I expressed my concern to the charge nurse and she agreed but when she had the Nurse Practitioner come in, she didn't conquer with the rest of us. By this time, Maddie had thrown up her meds (diuretics and pain meds) and was looking just horrible. We had to add an extra oxygen mask to her to get her sats up and she had absolutely no color. We have known she's backed up so it was a combination of the constipation pain as well as being on the dry side with no pain meds on board. To sum it up, she's vomitted and dry-heaved a few episodes today (anytime meds or food hit her stomach) and she was so lethargic, eyes sunken in and dark, and just not herself AT ALL. Her blood pressure was low, heart rate was high and keeping her sats stable was challenging at times. She never could get out of bed today, when we tried...she had a desatting/vomitting episode so we had to get right back to bed. Maddie was completely shot and just needed rest. After getting another suppository and an oral med to help with the constipation, she went a little bit. There is still more though and she's got a big job to do. Also needs to start eating and drinking again as well as managing her pain with just Tylenol and Ibuprofin, since the Oxycodone is only going to make trying to go to the bathroom worse.
So....12 hours later, an x-ray to confirm that yes, her stomach is backed up with stool and causing much pain as well as YES, she's dehydrated, an IV was finally put back in and started with maintenance fluid and some pain meds. With the Fontan, the docs try to keep kids fluid negative and on the dry side and unfortunately, Maddie got a little too dry as well as the pain from constipation. At one point, the NP had talked about putting in an NG for nutrition- I was not happy about this since I KNOW she for sure wouldn't keep anything down with that tickling her throat and the spiral down would just continue to accelerate.
The nurses have been so awesome, listening to my concerns and advocating for Maddie. She has only showed them she's a tough, go-getter so for everyone to see her this way today was just a big shock and a set back. She was a completely different kid and it was a very hard day in her recovery. Luckily Grandma Allred and Aunt Lesa were here with us, it would have been really tough to be alone and having to see her this way. The only perk is I'm not the enemy anymore. Hoping for a better day tomorrow and praying for poop!
11 comments:
Oh Maddie looks so tired and sore. Not the look you want to get, huh?
Have they tried simple Milk of Mag with her or Miralax? I agree, an NG is NOT the thing to be doing at a time like this. Sometimes I wonder if those NP's down there think! ;-)
Praying for a better day.
Ohhh Mommy. Hang in there. Maddie's picture explains it all. What's that saying, "a picture says a thousand words?" Or something like that. Believe that everyone is trying their best to help, just sometimes their best is not going to work. Mommas might not have the MD, but they are graduates from the school of hard knocks. And, just sometimes, they know best. Lean on your support team, Katie.
And I'm praying,too for poop.
Love. Michelle W
Oh my....Maddie's eyes have me in tears. She's soared so high with her recovery and I'm so sorry she's going thru a rough phase. Prayers are being said...hope it's a very short phase. Our thoughts are with you and hoping for a great report on today (tues). Big loves to all of you.
Kelsey and family
Oh the prayers for poop. I remember that too well. My baby (different defect ToF) ended up in the hospital for an extra week and a half waiting for the tummy to start working and the poop to move, not wanting to give the hard drugs due to the slow down effect on the gut, but baby's in pain, he needs something. I hope you don't have to go through that too, any more than you are. Miserable times, hoping they pass soon (and the poop). Keeping your family in my thoughts.
Oh Katie, I'm so sorry for this rough day yesterday. I am praying right now that today is a bit better and Maddie starts to bounce back again. We have never had post-op constipation, but we've had enough just at home, and even that is NOT fun. I so wish I could come up this week.
Oh, her eyes just broke my heart. I KNOW everyone is giving you constipation advice, but you never know whats going to work. Chemo causes bad constipation too--we learned that pure Karo syrup, any sugar really helped push things along. Obviously he was on Miralax then a perscription miralax that Jax called "turbo lax"! When he was four we had to resort to an enema which was awful but after that he felt much, much better. Don't tell him I talked about his P--p on the internet please!
When you hadn't posted anything I prayed extra hoping everything was okay. Sorry to hear she (you) had a rough day yesterday. Constipation is no fun! Keep up the good work being her advocate. Mom's just know best don't they?! Hang in there and hugs all around. And yes, we will be praying for poop! Reading that made me giggle.
Oh, those poor, sweet eyes. They spoke volumes before I even got to reading your post. Prayers for a smooter road today...and POOP. You are right, a speed bump was bound and determined to happen. Maybe just bringing us to our knees in prayers a bit more today.
Hang in there Mama! What a lucky girl she is to you have you guys as parents AND such loving, supportive extended family and friends.
I have never, until today, specifically asked God for someone to poop but today I've prayed that prayer a lot. Even went over the church to do the praying. You just KNOW that once manages that, she is going to feel SO MUCH BETTER.
Had a very good visit with your mom by phone today Katie. We hope you all will be home soon and once you get home, there are a lot of people anxious to help with errands, food, etc, so that you and Brian can just be with your kids. Sending love.
barbara
Hang in there Katie, your doing a great job. Her poor little eyes brought tears to my eyes. Hoping for a better tomorrow. I will also be praying for poop! And a speedy recovery.
Sheri
Poor Maddie :( Keeping my fingers crossed her belly gets some relief very soon and the IV fluids get Maddie feeling better. Hopefully these will be the last obstacles to getting you home soon. So glad to hear your prenatal ultrasound went well! Hugs.
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