October Scare 9.10.2024
It's probably time for an update on our little warrior girl ❤️ Gabby had a pretty scary reaction to one of her medications after fighting a cold last week. She became severely dehydrated after not being able to keep any of her feeds down Sunday and by Monday morning I rushed her into the cardiology office where she then immediately was admitted to the ER.
I knew something was not right on Sunday night, mothers intuition if you want to call it that. We had run her third g-tube feed (of four) for the day and she vomited half of it in her crib. I gave her a bath and Corey got her into her pajamas while I cleaned the mess. Not even five minutes after she had her jammie’s on out of nowhere she threw up on Corey’s chest while he rocked her in the living room chair. This is pretty out of character for her normally once she has a big throw up it’s one and done for the day. I was in a rush to leave for my photo session, but quickly gave her another bath and got her new pajamas on. When I came home from my photo session she was in bed so I proceeded to give her usual 8:00 p.m. meds, not even 10 minutes later she threw them up. At this point I was thinking maybe she had the flu. I was worried about her being dehydrated so I added water to her g-tube feed and started it at 10:30 p.m. at a very slow rate. About 10 ML into the feed she vomited again appeared just sickly and exhausted. We were now on our 4th set of jammies and 3rd set of crib sheets for the day, so I let her go to bed without running a feed. Thankfully she slept all night. I was able to sneak into her room at 6:30 a.m. and give morning meds. I was too nervous to run a feed since she had thrown up meds the night before. She slept till about 8 A.M. and I heard “the scream” that signifies when she is about to throw up and ran into her room to find her coughing up what looked like yellow stomach bile. I got her cleaned up and carried her into the kitchen where she tried throwing up again.
You know when you try to convince yourself maybe it isn’t as bad as you think it is..I found myself questioning “do I text her cardiologist”… “am I just overreacting?” … “I don’t want him to think I’ve abused having his cell phone number by contacting him”, “they did tell us interstage to call immediately if she was profusely vomiting.” She was dry-heaving non stop at this point, so I shot her cardiologist a text of all her symptoms. Gabby was ghost white and started holding her breath during some of her attempted throw ups. At this point I was starting to get actually scared. I decided to call my mom and let her know my concerns and she advised me to call Dr. Bigg. Normally he responds right away, but I became fairly worried and decided to just call him. He could hear Gabby upset in the background and he agreed I better bring her straight to his office. Then it hit me, I was scared, and just felt the angst and heaviness that was building up in my chest exploding. Most days are great with Gabby but when it hits me, it comes out in hot angry tears. I do my best to focus on the good, because I have too, but I would be lying if I didn’t admit it is incredibly taxing and painful to constantly bear this heavyweight/worry and sadness that life has been such a challenge for her. I know I'll be fine, I simply wish that sometimes there was a magic fix for her heart to make it all better and take her struggle away. I called my husband, he’s always the calm one in these situations, the steady voice of reason, I wiped my tears and Gabby loaded up and headed for town.
When the nurse came to grab us from the waiting room, Gabby was dry-heaving into a towel. At this point tears were burning down my cheeks again (normally I am a lot tougher than this I think I was just so overwhelmed/scared) When she finally caught her breath again, the nurse said, “ I don’t want to freak you out, but I don’t feel comfortable doing vitals by myself I am going to grab Dr. Bigg to help us.” I’m so impressed and forever grateful this man landed the job in Billings. He held her hand while Jess took vitals. Right away after assessing her and taking an EKG he predicted she had Digoxin Toxicity. Gabby’s Angel number is 11, one day I will touch on all impeccable moments this number has flashed at. At 11:11 a.m.Monday morning the vascular access team was able to start a midline IV first poke, draw labs and confirm Dr. Bigg’s suspicions. Her digoxin level was 5.1 and anything higher than 2 is considered High Risk. We then anxiously waited to see if they were going to fly us to Denver or admit us to the Billings hospital. After heavy consideration between our team in Denver, Dr. Bigg, Poison Control and the attending on the pediatric floor they collectively decided to admit her to the Pediatrics 4th floor at St. Vincent’s.
I keep thinking to myself how bad this could have been had we not brought her in sooner. After reflecting on this scary incident I have to conclude it has been a blessing in disguise. Gabby hasn’t thrown up a feed in THREE days which before this week it was happening almost every day. On Monday we were so discouraged when she weighed 15 lbs 8 oz (losing all the weight she had gained over the past two months). Today she weighed in at 17 lbs 9 oz her heaviest ever. Really praying that it's not a fluke!!
I will be the first to admit I didn’t have the most confidence in our Billings hospital to handle her care before this hospitalization . That’s not a knock to St. V’s either, they simply just aren’t equipped with the resources necessary to care for Gabby if things truly went south. I’m relieved to have been proven wrong this stay, the nurses were exceptional along with the attending on the floor (Dr. Romrell!) Dr. Bigg physically checked on her twice a day and has consulted every decision with our team in Denver. I’m thankful our team here was willing to try and go above and beyond to assure not only us but Denver that they can do this. Staying at the hospital 25 minutes from your house is a game-changer compared to staying at one 8 hours away. It was so much easier on our big girls too! We knew in the event if things would have gotten worse they would have sent us to Denver immediately. We fully understand the risk of not having the amenities that a major children’s hospital has, but agreed with her team and felt for the situation at hand we were safe to stay here.
It was a little unnerving as we briefly paused giving her 5 of her normal 7 medications while letting her body detox and her kidney function recover. It was actually a relief to know she was being closely monitored while they weren’t being administered, especially because we were unsure how her delicate lymphatic system would react after pausing her Lasix for the first time in a year. They didn't want us to discharge until her kidney function and digoxin levels were normal and she had to have a clear chest x-ray. Digoxin Toxicity isn’t a common occurrence for pediatric cases, but Gabby added one more thing to her already extensive medical resume. Thankfully we were able to take her home today and proceed with her medications minus the digoxin! I didn’t waste a second tossing it in the garbage when we got home! She is already acting like her happy, spicy little self again, praise the lord! I am so proud of our little warrior, I am praying she can really pack on the pounds now that we are off her one medication and prove it’s not her heart function causing her lack of weight gain issues like some on her medical team is speculating.
I’m sorry this update was a little long. I am hoping to hear from other heart moms to see if any have experienced anything similar after being on digoxin. A part of me also feels comfort knowing Gabby will be covered in prayer from those who read this. I know every one of them counts. Thank you for following along, hoping we won’t have any wild updates for a long time!!Enjoy some cute pics of her below from just a few of her special visitors ❤️
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