| Sunday, July 1st The motor that controls Jake's sitting position in the power chair burned out last week. He can't go all the way back or sit straight up in his chair. They think this might be related to the day Jake tipped backwards in his chair when the tip bars got stuck in the mud. He didn't fall out but his legs ended up over his head. It took a few days for that "burny" smell to leave the chair. He also broke the left chair leg when he drove into a wall during a spasm. The chair is supposed to be repaired tomorrow. |
| Terri said "I guess we must count our blessings that he's leading a very active life, and not sitting home watching TV and feeling sorry for himself". I must agree with her. Jake's having a fun summer. Last summer was spent fighting for his life, and in a few months he must make decisions about his future. His surgery is cancelled. I guess he's entitled to have a little fun. |
| I went to Jake's physical therapy session last week. He only has one a week now. I think it's a combination of 3 things. It has been a year and PT does not go on forever; he has not developed any new motion/feeling that PT can work with; and lastly - I suspect it's insurance. Jake is on Medicaid since Terri's employer dropped Jake from Terri's insurance. I'm not saying Medicaid is not good, but I suspect (maybe) that if he still had the insurance that he had when the accident occurred he might be getting more than once a week therapy. And then again, maybe not. These are just my guesses - no facts to back this up. |
| I took a lot of pictures at the PT session. But they are still in the camera. I haven't had a minute to look at them. Maybe this week. Then I'll post some for you to see. I was very surprised and happy to see how Jake can maneuver around on the mat. He uses momentum, his biceps, and spasms to move around. When the session was over, PT person transferred Jake to his chair in a way I'd never seen before. He took advantage of Jake's spasms in such a way that Jake was standing during the mat-to-chair process. I know that the spasms sometimes hinder Terri during transfers; she is afraid to try to take advantage of them - she's afraid that she will drop him. Jake seems taller. Which is likely since he's 18 and probably still growing. I bet he's about 6'2" now. |
| Jake saw the ENT doc on Wednesday. His drainage hole is healed. Now this is different than his esophageal tear. The tear created a fistula which necessitated the creation of a drainage hole so everything could drain/heal. The ENT doc seems to think that the esophageal tear has healed and he's allowed Jake 'soft' foods for a while before graduating to a regular diet. |
| The ENT doc now says that the drainage hole - this is the visible one on the left of his neck - is healed in such a way that he has a solid layer of skin underneath the opening. He (doc) has given Jake 2 options. 1-leave the hole as is. 2-have it cosmetically closed. |
| 1-'leave as is'. I guess I'll have to take a picture of this and post
it. It is not a pleasant sight. My fears now are that since it is not a
'medical necessity' (oboy - all medical coders absolutely HATE those words)
that Medicaid will not cover this surgery. 2-have it cosmetically closed. To do this ENT doc would have to remove that solid layer of skin because he said that you can't suture skin on top of skin. There is a very real danger that Jake's esophagus might again be traumatized. What I don't understand, and this may be over-simplifying, if they have to remove the skin (that Jake has spent the last 6 months trying to heal) won't they be back at square one? |
| Jake has the tummy-tube out in a couple weeks. He might also get the trach hole closed at that time but that involves a different doc so it might not be possible. I guess closing the trach hole is a matter of pinching the skin together and steri-stripping it, or a few sutures. I had thought it might involve a graft since we were told it wouldn't close on it's own due to length of time it was open. |
| Wednesday, July 4th On Thursday Jake decided to have the neck bandage removed. It was too hot. So he spent the day without it. He said a lot of people stared, but that was ok. He chooses to wear a bandage on cooler days and only removes it when the weather gets too hot. |
| Sunday, July 8th Wow, I can't think of anything to report. The carnival is in town. When I was a kid that was a major event of summer. Now it doesn't even come on the 4th anymore. :( |
| Jake had lots of fun at the carnival - even though he couldn't go on the rides, and couldn't play any games. He saw a lot of friends that he hadn't seen in a while. |
| Some of Jake's friends cleaned and rearranged his room on Friday. It was an all-day affair which should have extended into Saturday, but didn't. So his room is sort of half done right now. |
| Jake had a couple minor headaches/sweating incidents but in comparison to prior dysreflexia events these were a piece of cake, and easily remedied. |
| Maybe more later, but with any luck this coming week will be as uneventful as last week was. :) |
| Monday, July 9th - day 365 Jake just reminded me that this is his anniversary. Right now he is sitting in his room with 4 ice packs on him - head, chest and thighs. It is 98 degrees outside, and because it is his anniversary, he had to go to the city beach with his friends. He didn't stay long. The heat drove him home. |
| I told him we should celebrate. He made it! A whole year. I marvel at his attitude. He is so 'up' about life. Nothing gets him 'down' for long. He just bounces right back. So many times he has comforted me in regards to his paralysis. He is an amazing boy (man). |
| Thursday, July 12th Well Jake can legally eat all foods now. He is not limited to 'soft' foods any more. Of course, his definition of 'soft foods' expanded with every passing day. :) |
| A nurse told him that when he develops a dysreflexia headache to drink a little caffeine first, then locate the source of the problem. It sounds like a good idea but I hesitate to do that because we used his headache to let us know when we found the source. We knew that when the headache went away that we had solved the problem. |
| Sunday, July 15th Jake has grown! Not only has he gained back the 40 some-odd pounds that he lost in the past year, he has also shot up. He doesn't fit in his manual chair any more. |
| Jake doesn't use his manual chair very often. He never felt very comfortable in it, and now it's even worse. When Terri transferred him to it yesterday he had a terrible time sitting up in it. His legs are too long, and he is too tall for that chair. He can't lean forward to stretch like he can in the power chair. (he just keeps going and would fall out if we didn't catch him.) The cushion hangs over the front of the chair by about 2". (We use his power chair cushion for the manual chair.) |
| This is a chair that we got from a group in Madison that saves/reconditions wheel chairs that otherwise would be heading for the dump. He was never measured for it. (which I don't think would have mattered - he's had a growth spurt in the last few weeks/months) Terri drove over to Madison one day last fall while Jake was still in the hospital and the man just picked one out and gave it to her. We are very grateful that we have one, but we need to get him a manual chair that fits him. |
| Hopefully, when we get Jake a manual chair that fits, he will spend more time in it. Not that I mind the power chair, but the manual chair would help Jake build his biceps up. (which are becoming very strong already). Also I would think that the psych of using a manual chair would encourage him to keep trying to do more. |
| Jake has an appointment with the sci doc on Wednesday to see if we can
find some way to control his spasms a little better. He is on max dose of
baclafen, and he is taking valium. But I think maybe the max dose of
baclafen was for a 104# boy. He is now a 140# 18 yr old. There are 2 other
anti-spasm drugs that the doc could prescribe but maybe the baclafen would
work with increased dosage. I guess we'll see on Wednesday. What we need is a time-released anti-spasm drug that will give him (and Terri) eight hours of uninterrupted sleep. That would put huge smiles on both their faces. :)) |
| Surgery is planned for mid to late August. This will be to close both the trach hole and the drainage hole. I forgot to ask how long the hospital stay will be but recovery should take 1-2 weeks. He is very healthy now so that might be shorter. |
| Then he and Terri plan a 2-day trip to Minnesota. More on that when I have the details. |
| I had an eye-opener the other day. I am doing too much for Jake. I am
not allowing him to do, or try to do, things for himself. That has changed.
And Jake is not against this. He wants to be independent just as much as we
want it for him. Why should he do something, or try to learn to do something, if someone else is willing to do it for him? And how does he know he can/can't do something unless he tries? That's changed now... and it will benefit all of us, especially Jake. |
| Jake has an air mattress that inflates/deflates numerous 'bubbles' at
timed intervals. This eliminates the need for pressure releases during the
night. Well, two times now Terri has forgotten to turn it on, and two times
now Jake has slept through the night without spasms. Last night he slept the
whole night without a spasm, and this a.m. Terri discovered that she had not
turned the mattress on. Terri is debating not using the mattress; instead
just getting up to turn him for pressure releases. The mattress has settings and we usually use #4; tonight we are going to use #2. It would be wonderful if we could find a happy medium so we can keep using the mattress. |
| Thursday, July 19th Jake's neck surgery has been cancelled. It was recently scheduled for the end of August but Tuesday night after Terri transferred him to his bed for the night she gave him a drink of water and his neck leaked. It's like he can never have two things go right for him in a row. A variant of Murphy’s law. |
| Sunday, July 22nd Jake is spending a lot of time in front of an air conditioner and two fans. Also ice packs on his head, chest and thighs. He will not try towels soaked in tepid water. I have been told that will help better than ice packs, but he insists on the ice packs and it is easier to give him what he wants than argue with him. Yesterday the high was 97 degrees. With a dew point in the 70's, we might as well be in south Texas. (and that would be wonderful - we love that place :)) |
| Jake weighs in at 143#! Terri told him that he must NOT gain any more weight. She's afraid that she will not be able to transfer him. He ate a lot of food (after being without for 9 months) but now he must be more selective with his choices. He agreed... there is a Hoyer lift in the garage, and he knows we'll use it. |
| This a.m. Jake decided to make himself NPO until he can get in to see the ENT doc. The drainage from his neck hole continues to increase. By 'drainage' I mean that when he drinks something, some of it seeps out the neck hole via his esophagus. This is not infection, just liquids that he has consumed. No food seems to have ended up in the hole, just liquid. |
| Jake is not resigned to it this time. He doesn't want to wait any longer. He wants action. If this can be surgically corrected, he wants it done. There have never been 'choices' on Jake's part regarding the surgeries. The ENT doc made those decisions. But this time Jake is going to be adamant about closure - one way or another. |
| Jake's case is sort of unique. The other two cases (of esophageal tears
in sci patients) that happened shortly after Jake's tear, healed within a
month or two. Jake's tear created a fistula, which became infected. I
honestly don't think the ENT doc knew how to treat Jake, and thought this
was the best course. In a way it was... Jake was constantly getting
infections - UTI's and pneumonias. But now he's very healthy - hopefully a different course of action will be deployed. |
| I also believe that the reason a fistula formed and became infected was because no one thought to look for an esophagus tear. Jake's was the first. No one took his complaints of sore, painful throat seriously. They all thought it was a 17 yr old complaining so he could get out of doing things. |
| It was finally found, by accident, by a nurse! A fistula/infection would probably never have occurred if the esophageal tear had been discovered immediately. The two cases after Jake's were discovered sooner, mainly because of Jake's case. Those two cases healed sooner because there was no infection/fistula. |
| Even though the ENT doc has cancelled Jake's surgery (for neck hole closure) Terri is going to see if the doc will at least close the trach hole so Jake will have an easier time with his baths. He is afraid that water will get in his lungs, and that is a very real concern since the trach hole directly communicates to the trachea (wind pipe). Of course, if neck/drainage hole/esophagus surgery is in the future, they will want the trach to stay open. |
| It's confusing and I don't completely understand it. The ENT doc does not want to suture the esophagus tear (remember he tried once and that failed). He planned a graft - from chest tissue to esophagus/neck tissue but cancelled that because of the negative swallow study. We all thought that the drainage hole, and the esophagus tear, had healed. Now we know that isn't the case. Jake is hoping that the ENT doc will reconsider, and attempt the graft procedure, even though Jake was dreading it. (it will be a huge chest incision, as I explained in an earlier post). |
| Terri still plans on going to Minnesota in August. They will visit the Courage Center. Jake is very excited about this camp. Hopefully he will be attending it in the near future, but with this new development that may be delayed. :( |
| The other day Jake and a friend were in the neighborhood bait shop. They
keep live bait in 42 degree water. Well the friend dipped her hand in the
water and put some on Jake's leg. He protested loudly. It was cold! He doesn't feel the ice packs we place on his thighs, but he felt that water. I don't explain it - I just report it. The only thing I can think of is that we place the ice packs mid-thigh or a little higher, and his friend put the water right above his knees. Didn't think to check on that yesterday. I'll experiment today. |
| I doubt anyone will be going anywhere today. It's supposed to be hotter than yesterday. |
| Jake has developed skin sensation by right ankle. I don't know the significance of this. We could rejoice that he can feel something, but what if that 'something' turns out to be pain, and nothing more? Many sci people live in constant pain - Jake does not. We are grateful for that. |
| Wednesday, July 25th Jake has been experiencing slight 'leakage' from his neck after drinking liquids. The ENT doc has put Jake back on NPO status (nothing by mouth) for 3 weeks. Good thing he still has his belly tube. Actually that needs to be changed. It's been too long since last change. We thought it would be closed up, not replaced. :( |
| After three weeks Jake is allowed small amounts of liquid to test if his esophagus has healed (again). He was slightly discouraged for about 1 day, but now he's back to his old self again. Nothing can keep that kid down. Terri and I, on the other hand, need a little more time to bounce back. |
| On Monday Jake was caught in a downpour. It was totally unexpected. He, and his power chair, got drenched! We were told that his power chair was rain-safe, but shortly afterwards he could not change his sitting position, that is, move the chair up/down. Yesterday he went to National Seating in Milwaukee and sure enough, the rain had done a number on the spark plug(s). |
| Wonder what tomorrow will bring? |
| Sunday, July 29th It's been a fairly quiet week. Shhhh... let's not rattle anything. :) |
| One week down, two to go with the tube feeding. As Jake said, "after 9 months of tube feeding, 3 weeks is a piece of cake." |
| One of the nurses at Froedtert said that since this is only for 3 weeks, the tummy tube can stay as is - no need to change it now. (it hasn't been changed in a very long time). |
| Terri and Jake are still planning on going to Minnesota in August. They will visit the Courage Center. Jake is very enthusiastic about this. Hopefully the throat setback will not hamper or delay this great opportunity for Jake to attend. |
| The weather has been cooperating. 70's and dry. What a wonderful change from the high 90's and dew points in the 70's. :) |
| One night last week Terri was repositioning Jake's legs after a spasm when she discovered that he was sweating behind one of his knees. This is the first time he has produced sweat below his level of injury. He usually only sweats on his forehead and/or shoulders. And if the sweating is the result of dysreflexia, usually only on one side. |
| PT person says that either Jake has regained some of his triceps, or he is using his biceps unusually well. PT person can't tell for sure. Either way, it's very good news. :) |
| Sci doc has increased Jake's baclafen dosage. I don't know if it is helping or not. He still gets Terri up a couple times a night due to leg spasms. |
| Jake is going to a Brewer's game on Thursday. He is looking forward to that. |