Maddie wasn’t discharged from the hospital today.
A care partner (a fancy term for nurse’s assistant) brought in a bunch of blankets, towels, etc. for Maddie, and on the top of the pile was a little hospital scrub gown. It’s really meant for a toddler, not a baby like Maddie. Here is a delightful, not at all odd, photo of a child wearing such a gown:
It was way too big for Maddie, but I was determined. I pulled out my inner Tim Gunn and I Made It Work.
I thought the scrub dress demonstrated that Maddie could look cute in anything, because the scrub dress? Not cute. The nurses, however, thought the scrub dress was the greatest thing since sliced bread. One even said I should go into clothing design – and she was serious!!! So consider the Scrub Dress my audition for Project Runway. Heidi, call me!
Anyway, last night when Maddie was sleeping, her oxygen saturation kept dipping into the 80’s. She would eventually pull it back up above 91, but each time it fell it fell a little lower and it would take her a little longer to bounce back. After the saturation alarm went off a million times (SO lovely to wake up to – peaceful, like a fire alarm), the nurses decided to give her a little oxygen support. It was so low that they couldn’t tell how much she was getting – probably an eighth of a liter per minute. As soon as they turned it on her saturation shot up to the high 90’s. At that point, I knew she wasn’t going to get discharged.
When her pediatrician came this morning (and, sidebar, I really have to think of a “blog name” for her), she confirmed my thinking. She also said that the area of collapse in her lower right lung had improved “marginally.” Mike saw the x-ray that was taken this morning and gave us a description complete with props. He held out his hands, palms facing us. His left hand was open, and he closed his right into a fist. The open hand represented her healthy left lung at normal capacity (normal for her, that is), while his represented her right lung working at about half capacity. If an adult had a collapsed lung, there are a bunch of treatments we could do that involve blowing into tubes and the like. Obviously, a baby can’t do that. So she is getting her two normal breathing treatments (xopenex and pulmicort) to help reduce the swelling in her lungs, and two treatments to help her dislodge some of the mucus that is plugging up her tiny airways (hypertonic saline and pulmozyme). The last two are primarily used as treatments for, you guessed it, cystic fibrosis! A constant theme in our lives.
Unfortunately, Maddie needed oxygen support for the majority of the day. And, in the last few hours, she has developed a fever and some tachycardia (rapid heart beat) of over 200 beats per minute. Her smiley face has been shelved – she is miserable. Crying, sweating, whimpering. It sucks. I really think that she has what I had last week. I felt kind of crappy the first couple of days, and then suddenly I felt TERRIBLE and could hardly move and had a fever. Poor little thing. I got her nurse a little while ago and she gave her some Tylenol, so hopefully that will help make her more comfortable.
I’m not a doctor (I just play one on the internet), but I don’t think she’ll be going home tomorrow, either.
Your poor little girl I hope she’s well again soon.
Couldn’t she wear some clothes from home? Coz that fabric isn’t exactly attractive.
Secondly, do you like the paed or not? One of the paediatric consultants at our NICU was called Dr Slaughter, there’s an oncologist named Dr Deth. Personally I didn’t want to be a patient of Dr Blunder.
Poor Maddie. Have they ruled out CF? I really hope so for you.
I love what you did with the scrub dress. Hospital couture at its finest!
Gemini Girl says:
Heather, I cannot believe how upbeat you are. It is not easy having a child in the hospital, but you seem to make the most of it. I wish I had your strength. You are a force to be reckoned with (is that how you spell it?). Anyway, the dress looks so cute! You did a great job!
I def think that she is bringing calories trying to breathe. I remember when the girls were in the NICU and we were trying to let them suck from the bottle. The nurses would say to not let them do it for too long bec instead of gaining those calories, they would be burining calories from trying to suck.
Let me know what the doctor says.
BTW- You take so many pictures- I love it. Everytime I bring a camera somewhere with me, my husband says Im crazy.
Is there anything you guys need?
Gemini Girl says:
i meant *burning calories* not bringing.
Mommy's Boot Camp says:
You ROCK.. you are so GOOD at keeping us posted regarding Maddie’s adventures at the hospital. I can’t wait to read more about her adventures in the non medical World. Keep taking pictures & writting. I hope you get her back home SOON!!
I hate that Maddie feels so awful!! I am so glad, though, that you guys took her to the doctor when you did. Poor lil thing. She does look very chi chi in her gown though.
This isn’t my first visit, but it is my first comment. I really hope you all get an answer soon and that Maddie feels much better. She most definitely is rocking the fugly scrubs in a fashionable way… Tim Gunn would be most proud!!