Surgery on Weds which was scheduled for 3:00 ended up being delayed about 4 or so hours and we went to the Pre-op and then OR around 7 and 7:30. I think the surgery took till around 10 but cant remember that part to well. Because the surgery was delayed so long and because we had given the solu-cortef-cortisol replacement an hour before the original surgery time they did do a second dose ahead of the actual surgery.
I guess I thought this surgery probably would hurt and wouldnt be all that much of a walk in the park and althoguh it definitely wasnt one of the hardest surgeries it was painful and still very uncomfortable in my thoracic spine where 2 incisions are. I have a feeling I will be wearing clothes for the next few days I can disguise not having to wear a bra and for things like church will be finding the most comfortable bra I can even though the incisions are below and I think above the bra line. The actual shunt tract isnt all that long and only (I think) goes from one side of my thoracic mid-spine to the other in to pleural space.
I did end up with a pneurmothorax (partially collapsed lung) after surgery Weds so was on 100% oxygen through a face mask up till Sat. which just meant (not to minimize) having shortness of breath and chest pain of which is alot better although there is a bit lingering. Thankfully this healed on its own (daily xrays) otherwise the treatment is a chest tube to release the air. OUCH!
There is still a pleural effusion which is likely (I tihnk) just from the CSF draining in the area around the lungs and should just absorb if it works as the shunt is intended to.
Dr.Bragg made the comment how tough the muscle was to get through in tunneling the shunt catheter and that is part of the soreness I think. I think the 'toughness' has to do with the storage from the MPS (like continually adding garbage to a garbage can but never emptying it so it's harder to get to the actual target/whatever you want to find). Hopefully this back soreness will heal in short order!
For Pain Mngmt we rotated a cocktail of morphine and dilaudid IV and oral which worked pretty well and at this point the thing that hurts the worst is the 2 incisions in my upper back. As far as the lumbar swelling from surgery a week before Dr.Bragg and her team drained some of that spinal fluid which helped alot with that discomfort although there is still a fair amount of swelling that has reaccumulated. Most of the stitches are dissolvable minus a couple incisions from the week before.
The shunt type is a Thoracic to R Pleural shunt by P.S Medical and low pressure valve.
Within a day of this surgery we ended up opening the external drain back up and have been draining a very fair amount of CSF from this as well so we've decided to just go ahead and place a second shunt again and Dr.Bragg is tentatively plannig on this for the 2nd week of Jan. The plan is to place the 2nd shunt likely in the back of the head tunneled down L side (despiter Port) and then tunnel back across chest down to stomach.
She doesnt actually have clinic time that week or normal surgeries scheduled but has a few cases on bc she is finishing up some case studies she has to put together for her final boards (certification). She said she would like to try and do my shunt that week and will have her Secretary call me Weds. see how I am doing and get this sorted.
Santa has a Ventriculostomy too..
Chartwell a Pharmacy company and Home Health United my Insurance HH company have coordinated the Daptomycin injection and will come out starting Chrisrmas Eve and then for a few days to train me how to do this over a couple minute flush. I will either do this up till Fri or at my Infectious Disease fup Appt the doc will tell me if from their testing do I need to cont the med for another period of time or not.
Otherwise its just been an exciting (note sarcasm) few weeks of soem VERY annoying, slightly (again insert sarcasm) nurses (not all!) who dont know my case but
who have 'hovered and who put a deaf ear to things you have to say that your own TREATING DOCTOR okay'd. In this case the drain being open for short periods when I stand up and my ICPs being more tolerable when they are in the negative. I dont get why a nurse wouldnt look at A. how long a patient has been in the hospital and B. verify what they are saying is really what the dr also said was ok + stop badgering the patient that they are wrong constantly, With one nurse I told him to knock it off more than once and finally yesterday (Sat) my day nurse told the night nurse to chill out, that I knew what I was doing/saying and that in fact my Neurosurgeon HAD ok'd leaving the drain open when I stood up amongst other things!
Hallelujah to finally getting out of here and to it being Christmas Eve tomorrow and I AM GOING TO BE HOME!
Thank God for the graces he gives, the compassion has has and for the reminders he sends that despite trials he will always lead the way.
In Him All things are good and gracious!
Twin brother (Aaron) and I