Dear Family and friends,
My sister Steph typically has been relaying the detail messages for me to post. She is with family in Oregon at this time. It is with a sadden heart my family gives you this final post. We waited patiently to hear how TJ was doing in the OR yesterday April 18th, 2011. They were preparing him to be moved of the ECMO machine. There was some trouble with oxygen not flowing through the blood correctly making it hard for TJ to breathe on his own. Doctors came up with a plan to do a bypass again. With success they were able to get all his stats up off the ECMO machine, breathing on his own. They then prepared to close. Closing was a success, but just within an hour or so TJ's blood pressure dropped and they could not bring it back. TJ Passed away last night around 6 P.M. He fought hard, but the Lord must have other plans for him. He is within our hearts. He had a smile on his face as if he was at peace. His father Ty gave him a kiss on the forehead as they brought him out of the elevator, and held his hand to his room, where Ty wrapped TJ up in a blanket and held him. He also cradled him and walked around with him. TJ had impressions of his hand and feet, as well as free portraits. One of our dear friends Edie came to help with this impression. When I heard this, tears fell as so many people we know and love rallied around my family, ready to serve.
Sometimes we don't always understand or know the answers to life's questions. We ponder about loss, or ask why one would have to endure such hardships. It gives me comfort in knowing TJ is where he can no longer feel pain. He is with our family who've already moved on. I wouldn’t surprise if my Grandpa Payne has already called him a "Knott Head". Surely both my grandmothers were there with open arms. We do get wrapped up in life and sometimes forget it is the small moments that matter the most. Give a hug, a smile, do some kind of service, surround yourselves with loved ones.
Today I found peace and comfort. I picked myself up I addressed my children with any questions they had. We read as a family from the bible. We prayed together and my husband and I sent our two oldest kids off with love. I took my youngest to a friend’s house, so I could stay with my son at preschool today. I was surrounded by sweet loving children, and embraced by three amazing women. Though I can't be with my family today in Oregon, to help comfort one another, I was able to feel the strength from those willing to serve my family and feel comforted by little friends. I watched these children today and I pictured our Savior surrounded by little children. Oh how He loves little children.
TJ is forever in our hearts till we meet him again. To many family and friends, we are grateful beyond words for you dedicated prayers and support. My family appreciates you. Thank you with much love, from TJ's family
Tylan Wayne Olson JR.
Mr. TJ @ 17 months old
Tuesday, April 19, 2011
Sunday, April 17, 2011
TJ's Progress
Day 14 – 4/17/11
Tooth Fairy had to come this morning for TJ. We had to send her an email to let her know he prematurely lost that tooth. Nice to have connections! Ty said she left $20that will go into savings for him. They are working on adjusting TJ’s meds to get the right combination. When we get back to visit, one of the machines is beeping, and the nurse comes and checks his line. It is the one going into his carotid on his right neck area. The nurses decide it is time to spruce up his bandages in that area. While she is working on it, TJ starts to throw up in his mouth and it smells icky. They suction him out and clear his mouth out. Also the ECMO tubing is working loose because they had loosely sutured it, so the doctor and nurse give him a little sedative and suture his neck and the ECMO tubing a little. Now it is time to give TJ another spit bath again and clean him up. The doctors are very pleased with TJ’s progress and are gonna change medications so his extremities aren't so blue and cold. They had been trying to give TJ tube fed foods to help his tummy start working a little to try and reduce his gas, but they decide they are pushing too fast and they will back off of feeding him and that it is a little too soon. They feel he is ready for surgery tomorrow to close TJ back up. I don't care if they feel he is ready or not, it is gonna be one stressful day tomorrow! Things that are supposed to be routine don’t pan out that way for this little boy, and he has had to fight so hard! They are going to also try to take him off the ECMO tomorrow as well. So it will be a big and stressful day for TJ! Keep praying!
Day 13 – 4/16/11
TJ takes a trip down to the OR again to clean his chest area up a bit. He has had a lot of packing material under the barrier that was placed there to stop bleeding last Wednesday. They clean him up and remove the rib spreaders and have washed him up as much as possible. He looks good to the doctors and they are pleased with the progress. The nurses are still washing him when we come in and it is nice to see how they tell him what they are doing and are so gentle and talk to him. One of our favorite nurses is here today, Erika. She is especially good with him and it feels good to have her as the bedside nurse today.
TJ’s Cardiologist Dr. King does an echocardiogram of his heart and surrounding structures to see how it is doing. It is hard for him to see all he wants to because of all the tubes and stuff going into and out of him. He says TJ’s heart is functioning well at this stage of the game and his stats are doing well. A nice sight to see his heart working on the monitor and they also check to see why TJ’s belly looks bloated again. Dr. King feels it is just gas backing up because the sedatives slow down his bowels from working as well. He’s gonna clear a room when all that is relieved.
A little later Ty comes out and shows us a tooth in a sample jar. L He has lost his first tooth due to collateral damage while placing an intubation tube. But this will be a small price to pay if that is all the damage. It is TJ’s top right middle tooth. Ty thinks one of his lower teeth is also very loose. They have gauze packing his mouth right now so we can't really tell.
Day 12 – 4/15/11
The doctors went into TJ’s lungs with a bronchoscope and discovered his breathing machine tube was clogged so they needed to change it. They had to pull that tube out and put a new one in for a different breathing machine. They think his lungs will do better on another type of breathing machine. While intubating him again, TJ’s teeth get hit and knocked loose. His aunts are happy to be back with him!
Day 11 – 4/14/11
Today was a tough day, emotionally! It was difficult to go to work today. Anyway, as stated on Day 10, TJ's surgery went well! But soon after, he developed serious life threatening complications. His lungs were not working and then he started to bleed - he was given a liter of blood every hour and was in the OR for 17 1/2 hrs. From 5 pm - 10 pm they couldn't get the blood in him fast enough. They relayed upstairs around 10 pm to start praying because they were up against the wall - trying to balance blood thinners with platelets. The doctors said he was very critical and that the next 24 hrs were touch and go. I'm thinking he wasn't already critical? So here we found ourselves back on that horrible roller-coaster where TJ was tinkering with death. The chaplain came upstairs and offered a prayer - it's never good when the chaplain gets called in. My parents were praying and pacing the floors and I was praying...Finally a few minutes before 1 am they got the bleeding under control and moved him back to the PICU. It was another 1 1/2 hours before Ty and Sadye could get back to see him. The doctors have left his chest wide open with gortex covering him and the tubes coming out directly from the heart. He is on complete life support. Doctors want to leave him that way until Monday when they can do one more surgery and then close him up. His biggest hurdle is getting his lungs dried out. He has stayed stable all day! We are all physically and emotionally drained but are so grateful for the doctors and nurses who are devoted to TJ's care.
Day 10 – 4/13/11
TJ’s big day! He went to the ER at 7:20 am, and the surgery did go smoothly and ended somewhere around 4:30pm. The doctors were pleased with how the surgery went, but TJ will still need another major surgery. They did everything they could anatomically for him. They did get his major arteries switched. Not being there, leaves me not quite understanding all they did and having to rely on the updates of the phone calls. Around 5:30 pm I got a call that TJ’s lungs are not doing well and he’s not getting enough oxygen, they were really sick, and they are not recovering well again from the surgery and anesthesia. They are still watching him down in the OR. A little later at about 8:30pm I get another call from mom and she says that they have transferred TJ from an arterial ECMO bypass to a venous ECMO that is supposed to be better for his lungs to recover. He has started bleeding in areas and is not doing so well. They have given him some lifesaving drugs and are working hard to try and get his lungs to come around and to stop the bleeds that now threaten him. He is purposely being kept open- meaning that his chest is open for quick access to his heart in case any trouble arises. It seems as though every bit of good news is tempered so much by more struggles and setbacks. So, our little TJ is still not out of the woods and safe- so please keep praying for him and keeping him in your thoughts!!!
Day 9- 4/12/11
Tooth Fairy had to come this morning for TJ. We had to send her an email to let her know he prematurely lost that tooth. Nice to have connections! Ty said she left $20that will go into savings for him. They are working on adjusting TJ’s meds to get the right combination. When we get back to visit, one of the machines is beeping, and the nurse comes and checks his line. It is the one going into his carotid on his right neck area. The nurses decide it is time to spruce up his bandages in that area. While she is working on it, TJ starts to throw up in his mouth and it smells icky. They suction him out and clear his mouth out. Also the ECMO tubing is working loose because they had loosely sutured it, so the doctor and nurse give him a little sedative and suture his neck and the ECMO tubing a little. Now it is time to give TJ another spit bath again and clean him up. The doctors are very pleased with TJ’s progress and are gonna change medications so his extremities aren't so blue and cold. They had been trying to give TJ tube fed foods to help his tummy start working a little to try and reduce his gas, but they decide they are pushing too fast and they will back off of feeding him and that it is a little too soon. They feel he is ready for surgery tomorrow to close TJ back up. I don't care if they feel he is ready or not, it is gonna be one stressful day tomorrow! Things that are supposed to be routine don’t pan out that way for this little boy, and he has had to fight so hard! They are going to also try to take him off the ECMO tomorrow as well. So it will be a big and stressful day for TJ! Keep praying!
Day 13 – 4/16/11
TJ takes a trip down to the OR again to clean his chest area up a bit. He has had a lot of packing material under the barrier that was placed there to stop bleeding last Wednesday. They clean him up and remove the rib spreaders and have washed him up as much as possible. He looks good to the doctors and they are pleased with the progress. The nurses are still washing him when we come in and it is nice to see how they tell him what they are doing and are so gentle and talk to him. One of our favorite nurses is here today, Erika. She is especially good with him and it feels good to have her as the bedside nurse today.
TJ’s Cardiologist Dr. King does an echocardiogram of his heart and surrounding structures to see how it is doing. It is hard for him to see all he wants to because of all the tubes and stuff going into and out of him. He says TJ’s heart is functioning well at this stage of the game and his stats are doing well. A nice sight to see his heart working on the monitor and they also check to see why TJ’s belly looks bloated again. Dr. King feels it is just gas backing up because the sedatives slow down his bowels from working as well. He’s gonna clear a room when all that is relieved.
A little later Ty comes out and shows us a tooth in a sample jar. L He has lost his first tooth due to collateral damage while placing an intubation tube. But this will be a small price to pay if that is all the damage. It is TJ’s top right middle tooth. Ty thinks one of his lower teeth is also very loose. They have gauze packing his mouth right now so we can't really tell.
Day 12 – 4/15/11
The doctors went into TJ’s lungs with a bronchoscope and discovered his breathing machine tube was clogged so they needed to change it. They had to pull that tube out and put a new one in for a different breathing machine. They think his lungs will do better on another type of breathing machine. While intubating him again, TJ’s teeth get hit and knocked loose. His aunts are happy to be back with him!
Day 11 – 4/14/11
Today was a tough day, emotionally! It was difficult to go to work today. Anyway, as stated on Day 10, TJ's surgery went well! But soon after, he developed serious life threatening complications. His lungs were not working and then he started to bleed - he was given a liter of blood every hour and was in the OR for 17 1/2 hrs. From 5 pm - 10 pm they couldn't get the blood in him fast enough. They relayed upstairs around 10 pm to start praying because they were up against the wall - trying to balance blood thinners with platelets. The doctors said he was very critical and that the next 24 hrs were touch and go. I'm thinking he wasn't already critical? So here we found ourselves back on that horrible roller-coaster where TJ was tinkering with death. The chaplain came upstairs and offered a prayer - it's never good when the chaplain gets called in. My parents were praying and pacing the floors and I was praying...Finally a few minutes before 1 am they got the bleeding under control and moved him back to the PICU. It was another 1 1/2 hours before Ty and Sadye could get back to see him. The doctors have left his chest wide open with gortex covering him and the tubes coming out directly from the heart. He is on complete life support. Doctors want to leave him that way until Monday when they can do one more surgery and then close him up. His biggest hurdle is getting his lungs dried out. He has stayed stable all day! We are all physically and emotionally drained but are so grateful for the doctors and nurses who are devoted to TJ's care.
Day 10 – 4/13/11
TJ’s big day! He went to the ER at 7:20 am, and the surgery did go smoothly and ended somewhere around 4:30pm. The doctors were pleased with how the surgery went, but TJ will still need another major surgery. They did everything they could anatomically for him. They did get his major arteries switched. Not being there, leaves me not quite understanding all they did and having to rely on the updates of the phone calls. Around 5:30 pm I got a call that TJ’s lungs are not doing well and he’s not getting enough oxygen, they were really sick, and they are not recovering well again from the surgery and anesthesia. They are still watching him down in the OR. A little later at about 8:30pm I get another call from mom and she says that they have transferred TJ from an arterial ECMO bypass to a venous ECMO that is supposed to be better for his lungs to recover. He has started bleeding in areas and is not doing so well. They have given him some lifesaving drugs and are working hard to try and get his lungs to come around and to stop the bleeds that now threaten him. He is purposely being kept open- meaning that his chest is open for quick access to his heart in case any trouble arises. It seems as though every bit of good news is tempered so much by more struggles and setbacks. So, our little TJ is still not out of the woods and safe- so please keep praying for him and keeping him in your thoughts!!!
Day 9- 4/12/11
Today didn’t have a lot of news except that TJ is doing well. He is going in to surgery tomorrow for the heart reconstruction they have planned for him. He is still moving a lot and his lungs are doing much better. So all is going forward as planned. He will be going in to surgery at 7:30am and may be in surgery until 5 in the evening. Long, scary, hard surgery! We will be rubbing our heart stones raw as we think of TJ all day long and pray for him. The heart stones are little ceramic stones the hospital supplied for loved ones and friends to rub on like a worry stone. It is about a little more than an inch square with a cute little heart impression on it. We have placed the stone on TJ to make it something that he has touched and reminds us of his poor heart. A couple nights after I got mine, I dropped it at the store while I was rubbing it. It broke in two, and I have super glued it back together. It reminds me of TJ’s sick little heart. The hospital gladly gave me another so I won’t cut my finger on the broken edges. If all goes as planned and TJ gets through this surgery, they think this will fix his heart. It was a plan brainstormed by the cardiologists at Emanuel Hospital last Thursday after we had thought there was no hope to repair his heart.
I just realized it hasn’t been mentioned in previous blogs that TJ is in a coma. He is in a coma as a result of the 90 minutes of CPR he was given. His body is responding and we eagerly await to see what he can do each day. We are hopeful he will continue to make such miraculous strides, but we are constantly aware of the fact that the neurologist says there is no guarantee he will get any better as far as his neurological function goes. All we can do is hope and pray to Heavenly Father and know that He is at the Helm and that TJ will be allowed to do all Heavenly Father has planned for him.
Day 8- 4/11/11
I just realized it hasn’t been mentioned in previous blogs that TJ is in a coma. He is in a coma as a result of the 90 minutes of CPR he was given. His body is responding and we eagerly await to see what he can do each day. We are hopeful he will continue to make such miraculous strides, but we are constantly aware of the fact that the neurologist says there is no guarantee he will get any better as far as his neurological function goes. All we can do is hope and pray to Heavenly Father and know that He is at the Helm and that TJ will be allowed to do all Heavenly Father has planned for him.
Day 8- 4/11/11
Doctors are happy with how well his lungs are progressing and clearing up. He is doing well as far as how his lungs are doing now. They have fitted TJ’s feet with some soft braces to lengthen his tendons and his muscles. The nurse explained that after days of recovery lying in the bed, his tendons will shorten and when he tries to walk again it will be very painful. So they have also started some physical therapy and massage to help prevent this. They will also be fitting his hands with some too. TJ does not like having eye drops put into his eyes and squints his eyes shut when they do it. He is moving more again today. It is very hard to not be with him and see all the progress he is making- and we all pray that he continues, and that his surgery will go well for his heart. It will probably be Wednesday because his lungs are improving so much. He is just such a tough little man!
Day 7 - 4/10/11 (Continued)
Day 7 - 4/10/11 (Continued)
TJ was in surgery for about an hour. He did very well. They measured the pressure in his right atrium before surgery and it was at a 31 (Not sure what units they measured it in.) They were able to punch a hole in his atrial septal wall even though it was tough. After surgery it went down to a 20. A little later the doctor updated them and said it had gone down to a 9 and that a 5 is what a healthy heart is- so their procedure is yet another incredible success. They said the surgery went very well and that if all goes as planned, this should help his lungs to clear up as they want them to. TJ is getting more active and all four of his limbs show some signs of movement. By the evening he has started to chew on his intubation tube. He has had nose bleeds though for two days off and on.
Day 6 – 4/9/11
Kim and two of her kids- Levi and Kristine come for a day visit to see TJ and support Ty. Erick and Wendy also come again later in the day. They have also come most of the days. After bringing Ty a meal we decide to eat downstairs in the enclosed large atrium area. While we are eating with Kim and kids, Cousin Henry and his wife show up from Washington. Ty is visiting them when Sadye’s cousin runs up to him and tells him TJ has a code blue and for him to go up to his room. I rush up stairs with Kim, and I follow another nurse into the PICU and go to Ty and Sadye by TJ’s room. Sadye is telling Ty that everything is ok now, that TJ’s ECMO lines got an air bubble in it, and they had to do CPR while they got the air out of the lines. Yet another major scare, and we are all left feeling a little nauseated by the adrenaline rush and fear. Soon after, Dr. King, TJ’s Cardiologist comes and talks with Ty and Sadye about TJ. He is again a bit saddened and disheartened as he explains that TJ’s Tricuspid heart valve which only leaked a little before Monday’s procedure, is now wide open. The cardiology doctors feel that blood is being pumped out of TJ’s heart and to his lungs like they are supposed to, but it is also being pushed back into the lungs with each heartbeat by un-natural flow backwards through his tricuspid valve. He states that TJ’s lungs have worsened each day, and now he cannot have his surgery as hoped on Monday. Instead, they want to perform another procedure in the cath lab to send a catheter back into his heart and punch a hole through his atrial septum to try and allow the blood to no longer back flow into his lungs. They feel if they can successfully do this, then his lungs can clear and in a few days try to significantly repair his heart by surgery at a later time. Dr. King feels this is TJ’s only hope. He doesn’t feel a new tricuspid valve would work, because the ventricles of TJ’s heart are too damaged to pump blood back out, so they need to try and use his healthier atrium. Again, another set back, and disappointing roller coaster ride. They plan to do the surgery in the cath lab at 9am Sunday morning.
Day 5 – 4/8/11
CAT scans and echocardiograms and x-rays are taken to plan and prepare. TJ’s lungs are looking a little congested and not as clear as before- especially the left side. They have been sending a tube in a little ways and suctioning them and have gotten some clots out. They plan to have a respiratory doctor send a scope in to his bronchioles to clear them out and repeat as necessary to try to prepare for the surgery on Monday. The Neurologist meets with Ty, Sadye and family to tell of her findings. She says that TJ’s brain scan does show brain waves, which means there is more than just rudimentary brain stem function to sustain life. His actual cerebral cortex is sending out some brain waves. But this good news is tempered with the fact that his CAT scan shows signs of ischemia and brain bleeding on both sides in the back and on the right side above his ear. This is similar to a stroke. She says he does have brain damage, but cannot say to what degree. It can range anywhere from being in a continual coma state, never opening his eyes or moving or talking, to being mostly ok, but maybe a little slow in speech or unable to walk properly. She says that kids are resilient, and time will only tell. The possibility of a more severe brain bleed and death are also still present. But the signs are good that he is improving. To what degree remains to be seen.
Day 4 – 4/7/11
As mom and dad and I are getting ready, I get a phone call from Ty that TJ’s eyes were moving under his closed lids and his feet and legs are moving. He also has a pulse which is from his own heart- above what the ECMO unit is doing! We are all amazed and feel that this is the first positive thing said since TJ went in for his procedure. The Cardio team has also met and discussed TJ’s case, and feel they have come up with a new plan to fix TJ’s heart. They think if they can let his body repair for 3 days until Monday, then they will try to do the repair for him. Plus the signs of movement and circulation are all positive. Just feels like a roller coaster ride, as we are all coming to terms with losing him, there is a glimmer of hope. It is all still so very risky and full of possible complications.
Day 3 – 4/6/11
Doctors meet with Ty and Sadye and family and let us know that TJ’s heart was severely damaged. It is as if he has suffered a massive heart attack. They do not feel there is anything they can do because the coronary artery runs so high, and it seems impossible for him to have the greater arteries switched back and his heart repaired. He would need a heart transplant to live, and now that he most likely has brain damage, he is not a candidate for a heart transplant. Plus, three to four months is the minimum amount of time needed to find a donor, and who knows when he would get a heart. They originally told us TJ can only stay on ECMO for 2 to 3 days maximum without any positive signs to show he is not brain dead. It is a very disheartening day, and family tries to come to grips with the idea that TJ’s battle may be over. Ty asks for a larger bed for TJ to allow him to sleep for half the night with him and then let his mother Sadye sleep with him for the other half. We leave to Ty’s with heavy hearts and try to prepare for the next day. It is difficult to be in Ty’s apartment among his and TJ’s things. We wonder how hard it will be to bring Ty home without his little “Mini Me.”
Day 2 – 4/5/11
At 4 am, TJ coughs so hard, he flat lines. Ty, by his side, moves out of the way so the crash cart can get to him. The doctors use paddles to get his heart beating again. Calls go out to mom and dad and Steph. Mom and dad get to the hospital so they can be with Ty and TJ. At 8 am while mom is filling me in via phone, a code blue is announced over the intercom. It’s TJ who has crashed again. This time doctors are giving CPR – 2 handed chest compressions. Ty and Sadye and mom and dad are witness to the swarm of doctors and nurses who are working on TJ’s little body. After 20 minutes, they are ready to get TJ down to the OR for emergency surgery. The cardio doctor straddles TJ and continues chest compressions as they take him through the hall and down the elevator. The doctors get a central line in and the family awaits news from the doctors.
The doctors meet with Ty and Sadye and the family. They tell us that CPR was given to TJ for about an hour and present the option to Ty and Sadye to put TJ on by-pass. They explain the risks of bleeding, brain damage from receiving CPR for so long and a poor prognosis. Ty and Sadye give written consent to put TJ on the by-pass machine. This requires two 3/8 inch tubes to be surgically placed in the carotid artery. They transfer TJ from the OR by-pass to a portable by-pass called ECMO so he can be moved up to the PICU. It took 10-12 doctors and nurses to transport him to his room. It’s the first time I get to see TJ as he is wheeled by. After getting situated in his room I get to see him – It was crushing and devastating to see him hooked to so many tubes.
Later that afternoon we find out he was given CPR for 90 minutes and not just an hour. The doctors are not optimistic, kind of doom and gloom. They are very concerned that his belly is so large and do not know what it is full of and are worried it is internal bleeding. When I go in to see TJ, he is very red and his tummy is very swollen. The doctors decide to use a syringe to see what it is. It is fluids and they drain his belly of the extra fluid and TJ’s color looks much better and the swelling throughout his body subsides. His vital signs improve as the pressure on his lungs and other organs is relieved.
Details on TJ's Progress
Day 1 – 4/4/11
TJ is admitted to day surgery for a routine catheterization of his heart. Doctors find a blockage in the lower section of his heart that they didn’t know about previously. They also discover that the coronary artery is positioned too high on the heart to proceed with the original mapped out plan to switch the major arteries for the upcoming surgery. TJ has a difficult time coming out of sedation. When he wakes he says, “I want my dad! I want my juice!” he also tells the anesthesiologist, “I don’t like you!” Because his blood pressure is up too high, the doctors decide to intubate him to allow his body not to work too hard and keep him over night.
Lighter Thoughts and Comic Relief
So, just wanted to share a few things that have lightened the somber mood that has prevailed this last week while watching TJ struggle so hard for his life. These are also very precious moments that don’t want to be forgotten.
First, the gentleness of Levi. That kid has melted some hearts and lifted some spirits this last weekend. Kim decided to come down for the day on Saturday and they left early in the morning. Around the halfway point of the trip, Levi asked “When are we going to get to heaven to see TJ?” You see, when Levi found out TJ would probably not make it on Wednesday night, he began sobbing and ended up crying himself to sleep that night.
He and TJ had just seen each other less than two months before, and Levi got to visit and stay the night with TJ. One day, we all took a trip for fun to ride on the “Max” in Portland- the light rail train that is there. As we were coming back, TJ and Levi were playing and TJ bit Levi’s upper arm. He came to me and said “Stephy, TJ bit me and he took a big bite!” I told TJ we don’t bite and he said, “I sorry!”
So after he was at the hospital a while, Katie, Levi and I were heading out to the “Old Spaghetti Factory” to get Ty and ourselves some lunch. As we walked through the open atrium we passed a little fountain. A little ways past the fountain, Katie handed Levi a penny and told him when we got back he could make a wish. The rest of the way to the parking garage Levi was pondering what he was gonna wish for. He was bouncing around as he walked and shrugging his shoulders happily. We walked over a pedestrian bridge and we heard Levi say “I know what I’m gonna wish for!” When we got to the car he pulled me close and said “I’m gonna wish that TJ will get better so we can play together!” Melt my heart!
Then, when we got back and were setting the food on the tables, Levi said “Come Here! Come Here!” He was waving for everyone to come over to him. When Ty, Katie, Kim, Kristine and were all close, he made his wish: “I wish that TJ will get better and that we can play together!” A little later, we overheard him making another wish with a new penny and he wished that he could be a superhero. He got up on the ledge about 18 inches up around the fountain and jumped off it. Then he disappointedly said “Hey! It didn’t work! I can’t fly!” I hope he will be satisfied if only one of his wishes comes true and he is able to play with TJ.
OK, the other funny thing that happened was a bit of comic relief. I was in a family room trying to do a little work when I heard announced over the intercom that there was a code green by the elevators on the third floor. So I ran out because that is where family and friends were sitting and holding vigil for TJ. A code green means that a family member is having an emergency such as fainting. When I got there I found out that a woman had fallen out of the elevator. From some eyewitness viewpoints, out of the corner of Sadye, Katie and Wendy’s eyes, they saw a woman come flying out of the elevator with food boxes in her hands and landed on her left arm but didn’t drop any of her food! After she fell out, about ten of her family members filed out and they were all pretty big family members. The elevator never came level with the floor and it was about 5 inches lower, and the woman was leaning on the door so when it stopped she just fell over and flew out! Her family members said “you’re not hurt are you?” as the woman had began to get up and said “no,” and then she fell back down to the ground and said “ya, Ya I’m hurt!” Her family members said “UH HUH! You stay down there honey! I smells a law suit here!”
So all the family members walk away from her with their food and sit down and Ty is the one who jumped up and called for help. He told the nurse on the phone that “A lady fell out of the elevator!” The nurse said “What???” And Ty repeated himself to her. Security and medical personnel arrived and they asked if she could feel something and she said “no.” Then they asked again and she said “yes, I can feel it now and that hurts!” They ended up putting her on a gurney, amid moans and groans that could be heard everywhere. It really appeared as though they were going to try to sue the hospital.
Kim and two of her kids- Levi and Kristine come for a day visit to see TJ and support Ty. Erick and Wendy also come again later in the day. They have also come most of the days. After bringing Ty a meal we decide to eat downstairs in the enclosed large atrium area. While we are eating with Kim and kids, Cousin Henry and his wife show up from Washington. Ty is visiting them when Sadye’s cousin runs up to him and tells him TJ has a code blue and for him to go up to his room. I rush up stairs with Kim, and I follow another nurse into the PICU and go to Ty and Sadye by TJ’s room. Sadye is telling Ty that everything is ok now, that TJ’s ECMO lines got an air bubble in it, and they had to do CPR while they got the air out of the lines. Yet another major scare, and we are all left feeling a little nauseated by the adrenaline rush and fear. Soon after, Dr. King, TJ’s Cardiologist comes and talks with Ty and Sadye about TJ. He is again a bit saddened and disheartened as he explains that TJ’s Tricuspid heart valve which only leaked a little before Monday’s procedure, is now wide open. The cardiology doctors feel that blood is being pumped out of TJ’s heart and to his lungs like they are supposed to, but it is also being pushed back into the lungs with each heartbeat by un-natural flow backwards through his tricuspid valve. He states that TJ’s lungs have worsened each day, and now he cannot have his surgery as hoped on Monday. Instead, they want to perform another procedure in the cath lab to send a catheter back into his heart and punch a hole through his atrial septum to try and allow the blood to no longer back flow into his lungs. They feel if they can successfully do this, then his lungs can clear and in a few days try to significantly repair his heart by surgery at a later time. Dr. King feels this is TJ’s only hope. He doesn’t feel a new tricuspid valve would work, because the ventricles of TJ’s heart are too damaged to pump blood back out, so they need to try and use his healthier atrium. Again, another set back, and disappointing roller coaster ride. They plan to do the surgery in the cath lab at 9am Sunday morning.
Day 5 – 4/8/11
CAT scans and echocardiograms and x-rays are taken to plan and prepare. TJ’s lungs are looking a little congested and not as clear as before- especially the left side. They have been sending a tube in a little ways and suctioning them and have gotten some clots out. They plan to have a respiratory doctor send a scope in to his bronchioles to clear them out and repeat as necessary to try to prepare for the surgery on Monday. The Neurologist meets with Ty, Sadye and family to tell of her findings. She says that TJ’s brain scan does show brain waves, which means there is more than just rudimentary brain stem function to sustain life. His actual cerebral cortex is sending out some brain waves. But this good news is tempered with the fact that his CAT scan shows signs of ischemia and brain bleeding on both sides in the back and on the right side above his ear. This is similar to a stroke. She says he does have brain damage, but cannot say to what degree. It can range anywhere from being in a continual coma state, never opening his eyes or moving or talking, to being mostly ok, but maybe a little slow in speech or unable to walk properly. She says that kids are resilient, and time will only tell. The possibility of a more severe brain bleed and death are also still present. But the signs are good that he is improving. To what degree remains to be seen.
Day 4 – 4/7/11
As mom and dad and I are getting ready, I get a phone call from Ty that TJ’s eyes were moving under his closed lids and his feet and legs are moving. He also has a pulse which is from his own heart- above what the ECMO unit is doing! We are all amazed and feel that this is the first positive thing said since TJ went in for his procedure. The Cardio team has also met and discussed TJ’s case, and feel they have come up with a new plan to fix TJ’s heart. They think if they can let his body repair for 3 days until Monday, then they will try to do the repair for him. Plus the signs of movement and circulation are all positive. Just feels like a roller coaster ride, as we are all coming to terms with losing him, there is a glimmer of hope. It is all still so very risky and full of possible complications.
Day 3 – 4/6/11
Doctors meet with Ty and Sadye and family and let us know that TJ’s heart was severely damaged. It is as if he has suffered a massive heart attack. They do not feel there is anything they can do because the coronary artery runs so high, and it seems impossible for him to have the greater arteries switched back and his heart repaired. He would need a heart transplant to live, and now that he most likely has brain damage, he is not a candidate for a heart transplant. Plus, three to four months is the minimum amount of time needed to find a donor, and who knows when he would get a heart. They originally told us TJ can only stay on ECMO for 2 to 3 days maximum without any positive signs to show he is not brain dead. It is a very disheartening day, and family tries to come to grips with the idea that TJ’s battle may be over. Ty asks for a larger bed for TJ to allow him to sleep for half the night with him and then let his mother Sadye sleep with him for the other half. We leave to Ty’s with heavy hearts and try to prepare for the next day. It is difficult to be in Ty’s apartment among his and TJ’s things. We wonder how hard it will be to bring Ty home without his little “Mini Me.”
Day 2 – 4/5/11
At 4 am, TJ coughs so hard, he flat lines. Ty, by his side, moves out of the way so the crash cart can get to him. The doctors use paddles to get his heart beating again. Calls go out to mom and dad and Steph. Mom and dad get to the hospital so they can be with Ty and TJ. At 8 am while mom is filling me in via phone, a code blue is announced over the intercom. It’s TJ who has crashed again. This time doctors are giving CPR – 2 handed chest compressions. Ty and Sadye and mom and dad are witness to the swarm of doctors and nurses who are working on TJ’s little body. After 20 minutes, they are ready to get TJ down to the OR for emergency surgery. The cardio doctor straddles TJ and continues chest compressions as they take him through the hall and down the elevator. The doctors get a central line in and the family awaits news from the doctors.
The doctors meet with Ty and Sadye and the family. They tell us that CPR was given to TJ for about an hour and present the option to Ty and Sadye to put TJ on by-pass. They explain the risks of bleeding, brain damage from receiving CPR for so long and a poor prognosis. Ty and Sadye give written consent to put TJ on the by-pass machine. This requires two 3/8 inch tubes to be surgically placed in the carotid artery. They transfer TJ from the OR by-pass to a portable by-pass called ECMO so he can be moved up to the PICU. It took 10-12 doctors and nurses to transport him to his room. It’s the first time I get to see TJ as he is wheeled by. After getting situated in his room I get to see him – It was crushing and devastating to see him hooked to so many tubes.
Later that afternoon we find out he was given CPR for 90 minutes and not just an hour. The doctors are not optimistic, kind of doom and gloom. They are very concerned that his belly is so large and do not know what it is full of and are worried it is internal bleeding. When I go in to see TJ, he is very red and his tummy is very swollen. The doctors decide to use a syringe to see what it is. It is fluids and they drain his belly of the extra fluid and TJ’s color looks much better and the swelling throughout his body subsides. His vital signs improve as the pressure on his lungs and other organs is relieved.
Details on TJ's Progress
Day 1 – 4/4/11
TJ is admitted to day surgery for a routine catheterization of his heart. Doctors find a blockage in the lower section of his heart that they didn’t know about previously. They also discover that the coronary artery is positioned too high on the heart to proceed with the original mapped out plan to switch the major arteries for the upcoming surgery. TJ has a difficult time coming out of sedation. When he wakes he says, “I want my dad! I want my juice!” he also tells the anesthesiologist, “I don’t like you!” Because his blood pressure is up too high, the doctors decide to intubate him to allow his body not to work too hard and keep him over night.
Lighter Thoughts and Comic Relief
So, just wanted to share a few things that have lightened the somber mood that has prevailed this last week while watching TJ struggle so hard for his life. These are also very precious moments that don’t want to be forgotten.
First, the gentleness of Levi. That kid has melted some hearts and lifted some spirits this last weekend. Kim decided to come down for the day on Saturday and they left early in the morning. Around the halfway point of the trip, Levi asked “When are we going to get to heaven to see TJ?” You see, when Levi found out TJ would probably not make it on Wednesday night, he began sobbing and ended up crying himself to sleep that night.
He and TJ had just seen each other less than two months before, and Levi got to visit and stay the night with TJ. One day, we all took a trip for fun to ride on the “Max” in Portland- the light rail train that is there. As we were coming back, TJ and Levi were playing and TJ bit Levi’s upper arm. He came to me and said “Stephy, TJ bit me and he took a big bite!” I told TJ we don’t bite and he said, “I sorry!”
So after he was at the hospital a while, Katie, Levi and I were heading out to the “Old Spaghetti Factory” to get Ty and ourselves some lunch. As we walked through the open atrium we passed a little fountain. A little ways past the fountain, Katie handed Levi a penny and told him when we got back he could make a wish. The rest of the way to the parking garage Levi was pondering what he was gonna wish for. He was bouncing around as he walked and shrugging his shoulders happily. We walked over a pedestrian bridge and we heard Levi say “I know what I’m gonna wish for!” When we got to the car he pulled me close and said “I’m gonna wish that TJ will get better so we can play together!” Melt my heart!
Then, when we got back and were setting the food on the tables, Levi said “Come Here! Come Here!” He was waving for everyone to come over to him. When Ty, Katie, Kim, Kristine and were all close, he made his wish: “I wish that TJ will get better and that we can play together!” A little later, we overheard him making another wish with a new penny and he wished that he could be a superhero. He got up on the ledge about 18 inches up around the fountain and jumped off it. Then he disappointedly said “Hey! It didn’t work! I can’t fly!” I hope he will be satisfied if only one of his wishes comes true and he is able to play with TJ.
OK, the other funny thing that happened was a bit of comic relief. I was in a family room trying to do a little work when I heard announced over the intercom that there was a code green by the elevators on the third floor. So I ran out because that is where family and friends were sitting and holding vigil for TJ. A code green means that a family member is having an emergency such as fainting. When I got there I found out that a woman had fallen out of the elevator. From some eyewitness viewpoints, out of the corner of Sadye, Katie and Wendy’s eyes, they saw a woman come flying out of the elevator with food boxes in her hands and landed on her left arm but didn’t drop any of her food! After she fell out, about ten of her family members filed out and they were all pretty big family members. The elevator never came level with the floor and it was about 5 inches lower, and the woman was leaning on the door so when it stopped she just fell over and flew out! Her family members said “you’re not hurt are you?” as the woman had began to get up and said “no,” and then she fell back down to the ground and said “ya, Ya I’m hurt!” Her family members said “UH HUH! You stay down there honey! I smells a law suit here!”
So all the family members walk away from her with their food and sit down and Ty is the one who jumped up and called for help. He told the nurse on the phone that “A lady fell out of the elevator!” The nurse said “What???” And Ty repeated himself to her. Security and medical personnel arrived and they asked if she could feel something and she said “no.” Then they asked again and she said “yes, I can feel it now and that hurts!” They ended up putting her on a gurney, amid moans and groans that could be heard everywhere. It really appeared as though they were going to try to sue the hospital.
Sunday, April 10, 2011
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