Monday, March 31, 2014

Wonderful News

Today our lives are changing. 
We have been working toward this day for quite some time.
I am actually in shock that this day is here and I will praise God that we have made it to this point in this journey.
Owen came home from the NICU on full g-tube feeds and that was it. 
It was terrifying. We were so nervous about the ng-tube and charted eveything just like the nurses did in the hospital. He was on many medications multiple times a day so we had to keep track of it all. He came home at 14lbs at 8 months old. 
When Owen was 22 months old, he weighed 16lbs and had been hospitalized many times for "possible bowel obstructions" which really meant his bowel had stopped working because he had caught yet another cold type virus. He would get dehydrated, lose weight, and need IV fluids to keep him stable until he got rid of the virus. After a year of that the doctors decided he would not be able to fight off all these viruses without the proper nutrition and he would need more nutrition to grow and develop properly, so they decided it would be best for him to go back on TPN (he was on it in the NICU as well). It was devastating to us but we knew it was the right choice. Owen gained weight quickly on TPN and even his hair was healthy after a few months. He thrived on TPN, it has saved his life. I am so thankful the doctors made that decision, he has grown into a pretty awesome little boy and we have been able to focus on keeping him healthy while he has the proper nutrition. 
For the last year we have been weaning him from TPN. He was showing us that he can handle the g-tube feeds he needs to thrive. It has been an up and down journey with weaning TPN. Sickness has definitely slowed the process. 
However, today is the day!
Tonight Owen receives his last dose of TPN! 
This is something we have been working toward for so long and I am jumping for joy! Our boy will be thriving on g-tube feedings and his oral intake alone! 

After tonight we will only have to care for his central line. 
No more preparing TPN
No more hooking him up
No more unhooking in the morning
No more weekly blood draws 

We are still unsure of how long he will have the broviac (his central line). One doctor thinks we should take it out after a few months of weight checks to make sure he is taking in enough calories through g-t and oral intake. She said we could put in a port later if he ended up needing to be accessed more often than we are expecting. The other doctor thinks we should leave it in through a full winter to make sure he can handle sicknesses without needing the extra nutrition support. 
I am unsure of which opinion I side with. I don't think I will push for either decision. I will pray that God lead the doctors decision and be content with that. 
We are just so thankful to be able to make this next step in Owen's journey together!

1 comment:

  1. Praising God with you for the bravery it must take for all of you to face each day, and for the milestone you have reached today!