| Sunday, December 2nd Jake is still having digestive problems so Terri called the sci doc's office. They suggested that Jake might have picked up an infection during the pulling of the feeding tube about 3 weeks ago. We noticed that his symptoms started shortly after that. So yesterday I took a specimen to the hospital for culture. |
| Other than that, it's been a pretty quiet week and I hope it stays that way. |
Sunday, December 9th On December 1st Jake became an honorary uncle. His 'Big Brother' and 'Big Sister' had a baby boy. |
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Welcome to this world |
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God Bless you! |
| You can discover more about the Big Brothers/Big Sisters organization here. |
| Jake had a surveillance cystoscopy on Friday. The doc found more bladder stones. We should have suspected due to increase in dysreflexia but we didn't. Boy, you'd think you'd learn after dealing with this for over 1-1/2 years now. The doc was able to blast some of them but he had to leave a few due to Jake's dysreflexia. The doc has learned that if the cysto takes too long Jake starts becoming dysreflexic. |
| Autonomic dysreflexia can occur anytime Jake has discomfort below the line of his injury site, which is very high on Jake (C5-6 - anything below the upper chest level). It can be the simplest thing. For example, if we wait too long to eat we sometimes feel 'funny' - weak, dizzy, our tummy growls. Well, Jake becomes dysreflexic. If we eat too fast we sometimes experience a full feeling, discomfort. There again, Jake becomes dysreflexic. Not all quads experience dysreflexia the same way. |
| The most common reaction for Jake is a headache. He doesn't sweat anymore. He used to sweat on one or the other side of his forehead. Cold, clammy sweat. That's how we used to know we had found the source of his dysreflexia. The sweating would cease. Immediately. It was amazing. One second he would be sweating - the next second his forehead would be warm and dry. Now Jake can tell as soon as we find the source. Be it a pinched Foley tube or just rearranging his body or finding a wrinkle. He announces "that was it" and then he's fine again. |
| The headache is due to Jake's blood pressure rising. If left unchecked, it could become a life-threatening event for Jake. |
| We got rather excited yesterday because Jake got a letter from the Courage Center but we soon came back down to earth. He's on their mailing list now and it was just the monthly newsletter. Still no news about his starting date there. |
| On Tuesday (Dec 11th) Jake will be at Froedtert for his trial injection of Baclafen. We thought he would be admitted overnight but it doesn't look like that will happen. They inject him and monitor his vitals to determine if he is a candidate for the Baclafen pump. If everything goes ok he will get the pump on the following Monday, Dec 17th. The Baclafen pump will eliminate the need for multiple drugs to ward off spasms. I have hopes that Jake will then be able to discontinue the Valium. |
Sunday, December 16th Jake had the Baclafen injection this past Tuesday. They inject 5 times the normal dose into his spine. Then they observe him over an 8-10 hour period. Of course, he slept. Usually when we touch his legs it starts a spasm. Well we could have rolled his legs into a knot and he wouldn't have moved a muscle. But it seems he passed the test. The surgery is scheduled for tomorrow. |
| I think they inject such a high level of drug so that they can see if he will have an adverse reaction. I think they are saying "we don't think this pump will malfunction, but if it does, and releases a full reservoir into his system, we want to know that he will not be hurt by that". |
| Well, they got home about 9:00 p.m. after that huge injection, and Jake was awake half the night. He couldn't sleep. Too much sleep during the day. |
| When he was discharged (after the injection) he was told he might get a headache due to the spinal injection. Not from the meds but from the actual injection itself. Well, he did. As he was instructed, he drank lots of caffeine. It lessened, but remained. |
| On Thursday Jake felt better so he went to the YMCA for his workout. On discharge from the hospital he was told that he could "resume normal daily activities". So he did. After the workout he had a horrific headache. Terri called the doc and was told "oh no, you shouldn't workout after a spinal procedure". |
| (Jake's fault again. He should have known that.) I think the medical profession forgets that most people do not have a medical degree and are not familiar with the rules unless they are informed of them. We were not informed to limit physical activity. |
| Jake spent the remainder of the week in bed, drinking caffeine. In mid to late afternoon he seems to feel better and then he gets into his chair for a while. But he stays home. And again today he will be staying in bed. |
| Tomorrow Terri and Jake must be at Froedtert at 6:00 a.m. Now for the average person that's no big deal. But it takes Terri 2-1/2 hours to do daily cares in the a.m. That includes both her and Jake - cares and breakfast. So they are going to bed very early tonight. |
| Terri has finally found some help with daily cares in the a.m. This just started about a week ago. Tomorrow the aide won't be coming. Terri can't ask the aide to come at special times so when they must leave the house earlier than usual Terri does the cares. |
| Please think of Jake tomorrow (Monday, Dec 17th). Surgery is at 7:00. The hospital isn't sure if he will go home same day, or spend one or two days there. I guess it depends on the surgery. |
Tuesday, Dec 18th The surgery went well, the pump is functioning properly. Jake is probably coming home tomorrow (Wednesday). Last night he spiked a fever so they packed him with ice. He still has that darn headache too. He is on complete bed rest with just a 20 degree raise for eating. I hope they resolve that before they discharge him. |
Thursday, Dec 20th Sounds like Jake will be coming home tonight. The nurse reports that he is up in his chair, with NO headache, NO fever. Still has nausea, but hopefully he will be discharged so he can come home. This 'same day/at the most overnight' admission turned into a 3-day bad time for Jake. At least the pump is working ok. |
Sunday, December 23rd Jake finally came home from the hospital on Thursday evening. I timed it. He was home exactly 7 minutes before his friends rang the door bell. (how do they do that?) |
| Jake is starting to feel better but he is having a rather difficult recovery. He has an approximate 6 inch horizontal incision on the right side of his abdomen, about even with his navel. Then he has an approximate 4 inch vertical incision directly over his spine, about 2-3 inches above his waistline. He has spent his days in bed since his trial injection on the 11th. First a huge headache (spinal), now it's mostly nausea, but the headache still bothers him too. He was experiencing quite a bit of pain directly over where the reservoir was implanted, but that also has improved. |
| The very good news - Jake's off Valium. Right now he gets a very low dose of Baclafen via the pump, and he also is taking oral Baclafen and Zanoflex, both anti-spasmodic. Gradually he will cease the oral drugs and rely solely on the pump. His spasms have decreased dramatically. We never want them to stop completely because they help massage the muscles and sometimes aid in transfers (when Jake can control them). |
| Now we must work at getting rid of the Paxil. I still maintain that he didn't need it. All he needed was someone to discover the source of his 'sore throat'. But we won't go there today. |
| On Friday I was home with Jake. He wanted to get up - he was so sick of being in bed. I told him I absolutely was not going to bother Terri. If he wanted to get up, I'd get the Hoyer out. I have difficulties in transferring him. The little oinker is up to 170#, and I have arthritis in my hands. Very bad combination. If it were an emergency I could get him into his chair in 2 seconds, but this was not an emergency. Well, he agreed to the Hoyer, which totally surprised, but delighted me. Since his spasms have decreased he is more willing to be transferred via the Hoyer. With too many spasms he could easily slip out of the 'seat' of the Hoyer. |
| Well, I bet we spent over an hour experimenting but we succeeded! We managed to get him into his chair. We finally got the chains that attach to the canvas at the right height for a sitting position, we figured out the different knobs and levers ( it's a manual lift), we determined how far apart to place the legs so it could slip under his chair, and he was finally delivered into his chair. Then he promptly announced that he was sorry but his nausea was worse, and he was experiencing 'charley-horses' in his abdomen, and he wanted to go back to bed. :) |
| It was a very good experience for both of us. Jake was assured that, if necessary, I could move him. I feel better about using the Hoyer. And actually, both of us had a very good time learning and experimenting. |
| We decided to keep this our little secret and surprise Terri at a later date. Well, when she went to get the chair she immediately knew that someone had been fooling with it. So our little secret lasted about 10 minutes. |
| As you celebrate the birth of the Christ child, may you and your loved ones be filled with peace. |
Sunday, December 30th Jake is still bothered by headaches, but aside from that he is feeling great. The staples were removed on Wednesday, Dec 26th. No wound dehiscence, no infection - almost like a post-op recovery should be - almost 'normal'... for Jake, that is an exception. The nausea is gone - just that darn headache. I'm beginning to wonder if it's viral. Other family members aren't feeling the best. Maybe it's just something that's 'going around', and not related to the surgery. Someone suggested that maybe it's withdrawal from one of the drugs he was on - maybe the Valium? And of course we must remember that he is plagued with sinus problems, except the Sudafed does not take the headache away like it usual does. |
| The headache (and the snow) forced him to slow down; mostly he's been staying home and taking it easy. This is what you should do after having major abdominal surgery. So this is good. |
| We are possibly looking toward the end of January for his move to Minnesota and the Courage Center. Terri is investigating air lines, and the possibility of Jake flying back and forth. The ride in the van is very long - 6-7 hours - due to many stops. Probably 5+ hours if they had no stops. The Courage Center is on the west side of Minneapolis. We live 30 miles west of Milwaukee. |
| Jake cannot sit up straight in the van in his power chair, he must lie back or his head would hit the roof. Frequent stops are a must so he can have good pressure releases. He can do pressure releases in the van but has a very limited range. |
| The pump seems to be working well. He is on a low dose of Baclafen from the pump, and is slowing being weaned of the oral Baclafen/Zanoflex. He is starting to experience more spasms so the pump is going to need to be adjusted soon. He has an appointment on the 9th of January for that. |
Tuesday, Jan 1, 2002 Happy New Year! Jake has been saying that he has feeling in his fingers so I tested him today. I took his santa hat (furry trim), a tangerine and a sock with ribbing. He did not do too well with his fingers - he guessed, but with his left thumb he was correct every time. Way to go, Jake. |
| Jake's headaches are better. Terri found out it was because they took Jake off the Valium all at once, not gradually like they should have. |
| Jake finally got his Hoppin' John today. If you remember, that's what he wanted for his first meal off the liquid diet. It's not hard to make, just time-consuming, so it didn't get made till today. But what better time to make it - New Years Day - the traditional day for Hoppin' John. It is so good! Every time I have a bowl of it I wonder why I don't make it more often. :) |
| Thank you for your prayers. |