Benefit for Zac Chapman

4-20

Zac has red eyes, the left one worse than the right. They have switched to antibiotic ointment for his eyes instead of drops. There is to be a repeat chest xray done on the 22nd. Zac was coughing a lot while we were there today. They have switched his beds, he is no longer in the very top of the line clinitron bed. His new bed is an air flow bed, but not as comfy as the other one.

Julia and I helped Zac send a couple of text messages tonight. He has to point out the words letter by letter and then we text for him because he is not able to do this yet on his cell phone. He is able to control the volume on the remote control with his left index finger as well as the channel button. Medicaid approved more OT and ST, still waiting on approval for PT. The occupational therapist said Zac worked so hard for her today and did some new movements with his right arm today. She had him work on some writing with his left hand since he has better control with his left hand at this time.
I felt the switch of beds was imminent. Medicaid was not covering the expense of the very top of the line bed, and Zac no longer has any open wounds. Zac already communicated that this new bed is not as comfortable as the other bed. Medicaid does not even cover the expense of this new air flow bed, but it is a lower cost that the nursing home is "eating" for Zac. Thank goodness the administrator has a burden for Zac and cares about his needs

4-21

Zac said he did not sleep very well in his different bed His eyes are still red, especially his left eye. Zac is doing so well with the remote control for the T.V. He can control the volume, channels, and the mute button with his left index finger. I heard that when the speech therapist was working with him today with the speaking valve, he said "I want to go home".

I know that Zac wants to go home, but he is not ready for that yet. There is still more progress to be made with therapy, and hopefully he will get the trach out in the future. Zac is still sick currently and on I.V. antibiotics. He was still coughing a lot tonight. A repeat chest xray is to be done tomorrow, hopefully it will show improvement

 

4-22

Zac had all 3 therapies today. In between each one he would point to the bed and I would say, "not yet". After his last therapy, he got to be put back in bed and he was ZONKED. He did not sleep well again last night because of the different bed and was not feeling so hot today. He continues with a lot of coughing that is productive. The chest xray had not been done by the time I had to leave.

via Jenny

 

4-25

The xray showed that Zac still has pneumonitis, although it is clearing up. Zac is gaining weight, he now weighs 125.8#. Zac went to his church again today.

 

4-26

Zac worked on talking with the speaking valve on, and was counting from 1-20. He also counted from 95-100. It is very fatiguing for him, and he has to concentrate on his breathing and swallowing while speaking. He stood in the standing frame again and then was put on a bicycle for his legs like he used while at rehab in Dallas. Over the weekend, he rocked in his recliner using his left leg. Zac is so awesome

4-27

An appointment has been made with the neuro eye Dr for next Monday. I can't wait, Zac's poor vision is a big hinderance right now.

4-29

Zac did not sleep well last night due to coughing and staff coming into his room and turning on lights. Zac has communicated to me that he likes to sleep with all of the lights turned off, so the speech therapist told him she would tell the staff not to turn on lights when they come in his room to check on him.

5-1

Spent quality time with #1 son today. His Dad got him an iphone, so trimmed Zac's fingernails (at his request) in hopes that he can do some stuff on it. Zac said that he hasn't got to work with it much yet. Zac was going to his church again this evening. Zac is still coughing some, but not near as much. Zac did some more rocking in his recliner today

via Jenny

 

5-3

Zac's dad said the Dr. did recommend glasses for Zac. I was shocked to hear that he did not recommend a prism for one of the lenses, just regular, ordinary glasses. The Dr wants physical therapy to have zac perform eye exercises for strengthening of his eye muscles. The Dr wants to see Zac again in 4 months.

5-4

Zac is still coughing a lot. They say the pneumonitis is cleared up, but that he is still having increased secretions from this recent episode. Zac communicated to me that the swallow study is still scheduled for some day this week; I'm surprised with as much coughing as he is doing. They weighed Zac again today and he now weighs 128.6#!!!
(just a little more son and you will weigh more than your mother... LOL)

5-6

Zac had the swallow study done today. Unfortunately, he did not do well. He aspirated
on 3 different consistencies, which means" things didn't go down the right pipe." The good thing was that he continues to have a strong cough. The results of the study give the speech therapist the information on exactly what needs to be worked on/strengthened.

via Jenny

 

Sorry for the gap, my husband's been in the hospital for over a week himself and Facebook is blocked there.

5-10

Sitting in the surgery waiting area of Harris because Zac is having surgery for fluid around the heart. this developed very quickly over today. This should only take 20 min to an hour

Zac is out of surgery and we hope to see him in an hour or so. He is in the heart center icu. The surgeon said he will have to stay here a few days, up to a week. This all developed very fast and I'm glad they caught this complication so fast

5-11

Zac is doing well today. He is not having any pain, only soreness where the drainage tube is. All of his vital signs are good. They still have him hooked up to the vent even though he is breathing on his own. Zac is happy that they have started his tube feedings back this morning.

5-13

Zac was transferred out of ICU this morning, but remains in the heart center on the 4th floor. They removed the drainage tube yesterday. Zac was coughing a lot today and having swelling in his feet and right arm. The Dr. ordered a diuretic (fluid removing) medicine and robitussin for his coughing. I hope this helps his coughing because Zac said it hurts where his incision is when he coughs.

5-14

Zac was discharged from the hospital late this afternoon and is back at the Courtyards. Zac also has his glasses, hopefully they will make a difference for his vision!

5-16

Zac is settled back in at The Courtyards. All the staff said they are glad to have him back. He now has glasses that he wears all the time, but continues to have double vision. Zac was presented an award on Sat. and is proud of it. He still has some swelling in his right arm, redness in his face, and he just told us that he has ringing in his ears that he has had a while.

5-17

Zac worked hard today for all the therapists. It was apparent that his endurance has been affected by his recent surgery, but the kid still worked as hard as he could today!

5-18

Chest xray yesterday showed Zac has pneumonia in the base of both the right and left lungs. A CT scan done while Zac was recently in the hospital showed fluid in both lungs. Looks like this is still an issue. Zac is going to wear an eye patch that will be alternated from eye to eye to strengthen his eyes and hopefully help with the double vision.

 

For the most part, at least we're back home from the hospital, so thanks for the well-wishes. Viral meningitis.. nasty bug.

 

5-21

Zac is still on antibiotics for his pneumonia. We are waiting (again) for approval for more therapy. Medicaid only allows for therapy 3 times a week each for physical, occupational, and speech therapy. Zac said that he wants each therapy 5 days a week. How frustrating to have to tell your son that his insurance doesn't allow that!

Zac is going to see a different ENT Dr. on Monday for his hearing loss and the ringing in his ears. Zac is gaining more movement in his right arm and leg.

5-22

Had a good day with Zac. A repeat chest xray showed that his lungs are clear!! Thanks to meds and the holistic practitioner, Zac's pneumonia cleared up fast!! Got to do therapy with Zac today as well, sure am blessed to be a therapist!! I believe everything happens for a reason, and that includes God directing my career path

5-24

Zac had his ENT appt this morning at 10:30. We didn't leave until 1:00. They performed a hearing test on Zac and he has profound hearing loss in the left ear and has moderate hearing loss in the right ear. The Dr. feels the damage/loss is permanent. There is nothing they can do for the hearing loss in the left ear, but are looking at what could be done for the right ear.

via Jenny

 

5-29

Here we are on the roller coaster again... Zac had to be taken to the ER yesterday. He is in ICU with left upper lobe pneumonia and fluid around his heart and around the right lung. Cultures from his blood and sputum are both growing buggies. Please pray for him!! Even though Zac was not feeling well yesterday, he did stand up in the parallel bars with assistance!!!!!

Spent 7 hours with Zac today. They are pushing the fluids to help keep his blood pressure from getting too low again. He ran a little bit of a temp at one point today, but that was taken care of with Tylenol and Motrin. He is coughing more as expected, and having to be deep suctioned to help him breathe easier.

One of the Drs came by to see Zac and she asked him if there was anything she could do for him and he mouthed " get me some food". LOL They are to start his tube feedings up again tonight. I want to thank my sister Janet who, once again, was by my side in the ER and stayed with me until Zac was settled in ICU and we were allowed to see him. This was at 3 o'clock this morning!

5-30

Here in ICU with Zac. I got a call on my way over from his lung Dr. stating that he was going to have to drain fluid from around Zac's lungs. I got here and they were still doing the procedure. The Dr. removed a liter of fluid; it will be sent to the lab and tested to see if it is infected. The cardiologist came by and said an echocardiogram showed that there was little to no fluid around Zac's heart, but that his lining of the heart was starting to thicken. He will start Zac on an anti-inflammatory medication for a month and then do a repeat echo.

6-1

Zac was transferred out of icu yesterday into a regular room. He is still a little swollen in his arms and feet, but the Dr feels this will go away in time. The Dr's also feel that Zac may get to return to the Courtyards tomorrow or the day after. It appears Zac was "septic" and they THINK that his recent surgery could have contributed to causing this. Will we ever really know? All I know is my kid is a fighter!!!!

6-3

Zac is doing better. He had more swelling today so the Dr was going to give a dose of Lasix, a diuretic, to help get some of that fluid off of him. Zac wore his speaking valve for 3 hours today and tolerated wearing it very well. The Dr's are giving him the clearance to be discharged IF the Courtyards can give him all the antibiotics he needs to be on. More medical red tape...

 

6-4

Well, it seems that the Courtyards won't take Zac back while he is on antibiotics this time. So, the choices are 1) he stays in the hospital the remainder of the course of his antibiotics, which is until the 13th 2) possibly going to an LTAC like he was in before when he first came back to Texas 3) returning to Baylor in Dallas if they will accept him on antibiotics

Zac does not like being in the hospital, so this is not his first choice. All along this journey when God seems to be shutting one door, He is actually opening another door. Zac and I talked about how this may be God shutting a door to guide him through the next door.

6-7

The person from BIR came to assess Zac today. She will not have an answer for us until tomorrow if BIR will take Zac while he is still on the antibiotics. We already know they want him back, it's just if they will take him while he is getting the I.v. antibiotics.

Zac is not doing as well today. They switched his sleeping meds and gave him Ambien. He is not moving as well today and he is "hung over". His heart rate is also up. Not one of his better days

Ok, after Zac spiked a temp of 103, they did a repeat chest xray and a CT scan of the chest. Lungs look good, heart looks good. So, they determined that a (i.v.) line that was put in his right groin area, that has been in there since he came in through ER, has been in too long and was a risk for infection. It was removed today. They feel this is what caused his fever and other problems today.

6-8

Zac is still running a temp and not feeling well. Baylor has said they will gladly take him back when he is finished with his antibiotics. So, looks like Zac will be in the hospital through Sunday. The plan is for Zac to return to the Courtyards so that we can take him back to Dallas to see his neurosurgeon. Zac still does not have any movement on the right side of his face.

We need the neurosurgeon to tell us if there is something that can be done to fix this. If there is something (surgery) that can be done, we need him to tell us if it is something that SHOULD be done or should be waited on. If there is nothing that can/should be done now, Zac will return to BIR in Dallas. Please pray with us for God's guidance in all of these matters!!!

If anyone can help stay some with Zac, there is a great need for this. Please call me or text me.

via Jenny

 

6-9

Zac has been transferred to the heart center at Harris, room 102. He still has a temp today. I am battling vertigo today and will not make it up there tonight to see him. Someone from New River is sitting with him tonight. Continue the prayers that Zac can get over infection and return to the Courtyards on Mon or Tues.

6-10

Zac is still in the heart center. He had a temp of 99.1 this morning, but it was gone by 12:00. Zac's blood pressure is still a little on the low side, but his heart rate is good. Still unsure if Zac will be able to leave the hospital on Monday with his latest temperature. I know Zac sure hopes he gets to leave!!!

6-12

Zac is still "hanging in the hospital". Although he is pretty tired of being in the hospital, he is doing better and is making great progress towards getting that trach out! He has been tolerating the speaking valve so well that today the lung Dr. said that his trach could be capped.

Capping his trach makes Zac breath through his mouth and nose only. If he can continue to tolerate his trach being capped, he will be close to having his trach removed. However, this does not mean that he is safe to eat or drink yet. His swallowing will still have to improve, but if he is this close to getting the trach out, he should be closer to a Wendy's frosty

6-14

Day 3 of Zac having his trach capped, and a repeat swallow study. This time, Zac did better on pudding consistency so they are approving pureed food trials!!! This means that Zac is allowed pureed foods, or things the consistency of pudding, in the presence of the speech therapist only.

Zac was so funny, when he heard the good news he immediately told me what kind of pudding to go buy him at the store. He says he understands that he can only eat this with the speech therapist, but he still wants to eat HIS flavor of pudding I told him there better not be any boot-legging of pudding into his room!!!

6-15

Today, Zac ate applesauce. He says he ate about 6-7 spoonfuls. The pulmonologist came by Zac's room about 10:30 last night. He said that after Zac has been capped for 48 hours around the clock, with no problems, that they will remove his trach. So, if all goes well, Zac should have his trach out on Thursday!!!!

I thank God for this day. I thank God that Zac is getting his trach out and that he is eating. When I saw Zac today, he said he would like mashed potatos with gravy. I called the speech therapist and left a voicemail for her. I hope they can honor Zac's request for what he gets to eat tomorrow. Of course, Zac also asked me if he could have a roll to go with the mashed potatos and gravy (Not yet son)

6-16

Well, they brought Zac mashed potatos and gravy today and he ate 5 spoonfuls!! He said tomorrow they will bring him more. I got his requested pudding up there and I told him to tell the speech therapist that he wants some mashed potatos and gravy AND then some pudding. He said he would tell her. The plan is to remove his trach around 8:00 in the morning!!!!!!!!!

Picture: Zac checking his email at the hospital on the iPad
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6-17

A day we have been praying for... the removal of Zac's trach!!! This is Michael, the respiratory therapist who has helped Zac on other trips to Harris.

Man, a heart full of gratitude to a faithful Lord who answered another prayer. Zac's trach was removed this morning around 9:00 without a hitch. He is doing fine. I heard that the speech therapist may even want to do another swallow study on Zac before he leaves the hospital to see if he is ready for more than pureed!!!
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6-18

Zac had his 4th swallow study done today before he left Harris hospital. He has already shown improvement since his earlier one this week and is now allowed honey thickness drinks. He is also allowed to eat pureed foods(as in the picture: mashed potatos, roast beef, and peas) with family and staff. He ate 13 spoonfuls of a meal, had some thickened apple juice and coke!!!!!

6-19

Today, Zac got served 3 meals. It takes him a while to eat; the rule is he must swallow 3 times after each bite before he can have another. So, by the time he was finished with breakfast, here came his lunch tray. By the time he told me he was done with the lunch tray, they served his dinner tray not long after. I told Zac it was just like the old days when he would graze all day long

I am acting like I did when he was little. I won't feed him anything unless I have tasted it first. I'm sorry to admit it, but there was something green for lunch that I would not let him eat; salt or pepper was not going to help that! Dinner had pureed carrots, but they needed help too. I worry that Zac will grow weary of mashed potatos soon...

Tomorrow Zac is going to church if he feels ok. He is looking forward to that. Monday, I get to bring Zac a cheeseburger from...you guessed it... WENDY's, and they are going to puree it for him. I KNOW he is looking forward to that. He still cannot have the frosty however because the ice cream would melt and become too thin for him. I feel that he will get that frosty soon though, let's pray about that!!!!

Seriously though, I do have a prayer request. The right side of Zac's face is still not moving. I want to pray that God will take care of this like He has done everything else. It hurt me to hear my son say that he looked "goofy". He wants to be "normal" again, he used those exact words with me. Please pray with me, we go see the neurosurgeon next Wed about this.

via Jenny

What is this you ask? Why that would be Zac's first meal since his accident
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6-21

Zac had his Wendy's cheeseburger today, in pureed form. Although it did not look that appealing, Zac said it was good to him! The speech therapist did let me get Zac a frosty and she was going to add thickener to it, re-freeze it, and Zac was going to have some of it with dinner tonight. We will have to see how it tasted for him!

Found out that Zac didn't get to eat dinner or his frosty tonight because he got sick to his stomach. I think his body will need time to adjust to real food again. Pray for Zac tonight...

6-22

Zac taken back to ER today with low oxygen sats and difficulty/labored breathing. He will be admitted back to Harris. Please pray for him, he is so sick of this.

6-23

Zac had a CT scan done late last night of his chest, no Dr. in yet to review results. They have Zac on oxygen through his nose, a low setting, to keep him breathing a liitle more comfortably. His white blood cell count is elevated, so there seems to be infection somewhere. They are not allowing Zac to eat anything until speech therapy comes and evaluates his swallowing. He is so weak and this is affecting his swallowing. Zac is so tired of being in the hospital, he is a little down. Thank you all for your prayers, keep them up!!!

Well, Zac is a little worse today. He is still requiring oxygen for his difficulty breathing, and he sounds congested. The speech therapist gave him some thickened water, but Zac was not able to swallow it well, so they are not allowing anything by mouth for now.

The CT scan and an echocardiogram showed that Zac does have some fluid around his left lung and also around his heart. The lung Dr. said that the amount of fluid around the lung is minimal. The heart Dr. said that the amount of fluid around the heart will be monitored and should be handled with medicine. Zac is having some pain and discomfort and also had a temp of 102 today. Thank you for your prayers!!

 

6-26

At the hospital with Zac. He getting blood right now because his hemoglobin was too low. He is not running a temp and his blood pressure has come up. The cardiologist said they will monitor the fluid ( which he said is thicker than liquid, like runny jello) around zac's heart. They cannot explain why Zac keeps collecting fluid around his heart and lungs. We need to ask God to take care of this because if it doesn't resolve, or keeps happening, it will damage the lining around his heart and major surgery will be required. God, you have brought Zac so far, keep up the miracles in his life, please take care of this fluid completely and permanently!!

6-27

There will be a fundraiser for Zac this Tuesday at the Ci Ci's pizza here in Weatherford located at 325 Adams Dr. It is from 11:00am-11:00pm. This is for dine in or carry out, but you must mention Zac's name. Please come and help out a very deserving young man

6-28

At the hospital with Zac. One Dr. has come so far and said Zac is looking better. There is to be a repeat echocardiogram done today which the cardiologist will have to read, and we are waiting on blood cultures done yesterday to see if they grow anything. Speech therapy will also take a look at him to see if it is safe for Zac to resume eating anything by mouth. Although Zac is moving his arms and legs better, his voice is still weak, so I don't know if he is ready for that yet. I know he wants to be able to eat again, so I will pray for added strength in that area.

There is a chance that Zac will be dismissed from the hospital late today, but more likely he will get to leave tomorrow. This depends on the echo and blood work of course.

6-29

Zac is being dismissed from the hospital today. I was told that he will be allowed to eat pureed food, but only with the speech therapist. That is better than no food at all by mouth!

6-30

Zac was released from the hospital around 6 yesterday. Much to my surprise Zac showed up at the fundraiser later that same evening.
Zac is back at the courtyards. Once again we are caught in the trap of medical red tape, waiting on approval for more therapy. Since Zac is now only allowed to eat with the speech therapist, he did not get anything by mouth today. I enjoyed a great therapy session with Zac; exercising his arms, legs, and mouth.

via Jenny

 

7-6

Zac had an appt. on the 2nd with his neurosurgeon in Dallas. The Dr. said that more testing needed to be done to determine the extent of nerve damage that is affecting the right side of Zac's face. This testing can be done in Dallas when he returns to BIR.
Zac is getting therapy again at the courtyards after a period of waiting on medical red tape. He is only allowed to eat with the speech therapist, but he did very well yesterday when I was present for a session. She is allowing him to only eat about 2 oz at this time, but she is probably going to increase the amount.
If all goes as planned, someone from BIR will come tomorrow to look at Zac and review his medical records to see if now is the time for a transfer back to BIR. Zac is ready for this; he wants to keep moving forward and making progress.
Thank all of you for your continued prayers and support!

via Jenny

 

7-7

Kim from BIR came today and is going to be sending zac's medical info into his insurance, Aetna. Then here we go again, waiting on approval to get him back to BIR. She said if they approve, there is a chance Zac could be at BIR early next week.
Zac did not want to go sooner than Monday because he is still hoping to go to a CMRA race that will be at Cresson this weekend. All of you that would like to come see Zac while he is still in the Ft. Worth area probably need to do it before Monday or Tuesday

 

Sorry for the break, I was overseas for work.

7-7
Zac did not want to go sooner than Monday because he is still hoping to go to a CMRA race that will be at Cresson this weekend. All of you that would like to come see Zac while he is still in the Ft. Worth area probably need to do it before Monday or Tuesday

7-11
Zac did get to go to a racing event at Cresson today. I got a text that he did well and was very happy. Hope to hear something very soon about Zac returning to BIR.

7-12
Zac is going to BIR tomorrow. Watch out Dallas, you got a fighter on your hands

7-13
Zac transferred to BIR today, wish I had more info than that, but I haven't heard yet any other news.

7-14
Today, Zac should be seen by all the therapists for their evaluations. I hope to go tomorrow to see Zac in Dallas. I can't wait to hear from him what he thinks of BIR this time around! Janet and I on a road trip to BIR tomorrow to see Zac. He has already told the physical therapist that he plans on being able to walk within the 5 weeks that we hope insurance will approve him to stay at rehab in Dallas. I'm praying hard for God to continue His work in Zac so that others will see what a powerful God we have!!!

7-15
Had a great time today with Zac. It was so cool to find out that Zac has the same therapists that he had last time at BIR. It was also neat to hear them say that once they heard Zac was coming back they made sure that they would be Zac's therapists again. Janet and I saw Zac stand up several times with only the assist of 1 person. He and i played a bowling game on the Wii, Zac did get a strike!! I got to tease him about his pink bowling ball and he told me it was "faded red" Zac is getting to eat ice chips and is doing very well with the ice chips. He ate pudding with the speech therapist and she plans on having a swallow study done next week. There might need to be something done about the opening not being closed where Zac's trach was removed, we will see what they recommend.

7-16
Had a good time with Zac today. Traffic was horrible going through Arlington on the way to Dallas. Looks like there will be road construction to deal with the entire time Zac is in Dallas Respiratory therapy is trying a trick to see if Zac's trach opening will close without the need for stitches. Zac didn't get his afternoon therapy session today, but they said they will work with him tomorrow to make up for it. I am thrilled with the things he has already done in a matter of days! He and I talked today about what it felt like when he stood up out of the parallel bars for the first time. He said it was like "Whoa! What is my body doing?" He wasn't dizzy, it was difficult though he said. He also said that it felt like he was standing up straight, but he wasn't. It's funny being a therapist; how many times have I heard patients say that? Now it is coming out of my son's mouth... I thank God for leading me toward my profession and grateful for the knowledge that i have.

7-18
Julia and I went to BIR today to spend time with Zac. His first care conference was today. It is a meeting with his Dr., social worker, and therapists. The tentative plan is for Zac to be discharged from BIR around Aug 17th and then go to a transitional place where he will get therapy 6 hours a day. This place will help Zac gain as much independence as possible. Zac had another swallow study done this afternoon, but the actual results are not known yet. Zac sees the eye Dr. tomorrow, and on Thursday he will have the EMG done on the right side of his face to hopefully find out exactly what type of nerve injury there is. This is a busy week for him.

via Jenny

Pics:

Zac in the passenger seat at Cresson for CMRA race.
Zac working the ipad
Zac getting therapy while Julia watches
Zac getting stretched.
Zac is continuing to use his right hand more. This is his OT Julia working with him
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