I like plans. I like schedules. In fact I NEED them. It gives me some perception of control even though I actually have very little control in this very chaotic and upredictable world of Jophie. It consumes me.....in a good way.
I love being surrounded by everything him. His smell. His smiles. His blankies. His snuggles and yes I even love his Mic-key button, nasal canula and every piece of medical anything thats attached to or poking out of him because it IS a part of him. It's what makes him "JOPHIE" and to have those things attached is to have him "here"..... Alive and well
Sherrie (Jophies pediatrician and our dear friend) called on Thursday.
The results are in. His cultures did in fact grow Pseudomonas. No secret there. Thats one of many he is colonized with however that bad boy is evil and rears its ugly head often. It was active about a year ago and sensitive to Cipro which he has been on for 30 days now. This time its resistent to the Cipro and sensitive to 4 different antibiotics. The very same antibiotics it was sensitive to three years ago which tells me two things.
One: It must be the same strain of Pseudomonas that he contracted three years ago which by the way was his FIRST ever encounter with this evil bug. It's a dangerous and very resistant "super bug" and during the few years that I worked in the medical field it was always known to us as a "death sentence"
I became deathly ill when they told me because "I knew"
Two: Since it was sensitive to Cipro a year ago but not three years ago he either is colonized with "2 diff. strains of pseudomonas" OR it has mutated and is "now" resistant to the Cipro.
And its times like these that I wish I knew less. Ah yes Ignorance is sooo bliss!
After Sherrie and I spoke for a bit discussing and comparing notes she decided that the best course of action would be to have a PICC line placed and run the antibiotic that was the most sensitive.
There are four that are testing sensitive at this time.
1. Gentamicin (He can take this one but he did have some sensitivies to it three years ago)
2. Tobramycin (He had an allergic reaction to this one three years ago)
3. Azactam (This one saved his life but at the same time almost killed him)
4. Amikacin (He has never taken this one BUT it is testing as the most sensitive)
I KNEW that three years ago we had nearly exhausted every antibiotic just trying to knock that bug down to an inactive state so imagine my fear when I hear that three of the four antibiotics were ones we had already tried AND ones he had problems with.
Right now I am more thankful than any mommy could be because of the four there is ONLY ONE on that list that we have not tried AND it is the one that is the MOST sensitive meaning it would be the best one to use.
YES.....It's a God-thing :0)
"THE PLAN" was to go up early this morning and have the PICC placed outpatient however I found a few kinks in "their plan" and you know this must be "My Plan" lest I lose my sense of control. :0)
The "New Plan" will be to arrive at the hospital very early Monday morning(7:30 a.m.) which means we have to leave no later than 6:00 a.m. which also means I will not be able to sleep because I don't finish up with his stuff till around 5:00 a.m. which is when I usually hit the sack however, I'll need to hit the shower at that time. Phew! Tired yet?? But hey.....I'm "in control" :0)
After we arrive we are to go to radiology to have the PICC put in. For the record he has ALWAYS had his PICC and Central lines placed by one of the PICU docs with sedation either on the peds floor or in the PICU. Needless to say I'm a bit anxious. Jophie is a VERY hard stick on a good day and an even harder child to thread a PICC or Central line through to the heart not to mention how dangerous it is to use sedation on him. He always does NOT breath on his own when they begin taking away the sedation meds. It's a really scary thing to watch your child not breathing. I've witnessed it more than I care to.
Next obstacle will be the antibiotic. Once the line is placed aside from any complications we are to go on up to the ped floor and they are going to admit him onto the floor so they can run the first dose to make sure he isn't allergic to it and YES, I'm scared about that for more than one obvious reason.
Once we get all this behind us we're coming home and I'll maintain and run his antibiotics from here. I've ran PICC and Central lines at home for him for up to 6 months at a time so this is the easy part. We just need to get to this point.
Specific prayer requests would be:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!
Ok off to finish up Jophies food and meds and hopefully hit the sack soon! The nurse called off sick today so we're wingin it alone! :0)
Thank you all for your kind words and your continued prayers for Jophie.
We do appreciate and covet them.