June 30, 2010

0600 Hours

Good morning to all of our faithful readers.

It has been a very emotional and trying time since the 18^th of the month. We took Dar to Enloe Med Center for what started out as breathing issues and low O2 saturations in her blood. It was discovered that she had a very nasty UTI again which began a strong regiment of medications.

The following Wednesday at 0245 in the morning I received a call that Dar was being moved to the ICU. Reason for this were not alarming because it seems that each time we go to the hospital Dar ends up retaining CO2 in her blood and has to go to the ICU and be place on the ventilator for a day or two. You would think that staff and her medical team would have learned by now that they have to be careful and watch Dar’s blood gasses. Or better yet listen a bit better when I make a suggestion regarding my suspicions of CO2 retention.

Later that morning around 0700 hours I called to see how she was doing and learned that Dar had suffered 2 Granmall seizures. I immediately left work and before I got there she had a third and was running a 103 temperature.

We later learned that not only did Dar suffer the seizures she also suffered what is called a “sub-arachnoid bleed with no vascular abnormalities in the left front lobe of the brain”.

We have been running the full gamete of tests and looking for answers ever since, I will say that Dar is doing better and I am enclosing some email information that I have been sending to her doctors in the bay area.

It has been a very difficult time for all of Dar’s family and again I am totally exhausted but things are looking up and we expect that there will be no permanent damage but it might take a bit of time to get Dar back to her previous level. Your continued prayers will go a long way toward that recovery.

I will try to put the emails in order so as to give you the best order of what has been going on. Here goes,

Good evening all,

As of this evening Dar's fever is back to normal, in fact it has been all day.

After discussion with Dr Park it was decided to NOT turn the pump up but rather treat Dar's spastic leg movements with Dantrium twice daily. I just called and her fever is still normal and the Dantrium is beginning to take affect. She is resting more comfortably. The choice to go Dantrium was made over turning the pump up so we might be able to better assist her breathing and hopefully get Dar off the vent quicker. It is my understanding that Dantrium does not have as much impact upon the repertory system as the Baclofen might.

Dar has been cleared for a head MRI tomorrow with a special team of medical personnel as she is still on the vent

Saturday morning there was a staffing change for the next week. Dr O’Brien, neurologist is now overseeing Dar's neuro needs and he has shed new light, concerns and thoughts as to what maybe going on. He is wanting the MRI because he wants answers as to why she had the "brain bleed" and is there something still going on. We have had Dr O’Brien before and he impressed me highly with his manner and concern, he remembers Dar well and wants answers to her current condition. He is not ruling out that we may have to have a lumbar puncture to rule out meningitis, or that there is still something going on in the brain causing problems. First and foremost is Dar's safety for the MRI and if there is to be a lumbar puncture

It is my plan to inform Dr Dawson of our current situation and make him aware that his input regarding the pump may be invaluable soon. Dar is showing symptoms of both "over and under dosing" of the pump.

Dr D, Dar was approved by insurance to return to CM but I don't know when that will be, I hope and pray that we will not have or find reason to remove the pump.

The Dilantin is doing its job, Keppra dose has been increased, her last EEG showed no activity, and we are now giving her Dantrium to decrease spastisity and aide her breathing so we might get her off the vent soon. Primaxin being given for her nasty UTI, and should be done soon.

As of this evening that's where we are. I hope to be able to give you a report regarding the MRI as soon as it becomes available and I speak with DR O’Brien tomorrow.

Thank you to all of you for your help with our " lil angel ".

Danny

Yesterday’s email to doctors below,

Afternoon doctors,

Dar successfully made it through the MRI yesterday, after a very long delay it was confirmed that the Baclofen pump reset itself and was working correctly.

After a couple hours fluid was extracted from the pump to send to the lab for testing to eliminate the possibility of meningitis.

This morning we got the results of the MRI; it showed nothing of significant concern that needed attention. It did show the "bleed" but appeared to be over, no change/difference from that of the CT and CT angiogram.

The in house labs of the spinal fluid were/ are negative for meningitis. We are still waiting for results of labs sent out of house.

Dar is still running a slight fever but has been on spontaneous breathing with the "vent" as back up since 10:00 am this morning. She will return to positive pressure at 6:00 pm this evening for evening and overnight rest. Tomorrow they will repeat today’s procedure.

I spoke with Dr Dawson at length and he feels that if we still have "neuro" concerns that we should consider UC Davis where they can address both the pump and Dar's "neurological" needs.

When the time is right for Dar to transfer to a SNF, be it from Davis or Chico, CareMeridian in his opinion is the "smart" choice. This way she will benefit from having both himself and you doctor Doherty collectively working on Dar's behalf.

Today is Dar's birthday and being the "selfless" person she is, I'm the one that got the birthday present. Today for the first time since the seizures Dar is not only breathing on her own but is also starting to follow some simple requests. She opened her mouth when asked to take her temp, will go to the "neutral" position to begin a question if her mouth is open, knows her name and will keep her mouth closed (no) till the correct name is said, to follow with opening her mouth and attempt to say yes. She will blink and close her eyes when asked and tries to "scrunch" tightly when asked.

As I said, her birthday and I get the present, so like her to not be selfish.

Dr Dawson does not recommend playing with the pump at this time till Dar is stronger.

That's what I have to date if you have suggestions or concerns please let me know.

As always we are forever grateful to all of you.