" Sorry For The Delay"

April 14, 2010

Do you remember the old phrases like, “before sun up, till long after sundown”, “not enough time in the day”, no rest for the weary”, and of course, “ go, go, go”. These are just a few of the sayings that one might call upon to describe our life at the Mardilla house since my last post.

Couple that with feelings that I have been trying to work through about who reads the blog anymore, does anyone read the blog anymore, (not many thoughts or comment left), and why do I continue to write if no one reads it.

Well I came up with this answer, regardless of who does or does not read the blog I will continue to strive to write as much as possible. I owe these thoughts and feelings to Dar; it is my hope that one day we will be able to share all of these writings together. So, that being said here is what has been happening since my last post.

As you know Dar came home on the 7th of February, we had several visits to doctors, trips in the van and just enjoyed spending time together once I got home from work.

Getting home from work by 4 and transitioning to “care taking” is what makes it difficult to write on a steady basis. Up at 3:30, get ready to start Dar’s day, off to work by 6:15, home by 4, Jamie out the door, attend to Dar’s immediate needs, household chores till 6, supper for Dar, spend time reading, speech therapy, and range of motion exercises and just having fun with Dar till 9, get ready to give meds and last meal to Dar between 9& 10, get Dar ready for bed, say prayers and then I’m ready to hit the sack. Boy how time flies.

Two weeks ago last Friday Jamie had a real scare and had to call rescue transport. We first thought that Dar maybe had had a seizure or a stroke. By the time we arrived at the Oroville Med Center, (only taken there because it is close by in the event of a stroke and meds can be administered quickly), Dar had pretty much returned to her perky self. I can’t say the same for Jamie; the event, which I will explain, scared the crap out of her.

Jamie thought that she would be making that dreaded call to her dad that momma had gone home.

What we believe happened was this: Dar took a breath of air while wearing her “speaking valve”, the valve is a one-way valve, in but not out. We believe that at the same time she took that breath of air her vocal cords totally closed and Dar was not able to exhale through her mouth and nose as she normally does. Because we have been turning off Dar’s pulse ox during the day and only using it at night, Jamie did not quickly realize what was happening, because things happened so quickly and Dar could only breath in and not exhale, as a result she filled her lungs to capacity and then proceeded to “crash” and her O2 sats plummeted. As quickly as it started it was over, but not before really scaring Jamiesue. By the time I arrived rescue had Dar on a bit of oxygen and her vitals were good. We only went to Oroville Med Center because time is crucial to receive meds in the event that Dar had indeed had a stroke.

By the time we hit the ER Dar was back to here normal perky self and showing off for everyone. They took blood and the results showed that Dar’s liver enzymes were elevated. The decision was made to admit Dar and have a sonogram the next morning before returning home.

So I don’t belabor all the events of our stay just let me say that because of the hospital not knowing Dar’s norm or her regular routines or statistics, over the next few hours from Friday night and Saturday afternoon put Dar on oxygen at too high a rate and basically drove her CO2 way too high. By Saturday afternoon when I figured out what was going on and demanded an Arterial Blood Gas Draw, it was confirmed that Dar was double the amount of CO2 that she normally has in her blood stream.

Off we went to the ICU, change her trach to a cuff trach, put on the ventilator for a day and Dar began to return to her normal self.

Yes, I was hot, boiling hot, but I have to say that the doctor of record spoke with me for a very long time and apologized for the mess up and that if I would consider leaving Dar in their care, (I was in process to have Dar moved to Enloe), all the staff would make every effort to learn from me and what we have and can bring to the table regarding Dar’s care and recovery. I was assured that all staff would “play nice in the sandbox”, and learn from us the things that we have learned over the last 16 months.

It was a tough decision on my part to have Dar stay but I made it based on 1 simple thought. If Dar needed to come to the closest facility sometime in the future it would be Oroville Med Center, based simply on that, they, (the hospital) needs to get and learn a base line for Dar. With that I agreed to have her stay, but if there was another screw up, we were out of there and I would not hesitate to step up my game.

The remainder of our stay was well documented and “reports” were very clear as to Dar’s abilities and or special needs. Over the next few days everyone learned how “alert, smart, perky and totally with it Darlene is”.

I took advantage of a conversation with Dr Skau, (whom I have always liked and respected), that Dar might benefit from a Porta Cath, a small catheter placed in a small pocket on her right side just above the breast bone. This port will allow meds and blood draws to be done without having to search so hard and make things so difficult for Dar. As you remember, she has had 3 pick lines and each of them has been very difficult because her veins are so small. The procedure was a total success and Dr Skau even replaced Dar’s Peg Tube for us. I really like this doctor.

We brought Dar home 1 week ago tomorrow and she is getting stronger and returning back to her perky self on a daily basis. Friday after we got home Dar ran a small fever for part of the day and Home Health was there at the house and talked with Dr. Darwin and she started Dar on a round of antibiotics we already had at the house just for this type of issue. By Saturday when Dar’s folks were here her fever was gone. She slept most of that day and by Sunday she was awake all day. Her folks and sister had a good time visiting and left midday on Sunday. Home health returned yesterday for a follow up visit and felt that Dar’s lungs sounded much better and she was doing well. Home health will again be back this Friday.

Well that pretty well gets you caught up, again I apologize for the delay in posts but I will endeavor to be more consistent, I just have a simple request from you the readers, a word or thought of encouragement is always appreciated by Darlene and yes Jamiesue, Margie and myself.

Thank you for hanging in, thank you for your prayers, and we love you all,

Love from all of us,

Dar, Danny, Jamiesue