04/04/14

It's been a busy past week in the world of Molly. This post will be piecemeal because there is a lot to cover.

Liver: The official results from the liver biopsy are in. Nothing changed from the preliminary results. Damage to liver is TPN-induced cholestasis, no cirrhosis, damage is reversible. They give her 2 medicines for her liver and have started to wean them. They do biweekly labs, checking liver enzymes and clotting factors, along with ammonia level. They seem to all be stable, even with backing off on the liver meds. So, that is good. 

Feeds: We finally ran out of breast milk. The dietician wanted to try her on progestimil which was better for her liver. However, her tummy did not like the change. She spit up over and over again yesterday. So, they went back to using neocate. This formula has been tried and true with Molly so I feel good about using it. So far, so good.

MRI: Molly got her head MRI this past week. It is something that they wanted to do before discharge. You may or may not remember that Molly had a grade 1 (very small) brain bleed (IVH). It resolved on its own in Molly's early days. So, there was some concern about the brain damage this could have caused, along with her 3.5 month fentanyl dependency. We got good results from the MRI, thank the Good Lord. They said they saw what they expected to see in a premature baby who has been hospitalized since birth for 6 months. Nothing major and completely expected. Some of her brain is a little slower to develop. She is going to need a lot of therapy (speech, physical, and occupational) when we get home. This was totally expected though. 

Trach: Molly is slated to get her tracheostomy next Thursday, April 10. No set time yet. Once she gets her trach, we will be making our way out of Children's PICU. She should be sedated for the first several days after surgery. At 5-7 days after surgery, the surgeon will do the first trach change. One of two things will happen then. Ideally, she would then move out of the ICU and onto the pulmonary floor. But, apparently that floor is always full and you have to wait awhile for a bed. So, if she can't get to that floor, she will stay in the ICU. They will start to teach Tim and myself how to care for the trach and g-tube. She will be transitioned to a home ventilator and we will learn how to use it. During this time we will be waiting for a bed at Baylor Our Children's House (BOCH). When a bed is ready, she will move there. It's basically a place where we will stay with Molly, become comfortable with all of her care and doing it ourselves, then make our way home. From our understanding, our length of stay at BOCH will be up to us. By this I mean how quickly we want to learn what we need to learn. Of course we want to learn as fast as we can, while still being completely comfortable being Molly's caretakers. So, all that being said, I see us making our move home in 6 weeks to 8 weeks. 

Vent: Molly continues to have good blood gases (this morning's was pH of 7.40, co2 of 49). The vent pressure is now 16. I believe they weaned the PEEP from 6 to 5. All of these things are very good!

Misc: Ma (my mom) and Nicole came to visit Molly on separate occasions. It had been since Christmas since Nicole had seen her. At least a month, probably more, since Ma had seen her. We have been trying to get Molly into a bouncy seat at least once a day. She seems to like it okay. Both Tim and I have been able to hold her as well. And, she got to wear a dress for the first time ever. It wasn't an easy thing to get on her, but the nurse made it happen! And, she looked oh so cute. I must buy more dresses!

Now, some pictures from the week, including poses with Ma and Auntie Nicole!