Tube Time

So much has been happening.  I wish I had time to write more often.  A week and a half ago things got much worse with Callie's feeding.  She suddenly started resisting solid food (more so than usual).  Then for two days she was not able to drink milk from a bottle.  It was as if her mouth was not coordinated enough to latch onto her bottle.  I ended up feeding her milk by a medicine syringe.  Then she got the hang of the bottle again, but refused all solids.  So then I was feeding her baby food by syringe.  A few days into these eating problems she started vomiting.  While eating or drinking at some meals she would gag and then throw up.  It was very stressful and frustrating since I was counting every calorie and trying so hard to get her to eat.  I could not figure out if there was a neurological issue (since she is weaning from Topamax and suddenly could not figure out how to drink from a bottle), if she was having an aversion to formula (since I had just started adding it to her milk and food for more calories and nutrition), if she was possibly just being stubborn about eating, or if maybe she was sick.  After two days of this periodic vomiting I was worried about dehydration and took her in to see the pediatrician.  It turned out she had the beginning of an ear infection.  Sad, but I felt like this was good news.  At least there was some sort of answer as to why she had been “off” and I was hopeful things would be better soon.  After starting the antibiotic she thankfully stopped throwing up.  She also went back to taking bottles just fine, with or without formula (but definitely prefers without).  And she started eating solids again, but only in very small quantities and only with effort on my part.  She just does not like to eat.  L 

The day I took her to the pediatrician we also had an appointment with a new dietician.  I felt much better about the information and advice this woman gave us compared to the last.  She was much more concerned with a balanced diet (vs. just feeding Callie fat & cream) and gave me good suggestions.  But at the same time, she agreed Callie was not getting nearly enough calories and it seemed doubtful this was going to change any time soon.  I explained Dr. Enav was giving me 6 weeks to put weight on Callie before we were going to go with a NG tube, but at this time I really felt like there was no way we were going to make it that long.  I said we were about to go out of town for a week and then would be back two and a half weeks before leaving again.  As much as I did not want to, I asked if it would be wise to go ahead and move forward with the tube next week between the two trips.  She stepped out of the room to consult with Dr. Enav and then returned to say yes, this sounded like the best plan.  

So at the end of this week we are planning to move forward and get the NG tube.  It involves a 1 to 3 day hospital stay.  Apparently they will insert the tube and make sure the feeds are working for Callie.  A nurse and dietician will then train me to use the pump and administer her new diet.  We will need to carefully decide when and how much to feed her through the tube so that we can continue working on getting her to take as much orally as possible.  Finally, I will have to learn how to re-insert the tube in case she pulls it out.  I am pretty worried about this part.  At this age I cannot imagine her leaving a tube in her nose alone, so it is probably safe to assume this is going to happen.  There is a reason I did not choose nursing as a profession… I don’t know how I am going to handle inserting a tube into her nose, down her throat and into her stomach, making sure it does not end up in the wrong place.  L  I am very uncomfortable with this idea, but like everything else you do what you have to do.

We will be in the hospital this Thursday.  Please keep us in your thoughts and prayers.  Hopefully everything goes smoothly and it is a quick adjustment period for both Callie and I, especially since we will soon be traveling again.  In the meantime, we have to keep praying she remains seizure free.  She just had her last dose of Topamax this weekend, so for the first time since last May she is not on a seizure medication!