER...actually..we know them all, I LOVE LOVE LOVE them all!!!

I'm just like you with the dressing change. I'm glad they finally taught you. By the time we were on 3west...we DO EVERYTHING. I don't even let them give him meds..I DO IT ALL! (they just don't do it as well as I can)...and that floor is WAY different than the CVICU.

I'm so sorry that you're still there. I'm coming on Tuesday if you're still around we'll finally get to meet...bUT..I HOPE YOU"RE HOME...and NEVER have to return!!!~

Take a deep breath...
Your little man's heart is FIXED! He IS going home soon...these are just a few bumps (ok..alot)...but, you're handling everything great!

You deserve a prize when you get home...(start shopping online!)

Sending lots of love and prayers!
Kathy

Anonymous said...

Hi Lovies,
I may end up in jail before your hospital stay is over....
Love, AL

Vanessa said...

I know I've been very emotional lately and sometimes a good cry is what we need. You can always vent to us. We love you all so much and I wish there was more I could do for you guys.

I'm happy to hear you'll be doing the dressing changes but think it's kind of sad that the nurses can't do it right.

I'm always saying prayers for you guys. Maybe you could try and go for a nice walk later, get out of the hospital for awhile.

Hugs,
Vanessa

Armbruster Asylum said...

Hi Andrea, Dan, Drew and Ava! I am thinking of you today! :) Drew is blessed to have such good advocates for his health! Keep up the good work ... I know it must be draining for all of you.

Kym

Anonymous said...

There are always strong emotions behind great advocacy. Good job! I can relate to having to "teach/lead" the so called professionals, but being your child's parent is a unique, innate, and blessed position to be in that no amount of education can accomplish. God certainly chose you for this role. Both Drew and the hospital need you. You are a gift! I can't wait for you to come home and be able to decompress from this experience. It feels time for EVERYONE to get to breathe easy again. Praying for you all faithfully to a faithful God.

Love,
Jen L.

Anonymous said...

All I can say is, do you need me to come down there and practice a little kick boxing with you? Just jab, cross, hook, upper cut, kick, kick. Make sure your giving yourself breaks and just breathing.

Way to go on taking care of Drew with his dressings. Your smart to take over that job because you will do a better job. He's your baby.

If you need to vent some more...I am all ears.

Love,
Jen

carl said...

I only wish I could be your nurse. So far away.

Should you need any advanced medical assistance when you come close to discharge, do not hesitate in the confidence that you literaly will have access to anything you need. I am willing, Dr. M is willing, and it sounds like many others with experience are also.

If the MA has taught you how to do W>D drsg. changes, I hope he has taught you well and the reasons for what you must do. If you have bit the bullet enough to attempt it, I will not gross you out in reiterating some key points:

**STERILITY (!!!!!!!) is a must. Anything that goes into that wound absolutely HAS to be! If in doubt, throw everything out and start over. Saline, gloves, gauze, ....everything. You are in the worst place to introduce anything new (bacteria, fungus, etc.) to him. He is already fighting something he shouldn't have, don't give him more.

**Wring that gauze out thoroughly. You only want it damp, no drips.

**If there are any pockets, it is critical to get that dressing down and into them ---No matter how much it drives him nuts!! Not doing so will allow a pocket of puss/bacteria develope that even antibiotics cannot reach. Thus the reason you are doing this in the first place.

**When removing that old dressing, it will (hopefully) be mostly dry with "stuff" stuck to it. Some bleeding is normal and means he has good fresh blood supply close to the wound (means antibiotics and healthy healing). Do not wet it to make it easier to come off. The reason for the W>D is to get that very stuff out of there!

**Everything should be redish or pink, no grey. If there's grey, make sure the docs know about it.

Eventually that healing tissue will build its way out and close.

...more than you wanted to know.

as always, carl

Molly said...

Andrea... I'm sending you big cyber hugs. But know that God has his arms wrapped around your entire family... even when you can't feel it!
Amy

Katie Scott said...

Andrea,
You are doing such an amazing job and Drew is looking so much better! It was fun seeing him play with Shae today and loving on Baby Chloe. Carl's post is a bit graphic. You are so strong to be able to do all that!!

Kristen Ewers said...

Andrea- Shae had such fun hanging with Drew today, but I told her not to get used to snuggling in bed with her boyfriends, this was a "special occasion". We may have to save that photo to embarrass them with later! It was such an amazing difference to see Drew alomost 2 weeks after our first visit. I know it's hard to see when you are there all day, every day, but he really is improving in significant ways. You and Dan continue to amaze me. Hope you get good sleep tonight!
-Kristen

The Portas said...

My heart goes out to you guys. Andrea, way to go on standing up for your son's well-being. Sometimes it's good when we get pushed to the brink because it forces us to speak up and ask for EXACTLY what we need. I've said this before, but I'll say it again... Drew is SO LUCKY to have you as his mama and advocate. You are doing an excellent job!

Prayers for a day of much PROGRESS!! Sending you love from Minnesota..xoxoxo

Amber said...

Oh Andrea,

I can't tell you how sorry I am to hear that Drew, you and Dan are having to endure all of this! You all are so strong. Please know that there are prayers going up for all of you and for the "incompetent staff" as well! Hang in there!

UbrStrBksMom said...

I'm not sure that shedding tears in frustration at the treatment of your child or standing up for his rights and best care quailfy at a melt-down honey.... seems normal to me! You are wonderful and the tears are healthy.

I love you Andrea and soon you guys will be home. Praying for you everyday!

Hugs Paige