Happy birthday to our precious Hyperemesis Gravidarum (HG) Survivor, Eragon! You completed our family 3 years ago as we stood our ground and fought for the best treatment possible to save your life and mine. We were informed that we should terminate you but we believed that there were options that we were not aware of and thank goodness for the HER Foundation website and all of the wonderful information that was available, so Daddy and I were able to become educated about HG and discovered the best procedures available; because of this we were more able to advocate for you and I. We love you and are so glad that Mommy could use the PEG Tube and the amazing protocol that aided in saving your life :) We have decided to post the amazing protocol that we used to save your life in hopes other families can also benefit. It is our hope that this protocol will help other women and their families do their best to find what works as quickly as possible. We all know that this is trial and error and as a team we can develop a system that will save lives.
I had the PEG tube placed in May of 2009 and was on Glytrol feedings 2000 calories a day. The hospital originally had me set my pump at 85 mL's an hour and that meant in order to get all of my feedings in I couldn't be off of my kangaroo pump even to do my medications. The other problem was there was no way to get proper hydration. In the beginning I was going to the hospital for fluids almost daily. I didn't have an OB until I was over 20 weeks pregnant because I was fighting the insurance. They wanted me to go to UC Irvine which is too far so I fought them. They sent me denial letters stating that HG does not cause death. So, I sent them my daughter Ayden Rae's Death Certificate and told them no matter what they said I was going to Loma Linda where they knew me and my condition.
I was able to see Dr. Block at Loma Linda :) He is really great! What we did really worked and my baby was above average in size and growth. The doctors are so surprised. This was by far my best pregnancy. The PEG J/G tube was the best choice they could have made for me and my baby. I had a PICC line in my 7th pregnancy and all of my organs started failing and my blood sugars went as high as 1422. I knew I couldn't do that again.
I don't want to overwhelm you so I am just going to give you a list of what we did!
1) PEG Tube placement. With J & G Tubes.
2) Alkaline water ONLY!!!!
3) We have a bedside drain bag connected to my G tube 24/7 and it is draining my G! I had such horrible heartburn so they wanted to just see what would happen when they connected it and they were amazed at how much Crap came out and decided to leave it. It really has helped.
4) Glytrol Hyperglycemia formula 2000 calories per day.
5) I figured out that I needed to speed up my pump to 180 mL's per hour; in order to get proper nutrition and hydration. My husband and I took a lot of my care into our own hands because we knew we had no choice. This was my last pregnancy and we were determined we were going to be successful. Speeding the pump up to 180 mL's an hour allowed me to do 6 hours of feeding and then 6 hours of water, 6 hours of feeding and again 6 hours of water. 1000 mLs of each every 6 hours.
Once we did the above I felt so much better. I was also not taking daily trips to the hospital for hydration. That was a blessing in itself.
6) Once we figured out the food and Hydration issues; we then decided that each time we would change from food to water we would then also do my medicine and flushes. Which meant no extra time off the pump and actually I would be getting more fluids at the same time.
7) We setup a medicine station in the bathroom. We got a pill crusher and were able to crush any pill that can dissolve in water and flush it through my J tube. With the liquid Zofran the insurance would only approve a few days at a time so we had to figure something out so my husband was not always at the pharmacy getting my medications. It was just better to crush the pills.
8) Medicine Schedule
a) 5am 2.5 mL sertraline, 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid.
b) 11am 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid, 30mLs Bazi Liquid Vitamin, and 8oz cranberry juice.
c) 5pm 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid and 30mLs Bazi Liquid Vitamin.
d) 11pm 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid, and 10mg Ambien crushed.
Together we will make a difference and save lives worldwide so families worldwide will no longer suffer from Hyperemesis Gravidarum (HG)
Thanks,
Vanessa Pack & Family
Ayden Rae Foundation http://www.aydenraefoundation.org/hyperemesis-gravidarum-petition/
