tag:blogger.com,1999:blog-35048119896419736432024-02-19T08:47:06.827-08:00Following Jerrya journal of thoughts and prayers for the MacCallistersThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.comBlogger292125tag:blogger.com,1999:blog-3504811989641973643.post-46795978809357517852015-02-24T11:38:00.001-08:002015-02-24T11:39:55.575-08:00Settled DownThings 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.<br />
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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.<br />
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Katie The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com9tag:blogger.com,1999:blog-3504811989641973643.post-7236680872330200872015-02-04T12:23:00.000-08:002015-02-04T12:23:10.646-08:00Rocky RoadBeing 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.<br />
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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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com3tag:blogger.com,1999:blog-3504811989641973643.post-71658759357184991192015-01-28T17:29:00.001-08:002015-01-28T17:29:07.518-08:00homeward boundJerry was released we are just now leaving San Francisco, can't wait to get home.The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-13335886180926263082015-01-26T00:22:00.000-08:002015-01-26T00:22:04.365-08:00Out of ICUJerry 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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-5521948233588919022015-01-23T14:03:00.001-08:002015-01-23T14:03:43.514-08:00Getting CloserI'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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com1tag:blogger.com,1999:blog-3504811989641973643.post-81012526687918849602015-01-20T19:05:00.000-08:002015-01-20T20:05:00.307-08:00Two Steps Forward One Step BackTwo 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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-10202768349594088182015-01-18T22:27:00.000-08:002015-01-18T22:27:50.891-08:00A Good DayToday 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. The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com1tag:blogger.com,1999:blog-3504811989641973643.post-29115191219265383052015-01-16T13:04:00.001-08:002015-01-16T13:04:51.754-08:00ExtubatedJerry 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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com2tag:blogger.com,1999:blog-3504811989641973643.post-67691914681888411312015-01-15T14:25:00.000-08:002015-01-15T22:54:47.460-08:00oopsYour 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 :-(The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com0tag:blogger.com,1999:blog-3504811989641973643.post-65779109725072493682015-01-15T14:17:00.001-08:002015-01-15T14:18:34.381-08:00Set BackI'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. <br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com0tag:blogger.com,1999:blog-3504811989641973643.post-83935159803020860082015-01-14T16:08:00.001-08:002015-01-14T16:08:46.606-08:00updateJust 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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com1tag:blogger.com,1999:blog-3504811989641973643.post-44126697463129880262015-01-12T18:14:00.004-08:002015-01-12T18:14:59.185-08:00Ups and downsMy 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. <br />
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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:<br />
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Phase 1 (Posterior)<br />
Removal of hardware<br />
C5-C6, C6-C7 Osteotomies<br />
C2 to T4 Screws and rods placed<br />
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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. <br />
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Phase 2 (Anterior)<br />
Removal of plate<br />
C5-C6, C6-C7 Osteotomies<br />
C6 Corpectomy<br />
Instrumentation fusion<br />
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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. <br />
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Phase 3 (posterior)<br />
fusion C2-T4 <br />
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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.<br />
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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". <br />
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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.<br />
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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.<br />
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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. <br />
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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. <br />
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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".<br />
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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.<br />
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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.<br />
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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. <br />
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Thank you all for continuing to keep Jerry in your thoughts and prayers, I'll post updates when I can.<br />
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Katie<br />
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<br />The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-69960547364353218382015-01-09T11:16:00.000-08:002015-01-09T11:16:29.931-08:00AwakeJerry 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.The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com2tag:blogger.com,1999:blog-3504811989641973643.post-31708167686142772152015-01-09T01:50:00.001-08:002015-01-09T01:50:55.506-08:00ReunitedJerry 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<br />
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.The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com0tag:blogger.com,1999:blog-3504811989641973643.post-89943733264578378062015-01-08T23:29:00.002-08:002015-01-09T11:18:05.738-08:0015 hoursAfter 15 hours of surgery the surgeon has finally emerged.<span style="line-height: normal;"> 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</span>The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com0tag:blogger.com,1999:blog-3504811989641973643.post-64441529321513632642015-01-08T22:42:00.001-08:002015-01-08T22:42:39.398-08:00phase 2 completePhase 2 went longer than anticipated but was complete about 930 pm. Phase 3 is now under way.The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com0tag:blogger.com,1999:blog-3504811989641973643.post-32157311580579332482015-01-08T16:29:00.001-08:002015-01-08T16:29:33.198-08:00UpdateThank 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.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com2tag:blogger.com,1999:blog-3504811989641973643.post-59917220416151737232015-01-08T10:09:00.000-08:002015-01-08T10:09:03.858-08:00Surgery DayOur 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. <div>
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Thanks,<br /><div>
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Katie</div>
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The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com1tag:blogger.com,1999:blog-3504811989641973643.post-65916103350121212582014-12-30T00:38:00.004-08:002014-12-30T01:01:08.322-08:00Happy HolidaysIt's been over a year since my last post, time seems to fly by, there have been lots of changes, some good some not so good. Even though life is difficult I still feel blessed in many ways, two of the greatest blessings are the birth of my first grand baby and a home for my family. I'm so grateful to Redwood Christian Park and it's staff, for letting us
stay in our home, not having to worry about the roof over our head is such a burden lifted. I don't have adequate words to express my gratitude but I thank God every day for this blessing. We have a new addition to the house, Janea had a baby girl 7 months ago, precious Isabella. Having a baby in the house has added so much joy, it brightens my morning waiting for pumpkin to come up and see me. Janea and Pepe are doing such a great job parenting, I'm very proud of both them.<br />
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It's been 16 months since Jerry had stem cell treatment and he continues to get new feelings or sensations that he didn't have prior to the stem cells. The changes were not drastic, he didn't regain the use of his arms as we had hoped however the changes he did get were encouraging enough to consider going back for a second treatment. Prior to stem cells Jerry could not feel anything below his chest line and now he has some feeling. Jerry can feel some pressure from pinching or poking in his arms and legs. Before stem cells Jerry couldn't feel the water at all when taking a bath, within a few months of the treatment he began to feel the water but it felt cold to him. Now he can feel the warmth of the water when he takes a bath, the feeling is not as strong for him as it is for you and I but he's very thankful to be able to feel something. We've done an experiment with Jerry blindfolded where we have a hot pad and a cold pack, I'll place one of them somewhere on his legs or feet. Jerry then has to tell me where it's placed, right or left and if it's hot or cold, he's been able to answer getting it correct 8 out of 10 times. Jerry also gained bowel and bladder sensations as well as the ability to move his big toes, the toe movement is not consistent but encouraging none the less.<br />
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Jerry continues to work hard going to SCI-FIT in Pleasanton twice a week for therapy. There's a new machine at SCI-FIT that simulates walking called the locomat which Jerry was very excited to try out. Jerry's been on this machine three times now and every time he's done he says his whole body tingles. Below is a video of Jerry on the machine.<br />
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So now for the not so good news, Jerry touched based on it in his post, he will be having neck surgery January 8th. Jerry's C-Spine (neck) has collapsed and is pinching his spinal cord at the C7 level. Jerry's original break and damage to his cord is at C4 he now has sustained significant damage at the C6-C7 level. Jerry had a bone density test which confirmed he has osteoporosis from lack of weight bearing exercise. The cause of the new damage in the neck is unknown, one theory is that C6 could no longer support the weight and pressure from the fusion and hardware at C3-C5 because of the osteoporosis so it burst under the pressure. When C6 burst C5 and everything above went belly down into C6. C5 has screws from previous hardware which went down the center of C6 and to complicate matters further everything fused this way. Jerry was referred to one of the best surgeons in our area which felt that this surgery was to complicated for him so he referred Jerry to UCSF. The surgeon at UCSF will have to remove the old hardware, break apart the fusion, remove C6 completely, put in spacer and then fuse all the way down to T3 which is between the shoulder blades. This will be a posterior / anterior procedure which basically means they will operate from the front and back. The surgeon anticipates a 12 hour surgery and a 5 day hospital stay if all goes well. I know this all sounds very confusing, I attached a snap shot of his MRI which shows the damage. It may be hard for some to interpret the image but everything above C6 is not supposed to be forward it's supposed to be back in the opposite direction. The risks range from losing the ability to speak, becoming ventilator dependent for life, stroke or death. The risks are terrifying however the surgeon has assured us the percentages of these happening are low. I'd like to say these assurances give me some security but quite honestly they don't, I'll need lots of prayers on the 8th, I won't rest easy til Jerry comes out OK.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrV62XQfyUny7Z5imN9_qpXdGE41grrYX9aPMyFUcsQMp_Aj7EZy-aFZYeTh0xoCfkFksXjP72vlT7ua6XxYcTaUk6k4_m8VoF2yknH0pBa4nXqK2MLN-CsS4_ixgKiQIlbZuAK3dn1hU/s1600/spine.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrV62XQfyUny7Z5imN9_qpXdGE41grrYX9aPMyFUcsQMp_Aj7EZy-aFZYeTh0xoCfkFksXjP72vlT7ua6XxYcTaUk6k4_m8VoF2yknH0pBa4nXqK2MLN-CsS4_ixgKiQIlbZuAK3dn1hU/s1600/spine.jpg" height="640" width="404" /></a></div>
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I'll post after the surgery to update everyone on how he's doing, until then please keep Jerry and our family in your prayers.<br />
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God Bless!!<br />
<br />
Katie<br />
<br />The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-78621052713313795272014-11-07T14:05:00.002-08:002014-11-07T14:06:38.726-08:00Update from Jerry<!--[if gte mso 9]><xml>
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I can't believe it's been a year since the last post, It's been a crazy year.</div>
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<br /></div>
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About six months ago I started to be able to feel touch
below my level of injury, I can now feel when someone touches either one of my shins
and can tell a difference if someone is touching my left or right shin. About a
month ago I was getting acupuncture and one of the needles caused pain in my
shin and every time I go back I still feel the needles in that shin.</div>
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I will be
having a second neck surgery in January of next year to fix what my surgeons
did not anticipate. My cervical spine is collapsing and pinching my spinal cord
and could be preventing neurological messages from getting past the pinch. A
couple weeks ago I noticed that when my mom was itching my neck that my fingers
started to feel like they are being squeezed. It is called nerve pain and it
started up a month ago when I went off my antibiotic, but nerve pain has never
in my life been sensitive to touch. I've had nerve pain but it went away after
the coma. It is only in my neck where I feel changes in nerve pain when it is touched,
and I would like to note that this was not happening five months ago when my
doctor took an MRI when he found my collapsed spine the first time. I have been
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<br /></div>
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Jerry </div>
The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-27516170627691861512013-11-08T22:53:00.003-08:002013-11-08T22:53:48.280-08:00New Feelings<span class="null">Jerry has had some new feelings since my last post, it seems that he is having a sensation of feeling the water when he takes a bath. Until now Jerry has had no feeling below the chest line at least where water is concerned, on his arms he can feel pressure but it diminishes the farther down the arm you go. Concerning water however Jerry has not felt it below the chest line since the neck injury, that is until about 10 days ago. When in the bath Jerry felt the water on his middle finger and within minutes the sensation went up to his wrist. The feeling is not like the warmth you and I would experience, his body is interpreting it differently, it's difficult for Jerry to put into words the feeling but he says it's kind of a feeling of coldness. A Few days later while in the bath Jerry experienced the same feeling in the left foot and ankle, it's interesting to note that these feelings began on the left side of his body. The left side of his body was the first to regain movement in the bicep and to regain a little strength. With each bath Jerry feels the sensation in a new part of his body, he now feels it
on both sides of the body however in some areas the feeling is stronger. Today's bath Jerry felt the cold feeling on
his butt, our hope is that the body is regaining the ability to feel
below the level of injury and that eventually it will interpret these feelings
accordingly, warm as warm and cold as cold. These are baby steps hopefully toward a much larger recovery, I'm thankful it's one step closer toward the goal.</span><br />
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<span class="null">Katie</span>The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com8tag:blogger.com,1999:blog-3504811989641973643.post-44542545501660129812013-10-16T16:02:00.002-07:002013-10-16T16:02:46.516-07:00UpdateIt's hard to believe that we've been home from Thailand for 2 months already, the time has gone incredibly fast. Life has been busier than ever, it's becoming a little difficult to keep up with everything. Jerry is back in therapy at SCI-FIT in Pleasanton 2 days a week, he really is enjoying being back and working out with the trainers. Some of the trainers have mentioned that he seems stronger in his core as well as his legs seem to be responding differently when doing gait training. They've even mentioned how he seems so much more like the old Jerry before the brain damage. It's encouraging when other people notice the positive changes in Jerry's physical and mental health.<br />
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Jerry is also back in school at Cabrillo college 2 days a week taking the same class he was enrolled in prior to his brain injury, "Introduction to Programming, Java". Jerry had decided that he wants to develop a game controller for quadriplegics, setting this goal gave him a whole new outlook on life. He expressed how much better he felt having a goal to work toward, he's been struggling with what he's capable of accomplishing as a quad. After the first week in class, he again began to get very discouraged because it was so difficult for him with the brain injury. This was a class that he had breezed through before the coma and now he couldn't even figure out the most basic of things. I know how important it is for Jerry to get through this class, to boost his confidence and restore the hope that he can do anything he sets his mind to. I'm now in class learning right along with Jerry, so I can help him be successful and get through the class. It was so very overwhelming at first and each week is a challenge getting through the homework but we manage to get it done, many nights up til 1am doing homework but getting it done none the less. The teacher assigns 6 to 10 hours of homework per week however it takes Jerry twice as long as it takes others, it's not unusual for us to put in 16 hours a week on homework. <br />
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I received several responses to my request in last post about needing an acupuncturist, I appreciate everyone taking the time to respond. We found a great acupuncturist so Jerry is now also going to acupuncture once a week. Between SCI-FIT, acupuncture, school, and homework life can be a little overwhelming but it's good and we are doing well. <br />
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Jerry started weaning off all of his medication before leaving for Thailand and since has weaned off of 6 medications. Jerry is now only on a blood thinner to prevent blood clots and a low dose of Valium to help him sleep. This is the first time since he broke his neck he is off of all the bad meds. The doctors in Thailand said that it would take about 3 months to begin to notice any changes in Jerry form the stem cell treatment. It's been a little over 3 months since the first injection and there are some positive changes. About a month ago I noticed that Jerry's body seemed to be responding appropriately to what was going on at the moment. I compare it to driving, you go through the motion without having conscious thought process about it, you aren't constantly thinking break, turn, accelerate, you just do it. What's going on with Jerry is similar, when I'm putting Jerry's pants on he will arch his back and lift his butt to help, when I turn him he'll kick a leg, when I'm sitting him up to transfer him out of bed into the wheelchair he assists in sitting up. His core muscles are so much stronger, when I pull his arms to sit him up he practically does a sit up. The crazy thing is that if you ask him to do these things he can't but if he is not consciously thinking of them his body responds appropriately in helping with the task at hand. I pray that somehow he will be able to connect to this movement in a way that he can control it. A little over a week ago Jerry began to feel tingling in his body, in his right wrist and ankle at first and within 24 hours he felt the tingling over his whole body and to this day is still feeling it. A few days ago Jerry starting feeling a shocking sensation in one of his arms, yesterday he felt the same thing in his hamstrings and butt. I don't know what all this means, I don't know if it will turn into something more or give any mobility return but I'm so encouraged that something is happening and so hopeful for greater things to come.<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4tag:blogger.com,1999:blog-3504811989641973643.post-12263469959465758082013-08-14T08:42:00.001-07:002013-08-14T08:42:13.637-07:00Good to be homeOur trip home was fairly uneventful, we made it home safely, no bags were lost, no broken chair, we enjoyed the first class flight almost as much as on the way to Thailand. I had a couple friends take care of my yard while we were gone, I was just hoping to have the lawn mowed once before I returned but was blown away at how much work was put in. My yard has never looked so beautiful, after being gone for over a month I cannot describe the emotion I felt when I pulled up to the house and it looked so lovely, just an overwhelming feeling of happiness to be home. You know who you are, thank you so much for making our home coming special.<br />
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It's so strange to live the same day twice, we left Thailand Friday morning at 6am, spent almost 20 hours flying home to arrive in San Francisco by 9 am Friday morning. By the time we went to bed Friday night we had been up for 55 hours. I had about 4 1/2 hours of broken up sleep on the plane and Jerry had about 3 hours, exhausted doesn't begin to describe how we felt. 6 days later and we still have not returned to a normal sleep pattern but it's getting better.<br />
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It's imperative to keep Jerry's body in optimum condition in order for the stem cells to flourish. Jerry has returned from Thailand with a better outlook and motivation, he's going back to school at the end of the month as well as return to physical therapy at SCI-FIT in Pleasanton. In addition we need to continue the home exercise program and find an acupuncturist. If any of you know of a great local acupuncturist please let me know via post or email to katie@followingjerry.com. I truly believe the acupuncture was a great benefit for Jerry. Life is going to be very busy for us, but I'm so happy to see Jerry motivated again. <br />
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It's great to be home, thank you to all who have helped, donated, supported, loved and followed us through this journey, we love you!<br />
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KatieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com5tag:blogger.com,1999:blog-3504811989641973643.post-39716851276414076572013-08-02T02:56:00.001-07:002013-08-05T01:19:26.424-07:00Moving ToesJerry received his 7th stem cell treatment Wednesday evening, which was a lumbar puncture. He seems to respond well to the lumbar injections, within 30 minutes he was able to move his toes when he tried. It takes a great deal of effort and he fatigues rather quickly however he was able to move his toes several times throughout the evening, hopefully a sign of more good things to come. It's a little disappointing and rather curious as to why the stem cells have an immediate affect but generally doesn't last much more than 24 hours. I am grateful though to have some sort of reaction, it helps keep hope alive. This never gets old for me, but I think Jerry gets a little tired of me asking him to move his toes....<br />
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The day after stem cell injections patients are supposed to have low
activity and rest. Jerry had stretching and acupuncture in the morning
and then had the rest of the day free, unfortunately he was supposed to
rest so he couldn't venture out. I on the other hand decided I would
take a little adventure. It was the first time leaving Jerry for an
extended period of time, I left after lunch and returned late in the
evening. The nurses were good about checking in with Jerry, feeding him
dinner and keeping me posted on how things were going. There is a well
known street in Bangkok called Khoasan Road, it was referenced in the
book/movie The Beach. Khoasan Road is a world famous backpackers hot
spot, with cheap hotels, street vendors, restaurants & pubs and much
more, it has a real party atmosphere. I decided to make my trip to
Khoasan Road a little more adventurous by traveling by boat. I took 2
trains and walked 2 blocks to the pier to catch the boat, it
was a 30 minute boat ride and a few blocks walk before I found
Khoasan Road.There are many ways to travel in Bangkok, train, bus, taxi,
motorcycle, tuk tuk, boat, with the train your limited on where it
goes, the bus is very confusing, the motorbike looks very scary the
drivers drive crazy, but I'll have to try motorbike at least once before
I go. I can't get over how economical it is to get around, the train
was $1.34, the boat was .57 cents. After the day of souvenir shopping it
was time to head back to the hospital, it was too late to catch the
boat so I decided go get back by way of tuk tuk. I loved the ride in the
tuk tuk, it could be very bumpy at times but it felt like a motorcycle
ride, I loved being in the open air. The 35 minute ride back to the
hospital was a little more expensive then the journey there...a whopping
$5, it seems like it would be far more economical to use public
transportation here than owing a vehicle. Here are a few pictures from my outing, the only thing that would have made it better is if Jerry could have enjoyed it with me. <br />
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There are several types of boats transporting people</div>
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These boats were super fast </div>
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Below is the type of boat I was on</div>
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Khoasan Road</div>
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The view from the back of the tuktuk</div>
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We have less than a week left, 1 more stem cell treatment and then the journey home. I'm so ready to get home, it's been a great trip but I'm getting home sick and miss my kids, I know Jerry is home sick as well. Thanks to all who have taken the time to leave comments, it's nice to feel a connection with home.The MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com3tag:blogger.com,1999:blog-3504811989641973643.post-39243860397763683992013-07-31T03:03:00.000-07:002013-07-31T03:03:16.656-07:00A Wonderful Dinner OutThe hospital has 2 facilities within a mile of each other, we are at the smaller facility which houses 8 patients and their families, I believe the other facility has about 15 patients. The hospital surprised the patients with a wonderful night out for dinner last night. It was such a wonderful surprise, the hospital rented a couple vans and bused all the patients and staff to a nearby Thai Restaurant. There must have been close to 80 of us, people from all around the globe coming together for a meal. The communication barrier made it a little difficult to interact with one another, families from Spain, Mexico, Germany, Italy, the middle east, there was only 1 other family from the US. All of us with a common goal of improving the quality of life for someone we love.<br />
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The food was absolutely fabulous, the best I've had since arriving in Thailand, I wish I could eat at that restaurant everyday for the duration of the stay here but it's a little far. I was amazed at the end of the evening when I tried to pay for our meals and found out the hospital was paying for the entire evening. It was such a wonderful surprise and incredibly generous gesture on the part of the hospital. <br />
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Jerry has been able to move his toe and foot today but it's been random, one minute he's able to do it the next minute he can't. Jerry has a stem cell lumbar injection in about an hour, as always we're looking forward to it. Hope to have great news to report after injection. :)<br />
<br />
xoxo<br />
katieThe MacCallistershttp://www.blogger.com/profile/02524453849746508846noreply@blogger.com4