| Sunday, January 6th The headaches continue. They almost seem like a migraine-type problem now. Light makes the pain worse, and so does noise. He lays back in his chair with a blanket over his face, lights out. Then we turn the radio on low, and he naps. We also give him some ibuprofen, and a mountain dew. Sudafed does not help this headache, so we are pretty sure it's not sinus related. After a fair amount of hours, the headache abates. This has been an on-off thing for over a week. |
| I don't think it's the same type of headache he's been plagued with since that spinal tap. I think we are/were dealing with 3 distinctly different sources/headaches. First the spinal headache, then the Valium withdrawal headache, and now a migraine headache. I guess it might be time to query a doctor about this. |
| Jake's headache was so severe yesterday that he opted to stay home instead of going to the Gateway store with Terri. Terri is a little under the weather, and extremely upset with Gateway and was going to deliver an ultimatum - a replacement - new laptop, or her money back. (being sick, and mad, is not a good combination :). He desperately wanted to witness this, but his head hurt too much. |
| She got a new replacement for Jake. Jake got a new laptop one month ago. We got this so he could take a computer with him to Minnesota. The first day he got it the noise was so loud that they had to take it in for "repairs". (the first day). They would not exchange it. After about 20 days, and many angry phone calls, it was returned. Then keys wouldn't work. Back to Gateway again. Then Jake couldn't install software, or use some of the software already installed. That's when Terri exploded. She got a new laptop for Jake, plus a bonus of a software package. But she had to demand her rights, (and mention the Better Business Bureau) |
| Where does one go to buy a computer nowadays? Milwaukee PC is a bust - low-quality product. We thought Gateway would be safe. |
| Today is Jake's last day on oral anti-spasmodic. He's been in X2 to get the medication in his pump regulated. It will probably take another 2-3 visits before an amount is determined to be right for him. That is, I hope that's all it will take. |
| Tomorrow Jake is going to be 'show and tell' at our high school. A class is studying the nervous system, and the teacher asked Jake if he would come. Of course he would, he loves being the center of attention, and he also likes to make sure people know how he got injured, in the hopes of preventing another spinal cord injury. |
Sunday, January 13th |
| The headaches have stopped (for now). Thank goodness! |
| Last Monday Jake went to the high school to be "show and tell". They were studying the nervous system. He was a big success. The students were hesitant at first, but soon the questions started. Everything from "how do you go to the bathroom?" to "what would you do if you could have you legs back for one day?". It was a good experience for both Jake and the kids. |
| Spasms seem to be more controlled this week. The pump was a good move. |
| Yesterday (Saturday) Jake and Dave went to the monster truck rally in Milwaukee. Jake had a ball. Any time he is with Dave he is happy. It doesn't matter what they are doing - watching TV or going to a monster truck rally - as long as Dave is present, Jake is content. |
| No news from Minnesota yet. |
Monday, Jan 14th Had a minor crisis this afternoon. Jake had a clogged Foley which manifested as a horrible dysreflexic incident. Major headache. He was sweating profusely. He hasn't sweated like that for 8-10 months. I placed my forearm on his chest so I could wipe his forehead and his heart felt like it was going to jump out of his body. He experienced major bladder spasms. As in the past, as soon as Terri cleared the Foley his headache abated, and his forehead was dry. This is amazing and must be seen to be believed. We are talking nanoseconds from wet clammy skin to dry, warm skin. Where does that sweat go? |
Sunday, January 20th Last Wednesday Jake had a bad night. It follows that Terri also had a bad night. He was feverish, kept spiking temps over 103.00. Finally Terri had to pack him in ice. So the urine specimen went to the hospital the next day. And of course we have heard nothing since. One comment Froedtert made to Terri was "you know, we really don't like to prescribe antibiotics that often". |
| Terri must change Jake's Foley more often than normal, and it is sludgy. So his bladder stones must be multiplying. We know he has them as they were present at his last cysto. The doc couldn't blast all of them because Jake became dysreflexic. He can only tolerate the procedure for a limited time, then the doc must stop. Jake is scheduled for another cysto in a few weeks. |
| You may recall that I have mentioned that Jake has no
triceps. Part of the triceps run under the upper arm, and straightens the
elbow. He can't do that. Try this to understand his problem: when you are laying down, close your arm so your hand is touching your shoulder. Jake can do this, but he can't put his arm back down. Once it's up there, he can't straighten it out again. |
| If he raises his arm(s) over his head they promptly fall onto his head. This can hurt! Once Terri asked Jake to see if he could turn off the overhead fan in the living room. She wanted to see if he could grip the chain - she wasn't thinking about the triceps. He attempted this, and succeeded in hitting himself in the face since he was looking up to the fan. |
| Jake's spasms seem to be very well controlled now. Of course he still gets some, but 100% improvement over before the pump. That was one of the best decisions we made. No more Valium. No more oral antispasmodics that make him sleepy. Wonderful! |
| Terri has finally found a doc in Minnesota that will accept Jake as a patient when he goes to the Courage Center. All the docs she contacted either weren't accepting new patients, or would not accept Wisconsin Medicaid. |
| Now all we need is a phone call from the Courage Center. |
Sunday, January 27th Jake has resumed his sessions at the Y this past week, and he was relieved to discover that he did not lose any muscle strength in his biceps. Since he has not had a workout since the one session he had right after the epidural in mid-December, this was very good news. (that was when he got that horrible headache from working out after that spinal procedure) |
| He has also started volunteering at the nursing home again. |
| It is good that he has his cysto soon. He's going through Foley's faster than I go through megabytes! Terri's had to run over to Watertown pharmacy X2 in the past two weeks to buy extra ones. We are only allowed 3 a month through Medicaid (because that is what the script said). Terri is in the process of requesting a script from the doc for an increase in the monthly allotment, but that hasn't happened yet. |
| The spring-like weather we have been having is a very good thing for Jake as it allows him freedom to go places in his chair. The snow is a huge problem for Jake, as you can imagine. Some people only shovel the width of their shovel, which isn't too bad, Jake can usually go through that. The problems are the corners. Few people shovel the complete corner; instead they allow a small strip for passage. And more often than not, it is not where the curb breaks away and allows for wheelchairs. |
| Terri called Minnesota. Now Jake can expect admission in early to mid-February. There are no openings now. |
Sunday, February 3rd Jake had his cysto last Monday and there were no stones! Can't figure out why he is having so many problems with the Foley. Terri has to irrigate the catheter every day, and change it many more times than normal. (normal and Jake is an oxymoron :)) One of the therapists suggested laying off soda for a week or so. He mentioned the sugar in the soda. Anything is worth a try. |
| Other than that, I think it's been a quiet week for Jake. I've been preoccupied elsewhere so I really haven't seen much of him. |
Sunday, February 10th I think it's been a quiet week for Jake. I have not spent much time with him as I have been pre-occupied with other things. |
| Last word from Minnesota is mid-March. (We must wait for an opening.) |
Sunday, February 17th Jake had his pump raised 30 points on Monday. He had been experiencing an increase in spasms. They are better now. Other than that I think it's been a fairly quite week for him. |
Sunday, February 24th Jake has been sick all week. On Monday afternoon he experienced nausea and vomiting. I sat with him for over 2 hours Monday afternoon. He was continuously sick. Then he finally felt a little better and was afraid to move. So he slept sitting forward in his chair, with 2 pillows holding his head. |
| Since then he has had difficulties with a high fever (almost continuously); respiratory; a headache; no appetite - the doc said Jake probably had a viral thing. |
| The high fever is the most worrisome because he can't sweat. Our ice packs really got a workout this past week. Yesterday he finally started to feel better. |
Sunday, March 3rd This has been a quiet week for Jake. Very quiet in comparison to the week before that. |
| His right ankle was very swollen yesterday. He must have bumped against something and not realized he hurt it. |
| He has a whole box of girl scout mint cookies (again). Thank you, Karen. |
| Still no word from Minnesota. |
Monday, March 11th I have decided to start reporting by the month, adding news as it happens. Things have been very quiet since Jake had that viral thing a few weeks ago. Hopefully they will stay that way. |
Saturday, March 23rd Jake has been spiking high temps again this past week. Both he and Terri have not had much sleep. Also headaches, but I think that's an allergy/sinus thing because of the time of year. |
| Jake is due for a scheduled, follow-up cysto very soon. Maybe they will find a source of the fevers. |
Thank you for your prayers. |