April 2008
100 posts
We met today with a pediatric gastrointerologist. Dr. Blumenthal is helping us manage Lucy’s feeding and nutrition issues. With him, we mapped out a plan to transition Lucy eventually to regular old nursing.
The timeframe is fluid and based more on meeting various milestones, from starting bolus feeds to shifting to breastmilk to becoming a happy breastfed girl.
Step one is an...
Something approaching normal.
We actually made it out to visit a church, Grace Fellowship of South Forsyth, this morning. Without the diaper bag, which I’d painstakingly packed with everything we needed. And Lucy threw up all over herself right as the service started.
Normal, indeed.
Today has been a nice mixture of lazy and productive. I’ve gotten my kitchen decluttered from all of the piles that accumulated between doctor’s visits, helped Sophia clean her room, and started cleaning and organizing our room. It feels good to establish some order, and we couldn’t have a finer spring day to do it.
Life feels manageable today. We can do this.
We’re...
Today was trial by fire for me. While taking Lucy out of her car seat after the pediatrician visit, I accidentally pulled out her NG tube. Then, while Sarah was picking up Sophia, Lucy managed to loop a finger around the tube at her nose and yanked out the second tube.
I didn’t believe the nurses when they said I would learn to put in Lucy’s tube confidently, but I guess I should...
Update after post-op followup
We went in today to see Dr. Kogon’s staff. Great news! Lucy is doing great. She’s gained weight, and they were surprised by how few spit-ups she has been having.
So, we’re done with Egleston! Now Lucy’s care is up to her cardiologist and her pediatrician, who we go to see tomorrow.
We’re up to three. But three is still less than ten.
Where do we go from here?
It is really tempting to think that we are back to normal now that Lucy is home, but we’re not.
We go tomorrow for a follow-up appointment with Dr. Kogon. He’ll be assessing how Lucy is doing. Hopefully, we’ll discover that, even on the continous feeding through NG tube, she is thriving at home. Her last spit-up was last night at around 11:30. That means she is 12 hours...
Just a quick note to let everyone know we’re doing ok. Today has been consumed by trips to the pharmacy, the obligatory insurance screw-up, and, of course, snuggling.
Lucy is doing very well—she seems much more content here at home than she did in the hospital. I think the same can be said for all of us.
I’ll crack out the real camera and take some good photos tonight.
Dr. Kogon reviewed Lucy’s records from this past week this morning and decided to give her a chance to overcome the reflux without surgery. We are taking the Lucybug home today!
In a week, we’ll come back for a follow-up with Dr. Kogon. If her reflux has kept her from growing by then, then we’ll reconsider the fundoplication or other options.
This is a good day.
Today has been a holding pattern. Lucy is still vomiting more regularly than the surgeons prefer. Unfortunately, her NG tube migrated back to her intestines, so she isn’t yet getting fed to her stomach.
Tomorrow, I’m going to ask them to move the tube back to her stomach and try feeds there again.
I did speak to the nutritionist today about milk allergies. Because of her...
Since getting her NG tube earlier today, Lucy has vomited a few times. It seems like it is less than with her NJ tube, but I’m not absolutely certain.
The day shift nurse said the nurse practitioner is talking to the nutritionist about the possibility of milk allergies.
For no particular reason, today has been really long and tiring. Sleeping in my bed last night didn’t really...
The general surgery team spoke to Sarah while I was out today. Bottom line is they would only do stomach surgery as a last resort and only if Lucy was failing to thrive from the reflux. They want to give her a chance to overcome the reflux on her own.
I’m going to push today for a cow milk allergy test just to make sure. Since Lucy’s Nana has significant food allergies, it seems like...
One of the surgery fellows came by and told us to expect the surgery team to come see Lu tomorrow. They’ll just be looking at her for options, so no need to worry.
The cardiac surgeon caring for Lucy came by a few minutes ago. He wants to have the general surgery team check out her reflux and vomiting.
I’ll post more when I know more.
May you never have to hold down your child while a nasogastric tube is pushed down her nose.
Lucy had her GI study with barium contrast dye. Everything looked anatomically correct, which is a relief, but she may need to do it again to rule out all causes. (For the medical nerds, her study was done while her NJ tube was in, so it was difficult to check for pyloric stenosis.)
The study did show...
More tests
Lucy’s vomiting has continued, so there’ll be a whole new set of tests today. They’ll be doing a full GI workup to make sure she doesn’t have any intestinal malrotation or blockage.
On top of that, her echo yesterday show some leaking on the valve between her heart and aorta. Her care team thinks this leak might be preventing her GI tract from getting all the oxygen it...
Spoke too soon...
Lucy just spit up again. At least it was a small volume and light yellowish green in color.
Lucy hasn’t spit up since getting her first dose of Prevacid around 1 or 2 this afternoon. Granted, she’s been sleeping the whole time, but it is a great sign nonetheless!
Lucy’s doing well now. We had another spit up, but it was more yellow than green, which is apparently a good sign (though, honestly, I’m not all that comfortable with either color).
Sarah and I attended the discharge class this morning to learn how to care for Lucy at home. We’ll have our challenges, but they’re all manageable. Now we just have to find out when they...
Gut Check
This morning, Lucy had a chest and abdonimal x-ray which showed nothing odd with her instestines. Lucy just has bad reflux! I never thought that’d be good news, but it is.
It’s been a big morning in other ways, too. She’s off oxygen (they had to put her on it again briefly last night as a precaution when her sleeping oxygen saturation was dropping into the high 80s). And, best...
I’m blogging tonight from Lucy’s room. I’m staying with her tonight on her first night in the stepdown unit.
Lucy is doing well. There’s talk of possibly removing the final drainage tube tomorrow, which would make holding and snuggling her seem so much less frightening.
One of the main concerns now is that Lucy has reflux that has caused her to vomit with more regularity...
