Settled Down

Things have settled down and fallen into routine, a routine I'm not quiet used to. I'm used to running Jerry to several appointments a week, always busy, never enough time in the day. Now there is nothing but time, with nowhere to have to be and nothing to have to do. There's too much time to contemplate the gravity of this situation, to feel the sadness, to long for a better life for Jerry. It's time to get back to life.

Jerry has been doing well, the worst is behind us however he does still seem to have a lot of pain which I had hoped would have subsided by now. March will hopefully bring better days as we begin getting back to the routine of going to acupuncture, consoling and physical therapy in Pleasanton.

Katie

Rocky Road

Being home has been great but if I'm being honest it's not been easy, there have been challenges we've overcome and challenges we're still working on. When Jerry was released from UCSF he was not cleared for a regular diet because he has a weak swallow, he's not cleared to drink thin liquids like water, his liquids must be nectar thick. On Friday evening I was repositioning Jerry and he aspirated on his saliva, I tried for about 20 minutes to clear the secretions that were blocking his airway by deep suctioning through the nose and down the throat. Jerry's oxygen saturation level was holding between 88 and 93 as he continued to struggle with the secretions, then suddenly it dropped rapidly to 80%, I knew it was time to call for help. The Boulder Creek fire department was the first to arrive followed by the EMT's, I was hoping that they would have more advance skills or equipment to help clear Jerry's airway to avoid a trip to the ER. I soon learned that they are not allowed to deep suction but they could provide breathing treatment and oxygen. So the medics gave the treatment and I did the suctioning, we worked together for about 40 minutes to try and clear the secretions to no avail. Jerry's oxygen level was at 90% with oxygen when the oxygen was removed it would drop into the 80's. It became apparent we would spend the evening in the ER, the fear was that it would turn into days. Thank God the respiratory therapist was able to clear the secretions with a machine called cough assist, we were able to come home about 3 am. I've been working on getting the cough assist machine and oxygen for home, I think the trip to the hospital could have been avoided if I had those.

Since Jerry had surgery he has had fevers, a lot of anxiety and panic attacks. I feel like the panic attacks and anxiety is getting worse. He's taking a medication for it but it seems to be getting less effective. I think our biggest challenge now is pain management, fever, and anxiety and trouble sleeping, the secretions seem to be gone, for now his respiratory is stable. I look forward to the day when Jerry is pain free, anxiety free and fever free, until then we ride the rocky road and hope the bumps get fewer.

Katie

homeward bound

Jerry was released we are just now leaving San Francisco, can't wait to get home.

Out of ICU

Jerry was finally released from the ICU this evening and moved to the step down unit on the 14th floor. Lets just say we had it made in the ICU with the one to one patient to nurse ratio. The quality of care is no Bueno on the 14th floor. I can't wait to go home, if all goes well Jerry may be discharged Tuesday. Jerry is doing so much better, the next hurdle is getting back on regular food and have the feeding tube pulled. Almost home.

Katie

Getting Closer

I'm beginning to see the light at the end of the tunnel, there's a good chance we could be home by Monday. Jerry is doing significantly better, his secretions have been far more manageable, he's been weaned off the IV blood pressure medication and his temperature is no longer spiking in the 103 range. However he is still having fevers in the 100 range but I believe that won't be a factor for getting out of the ICU. The team is working on releasing Jerry from ICU hopefully by tomorrow, Jerry will likely be here an additional two days after getting out of the ICU, it can't come soon enough for me, I don't know if I can last much longer, sleeping in Jerry's wheelchair. The last two weeks is beginning to take it's toll on my back and hips, I long for the comfort of my own bed. I can't wait to get home and return to a normal routine, it's getting closer.

Katie

Two Steps Forward One Step Back

Two days ago Jerry had a really good day, I felt the worst was behind us and he had finally gotten over the hump. Yesterday he took a step back, he had been cleared for eating puree however his secretions were so bad food was put on hold. Jerry struggled all morning to clear his airway of the secretions, he seemed to clear up a little in the afternoon and then began to struggle again. The team of doctors stood outside his room and discussed the game plan. I over heard one of the doctors say lets give him awhile longer to work it out but we need to be prepared to intubate, maybe we should have the airway cart here just in case. My heart sank, I feared that re-intubating meant there was a good chance he would be trached soon after, that was his experience two years ago and it took him ten weeks to get off the ventilator. Jerry has respiratory treatments around the clock, one of the treatments is wearing a vest that fills up with air and does a sort of pounding vibration on his torso to help loosen the secretions. I think these treatments are begging to pay off, today Jerry's secretions are down again. The day started off a little rough with his airway partially blocked the respiratory therapist worked with Jerry for about an hour at 5 this morning but finally cleared the air way enough for him to not labor so hard with his breathing. The rest of the day has been really good. Dare I say he may be over the hump ...I'm afraid to get my hopes up.

Katie

A Good Day

Today was a good day, Jerry is doing so much better, it was the first time since all this started that I feel like there is real improvement. The secretions are way down, his voice is returning and he finally seems to be over the hump.  Jerry's temperature and blood pressure continue to be a struggle the next hurdle to get through to put us a little closer to going home. Speech therapy came today and gave Jerry the swallow test to clear him for eating, he now can have puree food starting tomorrow. Jerry had lots of visitors today, he enjoyed them so much he didn't want them to leave. Thank you Stephani and Rachel for the awesome gift it was so thoughtful you really made Jerry's day he was excited you guys came to visit. Thank you Trish for the meals and snacks your a great cook, it was nice to have a home cooked meal. Thanks Janea, Pepe, Jessica and Parker, Jerry really enjoyed visiting with you.