Carmen has been in the hospital at Children’s since Tuesday night and is doing well. She has an NG tube (nasal feeding tube) and I practiced putting it in this morning. Basically, it’s a long flexible thin tube that has to be put down her nose and then tested to make sure it’s in her tummy, not her lungs. To test, we will push air into the tube with a syringe and listen with a stethoscope for a gurgle sound. The tube is then attached to another tube leading to a feeding bag which is attached to a feeding pump that will administer a certain amount of Nutrin Jr. per hour. The plan is that Carmen will get continuous feeds at night (10 hours) and then 3 feedings during the day. Hopefully in a few weeks Carmen will come back to Children’s for the G-tube (tummy feeding tube) which sounds easier to deal with. The plan is that Carmen will be discharged tomorrow (Saturday) once we have equipment and training.
I’ll give a run-down of our stay at the hospital thus far:
Tuesday night, we brought Carmen to the hospital and she got the NG tube and an IV in her foot and monitors for oxygen and heart rate. She completely wore herself out crying (the IV was the most traumatic) and slept thru the night. (First time she has slept more than a couple of hours at a time in weeks.) I on the other hand got about 2 hours of sleep. Carmen’s little roommate screamed for 4 hours, from 11pm-3am and then got up to play! I was a mess!
Wednesday, Dave, Lauren and Grandpa came to visit and Carmen smiled and laughed when Lauren climbed in bed with her! Lauren said, “I love Carmen. She is my BEST sister ever!” Wednesday was fairly uneventful as the nurses worked on increasing Carmen’s feedings to make sure she could tolerate faster tube feedings. I prayed that day that we would get a very QUIET roommate if we got one at all. (Carmen’s first roommate had been discharged.) Carmen went to sleep at 9pm and so did I. We woke at 8am to find a little 9 year old girl in our room. This sweet little girl was angelic and perfectly quiet. Thank you God! I later found out that she also is adopted. Her family adopts special needs, medically fragile kids.
Thursday Carmen had an Upper GI test to determine future G-tube placement. Everything looked good. Thursday night I went home and Dave spent the night with Carmen. Lauren really needed me home. She has a cold and hasn’t felt well. I arrived home to find yummy food from my MOPS friends! I left Dave at the hospital with an apple and oranges. When I came back Friday morning I found a bag of Doritos, a Kit Kat, a Mr. Goodbar, a Coke and a package of cookies! Seems Dave had a party in the room.
Today (Friday) Carmen had a milk study to determine if she is having reflux. The results are that she has moderate reflux. Hopefully tonight we will get the equipment so we can go home tomorrow. I feel like I have been here for a month! Carmen has done really well and actually has slept better in the hospital than at home.
A few cool events:
- The doctor from Israel who was observing the day we found out Carmen might have Tay Sachs stopped by to say hello. She asked how I am doing. I so appreciate when doctors ask how we are holding up.
- Dr Tifft stopped by today….As I wrote this, she walked in! She is genuinely concerned about her patients and their families. I really like her. If anyone needs a geneticist and is in the D.C. area, I know a good one! (Ok, I am done with my Dr. Tifft advertisement. Ha! Ha!)
- I want to say thank you to Joy at ARC for ordering the bath chair for Carmen. We got it in the mail this week and that thing is built like a tank! Carmen will be enjoying her baths- and she is in desperate need of one after 4 days in the hospital!
I need to go get dinner but want to close by thanking my MOPS friends. This week they have blessed us with delicious meals and come up with a plan to help us. I could not do this alone and I thank you.
