Monday 12/21/09 Zac's surgery went well, that hurdle is behind us. Zac should recuperate at "big Baylor" tonight, and then return to BIR tomorrow. Had a meeting this afternoon, with several people present, with Dr. Carlile. Tears were shed, but hopefully all who love Zac can remain on the same page. We don't know what the future holds, but Zac will be surrounded by love that for sure
Tuesday 12/22/09 Zac ended up staying at "big baylor" hospital because the neurosurgeon wants the drain to be removed before Zac goes back to BIR. He will not remove the temporary drain until there is no more fluid/blood draining from the site of surgery. Zac is off the ventilator that he needed while under the effects of anesthesia, and breathing on his own again. Zac is still facing yet another surgery that is planned for this coming Monday. This is the eye surgery to implant gold weights in his eyelids to help his eyes close completely. I know this is not considered major surgery, but Zac has been through several surgeries lately and know this is hard on a body. Please pray for Zac to heal quickly from this last surgery (cranioplasty) and that his level of pain would be very minimal and short lived.
Friday 12/25/09 The Dr. wrote orders for Zac to be moved out of the ICU area and into a regular room this afternoon. The icy roads are preventing me from going to see Zac today on Christmas which is upsetting to me. Please God, allow Zac to feel a mother's love today, even when she can't get to him. Sunday 12/27/09 Zac is in a regular room at Baylor now. Today, his temp went up as did his heart rate. They did blood work and found out his white blood count is elevated. It seems that he has an infection somewhere. Tests will be run to determine the source of the infection. Needless to say, Zac was less responsive. Thanks to my sister and peeps for coming to see Zac today!!
Tuesday 12/29/09 Zac had his eye surgery yesterday as planned, and all went well. I started developing back pain on my way to Dallas and it became intolerable while Zac was in surgery. I spoke with the surgeon who said the procedure went without complications, and then I called in the calvery for myself. Zac's older sister stayed at the hospital with Zac while my sister and friend Wendy drove me to the emergency room. It was confirmed with a CT scan that I had a kidney stone. I don't know if there is ever a good time to have a kidney stone, but the timing was lousy yesterday. Thank goodness the Lord has his hand on all situations, and there was someone to come and get me while someone could stay with Zac. I called the nurses station this morning and Zac is still at "big Balor". The neurosurgeon will be the one to decide when Zac can return to BIR. She told me the therapist was in to give Zac range of motion to his arms and legs earlier this morning. She told me Zac wasn't opening his eyes much today so far, probably because of the swelling in his eyes from the surgery. Thank all of you for your continued prayer!!
Wednesday 12/30/09 Saw Zac today; his eyes were so swollen that he was unable to open them for me. He resumed his therapies today, but not much accomplished since Zac's only form of communication is with his eyes. Thanks to Sharon and Lawrence who were with Zac when I got there after lunch. Thanks to friends who visited Zac after I left and said he did manage to get his eyes open somewhat for them. Thank you Lord for a wonderful son!
Friday 1-1-2010 The first day of a new year. What will this year hold for our family? Zac was sitting up in his wheelchair when the posse and I arrived. He had his eyes partially opened, but not very much. His eye lids are still swollen from the surgery. After Zac was transferred back to bed, he got a hand massage from his aunt Janet and dozed off until company arrived. As we were telling him good bye, he really perked up and opened up his eyes fully. Zac's weight has dropped to 114.1 as of Dec. 29th Monday there will be a care conference where his discharge plans will be discussed. At this point, it seems that Zac will be going to a skilled nursing facility. I would ask for prayers that God would allow us to find a good one close to home.
Monday 1-4-2010 The care conference was today. My friend Wendy went with me today and she was a good source of support for me. The rest of the posse lended support via cell phones today. The discharge plans are for 2 weeks. The social worker told me before we left, that the nursing home on the south part of Ft. Worth that we were hoping would accept Zac stated that they would not. Again, one of the biggest obstacles is Zac's age- being under the age of 21. So, the search continues for a skilled nursing facility that will accept Zac. By the time I had to leave, the eye surgeon had not come to check on Zac. The neurosurgeon gave the nurses orders to remove the stitches from his cranioplasty surgery. Zac's appearance is good since that surgery and the removal of his stitches. Now, we just need the swelling in his eyes to resolve so that he can hold his eyes open like he used to. One of the therapists asked Zac today if his eyes were bothering him, and he gave a definite "yes" with eye movements. Please pray for a facility to be located close to home, that is nice, for Zac to transfer to. Also pray that Zac's eyes would heal quickly and completely from the eye surgery. God bless you all
Wednesday 1/6/10 The social worker from Baylor called me to say that a skilled nursing facility from Weatherford is going to visit Baylor,and review Zac's medical information to decide if they will accept him as a patient. They are going to be at Baylor around 9:00 in the morning. This is not the facility of choice, but it is close to home. I just pray that God will continue to lead, guide, and direct.
Sunday 1-10-2010 Zac had the posse come see him today as well as his uncle Joey. My twin sister Janet gave him her famous hand massage that helps with the increased tone in his fingers which is causing them to want to curl downward as if he is trying to make a fist. Zac got his own personal wheelchair last week and it is very nice. He will get to take this one with him when he is discharged from BIR. We still do not have a facility yet, and discharge is to be next Monday. We will continue to trust the Lord for His guidance. Zac's weight has increased from 114 to 116.4. The swelling in his eyes has gone down, but it looks as if there could still be a little more to go. Zac is able to to open his eyes as fully as they will go now with the weights in his eyelids. Zac still has very little tongue movement or lip movement, and is swallowing inconsistently. Because of these things, he is not able to manage his secretions in his mouth and airway and must have his tracheostomy. Thank you all for your continued prayers for Zac. I tell him every time i see him how many people love him and are praying for him
Jan. 15-17 The nursing home in Weatherford has decided that Zac is too medically complex for them, so Zac will not be transferring to a place in Weatherford. There is a facility on the west side of Ft. Worth that may accept him as a patient. Looks like the discharge plans are for Zac to be transferred to a SNF on the west side of Ft. Worth on Monday. The help of my sister, and one of her friends made finding this facility possible. Thanks to family and total strangers who care enough about Zac to help find a place for him. God Bless you all !!! Thank you all for your kind words, well wishes, and continued prayers. This has been a long journey, and it is continuing. I hope you will all continue this journey with us and keep the prayers coming. May God truly bless you all !!!
Monday 01/18/10 Zac was transferred today to a nursing home on the west side of Ft. Worth. It is the Courtyards at Fort Worth. It has a pulmonary unit where Zac is in a private room. We were told by the administrator that Zac will be allowed to stay in the pulmonary unit, in a private room even after his 30 days of insurance coverage runs out. She is a christian and feels God has directed Zac to her facility. She and I used to go to church together. God has really guided us to this facility I believe. Thank you all for your prayers, keep them coming that Zac will continue to get the care he needs and that his condition will continue to improve!! Zac is now at "Courtyards at Fort Worth" located at 8001 Western Hills Blvd. He is in the pulmonary unit, room 37. Thank you to "the posse" for coming over this afternoon, running to Target to get things that were needed, for helping to hang pictures on the wall for me, and for helping take care of Zac!!! Love you all XOXOXO
Thursday, 01/22/10 Spent the day with Zac and attended one of his therapy sessions. The OT and PT worked together with Zac sitting him up on the side of the treatment mat. Zac worked on using his stomach muscles to help him sit up and he was able to hold his head up on his own for 5-10 seconds!! Zac was doing this in front of a mirror so that he could see himself. I think he did well in therapy today Zac is getting settled in at the nursing home. He is rec'g therapy and the staff/facility seem willing to get equipment needed for him (within reason). I was told today that they are working on getting a tilt table for him to use like he used at Baylor. The director of nurses is ordering a new shower chair as well. Admittedly, things are much different than at rehab in Dallas, but this is the road we must take for now. I think everyone at the nursing home will come to know and love Zac, and he will hold a special place in their hearts before too long!!
Saturday 1/23/10 Zac was running a temp today, so he was less responsive. He had several visitors today! Found out that the nursing staff would like Zac to be closer to their office/desk, so he will be moving into a different room tomorrow or Monday. I have mixed emotions about this, as Zac has enjoyed the view out of his window. Sunday 1/24/10 Zac's temp was normal today while I was there. He did a good job of keeping his "pirate eye" (tee hee) open once I cleaned it out. We watched an old movie with Steve Martin and Queen Latifa, and he opened his eye throughout the movie. He sat up in his wheelchair for about 4 hours today. It was a good day; better than yesterday Monday, 1/25/10 Aunt Janet, Julia and I went to see Zac this afternoon. He was really doing a great job of keeping his eye(s) open! Heard he had another great day in therapy from my friend; able to keep his head up by himself for almost a full minute!!
Tuesday 1/26/10 Zac did good again in therapy although he didn't beat his record of almost a minute controlling his head by himself. I think he enjoyed seeing his friend Alannah today and catching up on her busy cutting horse schedule. After I left, the nurse called to tell me that they did move him to a different room that is closer to the nurses station. Zac has lost some weight again; man, we need to fatten that boy up!! via Jenny
Wednesday 1/27/10 My friend told me that Zac was doing all kinds of moving today during therapy. He is starting to move his arms and legs some when given a cold stimulus, or a good stretch to the hamstrings. Ouch!! One therapy session that I witnessed, he was uncomfortable laying on the therapy mat and was really trying to re-position himself, it appeared, by moving his arms and legs. This was the first time I had seen what I would call true, purposeful movement on Zac's part. He does not do this all the time, and I have mainly been seeing it during the therapy sessions, although I have seen him move some in his wheelchair. The speech therapist held up 2 cards with pictures on them in front of Zac. One had a ball on it, the other had a pen on it. She asked him to look at the ball and he did. She mixed up the cards and asked him to look at the ball, and he did it again. Then, she asked him to look at the pen, and he did. He did this again with 2 different cards with different pictures. He was successful each time. Then, he became tired and unable to keep his eyes open. People ask me all the time if Zac knows who I am and if I think he understands me. I do. I know when I look into his eyes that he knows it's me and I feel that he understands what I say to him. Friday 1/29/10 They switched out Zac's trach yesterday and so he was coughing quite a bit yesterday. His heart rate has been up a little since yesterday too. The therapists said that he was really tired and did not participate much yesterday in therapy, but he did better today. He was able to hold his head up on his own several times for 15-20 seconds each time.
Sunday 1/31/10 Zac is still coughing quite a bit. Results from some blood work done on Friday showed that his white blood cell count is elevated. They did a chest x-ray today and will be repeating the blood work tomorrow to see if his white blood cell count is still elevated. I know Zac enjoyed seeing his aunt Janet and Becky today!! His sister Julia talked to him until he relaxed and closed his eyes. She loves her brother ) Monday 2/1/10 Found out Zac has a right lower lobe pneumonia and will be started on 2 antibiotics. I heard Zac had a good day in therapy. Thank you all for your prayers and please continue to pray for Zac as well as the family. Things can get strained at times. Tuesday 2/2/10 Zac has lost a little more weight and now weighs 116#. Spoke with the dietician and they are changing his feeding formula tomorrow. I was told Zac did well in therapy working on head control. He held his head up for approx. a minute and a half, then 55 sec. and then 45 seconds. I think he did pretty good for a fella fighting pneumonia!!
2/4/10 Zac held his head up on his own for over 3 minutes today!! I will have to say that after an awesome therapy session with PT and OT, he "rested" the rest of the time I was there. The things that seem so effortless to us, huh?! 2/5/10 Zac can inconsistently answer "yes" "no" questions. He is still on the antibiotics for the pneumonia and I have not been told what the latest chest x-ray showed as far as how his lungs look. Zac had to be taken to the emergency room today because his feeding tube got clogged. They were able to unclog it and send Zac back to the nursing home. via Jenny Here is Julia catching Zac up on things, and Zac holding his head up on his own for 3 minutes. Image Unavailable, Please Login Image Unavailable, Please Login
That is great news. Has he started to put some weight on too? He looks much better than previous. I think Jon would like his roomie back with him. Praying daily.
Really sorry about the gap, I've been working and will be traveling until end of February so the updates may be a little sporadic over the next couple of weeks. 2/6/10 Found out today that Zac has MRSA again. They put a PICC line in his left arm for I.V. antibiotics to be started. Zac held his head up on his own for 6 and a half minutes today, a new record for him. He was able to perform opening and closing of his eye, that did not have the patch over it, upon command 7 times consecutively!!! Aunt Janet got to witness this as well today 2/7/10 Repeat chest xray done today, do not know the results yet. Zac was coughing a bunch today, but at least he has a strong enough cough to get it up. Thank you all for praying for Zac and the family. I must remember I cannot control the actions of others; I can only control my actions. As long as I am kept informed of Zac's medical condition by the facility, I do not need to be concerned with the ex. 2/8/10 Read the xray report myself today, Zac's pneumonia is completely gone! Today in therapy they had him standing using a "standing frame". With the assist of 4 people, Zac stood up with a sling that supported his bottom for 10 minutes. This was very taxing on Zac, but he did so well!! 2/9/10 Zac was coughing a lot tonight. With his infection, those that want to get close to him must put on a gown and mask. Zac was not very perky and his heart rate was up a little. 2/10/10 Zac has lost a little more weight, he is down to 115#. The dietician said that they are going to try and keep Zac's feeding going continuously, even during therapy and will see if he gains weight in a week's time. If he does not, then we talked about other options. It is very exciting using red/"no" and green/"yes" cards with Zac, and him answering questions about 80-90% of the time!! Zac has 2 cards; one is red and has the word "no" on it, and the other one is green and has the word "yes" on it. Zac can answer questions approx. 80-90% of the time. Today, when discussing Zac's weight loss in his room while he was still in bed, the dietician held up the cards and asked Zac if he was hungry. He said "yes". Because he has not tolerated his feedings well for some time, they revised his feeding tube a while back and placed the feeding part of it past his stomach and into his intestines. So, he does feel hungry. She stated that they may try feeding him some in his stomach to help him not feel hungry. That is hard to hear, that Zac is hungry; BUT it is exciting that Zac can communicate with us once again. The speech therapist asked Zac if he had double vision, he said "no". She asked him if his vision was blurry, he said "no". So, today he did not have to be a pirate. It is noticeable that his eyes are not tracking the same direction, so his vision can't be normal. Today, I made sure all the follow up Dr's appts were taken care of. Zac is to return to his neurosurgeon next Wed. in Dallas. The social worker was going to set up the vision Dr. appt. with someone that will come to the facility. The neurologist that read the last EEG and found that Zac was having mild seizure activity, and ordered a new medication for Zac to take, is going to get back with nursing about follow up orders. It was quite the productive day!!! 2/12/10 My husband Bobby drove me to go see Zac today. I had a great time "talking" with Zac. I asked him several different questions of which he answered every single one of them by looking at either the "yes" or "no" cards. It looks as if no one has shaved him in a few days, so I asked Zac if he was growing a beard to which he said "no". ))))))) via Jenny
2/15/2010 Ok, here we go again... Yesterday, Zac's heart rate went up to 156 at the nursing home and would not come down. His Drs said to send him to the hospital, so off to ER we went. In the ER his heart rate just kept getting higher and could not be controlled except with medicine that also lowered his blood pressure, so they could not keep giving it to him. They decided to admit him for observation. Later on, after his heart rate went over 170 and his temp reached 104.7, they transferred him to ICU. He is still in ICU at Harris downtown. All lab work and chest xrays came back showing nothing. This morning, he is resting comfortably with a heart rate of 111 and a temp of 97.5. They had to put a cooling blanket on him and pack him with ice to get his temp down. His heart rate has come down since his temp has come down and with the help of pain medicine which also has Tylenol in it. We still don't have any answers for why all this happenend. Thank you all for praying for Zac, and I will keep you posted as I can.
