I may not get it all done tonight, but I'll start on the amazing and heartwrenching/warming story of my cousin's grandson, Chris, who had a skateboarding accident that cracked his skull, rattled his brains, and gave him a large contusion on his left side of his brain. This is the day by day account by his grandmother, Betty, who was kind enough to update us daily. I think , now is a good time to post the whole story. Although, I never have met this young man, I hope to do so some day as I feel I know him now.My hopes and prayers go out to his family, whom have been through a heck of an ordeal. If there are skateboarders out there, take heed, and maybe put on a helment.
Day 2
Chris had a skateboarding accident last night at Bush Park. He is in Intensive Care. He hasn't spoken yet. They have him immobilized, so that he doesn't move-but has some ( few times) reflexes when they work on him. Dr Collada came in this morning and they did a second cat scan. He fractured the back of his skull. There is some swelling and slight bleeding. They are going to see if there is any change in the cat scan from last night. They will keep him sedated --I don't know how long--they don't want him pulling the tubes out of his mouth. The have had him on a ventilator since the ER to do his breathing for him. I think that is so he won't aspirate--I'm not sure.
I am going back to the hospital now--
Day 2 later
The CAT scan shows a contusion on the left side of the brain, I think it is the left temporal lobe, which involves the cognitive part of the brain. They are inserting an inter cranial monitor though a burr hole in Chris' skull so that they can monitor the pressure in Chris' brain. They will try to control the pressure and swelling with drugs. They have him on a Paralytic type drug. I think it is Manitou. The pressure is rising into the 20's and 30's. Anything over 40 will involve measures to control the swelling other than drugs. Chris is also showing signs of aspirational pneumonia.
Day 3
The pressure and swelling in Chris' brain continues to rise. The CAT Scan is now also showing a thin layer of blood pooling on the right frontal part of his brain. When he took the initial hit on the back of the skull, the brain rattled around within the skull, knocking both the left temporal and right front of the brain. They think that this pooling will dissipate on it's own.
Day 4
I wanted to let you know that my 18 year old Grandson, Chris, was in a skateboarding accident on Saturday night. He has been in intensive care since then. They have induced a coma with the drug, penta barbital.
He has fractured the lower back of his skull and has bruising on the left of his brain. His brain swelled to a critical level today, (a reading of 50 on the inter cranial scale) and they removed the left quarter of his skull to relieve the pressure. They inserted it in his abdomen for safe keeping.
The next 72 hours are critical, please pass this on to the family and be praying for him.
Day 5
They plan to let Chris rest with no CAT scan. Any movement increases the inter cranial pressure in the brain. With the portion of the skull off , there is great concern if the ICP rises above 15, for sure over 20 is critical.
Day 6
It is a balancing game with drugs to try to keep Chris' ICP down. They took him for a CAT scan today. It showed no improvement. They say there is a penta barbital (coma drug) shortage throughout the nation. Sacred Heart Hospital in Eugene sent some up. OHSU in Portland said they would send some, but then reneged and said that Chris will have to be airlifted to Portland and they will treat him there. Salem hospital has enough for 2 1/2 days.
Day 7
Early evening yesterday Chris' ICP (Inter cranial pressure) spiked to 23 and the family and chaplain were called.
He finally responded to the course of drug treatment Dr Collada called in. Dr Collada told us that he has to have stable (between 0 and 15) ICP readings for a 48 hour stretch in order to be considered stable.
It is a very critical time. Chris is young and strong and all other vitals are normal. It's all up to prayers and how strong Chris' body is now in his response to the drugs that they are administering to keep the swelling in the brain down.
We will have a shift change for the weekend and Dr. Hubbard will be the Neurosurgeon taking care of Chris.
Extra info for Chris
The first week after Chris' accident was strenuous for all. Chris was not responsive at all and was a 3 on a scale of 3-15 on the Gaslow Scale... 3 being the lowest with absolutely no responses. After his brain began to swell extensively on the fourth day they did an emergency operation (cranioectomy) and removed a large portion of his skull that allowed room for the growing inter cranial pressure. The skull was placed in his stomach for safe keeping. The doctors said they had done all they could do, but the pressure continued to grow. Through many prayers and well wishes he made it through these emergency moments.
Day 8 email to Mary Ann
Chris was stable all night. It has been 48 hours. Other than a Icp spike to 19 and some elevated sodium and potasium levels he has been stable. Everything is normal this morning and has been through the night. They have enough Penta barbital now so that scare is over. They will back off on the penta today to see if the Icp stays low.
Day 8 email to Mary Ann
Chris was stable all night. It has been 48 hours. Other than a Icp spike to 19 and some elevated sodium and potasium levels he has been stable. Everything is normal this morning and has been through the night. They have enough Penta barbital now so that scare is over. They will back off on the penta today to see if the Icp stays low.
Day 9
They have been decreasing the penta barbital, (the coma drug), all day. Because of this, his day has been unstable, and they are juggling the drugs to keep his ICP in the normal range. It has been too high some of the day (22). His heart rate, temperature, ICP, blood sugars are all higher than yesterday and they are fighting to keep all those things down. They introduced insulin today, because of his blood sugar. The didn't do the cat scan today. We pray that tomorrow is better.
Day 10
Today, we can breathe again--it was a better day. Chris' ICP has been low and stable all day. He is completely off the penta barbital, coma drug. It has a fairly long half life so will still be in his system for some time. They have him heavily sedated with a paralytic drug so that he does not move. His cat scan showed a slight improvement as far as the brain swelling goes.
They are having trouble controlling his temperature. The cooling catheter is making him shiver, so they have gone back to the old way of ice under the armpits and the cooling blankets. The blood profusion to the brain is good and always has been.
They did two surgeries on him today. One to move the cranial monitor from the left side of the head to the right. It involves drilling another hole in his skull, but they fear infection if they keep the existing monitor in place any longer. The other procedure was to address his pneumonia. The lower part of his left lung has collapsed. They went in through his ventilator tube to clear out the fluid as extensively as possible and also did a biopsy to see what drugs they are going to use to treat it. They can't treat it the traditional way, because Chris can't be repositioned just yet as his inter cranial pressure will go up. The pneumonia is of concern to the doctor and is the next hurdle Chris will face. We are so grateful for your prayers.
Day 11 was a rough day for Chris. His temperature remained high 102-105 all night and day. I don't know why, I will try to find out. The ventilator tube was not of a gauge that was large enough to easily enable the staff to work on his lung, so they performed a tracheotomy about dinner time. There were some complications. His new Bolt that they inserted on the right side of his head yesterday came out during surgery. They had to call Dr Hubbard out of another surgery to attach it. Dr Hubbard is taking over for Dr Collada, who will be away for 10 days. Another issue was that his oxygen level dipped really low so they believed that a blood clot had formed.. They took him for a cat scan, but couldn't find a clot. They brought his oxygen level up and are watching it really closely.
To do the tracheotomy they had to put him back into the coma. Because of the complications, they will leave Chris in the Coma state for 24 to 48 hours.
When they bring him out of it, he will at least have the trach and not the ventilator to do his breathing. It will be easier for him to override the trach as he starts to breathe on his own. They will also have been able to work on his lung to clear the pneumonia during that time.
His temperature remains high, even with a cooling catheter. This is of concern to the family, maybe because it is a reading that we know how to gauge. We pray that he is strong to fight the pneumonia and overcome this latest crisis.
Day 12
It was a good day today. I was wrong in that they were going to put Chris back in the coma for 24 to 48 hours. They said it would take 24 to 48 hours for the penta barbital effect to wear off. They had him on the paralytic sedative, but began bringing him off it today. They have encouraged Dennis and Julie and Chelsea and the family for the first time to talk to Chris and to touch him. They said his hearing would be the first to come back. His fever remains high 101-103. They have removed the cooling catheter completely as they can't risk infection. They will have to manage the fever the traditional way with the ice and cooling blankets. It is a chemical balancing act with the blood pressure,oxygen level,heart rate,but they are managing it. His ICP level remains in the normal range. They are working on the pneumonia. They have brought in Dr Vanderhayden, a trauma surgeon to coordinate Chris' team of Doctors and nurses and technicians.She will monitor drugs, procedures, etc. Chris is strong and I know he can beat it. He still has many hurdles to overcome before he is out of the woods. It seems we have to go one step back to get two steps forward. We pray that he overcomes the pneumonia and he that he doesn't contract any infections.
Day 13
After a rough night of 103 -105 temperatures, Chris' temperature has stabilized. His temperature, heart rate, blood pressure, oxygen, ICP all of his vitals are in a normal range. Julie has slept on the sofa in the ICU waiting room every night since the accident. Dr. Silver, the Pulmonary Specialist ordered her to sleep at home tonight. Her mother, Judy will have sofa duty tonight. The pneumonia persists and is being treated. Tomorrow, they will insert a feeding tube.
Day 14
Chris' temperature is down 101- 100- 99 ---in that range. His vitals are all normal. I believe he has pneumonia in both lungs now. They are treating it by misting and suctioning. The neurosurgeon on call removed the remaining bolt from his head. We will no longer get readings on his brain pressure. The readings have been stable for 48 plus hours. I would guess that they expect that crisis is over. They also did a procedure to insert the feeding tube in his stomach. He has not shown any signs of awakening. The family is talking to him and touching him and telling him to rest and to wake up when he is ready. Contact is limited to 5 minutes every hour.
Day 15
Chris' temperature stayed in the 100 range most of the day. They are still using cooling blankets to help bring it down. The huge development today is that he squeezed Anne's, Terry's, Betty and Julie's hand at different times of the day. Just a quick squeeze, but I know it was a squeeze and not a reflex. I think that he is hearing us when we talk to him. His feeding tube incision is healing well. All his vitals, other than him temperature are normal. He is still in kind of a neck collar. When he is able they will take an MRI to see if he hurt his neck at all.
Day 16
Last night Chris greeted Dennis, Julie and Chelsea by opening one eye (kind of just barely). Julie said "Look he opened one eye!" Dennis remembers that's what she said when Chris was just newly born in the same hospital.
Chris opened both eyes today upon initial greeting from Julie. He then closed them to a slit or completely shut.. He still squeezes hands, at times, although he is not doing so on command. The low grade temperate and pneumonia continue. He has developed a gastro type infection that they are treating with good bacteria and a change in antibiotics.
Day 17
Last night they took Chris to Surgery to put in an umbrella filter in his groin area. It will stop any blood clots from going past his legs. He doesn't have any clots right now, but they are common when patients are immobile for long periods of time. The Trauma Surgeon, Dr. VanDerHeyden did the surgery. She also did a Cat scan and felt safe in removing his neck collar. About midnight they uncrated a new bed--something that will turn and raise and shake him to facilitate clearing the pneumonia. They couldn't do this until they were sure that he had no neck injury. The new bed agitates him and he fights it, wearing himself out, but the Doctor says lots of activity is good. His reactions (hand and eye) remain the same. Nothing on command yet. I don't know if he is actually focusing on anything when he opens his eyes. He is starting to squeeze with his right hand--this is a new development. We were told that because his injury is on the left side of the brain, the right side of his body is weak. It is encouraging to see him use his right hand in this way. The physical therapist is now coming in to work with Chris. His temperature remains between 100 and 102. His blood pressure is elevated at times. They had the bed turned off when I was in there, so he got some rest.
Day 18
Chris' condition remains pretty much unchanged. His fever and pneumonia continue. He now has yeast infection in his lungs, besides his earlier infection in this gastro track. He has coughing spells when they move his bed and do his pneumonia treatments. No movement in the right hand when I was in there. He squeezes with his left hand,-- still not on command. His eyes open at times, but don't seem to see or track just yet. He mainly wants to sleep. The shutters are open in the room, the tv is on, family is in the room with him for longer periods of time. Julie has started reading the first book of Harry Potter to him. Chelsea has set up his IPod and Cd player. We think he hears, we don't know if he comprehends. Apparently the lower part of the brain comes back first-(the survival fight or flight instincts). The cognitive part is later. The are concerned about his ports being in for so long, causing infection. They are trying to draw blood, etc, through his veins now instead of his port, but can't seem to accomplish this because they can't find a vein big enough. We pray that Chris overcome these hurdles so that he can get on to the business of healing his brain.
Day 19
I spent the night at the hospital last night and will again tonight. There has always been someone at the hospital with Chris every night since the accident. Chris slept all of the night and most of the day.--Not a lot of activity. He has been over breathing his breathing machine for a couple of days now, The development this afternoon was that he is no longer depending on the machine to breathe for him. He is still getting help with the exhaling, but he is breathing on his own. I would hope that this means that his pneumonia is getting better. He is still running a temperature. Don't know about the infections--hopefully the antibiotics are doing what they are supposed to do. We think he hears us but is still is not responding to commands. He mainly wants to sleep. I suppose that you can say that he is still in a coma--but not an induced coma. His neurosurgeon, Dr Collada will be back on Monday. We really haven't been getting any neurosurgeon feedback since he's been gone, maybe because they won't be able to tell anything until he wakes up--anyway it will be good to get his report on Chris' status, We must be patient. We pray that he wakes up when he is ready.
Day 20
After a quiet night, Chris was a lot more active today, the physical therapist saw more movement on his right side than she did a couple of days ago--still nothing on command. He was really moving his left arm and leg-not on command either. I wonder if they will have to restrain him so that he won't pull anything important out. He seems really agitated with his bed that moves and shakes him--but his pneumonia is breaking up. In fact, they are moving him tomorrow to the 6th floor. I suppose that means he is no longer in critical condition or that he is critical but stable. Whatever it is--it's a another hurdle he has overcome. Yea Chris! Part of the 6th floor is the Neuro unit, so that is where he'll be. The Neuroligist--Terry Taggart (what are the chances--no relation) says that it is going to be a long haul, months and months --some steps back, a plateau, some steps forward. Still need someone to tell me if he is still in a coma or awake or awakening. Dr Collada will be back on Monday.
Day 21
They moved Chris to the 6th floor Neuro Unit late this afternoon. He has been very agitated and aggressive all day. They will have a nurse sitting at his bedside all night, so that he does not strike out and hurt himself. I think that they have removed all tubes and monitors other than his trach and his feeding tube. They don't want him pulling anything out. He is breathing entirely on his own now. His temperature is in the 100 range. The pneumonia is getting better.One notable development is that he is moving his RIGHT arm now--quite high actually. That is encouraging. We have the Pulmonary Specialist, Dr Silver saying this is all reflexive movement --but we'll take it. Baby steps. We are still waiting for the cognitive part of the brain to fire up.
Day 22
The did a CAT Scan on Chris this morning and found a clotting of blood (a small amount) and fluid on his right frontal brain. They had seen this on previous CAT Scans, but thought that it would have dissipated. It did not, so they did surgery tonight at 7pm to relieve any pressure that was forming. They thought it was an epidural hematoma (sp?) which would have been between the skull and the lining of the brain. Instead it was a subdural hematoma which is between the brain and the lining. I would guess a little more complicated. Dr York (female) did the Surgery. She said it went well and it did relieve the pressure. She said that he might be a little more perky now. I don't know what that means. He's aggressive as it is. He went directly from Surgery back to ICU. They will have him back on the ventilator, but it will go through his trach and not down the throat. A necessary step back. We are praying for a good night and a short stay in ICU.
Day 23
Last night and today were rough for the family as Chris' blood pressure was extremely low. At one point 72/20. Dr Collada is back and explained that the stress of the operation has his hormones and electrolytes all out of whack. His hypothalamus is not able adjust under stress. The are adjusting for that with medications. It's kind of back to the balancing act that they were doing a couple of weeks ago His temperature is down to the 99-100's.. He did say that the last CAT scan showed less pressure on the right side of the brain than before the surgery. The pneumonia is looking better as well, but not completely gone. He has a lot of coughing spasms. They are taking him off the ventilator to the next step down in a breathing aid. They will wean him off that as well before he goes back up to the 6th floor, which should be in a couple of nights.
Day 24
Chris had a quiet day today recuperating from surgery. His blood pressure was in the normal range. He still has pneumonia and is coughing some. His temperature in the 99's. They sedated him so that they could do an EEG, so he slept a lot of the day. They have him in restraints so that he won't pull his tubes out. He does not have a nurse in the room at all times, so the family members are taking shifts staying with him. It looks like they are getting things back in balance.
Day 25
It was good day for Chris today.-- I guess I should say- a good day for the family. He still has pneumonia, a stomach bug, low grade temperature and now a bedsore. Family members took turns talking, telling stories and reading to him. We want to think that he was responsive at times. I thought he shook his head "no" when I asked if he wanted me to keep reading. Other family members had similar incidents to report. Doctor Silver says it still could be reflexive. They will move him out of ICU and to the 6th floor, when they find a room near the nurses station. --Probably tomorrow.
Day 26
They moved Chris out of Intensive Care and up to the 6th Floor Neuro Unit late this afternoon. He is breathing on his own through the trach and he has the feeding tube. They are giving him Providual (sp?) (kind of like a Ritalin type drug) for the agitation. It helps to calm him down so that he can focus. No real response to commands yet. Even if he was capable of responding, he couldn't talk because of the trach. His eyes follow light and sound at times. He has periods of sleep and a kind of "awake" stage. Dr Collada said that this is not a couple of weeks recovery.--- It's going to be a long, long haul. We have the ipod set up and playing, pictures hanging from a mobile, the football game on--anything that may stimulate the cognitive part of his brain.
Day 27 and 28
Friday was a rather uneventful day for Chris. But all his vitals were stable--no high temperature, the pneumonia is better although still no response to commands.
Today, Saturday was a different story. This was the breakthrough we have been praying for. Chris did indeed respond to Dr. Collada to hold two fingers up, stick his tongue out and squeeze his hand on command. The nurses think that Dr Collada said "Holy S--t!" (in surprise?) and then right away he said "We're getting him up? So with the help of two male aides and Julie and a nurse, they sat him up on the edge of the bed and stood him up briefly. The family interacted with him for the next couple of hours. We saw expression and what we thought were smiles. He can't talk, because of the trach. They put a device on his trach to take air in and then it closes so that he exhales out of his mouth. This will also enable him to make sounds when he is ready. They wanted to make sure that he knew how to swallow properly--He did, so they left the device in place His eyes focused on people as they moved about the room. There were other times that he slept and slept. He still has a long, long way to go. We won't know the long term outcome for quite a while. Dr Collada is being very aggressive to stimulate him in any way possible and urging the family to do the same. We are so thankful for your energy and prayers to bring Chris back to us.
Day 28 7:30pm
I just had to let you all know--Dennis just called from the Hospital--Chris TALKED!!! They nurses and the lift team were moving him to on to his side, when he said "I'M THIRSTY!" --"IT HURTS! There was a bit of an alarm right after that--he may have got mixed up on his breathing or he may have had a panic attack. I don't know what they did--but hey got him settled down. I don't know yet if they sedated him or gave him oxygen or what. I will learn more about that later. We are so thankful for this wonderful day!!
Day 29
Chris' panic attack last night was actually a clogging of mucus in his trach tube, which was cutting of his oxygen. They called the Rapid Response Team who took of the trach Device, the Perry Valve and suctioned out the mucus. They are giving him misting treatments all day and put the Perry Valve on again this evening for just a half hour or so. We were all there anxious to hear him talk..
I don't know if he was exhausted or just couldn't think, but his words were not very understandable. I think that he was bewildered. He couldn't identify anyone. It was almost like he was drugged. The nurses say he hadn't had a painkiller since the morning. He did have fleeting moments during the day that seemed to us through his facial expression and smiles that he was there. I hope he can rest and try again when he is ready.
Chris was agitated during the day, pulling at his tubes, feeling around his head. His sitter and the nurses were busy wrestling with his arms. He tried to roll over and said (out of his trach, with no perry valve in place)--"It Hurts", grabbing at his head. We called for the nurse and pain medication--(phentenal and vicodan). While she was getting it ready he said "Get me out of here" and "I want this S--t to be over with".
Amazing! Something about adrenalin and distress that makes those words un garbled and forced through his trach. They should bottle whatever it is, only without the panic that goes with it. Anyway he settled down with the medication and stared at the TV.
Dr. Collada held his hand out for Chris to shake this morning and Chris did--(the left hand though). He wasn't having any of the "show me two fingers " stuff. Dr Collada explained to me that his threshold of how much annoyance he can take is like 20 times less than you or I. His fatigue level is 25 time less than us. His said that his progress will be slow over rolling hills, with rises and dips, but the goal is for the trend to continue to go upward. We should expect the dips and look at the long picture. They did another CAT scan today. They will be sending the Physical Rehab and the Occupational Rehab in tomorrow. He explained how his brain is disorganized right now. The Pyschosists (sp) work with him to make it more organized. They also have fitted him for a helmet, so that he will not harm himself.
Day 31
Chris would not respond to Dr Collada today. He looked at the Doctor, but did not respond to shaking hands. He was not responsive to Dr. VanderHayden either. There was about an hour when he was responsive----again when he was in pain. He was able to get out ""Headache" to Julie. She asked if he could say "Mom"--he did.
He was also alert when Rocky and his brother came in to play the guitar for him. Physical Therapy sat him in a chair, stood him up--assisted him to shuffle 6 steps or so. He was hesitant to put weight on his right leg. He can make the step with it, but he probably doesn't feel confident about it bearing weight. He has his helmet now and they put it on him when they exercise him. Mostly-- he slept all day. He looked very peaceful. He is getting his pain med's. Still on antibiotics for the pneumonia, still on the trach until his brain is able to handle his breathing and swallowing functions, entirely. Dennis stayed in his room with him last night and will again tonight.
Day 32
It was a busy day today. They took Chris off the Trach! --so he is able to talk. He is off the IV as well. His med's go through his feeding tube. He gave no response to Dr. Collada or Dr. VanderHayden, but a new Doctor, Dr Bennett, the Pituitary Specialist came by and Chris shook his hand and said "Hello Sir"" He mumbled words and sentences all day long, we caught words like football practice", "acting in a play" "camping", "boating" "Chelsea", "sorry, love". Lots and lots of numbers. He looked at the clock and said "five twenty"--it was 5:20. He answers "yes", "No", "okay", "All right", "Pain med's", lots of gibberish and then finally, just sweet sleep. It is like he is delirious,coming out of a fog, or a dream, or a nightmare. Even so, we are happy for all this. As his brain heals, he will be better able to organize his thoughts and his speech. His Speech Therapist was in today as well. She had him try a few sips of water to see if the throat muscles work-----they do. She said that many times when one has been intubated and on the trach for such a lengthy period, there is nerve damage. They will try to introduce food next. The Physical Therapists had him walk back and forth in the room (with the aid of a walker and a man spotting him on each side), sitting to rest in a chair a couple times in between. I counted 80 steps! Chris said "it hurts all over". --I'll bet it does. He felt around on his head last night. He said to Dennis, "My skull is gone". Dennis soothed him and said it was safe and that part would be back on soon.---Dr. Collada said--"Next week", if all goes well. I dread another operation! Our prayers have brought us this far. We pray for the outcome of the next hurdle to be successful as well.
Day 33
Chris' Physical Therapy continues to progress. They walked him down the hall 70 steps today and then back another 70. The weakness on his right side was not as noticeable today. He followed commands for the Physical Therapists to lift legs, shake hands, show two fingers, etc. He sat in his chair beside his bed for a long while. He held a cup--only got three sips of water down in 45 minutes. He was shown pictures of fruit--doesn't respond when asked to name the fruit. Didn't seem to be in as much pain. Lots and lots or mumbling, mostly with his eyes closed. He seems to be able to come out of it to answer questions and then goes back to his world.
Day 34
Chris' day was much the same as yesterday. They walked him up and down the hall again. Wouldn't drink water or eat jello for the Speech Therapist. Annie came to sing and play the guitar for him. He told her it was "awesome." Lots of mumbling. We are catching more words. He looks puzzled that we don't understand him. I'm sure it all makes sense to him. He recognized people in pictures--Stevie, his grandparents, Miles, Rocky and Zak. (He couldn't do this yesterday.) His pain seems like it is less and less. He had big smiles when his little cousins, Sidney and Stevie came in. He recognized Michele when she came in and said her name. Baby steps, but Huge for Chris and for us.
Day 35
Chris walked up and down the hall again. He attempted to brush his teeth. He had a ball in one hand and a toothbrush in the other--he brushed his teeth with both. He's not interested in drinking or eating, which is beginning to be a little bit of a concern to me, as he has lost 40 or more pounds. They, of course are still feeding him by feeding tube. They have taken him off of insulin as his blood sugar is now in the normal range. They have taken him off the Cortisal (sp) as well. He is non-stop talking--I don't know in what language. In between he is sometimes able to say his name when asked. He knocked my socks off when he said his birth date--December 7. He didn't respond to what year. I know it's all in there and I know that he is trying hard to get it out. We must be patient.
Day 36
No Rehab on any kind, today, Sunday. They took Chris for a Cat Scan. The Doctors will have a meeting tomorrow to discuss when they will put the cranium back on. Chris slept a good part of the day. When he's awake, he is talking in his own world. He seems to be getting automatic at times with the social graces--Hello, See Ya, Thank you, All right, Okay, Got it, Ready. He also has a few choice words he uses when agitated. He seems to be agitated a lot. I don't know if it is pain as much as just his heightened perception to stimuli.
Day 37
Chris had a very agitated night last night. They called Julie at 3:30am to come down to the hospital to see if she could calm him down. He did calm down a bit in 1 1/2 hrs. The rest of the day was really pretty good. He did his physical therapy twice--about 240 steps each time. He brushed his teeth, he drank his water and swallowed. When I was there, he was pretty much fixated on getting something out of his mouth--could have been a piece of skin from his chapped lips. He had a glass of water in one hand and a spitting dish in the other. He was able to coordinate drink, swizzle, spit. That got old--then he just would wipe the spit with a wash rag and then his blanket or pillow or whatever was handy. Pretty amazing for someone that couldn't even put his hand to his mouth a week ago. Pretty much did all the things that he is expected to do at this time. No word on the CAT Scan or when they will be doing the cranium reset. I think they gave him something to help him sleep tonight. Dennis will be spending the night in his room.
Day 38 Morning
I just had to tell you all this before I went to the hospital. Dennis called from the Hospital about 6:30am to say that Chris had written his name this morning!!!!. Yesterday, Dr Collada had introduced a clipboard with a 8 1/2 x 11piece of paper clipped to it. It had in large letters, almost took up the whole sheet--'CAN YOU WRITE YOUR NAME". Chris did not respond to that. This morning Dennis and Grandpa Terry noticed that Chris was at times a little more lucid through his fog. He was throwing a ball to Dennis. Dennis would say,"Okay throw it to second " and Chris would say "No, to third this time" This is with a lot of mumbo jumbo before and after. Grandpa Terry brought the clipboard and a felt pen over to Chris, and Chris transferred the pen to his right hand and every so slowly started to write a "C" . Dennis and Grandpa waited for the "H", but Chris wrote an "A" and then the rest of the "CAN YOU WRITE YOUR NAME", but he had it a little askew. It went 'CAN YOUR WRITE YOU NAME",--something like that. But what was amazing was that at the end of that he wrote "TAGGART" --ever so slowly and not as legibly as he was fatigued by then. This is soooooo HUGE! He is coming back to us little by little.
Day 39
Chris was very agitated last night. Dennis wrestled with him all night and Grandpa Terry came early morning and did more of the same. He had a period where he was responsive to therapy. They tried to get that done in the morning. He drank water, but wouldn't eat. He did his walking. When asked who Julie was- he said "That's my Mom". His Trach incision has been healing nicely, but he poked around during the night and opened up the hole again. He has been very agitated about his catheter and pulling at the tube. They decided to remove it, which was not an easy matter. It has been in a couple of weeks, but for some reason, it did not come out easily. It was very painful for him when they tried to remove it. They called in a Doctor and gave him morphine for the pain--Hope there is no bladder infection. So now he is free of tubes other than his feeding tube in his stomach. Dr Collada was in this morning. He will do the skull surgery on Tuesday.
Day 38 Night
The rest of the day went really well for Chris. He walked the Halls of the hospital-twice--360 steps each time. He is walking without the aid of the walker. They have a belt around his waist that they can grab him with, if he falters. There is a Physical Therapist on each side of him, but it looks like he is bearing all the weight on his own. He is walking a quite a fast pace now. He looked in a hand held mirror for the first time. He looked at his teeth, cocked his head from side to side, stroked his beard, and felt his injury site on his head. He said "I"m okay, I'm fine". He drank his water and swallowed. He is no longer on antibiotics. He greeted Aunt Michele's 2 year old son, Kaz , with "Cool, Dude"" He loves the little ones, he had a big grin from ear to ear. No agitation today. He seem quite happy that we can pick out a couple of words out of his talking, and we seem to communicate on some level. Dennis was switching the Channels on the TV and Chris said "No --go back" . Dennis went back to the Cartoon Channel. Up to now, we really didn't know if he was actually understanding anything on the TV. A nurse asked about a guitar in the room. She asked who played the guitar and he said "Matt played".--(Rocky's brother). He said he wanted Zac and Rocky to come to see him. We caught words like "Going fast", "Board", friends. Dr. Collada saw Chris' printing today and said "It's all in there". The surgery will be at the beginning of next week.
Day 39
Chris was very agitated last night. Dennis wrestled with him all night and Grandpa Terry came early morning and did more of the same. He had a period where he was responsive to therapy. They tried to get that done in the morning. He drank water, but wouldn't eat. He did his walking. When asked who Julie was- he said "That's my Mom". His Trach incision has been healing nicely, but he poked around during the night and opened up the hole again. He has been very agitated about his catheter and pulling at the tube. They decided to remove it, which was not an easy matter. It has been in a couple of weeks, but for some reason, it did not come out easily. It was very painful for him when they tried to remove it. They called in a Doctor and gave him morphine for the pain--Hope there is no bladder infection. So now he is free of tubes other than his feeding tube in his stomach. Dr Collada was in this morning. He will do the skull surgery on Tuesday.
Day 40
Chris acted like he had pain in his stomach today. They took him for an xray. It might have something to do with his feeding tube or perhaps the way his stomach is digesting his formula, or maybe the stomach can't handle the amount of formula. Because he has lost so much weight they don't want to cut down on his calories. Chris will still not eat food by mouth. He had a good day with all his other therapies. We finally had a speech therapist work with him on his speech today--all this time they have been working on his drinking and swallowing. The Therapist talked with the family today and said Chris has a type of afasia, called "fluent afasia", where he talks fluently in all the intonations of a fluent sentence--only it is a "made up " language. She said that he may have 15 percent of words that he uses appropriately-usually at the beginning of a sentence, or when he is greeting someone or saying goodbye, then maybe another amount--maybe 20-35 percent that are English words, but not having any order or anything to do with the topic. Then he has the majority of words that are jabberwocky. Their goal is to work with Chris until he is using appropriate language most of the time. She said that she is encouraged that Chris' speech has improved since he was first seen and that she is able to get his attention to listen when she calls him by name and asks him to listen. --In severe cases, the patient does not understand you and does not understand what he himself is saying. She mentioned something about the auditory connection--he can't understand what he hears coming out of his mouth in order to correct it. In severe cases the final results may not be very impressive. She seemed to think that Chris will continue to improve as his brain heals. She also said to limit the amount of people in the room to two at a time. Turn off the loud music and television, and people talking to each other, when we are trying to get his attention. It's like learning a foreign language, he has to have few distractions and have things quiet and calm when he is trying to concentrate. We had been told, as he was coming out of the coma, to bombard him with stimuli to tap into whatever would bring him out of his coma. Now the speech therapists are saying--the room is too busy, take all the cards, pictures, stuffed animals, hanging things and put them in a drawer for later--just have a few familiar things around. Bob and I went to Good Samaritan Hospital in Portland (RIO) today to look at their Rehab facility. We have contacted the University of Washington Hospital Center, which is rated 3rd in the nation for Brain Injury. I have also talked with the people at the Craig Hospital in Denver, Co, which specializes in Brain and Spinal Cord injury. They are rated 6th in the nation. Dr Collada and the Speech Therapist seem to think that the 12 bed Salem Rehab unit on Center street can do the job and the family would be nearby. --Don't know yet what insurance will cover and what will be best for Chris' and his family's needs. This "fluent afasia" is yet another hurdle for Chris. We don't know what other cognitive issues may be involved down the road. The therapists and doctors say, as they have before, Chris is young and strong and his brain has plasticity. Young people can do amazing things. We are not talking short term--time in Rehab, time in outpatient rehab, will take months and further healing can still continue for years. We pray for him to recover 100%.
Day 41
They have taken Chris off Providial (Sp?), the Ritalin type drug. It is not meant for long term use. They want to watch him for a couple of days to see how he does without it. He refused to do any walking and was agitated when the nurses insisted. I think he took a swing at one of them. I asked Dr York if being off the drug would cause him to act this way and she said, --usually just the opposite. She would expect him to be lethargic, which could explain why he wouldn't walk. This morning Grandpa Terry gave him his erase board and pen and asked him if he could write his name. Chris wrote "Chris Taggart friend with Miles" clearly and then maybe another sentence that wasn't as legible. Just a little later Miles and Zac stopped by to visit. Rocky, Derek, and Matt stopped by the night before. Chris really turns on when his friends visit. Miles and Zac said Chris told them to"Go". Hope no one gets offended. It is actually good that he can communicate that he is tired. He had a good session with the Speech Pathologist. She had him responding appropriately for 7 minutes or so. She was pleased with this. Dr York is covering for Dr. Collada this weekend. She hadn't seen Chris in a week or so. She said that she could really see the improvement and said that she would expect him to continue to improve. The Speech Therapist worked on Chris pointing his finger at something, so that if he couldn't remember the word for it he could just point to help communicate. Dennis said that as he sat reading a PC magazine next to Chris' bed, this evening, Chris tapped Dennis on the shoulder and pointed to a picture in the magazine. Dennis explained what it was and Chris said "Nice". They have taken off the Velcro type bandaging that covered Chris' stomach and chest area. He was constantly tugging at it. Dennis thinks that the Velcro tabs might have been itching or scratching him. So, now he is able to fidget with the feeding tube that goes into his stomach. He seems to not be pulling or tugging at it. When they were inserting the formula in the feeding tube this evening he looked directly at the male nurse and said "Careful".--- So many more words today that are appropriate. I know that this is all going to be routine soon, but I just want to document everything so that I can look back at it later to see how far Chris has come.
Day 42
Chris made up for his lack of walking yesterday. He did the loop around the 6th floor Neuro Unit, and past by his room. Julie said he needed to turn into his room. He said "No" and did another loop. He did all his other therapy and was pretty tired after that. He wanted to talk a lot today. I think the gest of it was that he wanted to get out of the hospital. I caughto t a lot of words pertaining to that. Again, a lot more English words today and more of them pertaining to the topic. He also has a lot of made up words, especially when he is not engaged in talking to anyone in particular. He was very sure that he did not want to write anything today.
Annie came to visit. Every day shows a tiny bit more progress. I'm starting to clear out some of the things that I have brought into his room. Apparently, after his Tuesday Surgery, they are planning to discharge him on Friday. Of course, that is if everything goes well. It seems way to soon after surgery. Hopefully, they'll keep him over the weekend. Then it is off to Rehab.
Day 43
Chris had such a good day!! He had company for about 4 hours and was on top of his game. He lifted himself up off his pillow to give me a big bear hug. He held court with family and friends -- Rebecca and her Mom came and Chelsea and Mike. Mostly meaningful words while I was there and when he went into Jabberwocky, we could usually still get the drift. It is soooo encouraging to see the old Chris for such a long period of time. No physical therapy today. Julie and the CNA couldn't get Chris to walk, but the Lift team that has been following Chris and lifting him for 6 weeks, came by to say."Hi". He responded to them--they are young. They walked with him around the loop. When he went past the guest waiting room, Chris said "How about here". We all have been sitting in waiting rooms for so long. It has been hard to get past the day by day events to even imagine Chris sitting in the waiting room. They sat there a bit and continued back to his room. In the past he has been too zoned out to even notice where he was walking. Chelsea has been working in Portland and did not see him for about a week. Chris responds so well to her. She will get to spend until Wednesday with him. He wrote, about 3 sentences, not too understandable, but something about going to rehab, then going home and then to Zac's, where he was going to live with his friends and attend Portland Community College. . He did all his other therapies and dropped off to sleep exhausted.
Day 44 and 45
Chris' Monday, before surgery was kind of agitated, kind of good--it was not as active as the good day before. Tuesday, before the surgery, Chris had his occupational Therapy and his Physical Therapy. Grandpa Terry and I walked behind him and the Physical Therapists in the hallways. One had her hand on the back of his safety belt and the other was kind of hiking his pajama bottoms up, so that he wouldn't trip over them. One said to the other, "Are you supporting him?" The other said "No, are you?" He was walking on his own. I could see the familiar way in which Chris always walks. There won't be any gait from what I can see. Surgery was at 2:20pm for about 3 hours. Dr. Collada met us down in the 1st Floor waiting room after the surgery. He said "Its's done" (He never says "It went well"). It sounds like there was nothing unexpected. He said the last surgery site, on the right front of the brain had healed well (the clotting and fluid had dissipated). He extracted the piece of skull that was in safe keeping in Chris' abdomen and inserted it in the Left Temporal Lobe, from whence it came. He uses a series of thin metal plates that go across the portion of skull that he is attaching and screw into the stationary skull on either side. --Didn't ask him how many pieces of metal or how many screws. I'll try to remember next time. All this will become part of Chris. He said there was some fluid at the site so he put a drain in there and also in his abdomen to drain off any fluid from the incision. The scalp and the abdomen incisions were secured with staples. Dr. Collada says that Chris' skull looks like a road map, what with all the burr holes, surgery on the right and left and a fracture at the back After the recovery room, they brought Chris up to his room on the 6th floor (no ICU this time). We spent a short time with him. He was still pretty groggy and they had given him Adavan and Pain Meds, so the nurse dimmed the lights and shooed everyone out until tomorrow morning. One of the things to worry about after this surgery is the chance of infection. Dr. Collada says he only wants to do this once. We pray that Chris heals well and wards off any infection.
Day 47
We had a scare today. Chris' temperature continued to rise to 101. His speech was not very understandable, probably because of the fever. The Dr. Girod ordered blood work to see if Chris had an infection. They gave him meds and by the end of the day the temperature was down to normal. So, it probably wasn't an infection. The Hypothalmus is located at the back of the head where he had the fracture. Among other things the Hypothalmus regulates body temperature. It was probably the reason he had such high temperatures (105) when he was in ICU. He walked a long loop through the Oncology unit on the 6th floor this afternoon. Rocky, Miles and Zac came to visit this evening. There is no longer a one on one sitter with Chris at all times as of last night. Even though they have an alarm on the bed, Julie has been staying the night with him.
Day 46
Chris had a restful night. They had him up at 8am this morning for a walk. They walked him again later. He brushed his teeth. He was on pain meds and slept most of the afternoon. Dr Collada gave orders to remove the drains out of his head and abdomen. He is off the IV as well. He had a slight temperature when I was there- 99.3. His face looked flush. He had heavy bandaging, turban like, on his head after surgery. When they removed the drain, they dressed his head in a lighter wrapping. The helmet is a thing of the past. I hope we get to keep it as a souvenir. There has been a sign in large lettering over his bed since ICU which reads Flap left side out--something like that, referring to the bone flap on the left side of his head, so that hospital staff was aware of the injury site. That is also a thing of the past. Chris was intubated during surgery. It is apparent that his throat hurts. His voice is very hoarse and croaky. He seems to have picked up where he left off before the surgery as far as the content of his speech. They are talking about moving him to Salem Hospital Rehab on Center Street as early as tomorrow or Friday. We are hoping not. His stay in rehab will be a limited amount of time, maybe 4 weeks, probably driven by insurance. We would hope that they would let him recover from surgery in the hospital, so that all his time in rehab is productive. We are very thankful so far for Chris' surgical outcome.
Day 48
Chris was moved by Van to the 2nd Floor of Salem Hospital Rehab on Center Street. He wasn't in time for any Rehab today, but they have him scheduled for half a day tomorrow. Nothing on Sunday, then a full day of Monday. He seems very confused by the move. His speech is pretty garbled today, --probably still recovering from the surgery and has stress from the move. He seems depressed. He probably thought he was going home. His fever and medical issues seem resolved. He is still on the feeding tube. He doesn't like it. I can't wait until they get him eating. He has come so far, and yet he has such a long road ahead of him. They will keep him at Rehab as long as he is progressing.
Day 49
Today was not a very good day. Chris had a Grand Mal seizure at 6:30am this morning. Luckily, Julie had spent the night and was able to call for help. He will be on an anti seizure drug (keppra). We haven't talked with a Doctor yet. I think the Doctor, now , would be Dr. French who is on Staff at Salem Rehab. Apparently seizures are not uncommon with a brain injury. Hopefully, with the drug, there will be no more. Rehab usually does not allow anyone to spend the night, but made an exception for Julie last night. Thank God. Even though they have cameras in the rooms, it would have been over with and they would never have known. If the seizures continue, Chris will have to go back to the hospital, where they are better equipped to handle them. Even with the seizure they got Chris up to walk at 9:30am and then again in the afternoon. The first time, he wouldn't go back into his room. He kept saying Zac's. It took four aids to get him back in. The second walk was no trouble. I think that the move from the Hospital was too quick--just three days after surgery, change of place and now this seizure. He has definitely taken a step backward. His speech is mostly made up words, he's depressed and angry. No sweet smile from Chris right now. I'm holding my breath and praying for those two steps forward.
Day 50
We were back in the Emergency Room today. Chris started vomiting about 3:30am last night and continued through the morning. He was transported to the hospital at 8:30- 9:00am. They did CAT scans and xrays, blood and urine tests. They think that he might have had a reaction to the Keppra that they started him on yesterday. About 15% get these side affects. So, they have switched him for 5 days or so to Phenobaritol.
They would prefer to use another drug later, but they want him stabilized on this first. He is back up on the Neuro Unit on the 6th Floor. They will keep him until Tuesday or Wednesday and release him back to rehab if all goes well.
Day 51
Chris had a good day in the hospital. They took him off the phenobarbital and substituted Tegretol. He seems to be doing okay so far. They have changed his formula again because he his still losing weight. They are trying a continuous drip rather the 4 feedings a day. He didn't seem as fatigued, making his speech more understandable. He has a some 2-6 words sentences that he can string together now. He had a good sentence going and at the end he used the word "Maverets". Julie and I look puzzled. For the first time since he started speaking, he stopped and pointed to the nurses and said "What are they called".( Up until now we had never heard this questioning phrase from him) We said "Nurses", so he substituted "Nurses" for the word "Marverets", making the sentence understandable. He visited with his friend Annie tonight. When someone asked who his nurse was on the night shift he looked up on the Chalk Board on the wall at the foot of his bed and read "Nancy" and said, pointing, "She's over there"!!. These developments are HUGE for Chris and for us. He still slipped back into Jabberwocky at times today, but not as much. Mostly when he is fatigued, which can be quite often on any particular day. He has been using the words knives and glass lately. Julie has figured out that they mean the staples in his abdomen and on his scalp. He had Grandma Judy count the staples on his head tonight. She started at one and ended at 32. He commented "Too many". When the day nurse said goodbye to him at the end of her shift and that she would see him when she came back on Wednesday,--he said "Hopefully not". Tomorrow, Chris goes back to Salem Rehab on Center Street. The experts warn that we are in for quite a roller coast ride at least for the next year and maybe more. We are so thankful for everyone's energy and prayers. Today is one of those days that I feel confident that Chris will make a full recovery.
Day 52
Chris did not leave the Hospital today. The CAT scan still showed fluid under the skull at the Surgery site. Dr Colada says they will watch it in hopes it will dissipate. I don't know if that means that he goes to Rehab tomorrow or not. Chris was very fatigued today. I wonder if it is the Tegretol that they are giving him or if he is just tired after a big day yesterday. He seems a little dizzy and not as steady on his feet, but he did walk this evening with Dennis. He slept a lot of the day. He did brighten up and showed interest for the young staffers on the ward that came by to say Hi to him when they learned that he was back in the hospital. One young man, James, on the Lift Team told a story to Chris about how he didn't think Chris was going to" make it" way back in ICU. He told of how he had been thinking about getting out of Health Care and how Chris' struggle back has inspired him again. Chris is indeed a Miracle. If any of you have been hesitant to visit, please come by for a short visit. Chris is definitely bored with the same old family people. He really enjoys the company of his peers. His Speech continues to improve. We can see that he knows at times that he is saying the wrong word and he struggles for the right word. Sometimes he finds it, some of the time not. He might then try another word and we may get the drift of what he is trying to say. But, there are many, many more English words and less and less made up words. He may say now "What's the word--it's kind of like Flavix" We have not figured out what Flavix means because it is a word that he uses in almost every sentence as both a noun and a verb. "Zac" is another word that he uses in almost every sentence. His brain is busy healing and cataloging, filing and retrieving. One really good day seems to be followed with a down day or a day of rest. But, we are seeing progress daily now that he is 1 week out of Surgery. We pray that he will take to Rehab and the progress will be in leaps and bounds.
Day 53
Dr Stroud removed Chris' staples from his abdomen early afternoon. Chris was having a reaction to the metal so he removed them early. I had not met Dr Stroud previously. He introduced himself as the General Surgeon who did the abdomen part of the bone flap surgery. Dr. Stroud was chatting with me out in the hallway and said "We all thought Chris was a Goner, when the swelling and pressure get that bad, they don't usually make it. He said "He is a Miracle". I was surprised that a Doctor would share that.
They transported Chris to Rehab this afternoon. This time they moved him on a stretcher rather than in a wheelchair, so he didn 't get too disoriented. He did much better with this transition . A Doctor at Rehab will do the skull staples on Friday. Chris did well again today. Grandma Judy was at the hospital this morning but had to leave. Julie told Chris that Grandma had to go watch Julie's DayCare kids. Chris said ''What about you"?. Julie said that Grandma had been watching Julie's Daycare all this time so that Julie could be at the Hospital with him.. He looked rather incredulous about that. Yesterday, when Bob and I were with him, I told him I couldn't wait until he starting eating because he was losing weight. I went to the board and wrote down his beginning weight and his weight now, trying to calculate how much he had lost. When I told him 32 pounds, he said No. I said Yes, he said No and on and on. Finally he lifted his blanket off his stomach and looked down to see if he could tell that he was thinner. He was pretty incredulous about that as well. Things are all firing.He is still struggling for words. He slips back to Jabberwocky--it takes less brain power when he is fatigued. Usually, he still can't get through a complete sentence--unless it is short--but he has come such a long way since the last surgery. He's amazing!
Day 54
CHRIS ATE A GRAHAM CRACKER TODAY!! He said it was Gross! The Speech Therapist worked with him on his swallowing and eating, leaving no time, I would suppose for working on improving his language skills. But being able to eat is huge and is a hurdle that I would suppose he has to conquer before he goes home. Despite not having Speech Therapy, Chris' brain is healing and he continues to surprise us with new words every day. When he attempts a long sentence, it flows well with all the right intonation, but is not understandable. He is getting really good at short sentences. His Therapy Sessions are a half hour long, so when he refused, for twenty minutes, to go to Physical Therapy--there went that session. Luckily, James from the Lift team at the Hospital came in later, (on his day off) and talked Chris into going to the Gym to throw a ball around. He responds so much better to young people and it really makes a difference on how he is approached. Hopefully, he will get more into the swing of things soon. Rehab is not able to provide a one on one sitter for Chris during the night, so Bob spent the night with him last night. He thinks that Chris should do fine on his own. There is an alarm on his bed and a call button on the wall. I saw him adjusting his bed with the button on the side tonight. That is something that he wasn't able to do last weekend. I don't know if he has the call button figured out yet. When I told Chris that we were leaving on a trip, he questioned "You're laughing?". I said "Yes, we're leaving." The made up words are turning into English words. The English words will get sorted and put in the right places. Chris has had three good days in a row. Tomorrow they will remove the staples from his head. These staples look big enough to hang drywall with. We pray that this procedure is not too traumatic for Chris and that after this his medical problems fade into the background and Chris can work toward a full recovery.
Day 55 &56
Chris is still continuing to improve and changes from day to day. He had a really good therapy day yesterday and Julie said he did everything that he was asked to do. He also got up and went to the breakfast table with the group, swallowed milk and Julie said he carried on a somewhat conversation at the breakfast table.
They tried to remove his staples from his head. He let them remove only one. They will try to take a few at a time (there are 32). If they don't get them out by Monday, he may have to be sedated. Halloween night, Grandma Judy brought Chris a Nightmare on Elm Street T-shirt which he wore to hand out Candy to trick or treaters that came to his door. The trick or treaters were his young Nieces and Nephews and their friends. Patients on the ward got word of the handout, so they came trick or treating as well. Today, Chris had part of a day of Rehab. His mobility is getting so much better. He really doesn't need any help walking, getting to the restroom or getting in and out of bed. A member of the family is still spending the night with him. He is telling us to go home, he is fine, he will see us in the morning. In therapy he plays jengo (sp) at which he does well. He played Uno today and won. He is certainly a winner in my book!
Day 57
Today is Sunday, Chris' visiting day at Rehab. He had visitors during the day but was eagerly awaiting his friends. They came at the end of the day in a group. There were 5 or 6 of them. They watched the Football game in the Living room and then Chris asked if they wanted to see his room and they visited in there for a while. He had such a big grin -- he was so glad to see them. He went to dinner in the dining room with Dennis and Julie. HE ATE!!--some Chicken and Mashed Potatoes. He said it was gross. Dennis said it was good. The Nurse was so excited--she said if he could finish at least a third of his meal, she wouldn't have to give him the evening meal by feeding tube. I don't know if he ate that much, but I know that he is on his way to getting to that point and beyond. I talked to him on the phone this evening. We are in Maui, so I haven't seen him since Thursday. --OMG! I can't believe the improvement! ALL English words. --Maybe just one with a little trouble. The word "Nurse", used to be "Maverts"--tonight it was "Nice". Getting real close!
He told me he got his staples in his head out today. I asked how many--He said "thirty". Just a few minutes later on the phone with Bob, he called his staples--"Razors". He kept his sentence fairly short and you could tell he was thinking about what he was saying and how it sounded as it came out. All this was at the end of his day, just before bedtime, so it was really good for as tired as he must have been. We are so proud and thankful for his progress.
Day 58
Today, Chris did a hand bicycle for 7 minutes, went for an outside walk around the building, worked on balance and eye/ hand coordination by throwing and catching simultaneously. He played four hands of Uno and shuffled while standing. Last night he texted Zac. Zac texted back----"Chris?". No eating today. He asked how much longer in Rehab. "Maybe twenty days" was the answer. He was bummed over that. I think that he thinks that he is so much better than he really is. He still has a long way to go--He still has a feeding tube, he still has the made up language, he may still have some physical limitations. We don't know yet about judgement and logic. It will all come. It will just take time.
Day 59
Chris did 10 minutes on the recumbent bicycle this afternoon. When he asked how many minutes he had done, Dennis told him "7 1/2 minutes". Dennis asked him how many minutes to go-- Chris rolled his eyes and answered 2 1/2 minutes. Yet, Chris seemed surprised when in a later conversation, he learned that back in the 8th grade, he had played Tevia (sp) the lead in Fiddler on the Roof. Dennis watched Chris in Therapy today. He reports that Chris' movement and coordination are very good. His aphasia is still an issue as is his lack of eating. There is talk of tube feeding only at night so that he will be hungry during the day. He played checkers and said it was too easy. Dennis was bringing Axis and Allies for them to play this evening. We'll see how that goes. Chelsea and Mike came to visit tonight, that put Chris in a great mood. Chris somehow thinks that he is being evaluated soon and after that he will be going home. That's probably just wishful thinking at this point. We were hoping that he would be in Rehab at least 4 weeks. We were told that there are two circumstances that could shorten that amount of time--either such rapid progression that the goal is reached early, or progression that has stopped, making further inpatient therapy fruitless. We pray for steady upward progress , so that the insurance company will allow him to continue in Inpatient Rehab so that his aphasia can be treated for the longest possible time.
Day 60
A larger room with two beds became available today, so they moved Chris across the Hall. Since the family is still wanting to have someone with Chris during the night, the extra bed will make it more comfortable for the family member spending the night. I think there is a sofa in the room as well.
Chris would not eat anything today, until someone brought in a cheeseburger and fries. He ate about 6 fries and about 1/3 of the Cheeseburger and some Sprite. Yea, Chris! Frankly, I can't blame him for not wanting to eat Rehab food. It doesn't look good or smell good to me either. Sooo--maybe we will just have to bring food in. Salem Rehab has a part of their facility that they call "Easy Street". At Easy Street Patients learn to cross the street, shop for groceries, I think that they may have a car set up, etc. Chris went to Easy Street today as part of his Rehab. He was given a grocery list, ie: two pears, three apples, etc. Then another list with Brand names. He has no trouble with any of that. He walked forward and backwards on a beam, on the floor. I think that he thinks it is too easy. He wants to go home. I think that there was a Team meeting and an Evaluation today. I don't know how that turned out yet. Julie say that his language is improving, BUT still anything too much past the What's Up and the How are You's, he reverts to some of the made up language. We pray that he does not get stuck there, but progresses to string more and more sentences together. We know that this can take time. We must be patient. He has come so far.
Day 61
We got the results from Chris' evaluation. It was "Continued Improvement"--just what we thought--and what we hoped to hear from the Therapy Team. So, that means he will be in Therapy for another week and then reevaluated. Chris begs to go home every day. Two weeks ago, back in the hospital he was fixated on going to live at Zac's in Portland. We have said all along, that Step Two would be going Home to live and then Step Three--to Zac's . His reasoning seems to have kicked in pertaining to the order of Steps Two and Three. He just wants to be over Rehab (Step One). Chris ate Frosted Flakes this morning and half of a MacDonald's Cheeseburger that a family member brought in. I think this is the first time that he has eaten by mouth twice in one day! I talked to Chris on the phone tonight. He mostly answered my questions. When he initiated a sentence on his own, I didn't understand what he meant. He was saying "They might be going to give me my "Tie" now. When Dennis got on the phone he said that Chris had been pointing at the Tegretol medication the nurse had brought in. Those words will come. One thing that I want to share is that through the early days when we were in danger of losing Chris and through the days that we didn't know if he would come out of the coma and through the days we didn't know if he was in a reflexive/ vegetative state when coming out of the coma and through the diagnosis of Wernickes Aphasia and wondering if he would ever be able to communicate, I kept a picture in my mind of how I choose to see Chris and if I got to a low point, I would play that image over and over in my mind. The image went like this-----I walked up the stairs and knocked on the door of our Condo in Portland. Chris was living at our Condo and going to school. He opened to door, standing strong and towering above me. He said in the familiar way that he always greets me "Helloooo Grahmeee. There is just this special warm way that Chris greets me. Well, tonight when Dennis handed the phone to Chris and I heard for the first time that familiar "Hellooooo Grahmeee, I lost it. God is answering our prayers and blessing us with the return of our "Chris". I will continue to rerun, in my mind the scenario that I have of Chris. It may take time, but I am confident that one day it will play out exactly how I envision it.
Day 62
This is Friday, November 7, Chris' 10th night in Rehab. They told Julie today, that they might release him next Friday. I really don't the circumstances of why they would release him so soon. I envisioned Chris off the feeding tube and pretty much on his way to mastering his Language skills before they released him. We were thinking 4 or 5 weeks. When Chris first came to Rehab we met with Eric, the Social worker. He was quite surprised that Chris was scheduled for 4 or 5 weeks in Rehab. He said the average stay is from 7 to 10 days. (That is the average for all patients with various reasons for being in Rehab.) I would think that someone with the complex language problem that Chris has (Wernickes Aphasia) would be kept much, much longer. He said the insurance company might authorize the possibility of 4 or 5 weeks to begin with, but they will reevaluate on a weekly basis and make a decision from there. I know after this, there is outpatient Rehab, but that is for a limited amount of time as well. I worry about --"Then What?". I know we must be patient and try not to get ahead of ourselves, but we want what is the very best for Chris. Chris did eat a half a bowl of cereal this morning and some KFC chicken this evening. He told Dennis that he went for a walk outside for a "week"--No, I don't mean that--I went for an "hour". He used the word "Therapy" today. All baby steps, going slowly, but in the right direction.
Day 63
Today is Saturday, so Chris' Therapy is just until 2:00pm. During a break in the weather he walked outside for about 45 minutes. A Therapist goes with him. She makes sure that Chris is reading the signs, and pushing the button at the Crosswalk correctly. He did all his other Therapies as well. He ate two pieces of Chicken and part of a cookie. He will still have the feeding tube until he steps up his eating by mouth. I hope it is soon--he is starting to have an infection at the tube site. They are treating it topically. I got Chris a replacement phone. The one that he had previously was shot. I gave him the phone when he was in the Hospital about 2 weeks ago. He said "Thanks" and "Cool" when he got it, but was not interested in using it. It was reintroduced to him a couple of days ago and he is making up for lost time. Although it is a phone different from his old one, he has no trouble texting. He asked if he could order a game, so we'll se how he does on that. What I find interesting is-- Dennis says,-- that Chris' words, spelling , punctuation and grammar are all there when Chris is texting. So -- the same words that he struggles for and may or may not get, when he is speaking, are readily available when he is texting!!. I'll have to see this for myself--I must have heard Dennis wrong. Tomorrow is visiting day, Chris is texting and receiving texts about whose coming to visit.
Day 64
Grandma Judy stayed with Chris last night. She went to Breakfast with him this morning. He ate 50 % of his breakfast. Frosted Flakes accounts for 20 %, 2 cartons of milk-20%, and part of his oatmeal-10%. Therefore, he did not have to have his morning tube feeding! Yea Chris! Today is Dennis' Birthday. Judy baked a cake, (Chris' favorite-jello cake). They had a Birthday celebration at Rehab. Chris had a slice of pizza and some cake. Chris' friends, Zac, Rocky, Miles, Derrick and Elana, came to visit this afternoon. Tomorrow, Chris will be transported to the Hospital for a CAT scan.
Day 65
This morning, Chris had enough breakfast so that he didn't need a tube feeding. He got half a feeding at lunch, and had enough of his Hospital Dinner (60 percent) to skip his evening tube feeding. Things are going the right way in the Food Department! Yea Chris!
Chris went to the hospital for his Cat Scan, this afternoon. Just twelve days ago, Chris was brought from the Hospital to rehab in a Stretcher. Today, he walked from Rehab to the Van that transported him to the Hospital and then walked from the van into the hospital for the CAT scan and the same in reverse! Now, if the CAT scan RESULTS are as encouraging, we are on our way!
In Therapy, he practiced Traffic Safety,watching for cars, crossing at crosswalk, stay on sidewalk, etc. He played "Sorry" at Occupational Therapy. He played "Go fish" with his little cousin, Stevi, this evening. He's practicing finishing sentences and naming objects. I like that the Therapists are working on this aspect of his speech as he has a lot of problems saying what he wants, after he starts a sentence. A lot of the time he gives up and says "Whatever" when he can't say the word. I think that he knows the word, but he just can't say it, because if you give him some choices of what you think he might have meant, he will say "that's the word".
Now, that it looks like there is light at the end of the tunnel with Chris beginning to eat and the feeding tube eventually on it's way out, the next hurdle, and what might be Chris' most difficult hurdle, will be learning to say the words that he needs to be able to communicate. The part of Chris' brain that was injured the most, the left temporal lobe, and in particular the area that is affected by Wernickes Aphasia, either has to heal, or it has to rewire, or is that how it heals--- by rewiring?? I don't know. What I do know, is what lies ahead for Chris is probably the hardest work that he may ever have to do. It may be tempting to slack off and say "This is good enough"
I recently talked with my relative in Canada( that would be me) about her Mother in Law, who had a stroke and was affected much the same way Chris was. Unfortunately, she really never regained her normal speech. She was elderly, and thought that she was fine the way she was. It is so much harder for older people to rewire and their energy level and maybe the determination to return to life the way it was just isn't there. With Wernickes Aphasia this outcome may be the norm rather than an oddity.
Again, Chris is young and a young brain can do amazing things,but not without the utmost effort and determination that goes along with a full recovery. We pray that Chris is ready for this journey and that he doesn't settle for anything less than 100 percent.
Day 66, 67 & 68
Sorry, I have been traveling from Maui and stopped in Portland, hence no reports for a few days. I saw Chris tonight after 13 days. Bob and I and Dennis had Pizza with him in his room. He ate 3 pieces and had a carton of milk. Again, today, he will only have to have his 10pm tube feeding.
He seems so much better! Physically he appears to be doing very well. His speech, in general, is slowly improving. We've been told repeatedly that there is no quick fix, but we can still see progression in his speech, every day, even if ever so slight. We have to keep in mind that he still tires very quickly and not all days are good days.
Chris is able to hold more of a conversation now, but a lot of the time, he still struggles for that all important word or words that give meaning to the sentence. Sometimes we can fill in the blanks and other times we just have to go on to something else. I can see the frustration on his face as he struggles for that word, but he is not giving up as easily as he used to. I wish I had some magic that could bring it all back- presto, but, it looks like he is going to have to master his speech himself and the hard way.
The four of us played Texas Hold Em. Dennis and Chris probably ended up with the most chips.
He talked about what he remembered about the accident and what he remembered about the Hospital. (The hospital is pretty much a blur). He can't believe it's been more than 2 months! We looked at his scars. --Pretty Impressive!! His hair is starting to grow and will cover the road map on his skull in time. Besides, the scars just add character.
I looked at his homework. He has a steady hand and neat printing. I didn't realize he could print so small. They do Math, (I think it consists of Blackjack). I haven't talked to the therapists, but from his work, it looks like he's doing really well, cognitively.
There is a calendar on the Board in front of him. Tonight he will cross off Thursday, then Friday, Saturday, Sunday, and Monday. Tuesday he will go home!
Day 69 & 70
Well, if it is day 70, it must be 10 weeks. Just after the accident, when Chris was in ICU, Dr Collada, said that it would be 6 weeks before an evaluation and a determination on what course of action would be taken on Chris. I thought, surely, Chris wouldn't take that long. As time passed, and Chris' condition worsened, I wondered if we would even be out of CRITICAL care at the 6 week mark. So here we are-- Chris is improving and going home on Tuesday.
I cornered Dr Tran at rehab this morning and asked if he had the results of the CAT scan, from Monday. He did--He said it remained unchanged. Chris still has the fluid at the surgery site and the CAT scan is still showing contusions on the brain. But--he said we should be encouraged that the fluid had not increased. He said the contusion or bruise would eventually go away as any bruise on your body does. The physical therapist, Laura said the damage to the brain could cause the cells (1) to be dead, (2) or not be dead, and heal, (3) or the cells around the dead cells to take over. Sometimes this is too much information--but I asked, so I will have to mull that over for awhile.
Chelsea, played frisbee with Chris and the therapist outside, yesterday. Chris can slowly run a few steps, backward, a few steps sideways, has good balance. The therapist said that she is not going to recommend Physical Therapy on an Outpatient Basis. He already does all they can teach him. We are so thankful that his right side has been spared, as the initial evaluation after the accident show weakness on the right side.
I spent the night in the other bed in his room last night, so I got to have time with Chris when we are not in a visiting mode. For several days, now he has eaten three of his meals by mouth and the nurses would come in at 10 o'clock with a tube feeding. I talked the nurse into bringing us a vanilla milkshake before Chris went to bed at 9:00pm. He drank it, so we had our first day with no tube feeding at all. Dr Tran said most Doctors want to see the patient go at least a week or two without any tube feedings before they disconnect the tube.
I went to a couple of sessions of Rehab with Chris. Lifting some hand weights, at lot of following directions on range of motion exercises, dexterity, etc. Chris does well at following these directions because they are visual. He can just copy what the therapist is doing.
His Speech and Comprehension are a different matter. The therapists have come to the conclusion that Chris cannot fully understand what he reads, at least to the point of following directions. They tried to diagram things out and he could not act upon that either. I handed him the Sports Page, with the pictures and the write up of the Saxon's playoff game. It was quite a long article. Chris took the appropriate time reading it, put it down and said "They did bad". It seems to me that he got the jest of things, but when the therapist questioned him about the score and who they played, he didn't come up with an answer. I don't know if it was because he didn't understand the article or if he couldn't say the words. I DO know that when we passed the Bulletin Board in the Inpatient Main Lobby. Chris looked up at the Board and said "I like that". The Board read. IMPENDING DEPARTURES ---CHRIS TAGGART -November 18.
Day 71 & 72
Yesterday, was Sunday. Chris had a bunch of visitors, family, relatives and most importantly, his friends. Zac, Rocky, Derrick, Miles and friend and Chris Fontaine. This will be the last time anyone will visit him in a hospital setting. Tuesday, he goes HOME!
CHRIS GOT HIS FEEDING TUBE OUT TODAY! That will make it a lot easier on everyone when he is at home. They evaluated him at lunch today as far as swallowing, etc and decided that he will not have to be on a restricted soft diet. He can eat regular food like the rest of us. It will probably take a week for the feeding tube hole to close. Like the Trach, they do not stitch it up. They just let it heal on its own. There is some discomfort and a small amount of bleeding, but he isn't taking any medication for it.
He is having his last Inpatient Therapy Sessions today. They will set him up with a schedule for Outpatient Therapy, which is on the first floor of the same Rehab Facility on Center Street. I think that it will be two or three times a week. I think that the Sessions are an hour. That doesn't seem intensive enough for the amount of work that he still has to do on his speech. It is all probably insurance driven.
I read online about an Aphasia Center at the University of Michigan, in Ann Arbor, that works their patients 23 hours a week, for 6 weeks, on speech and then a computer lab for 3 hours a week. They have a 95 percent success rate. They say they can show improvement on patients as far as ten years post injury or stroke. Amazing!
Hopefully, as Chris' brain heals, the words will come and he will be able to progress in spite of the limited amount of rehab.
So that was today's update and tomorrow he goes home! I hope they keep up the teaching and being that he is young, there is a good chance of recovery... With everyone's strength and energy and prayers, we hope for him to be the best he can be.
Good Luck Chris...
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