Forgotten Post from April 4

The below post was written back in April and I thought I had posted it, but here it was still in the draft stage. My apologies. I will be writing another blog here momentarily.

So much has happened since our last update post in October, 2021. My parents came to visit, Adam turned 40, Thanksgiving, a couple of visits to the ER, and a surprise visit to Tennessee for Christmas. We had probably one of the hardest starts to 2022 - with 4 ER visits, 2 hospital admissions, 2 UTI’s, one flight for life to Oahu, one surgery, all of us getting COVID-19, and losing our sweet dog, Meeka. We’ve gone from full TPN at 21 hours a day to now 10 hours a day!

During our second admission we made a difficult but necessary decision to have a gtube/gbutton place in Maliyah’s stomach. After dealing with multiple episodes of bloating, and having the trauma of putting in a NG tube over and over again, we put one in to have some way to vent the gas that accumulated in her stomach. It also gave us the ability to drain stomach fluid, give nasty tasting medicines and possibly give some extra nutrition through tube feeding. This decision has been a game changer. We’ve probably already dodged at least 2 hospital admissions, due to us being able to manage Maliyah’s symptoms at home. I am so thankful to our MMIHS support group for knowledge and support through all of these decisions. Their experience has been invaluable to us and our journey.

We also started to give Maliyah supplementary tube feeding through her g-button. The formula we are using is hypoallergenic it also has proteins that are already broken down into amino acids for easier digestion and absorption. We have been doing this for about 2 months and Maliyah has gained about 3.5 pounds and has grown an inch! This has all enabled for us to reduce her IV TPN by 11 hours! Now it’s a matter of unhooked one pump to start another pump.

All in all we are so very thankful. We have not been back to the hospital since the middle February, Maliyah’s happy spirit reminds us to appreciate every sweet moment.

Below are some photos from the past few months, and also a video of our surprise visit to Tennessee over Christmas.