| July 18, 2000 - Day 9 Jake spent a fairly quiet night. He slept most of the day today, just like yesterday. But today he is more easily awakened. He is coughing more. He needs to be suctioned (his mouth) quite often. The nurses showed Terri how to do this. |
| They have changed some of his meds. Now he is on Haldol instead of Ativan. Same results, but Haldol lasts longer. They gave him some benadryl earlier today for his nose. I think that dries it up a bit. |
| They have increased his tube feeding because he needs the calories. I mentioned to the nurse that I was sure he would prefer pizza and he started nodding his head vigorously. I thought he was sleeping. He needs more calories than usual because his internal organs are working harder. |
| The nurses put him in a chair again late yesterday afternoon, but an hour was too much for him. He kept indicating that he wanted to go back to his bed. Today they didn't put him in a chair. |
| Dr Rao allowed Jake to have a pillow under his head. He liked that very much. |
| The nurse washed Jake's hair, and he got a shave. There is so much tape around his face that we had to ask to be sure. |
| Oxygen is still at 40%. A tracheostomy was mentioned again. I have a feeling that it will be tomorrow. (July 19). He will have to return to surgery for that. If he has a tracheostomy they might be able to stop the feeding tube and he may be able to eat some food. First he will have a "swallowing" test to see if he can swallow properly. |
| They will probably remove the feeding tube anyway, at least for now, and replace it with a NG tube (naso-gastric). Right now his feeding tube is the same tube that they used to drain junk from his stomach. It goes from his mouth to his stomach. |
| The nurse explained that with the feeding tube going from the mouth to the stomach there is a slight danger of aspiration - he may have reflux from the stomach and he may breath it into his lungs. This is a slight chance, since he also has a trach tube in right now. |
| The NG tube will go from his nose, through his stomach, straight into his intestines. |
| He cannot be fed by mouth till 4-5 days after the tracheostomy. It must heal first. He has indicated many times that he is hungry. |
| Jake's stomach is functioning. That is why they can feed him via feeding tube. Otherwise he would be fed intravenously. (this makes sense, but no one told us this till today.) |
| He was running a temp of 101.8 when I left today. They started giving him Tylenol around 3:00 p.m. I would guess his temp has been averaging about 99.9 the last 4-5 days. |
| His forehead is very warm. He wants ice and a cold wash cloth on his head. But he wants 1 sheet and 2 blankets on his body. This is unusual for him; for the past week or so, he has wanted all the covers off - he was too warm. The doctor said that right now his environment is causing his temperature variations. So I said, "then we should take the covers off?" and he said, "no, if Jake wants them on, leave them on." I don't understand that one. |
| Well, another day that Jake is alive. For that I thank God and your prayers. Please remember him in your prayers tomorrow. |
| July 19, 2000 - Day 10 Last night (Tuesday) Jake's heart stopped. They coded him. Terri was alone in his room when this happened. She then learned that this had happened once before. Everyone thought someone else had told us. |
| Last week right after his bronchoscopy the doctor mentioned that Jake had an episode of bradycardia and that they had administered drugs for that. That may be what they are referring to, I don't know for sure. Bradycardia is when your heart is very very slow. |
| I don't understand why his heart stopped. Everyone has tried to explain it to us but I guess my mind was going in too many directions all at once. If I ever come to understand this, I will post it. |
| They seemed to agree that this is not exactly unexpected, and that the trach tube may, in some way, be involved. |
| This a.m. when we arrived he was in a state of panic/fear/indifference. It is hard to explain his eyes and his mood. His arms were contracted to his upper chest. The best way to describe this is: remember that crazy chicken dance - you fold your arms and pretend you're a chicken? That's how his arms were. He would not let me lay them straight. |
| His heartbeat was very slow this a.m. Got as low as 45. |
| He went to surgery at 8:30. He had a tracheostomy and a gastrostomy. The gastrostomy is for nourishment. When he can eat by mouth, that incision will close naturally, just like the tracheostomy incision. |
| He had no tubes on his face afterwards. He was back in his room and there were no tubes, no tape on his face. Oh he looked so good. His color was better too. |
| He spent a semi-restful day. His throat was very sore from the tubes. They gave us a spray to ease/numb the pain. He liked that. He was allowed one ice chip every 15 minutes, and after he realized that Terri was not going to cheat and give him more than allowed, I swear he timed it in his head. He seemed to know when he could have them. Of course, he tested her. Asked early many times. But he gave up easy; he does that when he knows it shouldn't be. We were not told how often to spray his throat, but we tried to limit that also. |
| His tracheostomy incision became painful after the anesthesia wore off. He can't feel the gastrostomy incision, so that didn't bother him. |
| We were told that we would probably have to read lips for about a week. Then, if everything goes ok, they will cover the hole, or do something, so that Jake can talk. His throat is so irritated, it will probably take that long for it to heal. |
| I asked him if his breathing is better now (the oxygen is still set at 40%) and he nodded yes. It is easier, less dramatic. Imagine breathing through a tube the size of a drinking straw. Now the tube is much larger. |
| His temp spiked to 101.3; then they gave him Tylenol and slowly the temp went down. It was 100.0 when we left. |
| Before his first surgery last week; before he took that dramatic turn for the worse, he was given a nurse call/TV adjustor gadget. A straw was attached to a machine, then situated so that he could put it in his mouth. One blow turned on the TV, 5 blows turned it off. If he sucked into the straw, the nurse came. |
| Well, he was allowed to have that again. We left on a happy note. He was turning the TV channel by himself. At least he had a little control over his life again. The happy part was that he wanted to see the TV, even though he dozed off more than he watched it. Up till now, his needs and wants revolved around ice for his head; morphine for his pain; water for his throat. He still needs and wants those things, but they are dimming, just a little, but they are dimming. |
| Terri asked him if he wanted us to read his letters and email to him tomorrow and he nodded yes. Up till now, every time we have mentioned it he has said no. |
| He has allowed us to straighten his arms. They are down by his side again. The ideal position is palms up, to strengthen the inner muscles, but today I'm content that they are by his side. Tomorrow we'll work on palm-up position. |
| Oh how the prayers have worked! God, as usual, was by Jake's side today. Thank you for your prayers. Thanks to God, and your prayers, Jake is starting to go uphill. |
| July 20, 2000 - Day 11 He had a restful night. The nurses report that his heart rate is still very low. That is worrisome to us, but at least they are aware of this and monitor it closely. |
| He is more alert today, but still drifts into sleep very easily. |
| His condition seemed to change for the better soon after he had that tracheostomy. |
| The good news is that either today or tomorrow he will be discharged from SICU and admitted to Rehab, which is 2 floors above SICU, same wing. He will be on the ventilator for a while, but they are starting to wean him today. 15 minutes off, 4 times a day. |
| This morning they had him off for just over 1 minute, as a test. He did fine. He must learn to breathe with his intercostal (rib) muscles; we use those muscles to breathe in an emergency situation. He must use them every day. |
| He wanted us to read some of his cards and emails to him today, but after reading one of them he drifted off to sleep. It's a beginning. |
| OT (occupational therapy) worked him harder today. It is going to get harder and harder. We are going to seek out and build up every muscle that he can move. |
| OT works on his upper body - they will start teaching him daily activities, grooming, communication, etc. PT (physical therapy) will concentrate on the lower half of his body. Building up strength; or just keeping the muscles from wasting away. |
| His throat feels better today. He can have all the ice and water he wants. That makes him happy. He still can't drink from a cup; he must suck water from a sponge on the end of a stick. Or chew on ice. I think he must have the swallowing study before he is allowed to drink from a cup. |
| Soon he will be able to have a few visitors. We will let you know when this is possible. I think it would be better for Jake if he would be able to talk, otherwise he will be very frustrated. We will see what his doctors say. |
| Another day. I think we are heading uphill now. There will be many difficult days ahead. Please pray that God gives him strength and tenacity. He is such a cheerful, friendly, good-natured boy. Let's pray that he retains that. |
| July 21, 2000 - Day 12 It was a difficult day. We took one step backwards, but we did manage two steps forward. Jake has moved from SICU to 5SE, the spinal cord injury unit. |
| Today is the first day that Jake is not
in a morphine haze. He is aware of his circumstances. He was worried about
his job. He had just started a job at the local Sentry store. He had been
very enthusiastic about it. We told him that if he was able, they would
give him his job back. He said "I may never walk again". He can't even wipe away his own tears. |
| So far no change in his neurological status. Some slight feeling in his left thumb; a glimmer on the right hand. Shoulder/elbow movement on both sides, but weak. We can work with that. He complains of numbness/tingling in shoulders/elbows. |
| Jake was off the ventilator for 15 minutes today. He did quite well. He requested that the respiratory therapist turn down the air flow, he was getting too much! She said he was her weird (we already knew that - :) patient - most C-spine injuries can't get enough oxygen. That lifted our spirits. The therapist said that by the end of next week Jake should be up to 1 hour off the ventilator. This schedule is 4x per day. |
| He will finally get his swallow study tomorrow. We think that after that he will be allowed to drink from a straw and/or a cup. He still can only get ice chips and suck on a small sponge attached to a stick. |
| Jake was moved to a chair today. They told him to try to manage for at least 1/2 hour, an hour would be great. He didn't like it but he stayed there for the whole hour. It made him very dizzy, but after a while that went away. As soon as that hour was up, I had to find the nurse |
| We have told him that all the therapy people are going to push him to his limits, and then ask for more. But they will not ask him for more than he is capable of giving. |
| He is still in a lot of pain, but it eases every day. The staples in the back of his neck are bothering him; they should come out in the next few days. We must realize that besides having a severe injury, he has just been through 2 major surgeries, 2 minor surgeries, in less than 2 weeks. |
| Pastor stopped again today. Jake was busy with therapists, but we had time for a prayer. |
| We are hoping that in about 5-7 days he will be able to speak. He agrees that he doesn't want visitors until he can talk. Of course, he may change his mind. We will keep everyone posted about visiting. |
| He read and listened to some of his email and cards. Terri held up some of the cards so Jake could read them. It was emotional. We got through about 10 of them. |
| Considering his age, I think Jake is handling this much better than I would have at 17. I am very proud of him. Of course, I've always been very proud of him. |
| Please let us pray that God keeps him strong. We can't discourage Jake by telling him that he will never walk again. It is difficult to find words to comfort him, yet keep him encouraged. We do not want to give him unrealistic hope, yet with God, anything is possible. |
| July 22, 2000 - Day 13 Jake spent a restless night. I suspected he might. Too much to think about. His pain med is Percocet now. It dulls the physical pain, but does nothing for the mental anguish. |
| It was an exhausting day for all of us. He fought sleep; wouldn't close his eyes. Wouldn't take a pain med. Wouldn't let the nurse give him some Ativan. Around 3:30 p.m. he finally told us why. He didn't want to sleep while we were there. He didn't want to miss our company. His nurse spent most of the night sitting by his side. He does not want to be alone. |
| As I mentioned before, we are supposed to lay his arms palm up as often as possible. He has usually allowed me to turn his left arm, but he is super sensitive with his right arm. Claims it hurts (upper arm). Usually he allows me to move the right arm a little, for a short period of time, if I hold it. Today he wouldn't let me move either arm. He is very tired. |
| I think he is frightened that he will not be able to breathe. He wants his trach suctioned all the time. Also wants his mouth to be suctioned all the time. The nurses have told him to try to swallow, it is only saliva. But he won't because it hurts him to swallow. We have been told to encourage him to try to swallow. Yeah, sure. |
| Today when they moved him to a chair it was a 2-man procedure, not a 5-man. He was situated much higher (straighter) than yesterday. Almost like sitting on a straight back chair. He did not like that. But, after twenty minutes in an upright position, he was able to be suctioned. He could not tolerate more than 20 minutes in that upright position, but stayed in the chair, in a lower position, for 1 hour, 10 minutes. Then he had near panic until they could get him back to bed. He said he felt "numb". The more we can encourage him to sit upright, the better it is for him. He is still fighting pneumonia. |
| He just noticed that one of his teeth is loose. Hopefully, it will stabilize. Probably happened in the accident. |
| I asked him if he wanted me to bring my camera tomorrow so I could take a pic of him and put it on this page. In a nanu-second he was nodding his head "yes". So hopefully, tomorrow or Monday I will post a pic of Jake. |
| Respiratory therapy started to get him to talk with the trach. I don't entirely understand the process, but she is giving him more breaths so he has volume to speak. It is very painful because his throat is so sore. He says it "feels "weird". RT said it would feel funny for a while, but he would become accustomed to it. He must get volume out to speak. He must wait for the breath. He is having trouble tolerating the pain/weirdness. I think a lot of that is because he is so tired from lack of sleep. He has insisted that the volume be turned very low, so consequently, he can't get words out very well. I think tomorrow will be better, if he gets some sleep tonight. |
| Sleep is hard for him because of his thoughts. Today he insisted that he could move his left toes. He made Terri watch. Terri told him that it was a good try, but she missed it. He said he was so happy because he could move them. He insisted that he could feel it when we touched his legs, but when he closed his eyes he couldn't tell us where we were touching him. |
| He finally had the swallow study today at 2:00 p.m. It consists of a small amount of applesauce, laced with blue dye. And some water, with the same blue dye. He devoured the applesauce. Remember, he has had nothing by mouth except ice chips for 14 days. He said the applesauce made his throat feel better. I imagine it did. The water felt good too. The speech therapist who gave him the applesauce and water said that usually she has to coax the stuff down people. Then they suctioned his trach. No blue. This is good. They will suction again around 7:00 tonight. If there is still no blue dye then he can have soft foods tomorrow. This means that when he swallows, nothing is getting into his trach/lungs. If the blue dye shows up he will have a video swallow tomorrow in x-ray to see where the problem is and how to fix it. |
| Jake was very demanding today. He had Terri and I jumping every 1-2 minutes. Then we figured out that he was afraid he'd fall asleep. Finally at 3:42 the Ativan that he allowed the nurse to give him started working and he dozed off. |
| July 23, 2000 - Day 14 Today was a good day. He was shaved. First thing he said when he saw me was "did you bring your camera?" He slept well last night - finally! |
| Today he had his glasses on for the first time since the accident. It took him a little while to get used to them. Nurses like his glasses. We keep warning the nurses that once he can talk, he won't shut up. They said they know that already. :) |
| He saw the hole in his throat today. He said it was neat. Only a 17 yr old boy would say that. |
| He was off the ventilator for 2-1/2 hours! When he realized that he could breathe for that long without the ventilator he seemed to relax. He had been terrified that he would be accidentally disconnected and not be able to take a breath. |
| Last night (Saturday) he would not let Terri leave till after 9:00 p.m. Constant demands, as mentioned in July 22 entry. We learned that after Terri left he had a temper fit, loosening his collar, and cutting his chin on the metal part of the collar. Today he doesn't remember that. |
| Today he was calm. Trying hard to keep his arms the way I asked him to lay them. He can almost move his arms palm side up, but then they flop a little toward his body. But he keeps trying, and he looks at me and with his eyes he says "see gramma, I'm trying". It is painful for him, but the physical therapist and I discussed this with him. The longer he postpones this, the harder it will become, and the more painful it will be. If he starts now, the pain will go away faster. |
| PT says the probable reason for the painful, sensitive right arm is because of all the needles/iv's that he has had, and still has, in them. |
| They put him in his chair while he was off the ventilator. He was very apprehensive of that, but when he saw that he was breathing fine, he relaxed. He still does not like sitting upright, but he tolerated it longer than yesterday. After he had been in the chair for about 30 minutes, he complained that his arms were numb again. He has this fear that he will lose what little feeling he has. The doctors have said that he will not lose what he has now. He may gain more later, but he will not lose what he has. |
| While in the chair he complained of being dizzy, so they took his blood pressure, and he passed with flying colors - 103/56. The dizziness abates after a while. I guess I'd be dizzy too. Nothing much to eat in 14 days. No exercise. Lying flat, or nearly flat in bed all day. Pneumonia. |
| And today they said that his chest x-ray showed a collapsed right lower lung now. He was suctioned a lot today. In fact, I helped. I bagged him while the nurse suctioned him. I saw a "cough assist" today, and I'm leaving that to the professionals! He is coughing a lot today, more than usual. When he needs help someone places a hand on his lower chest, I suppose right under his diaphragm. Then when he coughs, they push up, real hard. He asks for this! It helps him a lot. |
| When Jake coughs, you wouldn't know it as a cough. There is no sound. His whole chest jerks, and it's a little frightening to witness unless you understand what is happening. |
| Respiratory therapy is getting tough with him. He still insists on suctioning his saliva, and she wants him to swallow it. She wants him to drink lots of liquids. He won't because his throat hurts so much. We go round in circles on that one. He can be a very determined boy. Don't know where he gets that from. :) |
| He had a blue breakfast. Soggy rice krispies. For lunch they brought him ground hamburger, mashed potatoes and gravy, peas, applesauce, cheese soup and coffee. He ate about 2 swallows of peas and meat, then nothing more. It hurts too much to swallow. This is going to be a problem. Tomorrow they are going to start monitoring his caloric intake, and lower his tube feeding accordingly. The longer he refuses to eat, the longer he'll be on tube feeding. |
| The painful throat will not go away until the trach suctioning stops; and I suppose that won't happen until the trach tube is out. It is very encouraging that he can tolerate 2-1/2 hours off at one time. One nurse confided that with daily increases of "off time", he may be entirely weaned in a week. Oh, would that be wonderful! |
| They start PT/OT in earnest tomorrow. Very intense. He says he is ready. He wants to get out of there. Now that sounds like my Jake. Problem is, with that ventilator hooked up to him, well, everything will be a little harder, and maybe he'll still hold back because of fear of accidentally disconnecting it. |
| Pretty soon they will curtail our visiting hours because of Jake's heavy duty schedule. They will be keeping him pretty busy during the day. When I see that he is ok with this, I will limit my visiting time. Right now I think he needs us as a support team, and he'll get us until the need is not there. When the trach is gone, and he can talk, that will probably be the time. |
| He was in a lot of pain today, but we have finally convinced him that taking the pain meds is a good thing. Besides his throat, his neck hurts him. He still has the staples in the back of his neck, they hurt too. His right shoulder was bothering him today. And of course, his upper, inner arms when we turn them. I forgot to ask him if his chest hurts. (from the pneumonia/collapsed lung) He can feel hunger, I don't know if he can feel pain in his chest. |