Well it finally happened. The first ammonia spike since we left DC. We went to the clinic today at noon to get her routine ammonia check. She was smiling this morning, trying to eat her carseat owl strap covers and smiling at me. Spent a couple hours at the clinic getting ammonia lab drawn (3pm) and meeting with Dr. Morgan and the dietician. We also got to meet baby Sawyer and his mom Carla. When we left I got a message from her that they had to go back to the clinic because Sawyer’s ammonia came back at 112. We shortly found out at 5pm that we too were heading back because Ryman’s ammonia had come back as 221. Way too high!! We headed back to the clinic, they drew another ammonia (6pm) and we went down to the ER to be admitted, along with Sawyer. Once in the ER the PICC team came to put a picc line in to get the Ammonul IV. Ammonul brings down the ammonia faster than the oral Buphenyl. That went great but took a while and after the chest X-ray to make sure it was in the right place they said it was too far in and needed to back it out some. After doing so they did another chest X-ray and it was good to go. We got to our room at around 8:30pm, found out her last ammonia draw was 168, which is strange since we had feed her in between the two draws. We expected it to be higher. We continued to wait on the pharmacy to send up the meds. We have learned that since these medications are not used often they usually take a while to get the dosages worked out and to get them from the pharmacy. At 10pm they were able to get them started. Since we found out her ammonia was high we could only feed her the Pro-Phree protein free formula. At 1am they drew labs again and at 3am we found out her ammonia was down to 113. We were able to start her back on full feeds (metabolic formula with protein) at that time. They drew labs again at 6am and we are waiting to hear what that number was. Dr. Morgan came by and we discussed the possibility of getting a port put in. Since this will not be the last time she has an episode of high ammonia it seems like the right thing to do. Sometimes picc lines are very hard to get and if she ever became head extremely high ammonia and we weren’t able to get an IV started it would be a very scary thing to stand there knowing we could have had a port there ready to go. It’s so scary having to make decisions like this. They only down side is the possibility for infection but that is slim compared to the chance she will have another high ammonia episode so I think it’s the right thing to do. Praying surgery can get her in today to do it.
Sawyer’s last ammonia was 56 so he is coming down quickly on the Ammonul.
Please continue to pray for Ryman and her partner in crime. The scariest thing is that neither seemed symptomatic and we had no clue that her ammonia was so high.
Love you guys and will give an update later today.
Update: just heard back and it is a no go on the port today. We will have to schedule it for another time.
Update 2: 66 ammonia level.
God please protect these little ones!