Mackenzie’s story

09/24/2025

Look who is finally awake!! We have heard from infectious disease and they have prescribed 2 oral medications which we can donate home and we come back on Friday to follow up

09/24/2025

The Doctor was in and we are still waiting for the blood culture, infectious disease has sent a few different antibiotic choices however they are having a hard time finding one that will treat both the pneumonia and urine bacteria. The Dr. Said once they get the labs back they will communicate to the infectious disease team and see what their thought are. It will be up to them if we can try 2 seperate oral antibiotics and go home or if IV is what they are still wanting.

09/24/2025

IV blew and she is swollen on the IV sight so now we wait to have another put in. My poor girl is having a ruff go!!

09/24/2025

Even with everything happening she sleeps so peacefully... We are waiting for a bed to become available so we can get out of this ER.

09/24/2025

Well that didnt take long, I got home shortly after 4 and received a call from the ER doc that we saw yesterday after getting the urine sample back it tested positive for a rare bacteria that apparently hard to treat. The Doc told us we need to come back to the ER for an IV antibiotic and hopefully it will fight the rare bacteria. We will also be getting blood work done to make sure nothing else is happening that we are missing, not sure how long we will be here but if the bacteria is not showing improvement after a couple days then we can be sent home and have nursing available in the home. Needing prayers for my sweet baby!!

09/22/2025

Mack isn't feeling well again. After a visit in the ER with her they have done x-ray and see something so are suspecting that she has aspirated again. Starting antibiotics and if not better by Thursday I have to take her back in.. The Doctor also wanted a urine sample and I'm glad he did because I guess it came back positive for bacteria, poor girl is also battling a possible UTI.

09/08/2025

07/22/2025

Update: The GJ has been in since Monday of last week and the transition has been tricky, we have had a couple hiccups but I guess that's how we learn. Since getting the GJ she has only vomited twice and pratten weighed her today and she has gained weight, she has went from 16.2 kg to 16.6 kg. THIS IS AMAZING!! I know it is only .4 but I was so happy when I saw it!! Tomorrow we are off to London to the Ivey eye for an appointment.

07/18/2025

Update: Good morning thought I would give an update since Mack got the new gj tube in, this is what it looks like. I hate that there is something hanging out of her tummy now, my plan is to try and get the lower profile one but because it was spur of the moment we won't be able to change it for at least 6 months because they need to put her under to do it. On a side note Mack has only vomited once since we have had this tube and that was the day after it was placed. Tyler and I are still learning how to use it and which way works easiest for us. Right now the feeds are running 24 hours a day and going directly into the intestine which kind of sucks but we are going to increase the rate every 3 to 4 days until we can get to the goal where she feeds for 17 hrs and off for 7 hrs and her meds go in to the gtube port.

07/14/2025

Mack's surgery went well, new GJ is in. Took a while for her to wake up, I guess they gave her some morphine with the anesthesia she slept for 2 hours. Also had to make an unexpected trip to Yureks pharmacy because all the supplies I have won't work, ridiculous supplies are expensive!! At least they are willing to take the stuff back and give me store credit!!

07/13/2025

Little Mack is going to be getting her GJ tube tomorrow morning. We have to be there at 8:30am and surgery at 9:30am, then 2 hour recovery. I pray that this will help with the vomiting.

06/24/2025

Update: We are still working closely with Mack's medical team to figure everything out still. Since our last appointment they switched her formula to a new one that is more broken down than the one she has been on her whole life and started out with very minimal formula mixed with Pedialyte and gradually will try increasing every few days.

The team decided that it would be best to stop feeding Mackenzie orally until we can figure out what's going on, right now they believe that it may be the cleft in her throat causing the issue so we may have surgery sooner rather than later to repair it. The delay at this time is the medical team is concerned about repairing it because of all the vomiting that we are seeing puts her at higher risk for infection.

We have started a new medication previcid fast tabs to see if that will help settle her reflux so currently I think we are all just guessing at this time. We have an upcoming appointment on Friday with complex care, palliative care, GI and Dr. A from pratten to discuss further and hopefully come up with a solution.