It's been a difficult week with Amelia. She is showing signs of allergies. She sneezes and has lots and lots of clear secretions coming from her nose. And she is miserable. I asked the pediatrican to put her on an allergy medication. She said there were 4 OTC to choose from. She suggested starting with Zyrtec. She said it could take several days to see any effect. Another one she suggested was Benadryl, but I was reluctant to give it to her due to the sedative effect.
I have been standing over her with a bulb suction and saline drops every waking hour trying to stay on top of it. She starts desatting when she is blocked up as you might imagine. I have also had to creep up on her liter flow.
She has been on the Zyrtec for 4 days and it showing no perceptable difference (we have now switch to prescription Singulair -- which the doctor forgot to call in so it was not ready for us to pick up at the pharmacy yesterday). Yesterday she had a scheduled pediatrican appointment and her liter flow was up to 1.5. We have her down to .75 when she was breathing free and clear. When she got to the exam room and we were waiting on the doctor she began to desat and then sat ok, up down, up down -- obviously breathing around something. She finally started to cough, retch and throw up. Some of it was formula but the rest was snot.
Briefly when the doctor came in she said she was not going to let us go home like that. She would have to admit us. But gradually Amelia pulled herself up by her bootstraps and started satting consistently. I am sure by vomiting she cleared things up quite a bit.
I told the doctor we could not go on this way and it was ridiculous to go to the ER every time we needed suctioning...so what could we do? She has ordered a home health nurse to come out 2x a week to give Amelia a deep suctioning with a machine. The company is coming over this morning at 9:00 to do an assessment of Amelia's needs.
I had been reluctant to have a home health nurse for so long because it was always suggested to have one in order to give me a "break". I had been home doing for Amelia for about three weeks before I realized we were eligible for one and at that point I had things well in hand so I didn't see the need -- and to be quite honest I have heard some horror stories about home health nurses. Anyway, it felt a bit accusatory by the doctor that we were in this mess because I had refused help. Not very helpful attitude and not fair.
The only reason I can't take care of my child on my own in this case is because I lack the necessary equipment. They have home suction machines, but for some reason the pediatrician is reluctant to authorize my use of it. She said it was for trach kids or kids that have difficulty swallowing. However, if we find that 2x a week is not enough to keep on top of it, then they may authorize the use of one after all. Sigh.
So after that we went to the ENT office to get a follow up with something they saw when they examined Amelia in the ER. They did another flexiscope down her nose and see that she has a paralyzed left vocal cord and this was confirmed yesterday. Thankfully it is stuck in a position that is OK and her right cord is compensating. There are surgeries they can do to move the left cord later that will help make her voice louder, but he said that would be risky right now and that she is doing well with her breathing and swallowing (as evidenced by an earlier swallow study).
He also said that there was no reason why we couldn't have her eating things orally if we were working with a speech language pathologist, which we are. We have an appointment with her today so I am going to let her know and hopefully we can begin to make some traction on eating and weaning from the g-tube!
Now if we could just wean her off this cannula we would be off to the races.
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