| July 11, 2000 - Day 2 Jake had a 6 hour surgery today and will have another 4-6 hour surgery tomorrow. |
| Today went well. His surgeon is Dr. Raj Rao, who is a soft-spoken, caring man. He spend a long time with us; explaining everything... answering all our questions. Dr. Rao went in from the front, removed bone fragments, did a bone graft from Jake's left hip, and inserted internal fixation devices at C4, 5 and 6. |
| Then we had to decide whether or not to leave the trach tube in for the next surgery. Because Jake has Attention Deficit Disorder (ADD) this decision was even more difficult. The deciding factor was the knowledge that an emergency ET tube insertion would be dangerous for a C-spine injury. And so Jake is spending the night with that tube in him. |
| His anesthesiologist, Dr. Laurie Amundsen, is a remarkable person. She insisted we make that decision, but spent a very long time with us, explaining everything. She is the one who brought up the fact that Jake's ADD is a big factor in regards to the tube staying in over night. |
| Please pray for him. Pray that God keeps him strong. Such a long road ahead. He is 17 years old. |
| Please add a small prayer for his mother, Terri. Her total belief in God's will is keeping her strong. |
| July 12, 2000 - Day 3 He spent a fair night. The trach tube was a constant irritation, but he was sedated with morphine and versed. |
| Today Jake had a 4 hour surgery on the back of his neck. Dr. Rao basically did the same thing they did yesterday except 2 long internal fixation devices were placed at C-3,4,5 and 6. Yesterday one shorter device was placed from the front. |
| He had the trach tube in since yesterday's surgery. It was terrible for him but fortunately, he will not remember this. The trach tube extended from his mouth down to his trachea. He managed to push the mouth piece from his mouth a few times. Finally, they taped it down. |
| This surgery was more dangerous because they had to turn him, and there was the danger of more damage to his spine. |
| The surgery was successful. It was a good day for us. The trach tube was removed right after surgery. |
| We are told he will probably be discharged from SICU tomorrow, and then admitted to Rehab, which is also at Froedtert hospital. |
| He cannot have visitors yet. We will let everyone know when the doctors give their ok. |
| His feet are swollen. We are told this is to be expected. It is due to poor circulation. Even though he has wraps on his legs that gently inflate/deflate, the veins in his feet are having a hard time getting the blood back up to his heart. So we were told to move his joints. All of them, not just his feet. The more we do this, the better it will be for him. This was great news for us. It gives us something to do and for this we are grateful. |
| He is starting to develop skin irritation on his lower back and his right heel. Even a wrinkle in the sheet can cause this because his body does not move. |
| If you ask him, he will move his arms up to his head. But he has trouble getting them back down. That is the only part of his body he can move, beside his head. |
| Today communication was difficult, because of that tube, but on Monday the nurse asked Terri for Jake's social security number. Terri didn't know it, but Jake rattled it off immediately. |
| Please pray for him. The road ahead is a rocky one. |
| July 13, 2000 - Day 4 I saw pain and fear in my grandson's eyes, and all we could do was wipe away the tears. The tube was back in his mouth and he could not speak to us. |
| This was not a good day. We were warned, over and over again, by many people, that it would get worse before it started to get better. But yesterday went so well that we forgot their words. |
| He is in critical condition. During the night he developed breathing difficulties. Finally, they had to put in another ET (trach) tube. His respirations and oxygen (in his blood) saturation levels were very low. |
| They had to decrease the morphine because it interferes with respiration. Consequently, he was more aware of his immediate difficulties. Hence the increased pain, and panic. |
| They also inserted a tube into his stomach. Very dark (old) blood draining from this tube. They gave him Pepcid. The good news is that it's dark blood not bright new blood. |
| He also has a fever. His temp is hovering around 101.8. So they started him on an antibiotic. |
| During the morning hours his breathing became progressively worse. They thought he may have a collapsed lung. The decision was made to perform a bronchoscopy. This involves inserting a scope into his mouth and going down into the lungs, seeing the problem(s) and fixing them. He had a lot of "junk" in both lungs. They removed the "junk", then took "washings" to analyze so they could determine if he had an infection. He has a partially collapsed left lung, and a small spot which shows early stages of pneumonia. They are watching this; he has a chest x-ray every four hours. |
| After the "bronch" he improved. His color was better; he was much calmer. His blood pressure was higher. |
| Pastor Pickhardt visited, and we were able to pray together. Jake nodded his head that he wanted that. |
| Please pray for him. |
| July 14, 2000 - Day 5 Jake had a bad night. Respiratory problems again. He developed a pneumothorax; they had to put a tube into his chest. |
| All day he was restless. He still has the trach tube in him. He has come to accept that. He doesn't bite it anymore. When he does, they put a bite guard in his mouth, and that is even more uncomfortable. He's not as frightened as he was yesterday. Maybe it's not as bad; maybe he knows everyone is trying to help him. I guess we won't know till he can tell us. |
| They were finally able to wash his hair, and that made him feel better. We asked him if he wanted us to cut it real short - told him to think about it for a couple of days. He does not have long hair, but a buzz cut would make him more comfortable. |
| His temperature is pretty normal now, about 99.7 average. Blood pressure seems to stay around 105/55. |
| They placed a bubble air mattress under him. I assume that is to forestall bed sores. |
| He has a couple signals he uses to
communicate with us. If he blinks an eye, he wants it rubbed. If he rolls
his eyes upward he want the cloth on his forehead
changed. If he wrinkles his nose he wants it scratched. But when his mouth
starts moving we call the nurse. They have a fantastic sense of what he
needs/wants. Side note: I felt so sorry for his frustration in not being able to talk that I foolishly blurted out that when he was able to talk I would sit and listen to him until he got tired. He looked at me and grinned. Now, anyone who knows Jake realizes what I am in for. :) The only person who liked to talk more than Jake was my husband. |
| He had a lot of mosquito bites from the City Beach. The bites on his face and neck were torturing him, mainly because he couldn't scratch them. They've calmed down now. |
| Later in the day we were informed that Jake has pneumonia. The culture came back positive for gram negative hemophilus influenzae. They are considering doing a tracheotomy. (that is the cutting into the neck, and trachea, so a breathing tube can be inserted) |
| He is still in SICU. His condition is still critical. Please pray for him. Maybe since this is Friday we could pray double-duty. |
| July 15, 2000 - Day 6 Somehow he managed to work the tube out of his mouth. It must have taken him hours and hours to do this. Unfortunately, they had to sedate him and put it back in. They used a drug that made him confused and forgetful. He kept asking why he was in the hospital, and why he couldn't move his body. The bad part was every time he dozed off he would awaken and ask the same questions. The drug finally wore off about noon. |
| We found out that they usually can't do a tracheotomy for 7-10 days after surgery. So he is going to have to contend with those tubes. |
| He had another bad night. Respiratory problems. He is getting an antibiotic for his bacterial pneumonia. The left lung still has air in it. |
| He is getting very frustrated and anxious. He wants to get up and take a walk. He wants to move his head. He wants us to take him home. I've timed him. He rests for 2-3 minutes, (sort of drifts in and out of sleep) then starts moving his arms. He wants his bed raised, then lowered. He wants ice, then water. He wants to know why he can't go home. He wants to know when the tubes will come out. He wants us to remove the cervical collar. This goes on for about 10-12 minutes, then he'll rest for about 2-3 minutes and it starts all over again. |
| A lot of this restlessness is due to his attention deficit disorder. They are going to start his Ritalin again in hopes of helping him calm down. |
| This is made more difficult because of the communication problem. He can't talk. He can mouth words (with two tubes in his mouth) and move his eyes. When Terri can't figure out what he is saying, and it is the height of his frustration, he shakes his head so vigorously that I can't stand to watch. Dr Rao has assured me that Jake can't hurt anything by these head shakes, but it's not fun to watch. |
| Dr Rao comes in every day. He explains everything that is going on; answers all our questions. |
| Terri and I think maybe, just maybe, he is a little better today.
Even though no one will admit it. We come to this
conclusion because of his behavior; his restlessness. Yesterday he was
agitated, but it was mostly respiratory. They had
to keep giving him treatments - chest slaps and suctions. Terri and I were
constantly being asked to leave. Today - no slaps on the chest, we weren't asked to leave except when it was time for clean-up, changing the sheets, etc. |
| Your prayers are helping. I know they are. Thank you. |
| July 16, 2000 - Day 7 Jake had a good night. His oxygen is set between 30% and 40% now - the lowest it's ever been. They have increased the morphine, so he is resting more comfortably. He is calm today. |
| His first remark to us today was "I want
to go home". His second remark was "I want a hug, I want to hug you". Now the first remark was easy to understand. (remember he still has 2 tubes in his mouth) but the second one took a while. |
| He slept most of the day. His oxygen saturation levels are better. Hopefully, a couple more calm days and he can have those tubes removed. |
| They removed the chest tube tonight. They also started him on tube feeding. |
| He gets one session of physical therapy every day. Naturally, this will be increased and become much more intense when he is off the critical list. The therapists are fantastic people. Showing us what we can do, how we can help him. |
| They want us to keep his arms extended whenever possible so his muscles don't contract. He can move his arms to his shoulders but then they just lay there. He cannot get them back down. Most of his strength is in his shoulders, favoring the left side. Some strength in his lower arm. Nothing yet in his hand/fingers but at one time he said he can feel it when we touch his thumbs. That could be wishful thinking. |
| When he brings his arms up, they sort of flop where they may, and he keeps hitting his left elbow on the side rail. He really jams it in there. They have put an elbow guard on him so he doesn't hurt himself. |
| The therapists don't want us to extend his fingers when his hand is straight out, only when his wrist is dropped. This will aid him in grasping items. |
| They have put boots on him so he doesn't develop a foot drop. |
| People have been so kind. Thank you for
your prayers and letters. He has made it though another day, and tomorrow looks brighter. There is always hope. Please keep praying. |
| July 17, 2000 - Day 8 The nurses moved Jake to a chair for a little while today. About 45 minutes. The wheelchair is almost like a recliner chair. Unfortunately, he couldn't enjoy it. He slept the whole time. Which is probably just as well. When he is awake, he is in pain. |
| They have him heavily sedated; he is getting both morphine and Ritalin. He slept most of the day. |
| His meds also include Ativan (I'm pretty sure that's a sedative), heparin (a blood thinner), carafate (for his stomach acid) and Nestlé’s ProBalance. (They have started feeding him via tube.) |
| Jake had new nurses today. At Froedtert, the nursing staff rotates on a seven day on, seven day off schedule, working 10 hours each day. That is good for the patient because they see the same familiar faces each day. Of course Jake is unique... they usually don't stay in SICU for 8 days. He can't leave until his trach tube comes out and he can breath on his own, or he has a tracheostomy. |
| We have been warned that he will probably
have one. If you have a trach tube in you for over 10 days there is a danger
of damage to the cartilage of your mouth and trachea. If you have a tracheostomy the tube is bigger - trach tube is like breathing through a straw. It's also easier to be suctioned when you have a tracheostomy. When he finally licks this breathing problem, they will remove whatever they have in there, and the opening will close by itself. He should be able to speak a little by covering the opening. This won't be for a while because his vocal cords were irritated during the surgical intubation, which is a normal occurrence. |
| He still has air in his lung. The doctor cannot figure out why. It is an unusual complication. |
| He has developed a sore on his lower back, so they keep turning him from side to side every few hours. He hates this. It is not comfortable. |
| The swelling in his feet has gone down. We
were very happy to see that. His left arm is swollen now. The Occupational
Therapy (OT) person noticed that. She has placed splints on his lower arms to prevent muscle contractures. Four hours on, 2 hours off. The splints are molded so that his fingers are slightly bent, and his thumb is not extended. This will be important to him when he starts rehabilitation. If you let your arm drop to your side, you will understand how they want his fingers and thumbs situated. |
| Such a lot to report today, considering he slept most of the time I was there. |
| Please keep praying for him. He is better than he was a week ago, thanks to God and your prayers. If he could shake this lung problem we could concentrate on his paralysis. |