Status |
Posted by John
Sep
02
2010
I received a call from Athena’s care funding source and they will be approving ongoing care on a week by week basis. Providence isn’t too happy that they weren’t paid for 2 weeks of acute care and only given a $45 per day admin fee after the first two weeks. (paperwork not filed in time) It’s becoming increasingly more difficult to get the care Athena needs and deserves. This adversarial relationship between care providers and insurance companies is ruining our health care system and putting patients at risk.
I was told today that Providence has down graded the goals we all agreed on and may want to discharge her next week. Prior to the funding issues, Athena was making great progress since she arrived at Providence (and she has) but now with all the extra hassle to get paid the story is changing. All hope of Athena coming home seems to have been lost. Giving up on Athena now will revert all the progress she has made to date. This was Athena’s last chance at life we all take for granted and seeing her daughter. Her body will never be able to recover if Athena is put in a nursing home where only basic care is provided.
News |
Posted by John
Sep
01
2010
We think of external microbes as our worst enemy during an outbreak of influenza or bronchitis but our own immune system is potentially more lethal. When our body detects foreign microorganisms indicating an infection, our body might respond by over-protecting the site of infection. The body may race so many antibodies to the infection site that they collect in a cytokine storm. When the infection is in the lungs, for example, a cytokine storm can potentially block airways and result in suffocation. Medical researchers have identified the causes and stages of the cytokine storm and are working on treatments to weaken an overactive immune response.
For reasons not completely known, too many immune cells can be sent to the infection site. This happens when a particular type of molecule in the body, known as cytokines, activate the immune cells at the infection site and cause more immune cells to flood the site of infection. This propagates what is referred to as a cytokine storm where far too many immune cells are caught in an endless loop of calling more and more immune cells to fight the infection. The cytokine storm ends up inflaming the tissue surrounding the infection
Let’s hope the current research being done with controlling an overactive immune response will be in time for the upcoming flu season. In Athena’s case, her body’s reaction to H1N1 and it’s effort to protect her almost killed her. Unfortunately her immune system was firing blanks trying to fight the virus.
Athena’s chest x-ray when she arrived at Harborview. The white cloudy area shows the extent of the storm.
Normal chest x-ray of a healthy person.
Status |
Posted by John
Aug
30
2010
Athena’s recreational therapist and I took her out to the bluff overlooking the sound and Naval ship yard. It’s about a 1/2 mile wheelchair trip from the hospital over some bumpy terrain but Athena was able to maintain her posture throughout the trip.
Status |
Posted by John
Aug
29
2010
Athena’s funding to continue her therapy at Providence was rejected. It seems Athena’s chance she has been working so hard for was taken away. It was determined (ignoring Providence’s recommendations) Athena be put in a nursing home with maintenance level care for the rest of her life rather than giving her the care she needs now to come home and be a mother to Madison. Athena didn’t win the loto, she is a H1N1 victim. She isn’t interested in her care benefits being distributed to a nursing home over the next 20 years.
I would like to thank Athena’s attorney for getting the petition for guardianship dropped and allowing Athena a voice. Athena is filing an appeal to get her plan reinstated. Athena appointed me as her DPOA and I will be helping her through the process of the appeal. This will allow Athena to continue to get the care she needs till a hearing date is set. If you would like to share your thoughts about giving up on Athena when she is making such great progress, please leave a comment.
Athena is enjoying her new freedom of ordering anything she wants from the menu. She is no longer a member of the swallow group and can sit at any table she wants. Athena is speaking words and phrases more frequently and it’s starting to become more natural for her. The PT/OT team is making good progress with Athena’s upper body strength. On both of her outings she was able to maintain normal posture and has regained her strength in her neck to eliminate the bobbing and her head falling forward.
Athena has also made great progress with her meds. They are dosed on a PRN basis and with no narcotics being scheduled. Athena hasn’t had any morphine in 3 days. If Athena continues to improved at the current rate, the next four weeks her doctor has asked for should get Athena to the point where the bed isn’t the central point of her life anymore.
Days in the hospital: 328
Athena had a great time on her outing to Dairy Queen. This was the first time she has been mobile without being in an ambulance. Providence has a nice lift enabled van for taking patients on outings. Athena’s speech therapist came along and upgraded Athena from ground food to a normal diet. Athena had a mushroom Swiss cheese burger, fries and a chocolate shake.
Status |
Posted by John
Aug
25
2010
Athena was working with her physical therapist doing bedside upper body control therapy. Athena beat her old record and was able to keep her balance for 15 seconds on her own. Athena got a communications board today that has key phases and she selected each phrased on the board asked of her. It’s a bit easier then the eTriliquest program that required a mouse.
The therapy team and her doctor have done an outstanding job these last four weeks and I couldn’t be happier with the results. Her Doctor and the therapy team is advocating strongly for Athena to remain at Providence to obtain the goals she has been working so hard on.
Recreational therapy and I took Athena out to the waterfront. She had a great time seeing the aircraft carrier that was in dock. Athena held her head up the whole 1/2 mile wheelchair trip. I brought the camera but got to talking to her therapist and forgot to take a picture to share. Athena is scheduled for an outing to Dairy Queen this Saturday.
Athena eats her meals in the dinning room with the other patients.
Status |
Posted by John
Aug
24
2010
Athena’s initial 4 week acute physical rehab program is due to expire on the 28th of August. Providence has asked for another 4 weeks to achieve the basic skills Athena needs to eat, use a toilet and allow me to work with her to build on the skills she has achieved. The staff at Providence has been wonderful and have made great progress getting Athena to where she is today. Please say a prayer that Athena will get approved for the the badly needed 4 more weeks to give her the chance she has been waiting for all these months.
Status |
Posted by John
Aug
22
2010
The speech therapist that I planned to meet with this morning canceled so we are going to have to try the speaking program with the special mouse another time.
I was trying to cheer up Athena this morning and got her to smile. I got Athena a stuffed turtle from Starbucks that she likes to hold and helps getting her hands working. I was being reminded by Athena’s nurse about isolation protocol a couple times today so I put an infant (Disney) mask on the turtle which made Athena laugh.
Status |
Posted by John
Aug
21
2010
Athena and the speech therapist evaluated a vision based response system to help her communicate till she is able to talk. It involves a lot of paperwork and she probably wouldn’t see it till she leaves Providence. I found a speech program (Etriloquist) on the internet that allows Athena to click on phrases and the laptop would speak the phrase. Athena is having a problem with controlling my mouse and tends to over click. We are going to try again in the morning as speech has an over sized roller ball mouse and is easier to click.
Athena is still working on getting her dexterity and muscles to react in conjunction with what her mind is telling her limbs to do. It’s a classic case of if you don’t use it, you lose it. One thing Athena hasn’t lost is her sense of humor. She doesn’t have any problems with laughing and crying. Words are harder to get out.
Status |
Posted by John
Aug
18
2010
I was able to bring Athena a strawberry and banana milkshake with whip cream. Athena is now having three meals a day.
