We finally met the elusive Dr. Lung. She introduced herself and listened to Maddie, and then said that she wants to give Maddie a full work-up so she can get to know her anatomy. She is going to get a CT scan to completely rule out pneumonia, and it will also show the structure of her lungs in great detail. She’ll have to be sedated for this, which is kind of scary but makes sense – you can’t tell a baby not to move for a scan. Maddie has ruined many x-rays by wiggling around. She’s also going to get an Upper GI test to examine her esophagus to see if there is a tiny perforation that is allowing food to get into her airway. Once these tests are done, Dr. Lung thinks she will be able to better diagnose Maddie’s problem. These two tests will be performed on Tuesday. Good thing Maddie was transferred to Westwood in such a hurry. Not.
Really, though, the best part of the day was when we asked Dr. Lung when she was going to get the suctioning procedure that we transferred specifically to Westwood to get, and Dr. Lung said, “oh, she is too small for the suctioning procedure.” Um, WHAT?! When we pressed her she backtracked a bit, and said that she actually couldn’t say for sure if Maddie was too small and that the CT and Upper GI would tell her whether or not this was the case. If she doesn’t get that damn suctioning procedure, I. Will. Be. Livid.
Sharing a room is really, really hard. The people we are sharing a room with are AWESOME, so I can’t even imagine how bad it would be if we didn’t like the family. The other patient in Maddie’s room is an 11-week old baby who is dealing with terrible reflux. His mom stayed with him last night, and she really is the nicest woman who I have a ton in common with. But the rooms are small and cramped and you are right on top of each other. Last night when Maddie made noise or if one of her alarms went off, I was instantly quieting her down so she wouldn’t disturb our roommates. Normally she self-soothes, but she’s noisy and I didn’t want to wake up the other baby. I’m sure his mom felt the same way when his alarms went off, too…especially since I would jump up every time an alarm went off, thinking it was Maddie’s! There isn’t a bathroom, so if you need to use one you have to go down the hall. My favorite part, though, is that they don’t stock the very common anti-reflux formula that Maddie uses so we have to bring our own from home. YET, they are still charging my insurance for food for her! Ridiculous.
Tomorrow Maddie’s pediatrician (loooove) is really going to have to earn the (loooove) that I give her when she comes to check in on us. We really don’t want to be in the run down Westwood hospital longer than necessary, and we’re even willing to bring her home on oxygen to get her out of there. I just know she is going to catch something much worse than a small cold if she’s there for too long. It’s so sad, there are kids on the floor with terrible illnesses. Obviously she isn’t going to catch cancer or reflux, but she could definitely catch pneumonia or measles or one of the other millions of things on the floor.
Tomorrow I will go more into depth about the hospital, like why such a renowned facility is practically in disrepair, the comedy that is the cafeteria, and how night & day the Pediatric floor is from the NICU. But for now I must sleep, and try not to think about how I am separated from Maddie. Mike is staying with her tonight, and since only one parent can sleep in the room, I am at home. It’s our first night apart since we brought her home. Tear.
Can I smack Dr. Lung around for you? Geez.
Hope you got some rest and today brings better news.
Gemini Girl says:
Hope the day brings good news.
I totally want MAddie swag! send me a button!
BTW- I was showing my husband your pics, and he said that maddie reminded him of Neve (with the big eyes) and maybe that’s why I feel a connection to her. That may very well be the case!
It is so cool that all your friends and family did the walk. You raised a good amount of money as well. You totally rock.
ps~I’m on facebook too…..weird how we’re all on blogs and facebook.
The “elusive Dr. Lung” sounds like some sort of mystery or something…
I can absolutely picture what you were saying, sharing a room with another family. That must be extremely trying – I just want you all to get answers, and the ability to get the hell out of there. Which, I’m sure is exactly what you want (duh).
I’m praying for quick healing and comfort for all of you.