C'mon dishcharge, C'mon!
Written May 10, 2012 10:56am by Amber Gannon Medina
A lot of people have been asking when Mira will be able to come home. I wish there was a date the doctors could give us, but it has been difficult to pin them down. In fact, I almost think they have about as much of an idea of when she will come home as we do. Yesterday was the first day we were able to talk to a doctor and get some a vague idea of what needs to be accomplished in order to high tail it outta this place! And if you have been reading my posts, I am so ready to be out of this hospital!
1.) Tolerate Feeds: Mira needs to be up to full feeds before they can talk about doing anything else. This is a slow process....Its pretty mind boggling what the dieticians do-the calculations they need to make in order to get her the calories she needs, while also making sure she is able to digest the type of nutrition they are giving her.
She started out being able to take breast milk, which was wonderful because she was able to tolerate it very well (very little spit up or tummy troubles), while also getting all the "good stuff"! This was working well until they realized she had a pleural effusion (fluid in or around her lungs) and had to switch her to a low fat formula. When Mira has an effusion that is caused by the high fat content in breast milk, she has always been switched to this type of formula, and usually has to be on it for 4-6 weeks. She also doesn't tolerate it very well, and when they fortify it, she tolerates it even less. I was confused as to why they would need to fortify it, but I guess they were really worried about her losing weight and because her liver is so enlarged (due to being on TPN (a type of fake nutrition taken through IV), they didn't want to have to put her back on that. So its the lesser of two evils....I guess.
Although, Mira has been throwing up a good amount (maybe 2-3 times per feeding, which are every 3 hours), I still consider her a success! To have an empty stomach for most of the 7 months she's been here, and to all of a sudden be getting feeds in her tummy? I think she's doing great! However, she is still barely inching her way up to being on full feeds-I believe she will be at full volume once she's up to 80+ CC's (she is presently at 70).
2.) OFF her Milrinone:
Mira has needed Milrinone for most of her life. It is something that helps the squeezing of her heart, and most recently when they tried to wean her off of it, you could tell almost immediately she could not tolerate it. Milrinone also helps profusion (getting all the blood to the different parts of her body), and she needs sufficient profusion in order to digest her food. So they are waiting until she tolerates the full feeds and then they will wean her off the Milrinone and she how does does. I guess I kind of feel like this will be the "moment of truth" and I am hoping she has settled into her Glenn anatomy well enough to hold her own while being Milrinone free!
3.) WEAN her off the IV diuretics:
This seems to be a little dicier than I imagined. In fact, this weekend they changed her IV lasix to enteral lasix and the fluid around her lungs worsened. She wasn't quite ready for it. Mira has always had trouble with retaining fluid (now we know for sure whose daughter she is), and they call her "volume sensitive"-whenever she gets extra fluid, be it blood or now formula, she tends to have trouble excreting it. However, thank goodness she reacts very well to the diuretics! The IV lasix are a lot stronger than the enteral kind, but of course she cannot go home with any IV meds, so this is another deciding factor as to when she will be discharged.
4.) G-TUBE: Somewhere in this 1 step forward, 3 steps back mess of a straight and narrow and sideways path, MIra will need to get a G-Tube. I feel a little sad that she will need to get one, and even sadder that she will have to go back into surgery....Plain and simple, she doesn't tolerate surgeries very well (as we all know), and I don't want to tempt fate by putting her through anything she doesn't need. But she needs a G-Tube...She doesn't know the first thing about sucking and swallowing, so most likely she will never eat from a bottle. She has never been well enough to EAT, and the normal instinct we all have was lost on her. In fact, she will probably go from being fed liquids through her G-tube to eating solids. She is on the tentative schedule for the surgery in June, but the doctors are thinking she may be pushed back depending on how well she is doing with her feeds or whether they want her to be off Milrinone before her surgery.
I think by now everyone knows that when they try one thing with Mira, oftentimes other issues arise. I realize that each one of these hurdles could mean that another little hurdle comes into view or we find that the doctors need to take baby steps when their more adult sized steps cause her to regress.
I have to admit, the last few days when they have been throwing the chest tube threat back and forth, I realize just how far we still have to go. And I also realize just how much I just want us to go home. Sometimes this long and drawn out journey feels like torture...But the threat of chest tubes also make me realize I cannot take what we DO have for granted-I am still able to hold Mira! She is happy and smiley and she looks so good. Most of all, it really does seem like this Glenn Anatomy is working for now and that the notion of imminent transplant is in the fringes.
And how normal is this? Today, we are having our family pictures taken in the hospital! They have a wonderful charity that provides families with professional pictures....The last time they came by, MIra was too unwell to have it done, so I am very grateful she is making such noticeable and wonderful progress!
Thanks for bearing with me on this-maybe confusing?-medically update!
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