Back to Normal

Things are finally getting back to normal in our house after a hellish six weeks, Jerry has almost recovered fully and is feeling a little more like his old self.  It's going to take some time for Jerry to gain what he's lost over the last six weeks, his muscles have lost some tone, his tolerance for being in his wheelchair has gone way down, his blood pressure drops more now then ever and the FES bike causes his heart to race after 10 minutes.  These are disappointing set backs that should improve over time.  The good news is Jerry started back at SCI-FIT this week getting the much needed workouts with an amazing crew, it's good to be back but I'm still hating the drive. More good news, Jerry's right arm is getting stronger, he can move his right arm as much as his left arm now, the only difference is the right arm fatigues quicker.   

That's all for now, I have to get Jerry ready, it's a SCI-FIT day.

God Bless!

Katie

T-Shirts Anyone?

We are brainstorming ideas of ways to generate more money for China and thought t-shirts might be good.  Before we go and put out a lot of money to have shirts made we thought we would poll you all to determine if there's an interest.  The t-shirts would be $20 which includes shipping and would have the logo on the front breast and maybe the website in the back bottom as seen below.  If you think you would purchase a t-shirt could your leave a comment answering the questions below.  Answering the questions does not commit you to purchasing, it will help us determine if there's enough interest to proceed as well as what colors and sizes.

1. Would you be interested in purchasing a t-shirt?
2. What color t-shirt?
3. What color logo?
4. What size would you order?
5. Do you have an interest in designing the t-shirt?

Home At Last

The ultrasound came back normal which is good news, the chest x-ray taken this morning shows no increase in fluid in the lung, more good news.  The doctors can not conclusively say the pulmonary embolism was a false positive so they will be treating Jerry with the blood thinner coumadin for another 3 months to be on the safe side. The best news of all we are home at last, hallelujah.
 
Jerry spent about 3 hours in his wheelchair today, he also attempted to ride the FES bike but was only able to tolerate about 10 minutes.  It's difficult for him to sit straight up he still has fluid in the pleura which makes it difficult for him to breath, he can't tolerate being upright for more then 10 to 15 minutes.  While we were in the hospital Dennis installed the ceiling lift over the bath tub.  After a much needed shave Jerry was able to relax in the jacuzzi tub for about an hour.  It was so nice being able to get Jerry in the tub by myself with very little physical exertion.  Jerry is a happy camper resting in his own bed, watching football.  

Good to be home!

Katie

Diagnosis Confusion....

The situation with Jerry is getting a bit confusing, as much as I like the doctors I have to wonder if they're qualified to solve this puzzle.  We have 3 pulmonologists, 1 neuro specialist, and 1 hospitalist on the case all of which are scratching their heads, saying nothing about Jerry's case is textbook. Their diagnosis is just not adding up and they're beginning to question themselves with regards to the diagnosis that they've made thus far.  Two of the doctors have explained to me how they came to the conclusion of a pulmonary embolism, all of which is very detailed but made sense why they would come to the conclusion of PE. I don't have the energy to write it all up, the bottom line is now the doctors are thinking the original diagnosis of PE and the diagnosis of lung infarct may be wrong, it may actually have just been a pneumonia all along.  They want to run a series of tests to try and determine weather or not Jerry actually had an embolism so they can determine weather or not he needs to continue taking coumadin. This is all kinda good news bad news, the bad news being misdiagnosed causing worry and stress and Jerry taking a dangerous drug unnecessarily, the good news being pneumonia is a much less serious diagnoses and recovery then pulmonary embolism and lung infarct. So here we are in the waiting game, waiting for them to come up with an accurate diagnosis.

Jerry had another chest x-ray yesterday which showed no change in regards to the amount of fluid present in the pleura, this is good news he's not continuing to build fluid. Jerry is scheduled for another chest x-ray on Sunday and possibly an ultrasound of his arms, legs and heart today.  That's all for now, we'll keep you posted.

xoxoxo

Katie

Update

It looks like we will be staying for awhile at Dominican. Jerry had a chest x-ray this morning at 6am, a little early for us late risers. The x-ray shows the pleural effusion is again taking on fluid in addition the pulmonologist now believes that the lung infarct was not an infarct at all because an infarct would not cause so much fluid.  The doctor believes that what they thought to be an infarct is actually a pneumonia. The plan is to do another chest x-ray tomorrow, if the fluid increases again then the doctor will do another thorasentesis (remove the fluid) with the assist of an ultrasound.  The ultrasound will assist the doc in finding the precise spot to insert the drain.

If you've been following along with what's been going on then you should be familiar with Jerry's INR.  If you remember the INR should be between 2 and 3, however last week the INR was 4.6.  This means that Jerry's dosage of coumadin was way to high.  Jerry was taken off the coumaden to bring the INR down and now his INR level is 1.7, so starts the process over of finding the right medication dosage for him.  Jerry goes back on coumadin today and won't be released until his INR level is between 2 & 3.  Between the INR and monitoring the activity in the lung we are expected to be here at least through Sunday.  :(

I'll keep you posted,

Katie

Back in the Hospital

We're back to our tiny little closet, sure haven't missed it, by that sarcasm I mean Jerry was admitted back into Dominican Hospital.  We'll start with the good news the MRI results showed no evidence of a Syrinx, thanks for all the prayers.

Monday started with getting Jerry through the morning routine and ready to go to Santa Cruz for the MRI.  The weekend was hard for Jerry his pain increasing and not being managed so well with the pain medication.  Jerry was having a difficult time sitting upright for more than 2 minutes, he couldn't breath and was close to passing out when he tried.  After getting through the MRI we headed to see Jerry's doctor who was able to ease our mind with regards to the syrinx but it was a rather upsetting visit.  While viewing the MRI with the doc we were able to see the damaged area of Jerry's spinal cord.  I was shocked to see the difference in size between the healthy cord and the damaged cord.  The doc explained that the spinal cord atrophied just like muscles can atrophy, I didn't know that could happen and seeing it on film was rather shocking.  I couldn't contain the tears as hard as I tried, even writing this the tears return. It's gonna take a miracle, so please keep Jerry in your prayers.

Jerry's doctor was concerned so he sent us to the lab for some blood tests and on to Radiology for another chest x-ray.  The chest x-ray taken Monday was significantly different form the x-ray taken 4 days prior so Jerry was admitted once again to the hospital.  The x-ray showed a significant amount of fluid in Jerry's right lung the lung that had the embolism.  The official diagnosis is "Pleural Effusion" you can click on that for the clinical definition. The simple definition of pleural effusion is an accumulation of fluid between the layers of tissue that line the lungs and chest cavity.  Thoracentesis is the procedure the pulmonologist used to remove the fluid from Jerry today.  I was able to be present for the procedure and I gotta say that needle was gnarly. I was astounded with the amount of fluid they drew out, 1 1/2 liters and they didn't even get all of it. Another chest x-ray was performed directly following the thoracentesis which showed some fluid remains.  My understanding is they will do another chest x-ray in a couple days to determine if the fluid is building again.
The cause of the pleural effusion is yet to be determined however the pulmonologist believes the lung infarct developed an infection.  The good news is Jerry feels so much better with minimal pain after the removal of the fluid.

So here we are again anxiously awaiting to go home, desperate to get Jerry back to health, we are hoping to be released by Thursday. 

Thank you everyone for keeping Jerry in your prayers, we appreciate the support and warm wishes.

Love to all,

Katie

Somethings Not Right

 We were so ready to be released from the hospital on Friday last week, some nurses were great, others not so much.  The room was about the size of a utility closet, the hospital didn't have adequate supplies for Jerry's care, which had to be brought in from home. It's just so much easier to care for him at home so it was a blessing when he was released or so we thought.  Jerry has not been doing so well since diagnosed with PE (Pulmonary Embolism), his pain is not being managed so well at home.  The first four days at home Jerry did well, he had to double up on pain meds but for the most part he felt comfortable as long as he was taking his meds. Tuesdays blood test showed Jerry's INR level to be at 4.6, if you remember it's supposed to be between 2 and 3.  Jerry was taken off the blood thinning medication Coumadin for a few days until his INR drops back into range. Wednesday things started to go down hill with pain management and difficulty taking deep breaths, by Wednesday night a fever set in.  After consulting with Jerry's doctor Wednesday night we were instructed to be at the hospital in the morning for a series of tests which included a chest x-ray, x-rays of both shoulders and an MRI of his C-Spine. Unfortunately the MRI machine was broke so we will be getting the MRI on Monday, the shoulder x-rays came back normal however the chest x-ray shows a "lung infarct", you can click that for a clinical definition.  A lung infarct basically means that the lung tissue that the clot attached itself to died from lack of oxygen and blood flow. The doctor believes that the pain in Jerry's right arm and shoulder are a result of the clot and infarct however he wants an MRI to rule out a "Syrinx". In layman's terms a syrinx is a cavity that develops in the spinal cord and has spinal fluid filter through it. The syrinx can expand and put pressure on nerves or damage the spinal cord. Jerry's symptoms are consistent with a syrinx, I pray that it's not, I want to get to the bottom of the problem but I don't want it to be serious. If we cannot manage Jerry's pain at home then his doctor is going to admit him back to the hospital and we so don't want to do that.  Jerry's been in bed for two days with limited activity to avoid a flare up in the pain, sitting in his wheel chair only intensifies the pain.  It's sort of a catch 22, being idle in bed makes him feel a little better but puts him at a higher risk of pneumonia.

On a positive note Jerry was able to use the new FES bike three times since he got home from the hospital last Friday.  I'm excited for Jerry to be able to get into a normal routine using the FES bike, we just need to get him healthy first.

I feel a little sad, missing my son Josh, he moved to San Diego on Tuesday.  Josh will be attending UCSD to work on his masters for civil engineering.  I'm very proud of him but will miss him all the same.  Dennis left on Tuesday for San Diego to help Josh move and didn't get home until late Friday night. It was a little rough not having much help with Jer especially when the power went out Thursday morning at 3 am.  Jerry has an alternating air pressure mattress which requires electricity, without it the mattress is as flat as a pancake.  I waited a few minutes hoping the power would come back on but decided I had to get Jerry off that mattress, so I loaded him in the Hoyer lift and transported him into my bed. Just as soon as I got Jerry settled in my bed the power came back on and seeing as how Jerry was not to thrilled about sleeping in my bed and would be more comfortable in his own bed, I loaded him back in the Hoyer and transported him back to his own bed.  Needless to say I think I got about 4 hours of very broken up sleep, I'm still feeling a little tired. It's good to have Big D home.

That's all for now, I'll keep you posted about the MRI and doctor appointment on Monday.

Oh by the way, great news we are now close to raising $8,000 for the China fund. I added an image so you can watch the thermometer climb on the top right corner. 


God Bless!

Katie