The Upper GI today showed what I already knew – Maddie doesn’t have any fissures between her trachea and esophagus, so reflux is extremely unlikely. But try telling that to Dr. Lung. She said, “well, this was just a snap shot. I would like her to have a pH probe in the future.” I’m thinking we’ll probably decline that. It’s just not an issue for her. Hopefully she’ll forget that idea.
We managed to keep Maddie pretty calm until the procedure. When we were in the dungeon of the hospital, she woke up and started to get that look on her face like, “where the hell am I, and where is my food?” Unfortunately for the GI team, that was when the procedure started, so she cried pretty much the whole time. The only time she was quiet was when she was drinking the barium. I couldn’t believe she drank it, but she gobbled it down. We were able to be there with her on the other side of a window (because of the radiation), and we could watch the screen to see the movement of the barium through her esophagus into her stomach. There was a med student explaining it all to us so it was pretty cool.
Dr. Lung came by later in the afternoon, and that’s when she told us everything was normal with the GI screen. She then said that since Maddie had, at that point, been off oxygen for over 24 hours, she was leaning more toward a diagnosis of Bronchopulmonary Dysplasia (BPD). Or, as she said, “severe, severe, severe BPD.” Wow, is that the medical term? Severe, severe, severe? Jeez. She is going to monitor Maddie for the next few months and then decide if she needs a lung tissue biopsy.
With the test results coming back in our favor, we figured Maddie would be in the clear for discharge today. She hasn’t needed oxygen since noon on Tuesday, and she was disconnected from the pulse oxygen monitor. The nurses even said that they thought she’d be discharged. Dr. Lung had other plans, though. She came in and said she wanted to have a night of Maddie on a – again, her medical term – super fancy pulse ox monitor, to make sure that she wouldn’t need oxygen at home. When we pointed out that Maddie had been on a monitor last night without oxygen, she told us that the monitor wasn’t sensitive enough. I asked about home monitoring, and she said that it would take our insurance a day or two to authorize that, so we should just do the overnight in the hospital. Thinking about it now, I can’t imagine that an insurance company would pick staying in the hospital over home monitoring if given a choice.
After I relented to Maddie staying in another night, a man from the Pulmonary Lab came into the room and started fiddling with Maddie’s monitor. I asked him what he was doing, and he said he was zeroing out the monitor for the overnight study. I said, “I thought you were bringing in a new monitor” and he said, “oh, I don’t need to since this room already has one.” Alarm bells started going off in my head and I said, “don’t zero that one out!!! She’s been on it since she got here and she wasn’t on oxygen last night!!!” When the lab guy heard that he said he would take the data and page the doctor. Victory! We started planning our escape from the joint. Our roommate’s mom was so inspired she started agitating to leave, too. The lab guy said it would take a few hours to download all the data as it records down to the second. Fine, a few hours is nothing compared to another night.
The lab guy came back a little after five and said that the data was inconclusive and that the doctor was coming. He quickly re-attached the monitor and left the room, saying Dr. Lung would be able to tell us more. When she came in, I demanded some answers. She hemmed and hawed a bit, saying that the data would be finished downloading tomorrow at 7:30. The lab guy had only managed to download the data up to April 27th, when she was still on oxygen. I didn’t understand how it would take another twelve hours to download two days worth of data, and then my mom realized that the reason it wasn’t going to be downloaded was because it was 5 o’clock – time for him to go home. I was livid when I realized that because this man wanted to go home, it was preventing us from doing the same.
I was ready to take Maddie and leave, but Dr. Lung talked me off the ledge. She rightfully pointed out that if Maddie needed oxygen at home, we could get her the equipment in an hour as a patient. As an outpatient, it could take days or even a week. She then swore that we would be out of the hospital by 10 am tomorrow. I still don’t believe it. This place has a way of grabbing hold and not letting go.
Our roommate’s parents had much better luck. We got along so well with them in our time here, they were ideal people to spend such close quarters with. When the mom heard we might go home she was terrified of being here with someone else – they’d previously roomed with a crack baby. No joke. Her son didn’t have any other tests scheduled until the end of the week, so she started pushing for them to be done outpatient. This mom is amazing. She doesn’t let anyone disturb her baby. She demands answers for everything and she gets them. She has totally been my kick-ass mommy role model! So of course, she got her son discharged. I know we’ll stay in touch, but I miss them already! Now I sit here with a new baby who was just brought over from the pediatric ICU. His head is wrapped in bandages, like he had surgery. This place is so crazy, we have to get out of here.
A few minutes ago, Maddie had a breathing treatment from a Respiratory Therapist that knew us from the NICU. He was there the night she was born, and couldn’t believe how great she looked. He told me that no one expected her to make it through the first night. I like knowing that she is a miracle, but it’s hard to hear stuff like that when we are still in a hospital setting. I told him to tell me that again in a few years, when we are at a NICU reunion and she is running around playing.
Gemini Girl says:
Maddie has def come a long way! Try to discharge her asap if she is well enough. I hate staying in the hospital longer than necessary. Thinking of you and the great hospital sushi!
Sushi? In a hospital? Geez we live in the dark ages here in Maine. Granted, I don’t like sushi, but I think maybe we’re missing out on something here. Ha.
Oh I really hope Dr. Lung lets her go home today. Thinking of you. Will read Twitter updates to get my Maddie fill.
I can’t even imagine how you feel. I got upset several times when I was reading this and I’m upset now. I don’t like Dr. Lung and I don’t like that asshole who needed to leave at 5. I hope you got his name and I hope you tell someone about that. I hate hospital crap – the two times Faith was in the hospital I came close to going ballistic and it was nothing close to this length of time.
I’ll follow on Twitter.
So sorry to hear all that has been happening with baby girl. I’ll continue to keep her in my thoughts and prayers. She is so beautiful. Hospital stays are NEVER fun. Hope she gets to go home!
I have been struggling with this for a long tie, I appreciate the encouragement – it gives me hope. Maybe someoneelse will figure this out.