| Tuesday, October 17, 2000 - day 100 100 days! Jake celebrated by having another surgery. I left Froedtert at 3:00 p.m. (rush hour traffic terrifies me- I avoid it whenever possible). Jake was in recovery. Unfortunately, he was again having trouble with his blood pressure. It was hovering around 83/35. Dr Rao said that he thought Jake could return to SCI rehab instead of going to SICU (surgery intensive care unit). That will be nice since SCI rehab is his "home" right now; all familiar faces. Let's hope this hypotension doesn't send him to SICU instead. |
| Dr Rao is optimistic about the surgery. It took about 2 hours. First ENT doc went in to assess the hole in Jake's esophagus. ENT doc couldn't locate it. Then Dr Rao did his thing -removed the plate; assessed the bone graft/fusion. The screw was not loose as reported earlier by the ortho resident, the bone by the plate had begun to erode. Dr Rao says the bone erosion is minimal and that it will form a callous over the erosion. Then Dr Rao found the esophageal tear; he called the ENT doc back and ENT doc put a few sutures in it. It might not hold - esophageal tissue is very friable. |
| More good news. Dr Rao said the bone fusion (bone graft from hip during surgery #1, about 90 days ago) is healing well. Yes! |
| They closed a part of the drainage hole in his neck.. It is thought that possibly some of the continuing drainage is from reflux due to his tube feedings, but it was decided to continue with that instead of IV feeding. Jake still will be "NPO" (nothing by mouth) for about another month. |
| There is a good chance that poor nutritional intake was a factor in the tear/breakdown of the esophagus tissue. |
| If Jake bounces back from this latest surgery, and has no complications, his homecoming will probably only be delayed by a few days. The reason is that they want to closely monitor his esophagus and that darn tear. |
| Good news! My daughter Kathie just called (5:00 p.m.) and Jake's blood pressure stabilized - he is back in his room. The roller coaster is on it's way up again. :) |
| Thank you for your prayers. |
| Jake's Progress Thursday, October 19, 2000 - day 102 I didn't visit Jake today. He had a bad night and has been sleeping most of the day. So I decided to visit tomorrow instead. He is having minor difficulties with breathing; he is back on respiratory treatments. Hopefully, this is a very short temporary thing. |
| Other than being very tired, and having trouble breathing, he is feeling ok. Yesterday he had a good day. |
| I was hoping we could go outside again; it's a beautiful day. It will have to wait till tomorrow. It is so important that he get up; get out of that bed and sit up as erect as he can handle it. The respiratory problem will just get worse if he lays in bed. Maybe tonight he'll sleep better. |
| When Jake awoke Tuesday night (after the surgery) back in his room on the SCI unit, he discovered that his toenails and fingernails were red, with sparkles! No one will confess to the dastardly deed, but a certain RN is chief suspect. One of his fingers was not painted, just in case pulse ox needed to be monitored. |
| Friday, October 20, 2000 - day 103 Jake and I had a wonderful day. He was transferred to his power chair shortly after I arrived (around noon), then he went to OT for some therapy. That went well. He had a little dizziness, but was able to work around it. (he didn't have his binder on - he is trying to live without it). Then he said his stomach felt "weird" and when he was done he was going to ask the RN for some Maalox. But when we got back to the room he forgot about it, and I wasn't about to remind him. |
| Then we headed outside. It was beautiful out, though more windy than I like. My eyes were bothering me - that wind was blowing all the pollen at me. :) He didn't want to go back in. We watched the geese heading south; the workers on the scaffolding; the cars in the parking lot - everything. He kept stalling. "just 5 more minutes"; "just 5 more minutes". |
| When I finally dragged him back in he wanted to go to the cafeteria to get some Gatorade. He can put it into his mouth, then he must spit it out. It refreshes his mouth. |
| Then he wanted his neck scratched; then his Foley emptied. He did not want me to go. Naturally today I had to return to work. |
| I left an hour later than usual, but it was such an enjoyable day that I didn't mind the late hour. |
| PT has plans for Jake to get into a manual chair today. This will be first time in over a month; since before the surgery before last (the fistula drain). I hope this turns out well. The last time he was in a manual chair he was so sick he had nothing but problems. |
| His neck is not bothering him much, just a little painful. He didn't ask me to suction that drain today at all, and the bandage didn't look stained. Maybe, just maybe, this is working? |
| Can we hope for two days in a row? Let's see what tomorrow brings. |
| Saturday, October 21, 2000 - day 104 Jake came home on a pass for a couple hours. Car transfers aren't the easiest, especially in a small car. I think Terri and I did ok. We are definitely going to have to ask santa for a van. :) |
| Jake likes his new bedroom, and his new bed. He crashed for a while, he was tuckered out from the ride. As you can see, we weren't prepared for him. Have the bed but no sheets yet. He absolutely loves that bed. The air mattress (that blue thing) automatically inflates/deflates in spots all night, which eliminates the need for Terri to get up every two hours to change his position. |
| He must wear his collar again. This is slightly disturbing because we do not know why. The order was written this a.m. and we can't get in touch with Dr Rao. Jake hates it. Wouldn't you know... we couldn't talk him into getting rid of it when doc said he could, now he doesn't want it back on. I'm worried that they saw something on the x-ray he had yesterday. |
| A few of his cousins and friends visited this afternoon. Jake had a good time with his first visitors at home. He had a full day. Since he is NPO, he was also without any nourishment since 11:00 a.m. By 4:00 he was ready to go back. :) |
| Believe me, it was a lot easier getting him out of the car than getting him back IN! It was terrible. We almost dropped him, and we used the board. He said it went ok, but I beg to differ. If only we could open that car door farther; I think it would have gone better. Well, I guess we will just have to keep practicing. It's bound to get better. |
| We'd never make it in my little car. At least Terri's car is a little bigger. |
| We had a beautiful day. I don't know what Jake and I will do tomorrow. The Packers have a buy (the way they've been playing, it's probably for the better) so I guess we won't watch a game. We might just explore the hospital and the grounds. I had vague thoughts of taking him to the zoo for an hour or so, but not after today's transfers. I couldn't do it alone. No matter, we are going to have a grand time. :) |
| Sunday, October 22, 2000 - day 105 Today was beautiful! I am so lucky. I spent the afternoon with most of the people that I love. Not all, mind you, some important people were missing, but most of my favorite people were there. I am so lucky. I had forgotten that our Leitzke get-together was today. The days sort of swim together on me. :) |
| Jake wanted to go. Give a guy one taste of life outside of the hospital and he wants it all. :))) I went to Froedtert to get Jake so Terri could sew for a while. PT helped me transfer Jake into the car. Actually my car is a little easier for transfers; it's smaller, but the door opens farther, and there is more leg room. |
| We were on the road by 12:30. I found out that you have to take curves very easy when Jake is in the car. At least until he gets some balance back. Had to stop once and put the seat back as far as it would go because he was starting to black out on me. I hope this is a temporary thing with him. I think it's the blood pressure thing. |
| Terri met me and we were able to transfer Jake to manual chair without too much trouble. |
| Jake loved every minute of it. He used to work at the bowling alley where the reunion was, so he was able to talk to old work buddies plus see all the relatives. We timed it right - everyone had eaten before we got there. This was not intentional, just worked out that way. I don't think it would have bothered Jake that he couldn't eat, but this worked out well. |
| Jake started drooping around 2:30, and we left a short while after that. This is a boy who had surgery 5 days ago! He is doing fantastic! He now has felt good 3 days in a row. This is the best he's felt, the best he's done, in 105 days. And by the time he gets back to Froedtert, he will have been sitting erect, or near erect for almost 4 hours! This is music to my ears. |
| With cousin Eric's help, we were able to transfer Jake back to Terri's car. Jake wanted to come home for a while but Terri vetoed that. The transfers are too difficult. So they headed back to Milwaukee and I headed home. |
| This has been a beautiful day. The best I've seen in 105 days. I am so lucky to have such wonderful cousins (aunts and uncles too). So many loving hugs. I cherish every one of them. (Hey, cousins, haven't you noticed that we are looking more and more like our parents every day?) |
| And I have no pictures! Can you believe it? None! This is the first time I have not had a camera around my neck. I forgot. |
| Wednesday, October 25, 2000 - day 108 Another great day. The whole week has been going well for Jake. I didn't visit yesterday because of the foggy conditions. (I think it's been established that I'm a wuz when it comes to driving conditions). |
| I came at the tail end of Jake's therapy. His arms were in air splints which were attached to springs from the ceiling. Good exercise for the biceps. |
| After that we headed outside. Cloudy, windy and damp; but nice. We just sat for 45 minutes. Then we went back in - not because Jake wanted to, but my ears were starting to hurt from the wind. |
| We talked a lot about his homecoming. He is comfortable with this now. I told him we'd learn together, and we would have to take each day as it came, and not worry about "next week". |
| Jake is coming home this weekend on a pass. He will spend Saturday night here, then go back Sunday afternoon. I don't know how we are going to feed him since we don't have a feeding set-up like Froedtert does, but I guess we can just inject the stuff into his g-tube. I haven't talked to Terri about this (we don't see much of each other during the week) - she may have this all worked out. |
| He was scheduled to have a swallow study yesterday but the ENT doc postponed it for 2 weeks. She claims that the suturing of the esophageal tear did not hold, and it is too soon for Jake to take anything by mouth. He was disappointed but accepted it. |
| His discharge from the model SCI rehab unit is scheduled for Oct 31, next Tuesday. (He will have been on that rehab unit for 100 days - since about 2 weeks after his accident). Terri left me a note this a.m. saying that work on the ramp should start today or tomorrow. Since it's now 3:30 and no one is here, I guess it'll be tomorrow. :) |
| This makes me happy since we cannot bring home Jake's power chair until we get a ramp. As mentioned previously, that pickle weighs a ton (my words - I could be exaggerating a little) and no one could lift it into the house. |
| It is out of the question that Jake be left alone either in bed, or in a manual chair. At least right now. Therefore, we need the ramp so we can get the power chair so Jake can be free to move about the house and do his pressure releases. |
| This will happen. I know it will. Everything good is happening to us lately. We are on an upward roll and I hope it never stops. |
| I have no plans on visiting Jake again until Saturday. I plan on working - doing mass, non-stop coding so I don't have to work Saturday or Sunday. :) |
| We are so lucky. We have Jake, and he is coming home. |
| Saturday, October 28, 2000 - day 111 Jake and Terri arrived home about noon. He was very excited to be here. Terri transferred him to his bed for a while because he needed to be fed. (Terri will probably learn the equivalent of an RN education before this is over). |
| At 3:00 p.m. a visiting nurse arrived to help with the dispensing of the antibiotics. She stayed about 2 hours, instructing Terri in many areas, including meds dispensing, Foley care, etc. A visiting nurse will come tonight at 9:00 to see how well Terri can give Jake the antibiotic. Then at 3:00 a.m. Terri will do the job alone. |
| Visiting nurse said they can also supply PT and OT but Terri wants to see if Jake can receive his therapies at a rehab center since PT would be very limited at home - we have no machines/mats etc to work with. To our way of thinking, the only thing PT could do is range Jake, and both Terri and I can do that. |
| Terri was able to obtain a free manual wheel chair from the wheelchair recycling program in Madison. It is a beautiful chair. We were very lucky. The insurance company will only pay for one chair, so naturally we opted for the power chair. |
| We had a small crew here today working on the ramp. Dave, his brother Jim, and his sister, Janet came to help, also son-in-law Larry. This is going very slow. Dave had dug all the holes for the posts 2 days ago. So of course, I've been worried that someone is going to get hurt in our yard. We have mounds of dirt, huge slabs of sidewalk stacked on the lawn, and huge holes in the ground. Then it rained! Mud city! |
| Sunday, October 29, 2000 - day 112 Sunday did not go as well as Saturday, and I think some of it was our fault. His a.m. daily cares were off-schedule. He developed a stomach ache and neither GI drugs or a visit from a close friend helped ease the pain. |
| Our first (and biggest) mistake was that we allowed Jake to stay in bed since his gut hurt so much. Things quieted down for a while; Jake and I watched football. Just about the time the Packers lost the game, Jake started coughing (more than likely from lying in bed all day). He needed assisted coughs, which made his stomach hurt even more. Every time he coughed, drainage from the fistula oozed into both his tracheostomy (still not closed) and the drainage hole (next to the tracheostomy). The drainage was so profuse that we ran out of sterile gauze. We have been told that when Jake is discharged we will be able to borrow one of those suction machines for home use until that drainage hole is closed. That will make one job a lot easier. |
| We had a few accidental spills of medicine, which made his medication dispensing go off schedule; also we were shorted one dose of the antibiotic. Terri made many phone calls to the hospital. |
| We also failed to give Jake enough water during the day. This was usually dispensed via an iv line, which we do not have at home. Actually, they have d/c the iv, all fluids are given via the feeding tube now. We just plain forgot. |
| Terri was exhausted. She had been up during the night more than she had slept. Today she had almost constantly been involved with Jake's cares - his feeding, his drugs, his gut ache, his ranging. In between she tried to sew. |
| Now (late afternoon) Jake needed almost constant help with his drainage, and his coughing, so we faced a dilemma about how to get him back to Froedtert (30 miles away - freeway, no stops allowed). |
| We ended up packing Jake in the front passenger seat (because it tilts back), Dave drove, and Terri sat in the back, behind Jake. Then she would be able to help Jake - not with assisted coughs, but at least with the drainage. She would also be able to calm him if he started to panic. It is terrifying when you try to breathe and gurgle instead. |
| After they got to Froedtert Jake calmed down. Then he felt bad. Terri and Dave told him that they understand. After all, this has been his home for the past 3 months. |
| Dave worked on the ramp all day. It's slowly taking shape. |
| A very exhausting day for everyone, including Jake. |