Tuesday 11/24/09 I have been told the surgery to relieve pressure on the brain stem will be tomorrow. This is a very delicate surgery that involves risks, and so I again ask for prayer for Zac as well as the surgeon. May God's will be done in this situation.
Tuesday 11/24/09 I think FB was having some issues yesterday. I did not get to post yesterday. This morning Zac had a test to check out why he was bleeding, but they did not find any active bleeding in his esophagus or stomach. They seem to think that Zac's vomiting caused irritation and because his blood was so thin, this caused bleeding. Zac's surgery has been scheduled for 1:00 tomorrow at Baylor Hospital in Dallas. Thank you all for your well wishes and prayers. I do hope that all of you have a great Thanksgiving if I don't get a chance to post this later. May you all enjoy family and friends and remember to give thanks to THE ONE who deserves it!
Wednesday 11/25/09 Zac made it through his surgery. The Dr. was able to put a catheter into the area of the brain that was collecting fliud and connect it to the existing shunt that Zac already had. He is back in his ICU room recovering; he is on the ventilator for now because he is asleep from anesthesia. We will not know if this will help Zac's cognition until more time passes, nor will we know if this will help with his breathing and vision problems until more time passes. All the surgeon would say is that we will be hopeful that this surgery will help Zac.
Thanks for the updates Yuliya...I continue to post to Apriliaforum, and they continue to be very supportive. Hoping Zac (and JB) can make a full comeback. AXE
Friday 11/27/09 Well, Zac made it through his surgery that took place on Wednesday. The surgery lasted 2 1/2 hours and the surgeon was able to insert a catheter into the area of the brain (4th ventricle) where fluid was building up and then connect into the existing shunt that was already in place. CT scans showed that the placement of the catheter was good and that excess fliud had already been drained from this area. Zac has had no periods of apnea since the surgery, so hopefully this has been resolved. Zac has not really been keeping his eyes open very much since the surgery, so no communication on Zac's part has occured. When I was with him yesterday and today, I could tell that he made eye contact with me and felt that he heard what I was saying to him. However, his level of responsiveness is not as good. When I saw him at BIR, his face was flushed and his head, neck, shoulders down to his elbows were warm. From his elbows down to his hands, he was cold. His temperature was 100.2. The nurse took it a little later and it was 99.6. Later, his temp was 100.4. I called to check on him(just now) and the nurse said that she gave him some Tylenol, but has not taken his temp. since giving the Tylenol. I know that Zac has had many infections along the way, but would not want to see something so soon after surgery. I am not completely happy with the decision to discharge him back to BIR so soon after major surgery, but am happy that he is in the area where he is closely monitored. I know God's hand is on Zac and that He is in complete control of this situation. I must continue to put my faith and trust in Him!
Sunday 11/29/09 Found out today that Zac had 2 periods of apnea yesterday and 1 period of apnea today before we left BIR. They have him hooked up to a monitor that attaches to his ear that can detect when he stops breathing and also if his oxygen saturation level drops below a certain level. It still may be too soon to say whether or not the surgery helped with this issue; there is still swelling in the area from the surgery. Zac is still having difficulties tolerating his tube feedings. He is not digesting the feedings well, and has been having significant "residuals" in his stomach. His weight today was back down to 118.2# A positive thing that is going on with Zac is that he was swallowing today and had less secretions. It is still baffling to me that Zac is warm (and flushed) about his face, and down to his elbows. From his elbows down to his hands he is cold. He has goosebumps on his forearms, and so we placed a towel over his forearms and hands to warm them up. He used to be warm all the way down to his hands, with the pillowcases usually being damp with perspiration from the back of his arms. Everything about a brain injury is baffling and seems to change almost daily. If it weren't for the Lord giving me strength to get through this day by day, I would be a complete wreck. Thank all of you for your love, support, and prayers for Zac. Tomorrow he should start up with all of his therapies again. We need him to stay strong, stay infection free, and show progress so that he can stay at BIR. Please pray that the apnea will have been taken care of through surgery, and that Zac will start tolerating his feedings so that he can gain weight again and get the nutrition that his body needs.
Tuesday 12-1-09 Dr. Carlile called me today to discuss Zac's latest CT scan of his head. It looks like the shunt is working correctly. There was a small area where the surgery occured that showed blood and air present, but the amounts have decreased since the surgery. She said that when Zac is standing on the tilt table that his heart rate increases. There is a possibility that Zac's shunt (which is now programmable) may be "draining" too much fluid when he is standing, so the neurosurgeon has been contacted to check this out. She said that Zac still has difficulty looking to the left. There was discussion with the GI Dr. that if Zac did not start tolerating his feedings that they would change the location of his feeding tube past the stomach area. She stated that Zac was digesting his feedings better, so they will wait and watch. She and the dietician are working hard to help Zac gain weight. She also said that Zac had no apnea during the night last night, but that he did while he was up today. She was able to stimulate Zac and get him to take a breath. They are still keeping the monitor on him which detects when he stops breathing and if his oxygen level drops too low. He has not shown much consistency with answering questions with eye movements since before the surgery. I pray in earnest for Zac. He has been through so much and I beg God to be merciful to him. Zac is deserving of a miracle in his life; I know he would be a good and faithful servant. May God answer my prayers...
Thursday 12/3/09 I was able to go to BIR today and be present for his care conference today. The Dr's and therapists are pleased with Zac's increased level of alertness since earlier in the week. He is now on a 3rd neuro stimulator which seems to be helping with his alertness. Zac has been having issues with increased heart rate and blood pressure since his surgery. They are giving him medication to lower his blood pressure and they are monitoring his heart rate. Since his surgery, they have not put him back on a blood thinner and they will be doing a test on Sunday to check for blood clots in his arms and legs. Depending on what this shows, they may leave off the blood thinner since Zac already has the filters above and below his heart. The neurosurgeon came and reprogrammed his shunt valve so that it is not pulling off so much fluid from the brain. It took about 2 min. and is reprogrammed by the use of a magnet. Zac will be watched to see if there are any changes in his alertness. If there are negative changes, the setting will be returned to what it was originally set at. Everything is being done to see that Zac reaches the maximum potential for improvement. We were told today that it does not appear that Zac will progress to the point where his trach can be removed while at BIR. Unless some improvement occurs with his swallowing and management of his secretions, the trach will stay in. This means that our choices for places after discharge from BIR gets narrowed. It would be so wonderful if God allowed Zac to get rid of the trach! There are more places that would take him after he leaves BIR if he did not have a trach. I'm asking God to work in this area for us. Zac has still not shown any voluntary movement in his arms or legs. Zac was not able to answer any questions for me today. (with me being 100% sure of his eye movements for responses) He made great eye contact with me, and I did feel that he would have made vocalization if his trach were capped off. Zac is in a wonderful facility that is taking great care of him. I know they are doing everything in their power to help Zac reach his highest level of recovery. I still pray relentlessly to The higher power that I know is in control of this entire situation. I do pray with tears for my son, asking God to take any blessings that may have been for me, and give them to Zac.
Saturday 12/5/09 Zac's weight is down from 118 to 115. They seem to have it figured out that if he has high residuals (contents in his stomach)then they hold his feedings for a while. This has prevented episodes of vomiting for a while now; maybe Zac will gain some weight back. They removed the PICC line in his left arm because they felt he did not need it anymore and see it as a door for infection. He is getting a medication through I.V. to help with digestion, so they stuck him in his right hand for the I.V. site. I found out that Zac had to have 2 units of blood after his surgery because he was so anemic. The medicine is working to lower his blood pressure and heart rate. When he was put on the tilt table on Friday, his vital signs were in the normal range. Immediate prayer requests are for Zac to gain weight and for him to start swallowing consistently and manage his secretions so that his trach can come out. Oh how I pray for him to start swallowing. The respiratory therapist was telling me how many muscles it took for a person to swallow. It was a very large amount; I had never thought of it seeing how we all do this every day without having to think about it. Certain tongue movements must occur which Zac does not have much of at this time. I also pray that God would allow Zac to be able to communicate with us again. He has not been able to do this with eye movements since his surgery. Wouldn't it be great if God would allow him to swallow and speak?! This is my earnest petition on Zac's behalf
Sunday 12/6/09 The posse and i went to go see Zac today at BIR. He was fighting more congestion/secretions today. The respiratory therapist said that they will probably do a chest x-ray tomorrow to make sure another infection is not starting. His left eye has been red since Thursday afternoon, and it is not getting any better; now today his right eye was starting to look red also
Tuesday 12/8/09 Called and spoke with the nurse to get an update on Zac today. Zac has been given antibiotic drops for his red left eye and the nurse stated in her opinion his eye looked better. Zac's test to check for blood clots came back with no evidence of blood clots in his arms or legs. There was not a chest xray done, so maybe Zac's congestion/secretions have improved. Zac's heart rate continues to be high, so they are going to put a halter monitor on him for 24 hours. The nurse stated that Zac has not been able to answer any questions with eye movements, but watches the T.V. with eyes wide open. Some days my heart is so burdened that I don't know the right words to pray, but I know that God knows my heart, He knows how much I love my son and only want the best for him.
Hang in there......I'm at a loss, for the proper words of encouragement, but our Lord sees and knows all. He's come a long way, it is just a slow journey....
This is my least favorite thing to check so I always do it last. But I am hopeful that Zac has a full recovery. He is such a great kid- we have such fond memories of watching zac wrench and change tires on his Gixxer. Thanks for the updates Yuliya.
Thursday 12/10/09 Found out through reading someone's facebook page that Zac was going to have surgery this morning. BIR was apologetic and assumed that Zac's dad would inform me. Hopefully, this situation will not happen again. Zac had surgery to have the location of his feeding tube changed. Apparently Zac vomited again yesterday; so that along with the fact that he has not tolerated his feedings for a while and his extreme weight loss warrented the surgery. His nourishment will now go into his intestines below the stomach. The Dr. said he should still gain weight with the tube in this location. The reason for Zac's eye being so red was that it was scratched somehow. When Zac went to the vision clinic, the Dr. found a pretty bad corneal scratch. There was suspicion that this occured when someone was putting the ointment in his eyes that he gets daily. The Dr. ordered combination antibiotic/steriod drops to be placed in his eye. His eye did not look any better to me today. Hopefully, the drops will help soon. Zac finished wearing the halter monitor for the 24 hour period today. Dr. Carlile said that the cardiologist will have to read it and we might not have the results until next week. The neurosurgeon came by today and said that he would return in a week. He is going to keep the shunt draining at the current rate. He is thinking about putting in the bone flap earlier than originally planned. He will not give a date, only that he is thinking about doing it earlier than originally planned. If Zac will be leaving rehab at the end of the month as planned, I want this to occur so that there is less of a risk of injury for Zac if he has to go to a skilled nursing facility. Plus, the pressure in his head needs to be monitored with the bone flap back in because there will most likely be a change. Dr. Carlile (who is head of the program) stated that Zac is the most fragile patient they have in the entire building. We discussed how he has not stayed medically stable for a period of time longer than about 10 days since his injury. Planning for discharge from BIR will not be easy. There is a great need for prayer that the Lord will continue to lead, guide, and direct in this matter. I will be praying that he could return to the LTAC that he was in before transferring to BIR; there is a slim chance that this could occur. That would be so much better than a skilled nursing facility.
Friday 12/11/09 Dr. Carman (vision clinic) has taped Zac's eye shut due to the injury to the cornea. If this does not work something more drastic will be considered...stitching it shut. Mom's not very happy that this was most likely caused by someone putting ointment in his eye in the first place. The search for finding a place for Zac after discharge from BIR is not without its challenges. Even the case manager from Zac's insurance company is helping with finding a place. Zac is considered "medically complex" which makes this (along with his age) difficult. Please pray that God will lead us to the right facility and that it will be a good one that can give him the care he needs. Sunday 12/13/09 Here at BIR with Zac. They have a make shift patch over his left eye today to keep it shut so that it does not dry out. Zac is about to get a bath, so I thought I would do a quick update. There was supposed to be another eye Dr. come yesterday, but they never showed; maybe tomorrow.
Yuliya- do you have any indication what "medically complex" mean? Does it mean that physically he is unstable to some large degree?
Tuesday 12/16/09 The nurse at BIR said the chest xray came back clear, but Zac's white blood cell count is up so there is an infection somewhere. They did an EKG, but it just showed tachycardia, abnormally rapid heartbeat. There was nothing else significant that showed up on the EKG. The culture on Zac's urine was not back yet, but that might be where the infection is. Please continue to pray for Zac, that God will continue to lead, guide, and direct in the discharge plans. I pray for a facility that can provide the care that Zac needs, and I pray for a place close to home. I forgot to specifically ask for prayer because I also found out that Kindred (the LTAC that he was at before) is coming to eval Zac's medical situation on Monday to determine if they will accept him. We would like for this to occur!!
Wednesday 12/16/09 Found out that Zac is scheduled for surgery on his eyes next Monday. The Dr. will be implanting gold weights in his eyelids and stitching the corners of his eyes to help keep his eyes lubricated. This is needed because Zac is not blinking well, and his eyes do not close completely. The neurosurgeon came by today and is thinking about doing surgery next week to replace the bone flap. So, potentially Zac might have 2 surgeries next week. It does seem that the roller coaster ride continues for Zac and family. Please pray for Zac and the surgeons, that things will go smoothly and without complications.
I'm praying for all of the Champmans and thanking God for the gift of healing he will provide in the holidays. Thanks Yuliya for keeping us updated.
I can't tell you with certainty except that my understanding is that Zac is most medically unstable of the patients there. Remember that this is a rehab facility that I would think is designed to help patients regain their abilities once they overcome the immediate medical threats, but Zac is still in a situation where old and new medical challenges get in the way of actual rehab protocols. But I'm not a doctor so all of the above is just my understanding..
Thursday 12/17/09 Found out today that Zac will only be having one surgery next week. The neurosurgeon will be putting back in his bone flap on Monday at 7:15 in the morning. His recommendation is that the eye surgery be postponed due to the fact that there will be swelling in the eye area after his surgery. Zac should only stay a period of about 23 hours for observation and then return to BIR. The bone flap is to be overnighted from Virginia prior to the surgery. Kindred is coming to eval him tomorrow to see if he can go there after discharge from BIR. Zac's insurance company is not really wanting this, but this would be so much better than having to go to a nursing home. Please pray that Zac's surgery will go well, and that Kindred will accept him as a patient after his discharge, and that Zac's insurance company will agree that he needs to go to an LTAC and not a nursing home.
Saturday 12/19/09 Visited Zac today, he is about the same. Still having issues with increased heart rate at times. Getting ready for the surgery on Monday.
