| Friday, January 2, 2009 Dave is visiting Jake right now. It's a shorter trip for him as he lives in upper Wisconsin. |
| Jake is still battling that darn skin ulcer. He needs to have it surgically repaired again - this is my opinion but I'm sure it's true. This includes a huge huge skin graft. Also many weeks in bed. But he is on almost total bed rest now so that shouldn't bother him. He's had more surgeries than everyone combined in our family. |
| Terri & I gave Jake a wii for Christmas. He is able
to play many of the games. In fact, it's better than physical
therapy for him. I urged him to go to the forums and ask about the
physical aspect of playing certain games before he buys them. (well,
before I buy them for him:)) He has no hand/finger control, but his wrist works fine. And he uses his chin a lot. Sunday, January 4, 2009 Jake's advocate has been told that it is not unheard of for a decubitus ulcer to close before the inside heals. Jake's quality of life is zero - he is on bed rest for most of the day. He is allowed up four times a day, in 30 minutes increments. The worst part is that he is starting not to care. It would be nice if Jake lived a little closer so we could physically take part in medical conferences involving his care. The good thing is that he has an advocate that really is concerned about him. She helps him over the bumps and gets him the best care available. If Jake didn't have her, I think we'd go crazy with worry. And I plan on calling the wound clinic so we can understand and follow Jake's care. I think we would then be better able to explain them to Jake. I don't think Jake understands all of his treatment plans. He can't take notes at his meeting, and he, like everyone else, cannot retain everything that is being discussed. So please pray for us. We accept all prayers. :)
Saturday, January 17, 2008 But of course, prayers are still welcome. thank you. Sunday, March 8, 2009 He is happy. :) Saturday, April 18, 2009 The nurse showed us his ulcer. It is still big and ugly - makes the pit of my stomach hurt to look at it. But it is getting better. Of course the visit was too short but I loved every minute of it.
|
| Friday, May 22, 2009 Jake is in the hospital again. His diagnosis is bronchitis and upper respiratory infection. I am praying that it doesn't change to pneumonia. He's been there since Tuesday and he doesn't seem to be getting better, although he says he feels better. |
| His pulse ox dips to mid-80's when he is not on oxygen.
He had a CT today and today they are planning a bronchoscopy if his
condition doesn't change. The CT showed mucous plugs and atelectasis.
I personally am more concerned about the mucous plugs. All prayers are welcome.
Saturday, May 23 - 09:30 a.m.
They tried something new on him. At least it's new to him. (this is third-hand info). Air is injected into his trachea and he is told to fight it (like how could you not?). He likes it - says it makes him feel much better. He is also using that chest cummerbund apparatus that I mentioned about a year ago. At timed intervals it starts going up and down his chest hitting his body. This is to loosen the gunk in his lungs. Since he is feeling better now that means he will probably get bored. When he gets bored he starts singing Old MacDonald Had A Farm when the machine starts hitting his body. He was supposed to have minor surgery on the 28th but of course that is postponed. He is going to have the bone in his right butt shaved down a bit. They are thinking that it will heal the ulcer quicker, plus deter a new one from forming.
Tuesday, May 26, 2009 And they have finally used the P word. He has pneumonia. Prayers are welcome.
Sunday, May 31, 2009 This was an emotional visit. He was allowed to express his fears and concerns. The three of us talked a lot. Terri and I sat with him while he had his treatments, coughed, slept. We coaxed him to eat a little. It was a rollercoaster 3 days, mostly bad. Jake was on oxygen except for a 2 hour period. His pulse ox readings dipped from 82% to 100% (depending on % of oxygen he was on, plus other factors). Jake agreed to a very aggressive treatment plan. Every 4 hours - 20 minutes of chest thumping; nebulizer treatment; mucomist treatment; assisted coughs. The mucomist treatment is horrible - smells and tastes like rotten eggs. But boy does it work! The nausea and lack of appetite was partly due to the cough assists. You place your hand, palm down, on Jake's lower chest - at a guess just below rib case. You sort of feel where your hand should go. When he starts coughing he signals and you push in/up very hard. very hard... This helps him cough up the gunk. Because he is a quad he has poor lung function. He can't blow his nose. Can you imagine not being able to blow your nose? When we left on Saturday morning we were rather discouraged because his pulse ox was still down and Jake still was feeling very tired (lack of sleep), with nausea and of course congestion. Pulse ox still very low. But the treatments take time to work. We were about half way home and he called to say that he was feeling better. That perked us up! He slept most of yesterday - catch up sleep. He phoned Terri at 1:00 a.m. today to tell her that he was feeling great! Respiratory Therapy did not give him nightly treatments because they felt they weren't needed. 1:00 a.m...... let's hope his schedule turns around soon - for Terri's sake. :) I must mention that Jake is at Regions hospital in St Paul. I can't say enough about the good care he is getting. Everyone is so nice - so caring. It is a wonderful hospital. |