Wednesday, January 11, 2012

Dillon is at CHOP

Where to start?!?! At the beginning is usually the best place. This is what I took to the doctor today...

12-17-11 – Coughed up Substance #1 – white worm like pieces up to ½ inch long. Vomited then a minute or so later he coughed it up while lying on his stomach. I had called the on-call doctor and she told me to keep it in the fridge till Monday. When we took it in on Monday they said it had been too long so they wouldn't even test it. *Not a happy Momma

12-18-11 - Fever in the night up to 101 heart rate over 200
12-19-11 - Coughed up Substance #2 – 2 long twisty things, not pure white like the first thing. About an inch long each while still all twisted together. Lying on his belly. No vomit. Ran this up to the doctor right away. They cultured it and it came back positive for normal flora (bacteria), rare budding yeast, and moderate white cells. But they forgot to identify it! **REALLY not a happy Momma!!

Constipated for 4 days – which has not happened since July when we started Miralax
12-21-11 - Took BM sample with tan round things in it to doctor. Very unusual for his BM to have anything like this in it since h is always on the same formula there is never any substances in it.
12-23-11 – Diarrhea
Constipated for 4 days then the next day had BM then another one that was watery, the next day had a BM then one that was watery
1-6-12 – Coughed up more of substance #1. Lying on his belly, had vomited prior to coughing it up. At this point I called Pulm doctors and THEY could not figure out how to have someone in pathology identity this thing. I was going CRAZY, I know something is not right and no one seems to be taking me serious. Then, Josiah's aunt volunteered to come from WV to get the sample and take it back to the lab where she is working towards her PhD in neuroscience.

I will interject here - while I was going crazy and wanting to pound my head on the wall - God was working all things for good. He had a plan that I did not foresee. Josiah's aunt received Jesus Christ as her Saviour in the car on the way up with my Mother-in-law. Praise the Lord! His ways are not our ways, but His ways are so much better.

Other non-baseline things that have been going on this whole time include:
· For over a year now Dillon has wanted to rest/sleep on his back rather than belly. Since this has all been happening the nurses have had to put him on his belly or he is very upset.
· Agitated more, heart rate going high even at night, not sleeping well, irritated during the day
· Not tolerating stander – heart rate goes as high as 245
· Flushed face constantly
· Vomiting more
· Vomiting the dark brown blood sometimes
· At least 7 times of going 12+ hours without urine
· PT noticed on 1-9-12 that his left leg from the knee down was swollen or had extra fluid
· Switches between no secretions at all – no coughing/drooling for the entire day to drool just pouring out of his mouth nonstop soaking towel after towel – but meds are the same

Monday Aunty Helen was able to tell me that the second thing was a bronchial tree mucus plug. I called Pulm and they said they couldn't fit him in before next week so we made an appointment for next Wed.

Then on Tuesday she was able to give me more answers, that the white things were mucus mixed with lipids (fat). When i told our doctor he wanted me to call Pulm right away and get him seen sooner. When they found out this info yesterday they suddenly were able to squeeze him in today.

The doctor said she was planning to put him on a nebulizer to break up some secretions, etc. But when she saw these pictures she said "I know what this is. This is cast bronchitis. How do you feel about being admitted?"

ummm Not too good! :o) No, we decided we would take weeks to get all the tests done or admit Dillon and get everything done in 3-5 days and keep him safe. So he got admitted. They already did a chest X-ray, and took nasal secretions to test. They are planning to do bloodwork tonight, they are not feeding him in the night so he can have a CT scan of his lungs and a scope done tomorrow (to see how much fat is in his lungs, how many plugs and hopefully find out where it is coming from ie previous aspirations or is he continuing to micro-aspirate.)

So that's where we are. A very sweet lady from church let me drop the boys off with her tonight and is going to keep them. I am home with Haddie for now and will go up tomorrow morning so Josiah can get to work.

1 comment:

Donna said...

Praying for you all and for the people who will be taking care of Dillon. Some of them have probably never heard about Jesus. Dillon and you are there for a purpose. With love, Dad and Mom K.