Tuesday, February 24, 2015

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.


Wednesday, February 4, 2015

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.


Wednesday, January 28, 2015

homeward bound

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

Monday, January 26, 2015

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.


Friday, January 23, 2015

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.


Tuesday, January 20, 2015

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.


Sunday, January 18, 2015

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.

Friday, January 16, 2015


Jerry was extubated about 15 minutes ago, so far so good. One hurdle down, next get feeding tube out, get blood pressure and fevers under control. We are inching closer to going home.


Thursday, January 15, 2015


Your in the right spot if your looking for Jerry updates, somehow I changed the look of the blog by accident, I'm super bummed, I can't figure out how to get it back, the old template is no longer available. I like the old look better :-(

Set Back

I'm feeling defeated, I don't even want to think about how Jerry's feeling right now, this is all so frustrating. Jerry's breathing test began a little before 8:30 am, he started strong he was breathing on his own comfortably, the pressure test went well, his secretions were down. Doctors were beginning to talk about extubating today, all they needed was one last assurance, do a blood draw and check the CO2 levels in his blood, if all came back good it was a go, pull the tubes and get him off the vent. Jerry's nurse went on brake before she had a chance to do the blood draw, in my heart I felt like every minute counts, I was afraid something would happen while she was gone that would delay the extubation. I just wanted the blood drawn and sent off now so the results would come back faster before something else happened. I began to get anxious so I asked one of the other nurses to do the draw, while she was looking at his records Jerry's nurse came back and was very accommodating to do the draw right away. The results of the blood draw were expected to take about 15 minutes and then low and behold the set back reared it's ugly head. Jerry's been running a fever that has gone as high as 103.4 but for the most part is been in the 101 range, it comes and goes but has not peaked that high for a few days. Jerry's temperature climbed to the 103 range and within 15 minutes he was at 103.6. Jerry's CO2 results came back perfect but at this point it didn't matter, his temperature trumped ...game over, extubation called off, try again tomorrow. Day 7 in the ICU, it's so discouraging and so heart breaking watching Jerry struggle to communicate with all the crap down his throat. The mystery fever that just won't go away or tell us why it's here, it just rears it's ugly head at the most inopportune time. Jerry is on two very heavy IV antibiotics and has been for the past week however it hasn't seemed to kill the bug that ails him. Despite the efforts of he doctors they cannot seem to pin point the source of the infection. The doctor has called for the infectious disease team to come and assess the situation. So now we wait and pray tomorrow will be extubation day.


Wednesday, January 14, 2015


Just a quick update to say not much has changed. Jerry's still in ICU, he's still on a ventilator and he's in and out of sedation. Jerry has to pass a series of breathing tests in order to get off the vent so they bring him out of sedation in the morning to see how long he can tolerate breathing on his own. This is pure torture for him, he wasts a lot of energy trying to communicate and is to stubborn to stick to yes no format. Yesterday Jerry began to fatigue after a 2 hour breathing trial, today he went 3.5 hours and could have gone much longer however he had to be sedated to place a larger breathing tube. As of right now he is still sedated and I don't think there will be any more testing for the day. If his breathing tests go well tomorrow morning they may remove breathing tube tomorrow provided his secretions are down. I'll update again if things change.


Monday, January 12, 2015

Ups and downs

My previous posts have been from my phone and since I'm not a huge texter they were brief, now that I have my laptop I'll try to  be more thorough. There have been ups and downs and it's been somewhat of a roller coaster.

Jerry's surgery to reconstruct his C Spine went very well, his surgeon was very pleased with the results. The surgery originally was expected to take about 12 hours but ended up taking 15 hours. There were no complications it just took much longer than expected. The surgery started with a halo placement and consisted of 3 phases:

Phase 1 (Posterior)
Removal of hardware
C5-C6, C6-C7 Osteotomies
C2 to T4 Screws and rods placed

In layman's terms this means access the spine from the back remove the hardware that was placed in 2009, cut apart the bone and fusion of C5,6,7 then place the new rods and screws.

Phase 2 (Anterior)
Removal of plate
C5-C6, C6-C7 Osteotomies
C6 Corpectomy
Instrumentation fusion

Again in simpler terms turn Jerry over and access the spine from the font, remove the plate that embedded and fused in to C2 and C6. C2 had to be partially removed, finish cutting apart the bone fusion of C5,6,7. Then completely remove C6 and insert a cage in place of C6.

Phase 3 (posterior)
fusion C2-T4

The final phase consisted of turning Jerry back over and accessing the spine from the back again and completing the fusion from C2 through T4 and removing the halo.

The Surgeon was able to free up and make room for the nerve roots from C2 to C7 as well as decompress the pinch at C7, he also removed a lot of scar tissue. The surgeon also mentioned something that he said was "Interesting", he said that Jerry's spinal sac (sac of fluid surrounding the spinal cord) pulsed which in a normal cord this would be expected however not what he would have expected with a spinal cord injury. Could it be a benefit of the stem cells? ...know way of knowing but as the doc said "Interesting".

Jerry is currently in the NICU at UCSF he remained sedated until the morning after surgery at which time he was extubated (breathing tube removed), he was so relieved to have the tubes out and it was like the voice of an angel hearing his voice and knowing his vocal cords were not damaged in the procedure. Jerry was stable Friday and even enjoyed visiting with some of his friends that are home for the holidays. Friday night Jerry began to struggle with secretions and breathing became much more labored, his blood pressure became to low requiring him to be on two blood pressure medications. The big challenge now is to keep his blood pressure stable and wean off the IV blood pressure med, he cannot leave the ICU until this happens. The blood pressure meds in conjunction with secretion meds causes Jerry's heart rate to run very high which causes anxiety and panic attacks.

Saturday things seemed to improve, Jerry was waiting for his swallow test, his secretions were under control, his pain was under control, his spirits were up. If he passed the swallow test he would of had his feeding tube removed however we never got that far. The machine used for the test was not operating and after about 40 minutes of trying to get it to function the tech decided to switch it out with another machine. After bringing the other machine the tech found that machine was not functioning either. It turns out in the whole campus there are only two machines and both were broke so after an hour and a half of messing with the equipment it was determined the test could not be done. Out of the blue Jerry began to plummet, his oxygen saturation dropped to 70 (normal should be 100) his eyes rolled to the back of his head and he became unresponsive. A team rushed in and worked to stabilize him and bring him back to consciousness, they contemplated re-intubating him at that point but determined the incident occurred because he was over medicated and he had just received a dose of medication that sent him over the edge.  He was not given the wrong dosage, the theory is that the doses were too close together and it built up in his system. He also had a build up of CO2 in his blood that contributed to the event. The doctors determined rather than re-intubate they would try forced oxygen first and it seemed to work. It looked as if he had avoided intubation which we both were so thankful for.

Jerry began having fevers on Friday and until now is still fighting it, the fever ranges from 101 to 103.4, he is up and down that range. The team began running tests to try and determine the source of the fever. It's normal to have a lower fever as the body tries to recover from surgery but not normal to fluctuate and climb so high. The doctor ordered an ultrasound on Jerry's legs and ran blood work, the results of the blood test were good, no infection present, C02 back within normal range, however the ultrasound revealed he had a DVT (blood clot in the right leg). It became a little tricky for the team to treat the DVT because he cannot be on blood thinners right now which would have been the normal course of action. The team did find a medication they felt comfortable using so Jerry is being treated at this time for the clot.

By Sunday afternoon Jerry had been awake 2 days, the team tried a few different medications to help him relax enough to sleep but nothing was working. The problem was the blood pressure medication and secretion medication were elevating his heart rate which prevented him from sleeping and caused anxiety and even panic attacks. They couldn't be to aggressive with sleep or relaxation meds because it could compromise his breathing. Jerry did manage to get about an hour sleep Sunday afternoon and had a small window where he felt OK enough to talk football with his brother, it really seemed to perk him up. Throughout the day Jerry's breathing became more and more labored and his secretions became more difficult to deal with. Jerry was very agitated throughout the night and into the morning.

Monday morning 5 am the doctors had come in to assess Jerry's breathing and weather or not to intubate, his breathing had become so labored he could no longer maintain the 98 to 100 oxygen saturation range he had been maintaining and was now struggling to maintain 90 to 95%. I think the consensus was to intubate  but before they could even prepare for it Jerry's airway obstructed and within a matter of seconds his oxygen level plummeted to 55. There was a frenzy of people running at that point, about 15 people all with different jobs. Some to clear the room, some bringing in machines, some on the phone consulting who knows who, others handling his breathing, someone giving iv meds of some sort, it was a frenzied mass  of organized chaos. Within minutes Jerry was intubated, I stood in the doorway, tears streaming down my face, praying to God to keep him safe while I watched this sequence of events unfold a thousand thoughts running through my mind in a single second. Is this it? Is he going to recover from this? If he recovers will he be ventilator dependent for life? What just happened? My knees felt as if they would buckle at any minute, I could stand no longer, I knelt to the floor and prayed "Please don't take him".

As quickly as it happened it was over, the frenzy of the room died down, "Good job team" was echoed as people slowly filed out of the room with a few people left behind to clean up and put things back in order. Jerry now intubated and sedated I held his hand telling him he's OK now, I was relieved he's now resting comfortably and stable once again but scared of what this meant for the future.

I haven't slept much in the last 5 days about 11 hours total and very broken up. Jerry was now sedated resting comfortably and I began to crash, I laid in Jerry's wheelchair and dozed off. I was out about an hour and a half when I was awoken by Jerry's spine surgeon. I'm so thankful he woke me up to talk, it gave me such a sense of relief to be able to get some of my questions answered. I was so scared that Jerry being re-intubated was an indication of the risk the surgeon warned about of being ventilator dependent for life. The surgeon assured me this incident was not that, if it was damage to the spinal cord from inflammation of surgery Jerry would not have been able to be extubated in the first place. He assured me he believes this intubation is temporary two to three days to let his body heal and rest. The plan is to keep him sedated until he is ready for extubation. The surgeon believes that Jerry may develop pneumonia, his theory is that at some point Jerry may have aspirated, blood tests now show he has an infection, his white blood cells are elevated. As of this minute x-rays don't show a pneumonia but his secretions have turned yellow. The initial testing of the sputem came back negative however it will take a few days to get the results of the culture, for now he's being treated as if he does have pneumonia with two heavy duty antibiotics.

There have been ups and downs, emotions all over the place but I'm grateful for this moment to have Jerry resting comfortably and stable.

Thank you all for continuing to keep Jerry in your thoughts and prayers, I'll post updates when I can.


Friday, January 9, 2015


Jerry has been brought out of sedation and is now awake. One of the risk factors of this surgery was swelling of the spinal cord doing permanent damage causing ventilator dependency for life. I'm so relieved to report that he is able to breath on his own and is in the process of being extubated. I had to leave his room while they remove the breathing tube, I'm  anxiously awaiting to see him. He's in a lot of pain but doing very well otherwise.


Jerry finally arrived in the ICU, after what seemed like an eternity we were finally allowed to go in and visit about 12:30 am. Jerry will remain intubated for a day or two, as long as he is intubated they will keep him sedated. He remains stable and is doing well. I was so excited and relieved to finally get to see jerry, thank you for all the prayers,  love and support. The surgeon was very pleased with the
reconstruction of Jerry's C Spine. I'm anxious for him to wake up but also scared, he will be in a great deal of pain.

Thursday, January 8, 2015

15 hours

After 15 hours of surgery the surgeon has finally emerged. The crew are finishing sewing him Up We're waiting up at the ICU for him to come up  The surgeon said everything went very well they straightened him out pretty good and he also was very interested in the fact that Jerry's spinal fluid in the sack had a pulse he said a lot of times patients with spinal cord injury don't have a pulse in the spinal sack he thought that was quite interesting

phase 2 complete

Phase 2 went longer than anticipated but was complete about 930 pm. Phase 3 is now under way.


Thank you all for keeping us in your thoughts and prayers.  The update from the OR is phase 1 went well they are beginning phase 2. He's stable and doing well.


Surgery Day

Our day started at 3 am this morning headed to UCSF for Jerry's surgery.  Jerry's been in surgery about 2 hours now and I just got the first update that things are going well.  If all goes as planned he should be out of surgery about 8:30 tonight. Please pray for Jerry throughout the day. I will post updates as I get them.