Feeding and issues with the stomach and intestines is often a very big issue for CDH babies, one that I had really really really hoped we could avoid. I had hoped maybe we could catch one break in this rollercoaster. It seems like everything that COULD happen with CDH has happened with Grace. Grace had an abdominal ultrasound yesterday and they did not see Pyloric Stenosis, so they said her stomach might just still need time adjusting to it's new home in the abdomen, so they wanted to place a new feeding tube. Usually the tube goes through the nose (NG) and then into the stomach, since being intubated and having never used her mouth for eating, she cant eat normally. Well in Grace's case they cannot put it into her stomach because obviously her stomach is not emptying into her intestines. So they wanted to bypass the pylorus and put the tube right into her intestines. They tried this morning and it does not appear to be in and flowing correctly. They are going give it a little while and then xray again to see if it is working or if there is an obstruction somewhere. Prayers would be much much appreciated that we can get the stomach/intestines thing figured out and she could begin eating and taking meds orally.
She is heading to the OR sometime this week to place a new Broviac and PICC line, since the Femoral line in her leg was only temporary. It's not a huge procedure or anything but it's still a trip to the OR and still anesthesia. So pray please for that to go well.
Grace is getting very very tired of being intubated, she is very upset most of the time unless she is very sedated. They have started giving her chloral hydrate, ketamine and methadone. In addtion to versed and fentanyl. I am very uncomfortable with the amount and types of sedation they are giving her, but at the same time do not want her to be upset and uncomfortable, since the more upset she is, the worse it is for her hypertension.
When they tried to place a PICC this weekend, she got extremely upset and they went up again on her Nitric because her blood pressure was very very high. The dr's recognize that she needs the tube out and will maybe be less irritated then, so they have gone up on her Flolan, the medication to try to relax her heart to help her PPHN in hopes that they can wean the Nitric and the vent and extubate soon. They would give her nasal cannnulas to deliver the remainiing Nitric until they can wean that. Hopefully htey can use her gut and begin Slidenafil again since it did work for controlling the PPHN.
Grace is obviously still doing better than she was a month ago, and much better than 2 months ago. A month ago she had just had her belly closed and 5 weeks ago she was still on ECMO. But she is not doing as well as we had hoped she would be at this point or that she could be.
She needs major prayers that her stomach issues could get figured out and resolved and that she could wean the vent and be extubated very soon and that when she is extubated she will be able to handle breathing on her own and not need reintubation. Pray that she could stop being given so many many drugs to keep her calm. Holding her is on hold because she gets so worked up over the transition from bed to arms and then from arms to bed just sends her into a fit. She had been able to have her top up and look around, be awake and tolerate the noise of the room, and is now back to a closed top because the noise and activity now bothers her again. Please pray that our sweet girl could begin to truly move forward.