New Med Tomorrow AM

Tomorrow morning we begin Dar's "activity agent" medication, Dr. Doherty tells me we should begin to see change in her "mood/personality" in a couple of days. Only real "rare" side affect is "overstimuli", Dar will be on very low dose as she is so tiny. Everyone reacts different so I will be keeping a close eye. I hope this will help her "sparkle", stay tuned................

April 30 2010
0415 Hours


Trailer pad is now complete, upper and lower pads are backfilled, trailer is spotted, pop out is out, damn near spot on level, electricity hooked up little bit of clean-up to do, bring the boat home from Elby's and we are ready for overnight guests for Dar. Dan Heilman you "ROCK", your the man, Mark Solis, Lake Oroville Hardware, thank you for the "wall" material, Scotty, thanks for your help.





Yesterday’s trip to see Dr Darwin was short and sweeet, Jamie had trouble with the chair lift so she arrived late for Dar’s appointment by about 20 minutes. Evidently Dr Darwin was pushing her schedule all day so Dar’s visit was short. We did come away with a couple 90 scripts for medication, one of which I alluded to the other day.





Dr Doherty believevs that, yes Dar might be an emotional funk, a little depression, Dr Darwin is of the opinion that this is also a possibility. We have been watching Dar ever since she came home in early April. She does does not seem like she feels 100 per cent. She seems to have lost a bit her her perk, the snap in her step if you will. Just not quite herself.





I have been emailing Dr Doherty all week and although we cannot be definate we can take some steps that might help just a little bit.





I have a prescription for a new medication that Dr Doherty wants Dar to take in the mornings. It is called Amantadine, so far my research is showing me that this is not so much a medication for depression as much as it is more for acting as a “activating agent” specifically working with the dopamine produced in the body. I am still doing my homework and also at the same time allowing Dar to continue to heal and get stronger on her own.





We also started a new breathing treatment yesterday that added to her Albeuteral will possibly help beg off some of these respratory issues.





Well time to get Dar’s day started with morning meds and such. I will try to post again later today, maybe some pictures of the wall and pads, take car and enjoy your Friday leading into a beautiful weekend.





Love,
Dar/Danny/Jamiesue

"Not quite 7 pounds"

Yesterday's fishing was pretty darn good, wind blew like a big dawg but Elby and I caught fish. Dar predicted a 7 pounder for me, she missed it by a couple of pounds. Lots of sun and good fishing. Dar was outside much of the day with Margie, had a good time. Still quiet, don't know if there is something wrong or not, e...mail to Dr D sent today, wait to see what she says, stay tuned.

I am wondering if Dar is in an emotional funk. Have asked Dr D's opinion about it. Maybe an adjustment to her Zoloft is in order. Dar is just not her perky self. Also may just be that she still does not feel well. She is very alert, co-operates with requests follows instructions but is just to quiet.

Hope you all had a great weekend, it is getting ready to rain here. The "cap"" blocks for the retaining wall were supposed to be here today but as yet they have not been delivered. I was hoping to have them on tonight so Dan could do the finish tractor work Thursday if it is not raining. Guess I will have to make a call tomorrow.

Will keep you informed as to what Dr. D has to say.

Love to all,

Dar/Danny/Jamiesue

Hangin with the "lil whipper" today, watching/listening to "chick flicks" on the tube, Dar is doing well, still a bit quiet but we have been working on all her vocal/swallowing excercises. Letting the fresh air in through the front door, it has been a peaceful day with my "angel". Taking our boat to the lake tomorrow, ...see if Elby and I can catch a boat load of bass. It's a beautiful day, get out and enjoy, God Bless


Dar/Danny/Jamiesue

04-23-2010

Home Health was out today, Dar's lungs are clear, all in all she looks really good.

Next Friday the nurse will flush Dar's porta cath for the first time. Supplies were delivered today. Respitory Therapy is going to come out on the 28th form Sierra Health Supplies just to answer any questions we might have regarding Dar's trach and suctioning and the like. A courtesy of Sierra Health.

Supposed to have a visit with Dr Verma for a follow up since Dar's return home on the 8th. The 29th we are off to see Dr Darwin, Dar's Primary for a routine check up.

Waiting to hear why we have not seen anything of PT and Ot since we returned home. They must be busy. Hoping to hear of the progress on Dar's specialty splints for her arms and hands. ***** moments ago I just heard from OT, we have a plan, more to follow in the days ahead,. Will fill you in next week.

Margie is off tomorrow so she can bring her mom home from her recent stay in a care facility, they are all looking forward to that. Margie has found a live in aide to help her mom.

I plan on a fishing day with Elby Sunday when Margie returns. Looking forward to that in a big way. Dar tells me I'm gonna catch a 7 lbs bass, that would be sweet.

Tonight Dar and I just plan on kickin back and enjoy the birds chirping in the front yard, a little light reading, and just having a good time together. A good night sleep for both of us would be really sweet.

We did a sleep study on Dar the other night and it is quite interesting to see what her body does during her sleep. The study records heart rate, O2 saturations in her blood, how long she might stay at a specific saturation, all kinds of information. Really interesting to read the results.

The top caps should be here Monday for the retaining wall and if the weather holds for us, Dan will be here with his small “finish tractor” on Tuesday to backfill the wall and spread the new road base. I hope to have the “finish caps” on by Monday night.

Only a little over a moth of school left and the “little kiddies” will be gone for the summer, then my real work begins. We are hoping to have our funding to begin our new gym/multipurpose room and possibly our new pre-school. If all this comes to light I will be a very busy “project manager”, in addition to all the “routine” summer work at our school.

If I were to ask a specific prayer for Darlene, it would be this. Please pray that she continue to get stronger as the weather begins to change and get warmer. Last summer in the bay area she did very, very well. In her chair everyday for several hours, outside on the deck with friends and family every weekend, out in the activity room with other residents. She was virtually busy doing something everyday. Please pray that she will get stronger and stronger as we head into the summer.

Again, thank you for your continued prayers and your faithful support. We truly appreciate it and it is much needed.

Love to all,

Dar/Danny/Jamiesue/Margie

"New Meds Doing Their Job"

Its amazing how quickly the body responds when given the correct medication. Dar is quickly returning to her "perky" ways. Jamie and Margie loaded Dar in the van and off to Enloe Rehab for botox and pump titration. Pump was not titrated until infection is more under control, will go back in two weeks, botox injections in both arms was a success. The "ladies" even stopped at the Carl's Jr drive thru for beverages.
Thank you for your prayer support.

Love ya,
Dar/Danny/Jamiesue

4-21-2010

Just learned moments ago through Enloe Hospital that the antibiotic Dar has been on for many days now is not effective for what she has. Jamie brought this up several days ago. A new medication has been ordered and I hope to have Dar on it as soon as possible. I can't wait to have this lil Angel back to her normal "scampy" self. Thank you again for all of you that have joined this journey.

Love to all,

Dar/Danny/Jamiesue

4-20-2010

Well, last night turned out to be a long night.

After geting home and learning that the doctor was going to call the house to answer some specific questions posed by Jamiesue earlier in the day I began the waiting game.

Shortly after 5:00 pm I called the office and learned they had closed for the day at 4:30. I asked to be contacted by the on call doctor as soon as possible. It was Dr Val's opinion that Dar should go to the ER

Soooooo, I made the call for transport, (we might have taken Dar ourselves had her O2 sats been better and we had portable oxygen), but we don't so off we went to Chico. Jamie had just gone off shift so Margie came down off the mountain to go with me in the van and help if we got to bring Dar home.

Test were run, blood was drawn for white bood cell count,it was normal, an arterial blood gas was drawn and it turned out that Dar's CO2 was at 70, but given all the other related parts of the test it was ok. A bit high but ok.At first there was talk by the ER doc that Dar would be admitted and sent to ICU again. When Dr Val came down to see her he felt that with a few antibiotics given while she was there, a bolace of the Prednizone, a new run of the Prednizone beginning today and a continueing round of Leviquinn, Dar could return home that night.

Shortly before we left the ER, Dar was showing a bit of her ol self, laughing when I pushed the "chuckle" button.

Dar got home by way of ambulance about midnight and Margie and Igot her ready for bed, gave her meds and dinner and it was not 30 minutes and she was off to peacefull sleep.

Jamie tells me that momma is resting peacefully and at times showing her "perky" side. As I learn more after work I will post a short note to all of you. Thank you for your continued prayers and please continue to pray that Dar will return to her "norm" as soon as possible.

Love to all,

Dar/Danny/Jamiesue

1639 hours

Update.

O2 sats have been very good all day, put her speaking valve on and she is laughing more than she has in several days. I have also learned through questions that Dar is in a bit of an emotional funk. We have talked and we will all work together to encourage and bolster her spirits. I think visitors would be a great insperation to Dar.

Ron from Lincare just left and will be filling our order for portable O2 in the event that a need arises when we are on the road. We are also going to do a sleep study with Dar's battery operated Pulse Ox. This will give Ron a definitive read on what Dar does at night and during the day in regard to O2 saturation in the blood and her sleep apnea at night. We have been busy and now I am going to take a little power nap. Did not get to bed till 2:00 am this morning and then back at it at 3:30.

Bless you all and thank You for your continued prayers. Love to all,

Dar/Danny/Jamiesue and Margie

"Four for one, three for one, two for one and one for one"

4-3-2-1, Dr. Verma has prescribed Prednizone for Dar on a
declining dosage over the next 4 days., on the way to "perkiness",
yawhooo. Will keep you posted. As of this post Dar's eyes are
looking better. Still quiet but this is a good start, hopefully
tomorrow we will have more improvement.

Love to all, talk soon

Dar/Danny/Jamiesue

Saturday
1919 Hours

Got home this afternoon from fishing about 2:30 only to have my hopes dashed that Dar was feeling better.It is so very easy to see that she does not feel well, her "perkiness" is absent, I WANT IT BACK,!!!!!!!!

Although in no real discomfort this low grade fever is just kicking her butt. Breathing is a bit labored and at times we are having to suction but there is no color to her discharge.

I have placed a call and am waiting for a return from Dr Verma to see what he thinks. Maybe he will have us start a round of Prednizone that we have in reserve for just this type occasion.

Dar and I are just hangin out together and I just gave Mav a bath since the days are longer and the weather a bit better he is spending more time outside on the hunt for critters. This dog has amazing hearing in addition to having the ability to feel where the critters are. He can track a mole or gopher clear accross the yard. He spends hours staring at the gound.

Well, gotta finish up Dar's breathing treatment, I will hopefully have beter news tomorrow for everyone. Enjoy your Sunday

Dar/Danny/Jamiesue

"Thank you"

Friday, April 16, 2010
1840 Hours

Thank you for the recent coments to my last post. They are already helping.

Dar has been struggling with a low grade fever for the last few days. She is basically doing prety well, lungs are clear, not a whole lot of suctioning but she is just not her usual self.

I hope over the next few days she will begin to feel better and return to her normal "perky"self. She is on another round of Leviquin.

Margie will be here a bit earlier than usual tomorrow so my fishing buddy Elby and I are headed to the lake to see if we can catch a bass or two.

Sunday I will journey to Chico to do the monthly shopping at Costco. Maybe visit with Lorrie and Jerry

The retaining wall that I have been working on is coming along nicely, our friend Dan Heilman will be bringing the tractor back next week to do the "finish" work on the trailer and boat parking. When all is done the trailer will be in a good place so that friends can stay and visit with Dar for a weekend.

Please pray that whatever this bug is that Dar has will leave quickly. Thank you again for your comments, it is really nice to know that you still read.

Have a great weekend all,

Love,

Dar/Danny/Jamiesue

" 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