Caleb

Our Caleb 

Today's Update

7/1/08 -  Caleb will be admitted to St. Elizabeth's Hospital in Youngstown this Wednesday, July 2nd for surgery.

5/12/08 - Caleb is back in the hospital.  He is in ICU and is expected to be there for a few more days.    

5/10/08 -  The doctors are going to insert a special tube into Caleb's feeding tube that goes directly into his intestines.  This will not allow food to enter his stomach so that they can accurately figure out how much reflux he has.  We go back in 1 week for an overnight stay and determine whether or not he is a candidate to have stomach surgery or just adjust the rate and type of tube feed.  The surgery would be to close off the upper portion of the stomach, which is reversable.  He is doing much better even today.  If they can insert the tube today, we may come home tomorrow.  If Sunday, then he will be home most likely Monday.  Please put this on the update:

Thanks to all of those responsible for the last fundraisers!  Your hard work and dedication to Caleb means so much to us. Caleb was able to attend the latest fundraiser at Quaker City and seemed to be taking all of the sights, sounds and smells.  It was good to finally meet a lot of people behind the scenes and it was also nice for people to meet Caleb.

Unfortunately, I have to report that Caleb is in Akron Children's Hospital now with pnemonia.  On May 5th he had the area in which the trach tube was sutured closed.  He also had injections into several muscle groups to relieve muscle tightness.  Everything seemed to be going fine and these were outpatient procedures.  By late Wednesday evening, Caleb was running a fever and his oxygen level was dropping.  The doctors tell us that this could possibly be simply from being under anesthesia.  Also, Caleb has  been having reflux issues and this could have compounded the problem.  Currently, he is having some tests done to see what can be done for the reflux; perhaps changing the way he is fed through his feeding tube.  We hope to be home Sunday or Monday.  We have the utmost confidence with Akron's Hospital and their staff.  It is here that we get results and proactive choices for the best interest of Caleb.  Thank you again for your constant support and prayers for our son!!

P.S. Please continue to keep Mason Bennett, one of Trevor's classmates, in your prayers.  He is currently being treated for stage 3 brain cancer. You can send an email via Akron Children's website to his family.

3/28/08 - We are very sorry if we have caused some confusion regarding Caleb's state of awareness.  As we noted on 3-25-08, Caleb was awake and calm during church service.  It is important to remember that even though his eyes are open most of the day and he sleeps at night, he still is considered to be in a partial coma.  There are many different coma scales that are used to assess patients and different levels within those scales.  His level depends not only to eyes being open, but an array of abilities and responses to both physical stimuli and verbal commands.  It is not uncommon for a patient to be at one level at one time then regress to the previous level or vice versa.  It is all part of the tedious process of rehabilitating.  We still need continued and unceasing prayer to stay focused on what God is doing and continues to do for Caleb. Through Him, all things are possible.

3/25/08 - Caleb had his first social outing since the accident. We all went to church together for the first time to celebrate Easter!! He was very relaxed and awake and seemed to be processing all of the sights and sounds. We are very thankful that we have come this far. As soon as the weather breaks, we plan on taking Caleb out more often for a change in scenery and stimulation. We do still have to be very careful with transferring of germs even though his trach tube has been out now for over 3 weeks. We are also very thankful for those of you who have taken the time to come see Caleb. We know he realizes you are here. You are a blessing to us all! For those still wishing to come, simply call first. We will continue to keep you posted on new treatments and progresses with Caleb as soon as we are able. Keep praying!!

Love, Jeff, Terry, Caleb, and Trevor

2/20/08 - Caleb's sleep study went well!  His trach was capped off as to not let any air pass.  He tolerated beautifully; his heart rate never went up and his oxygen level remained high. If all test results prove as good as clinical findings, we will return within 2 weeks to have the trach tube completely removed.  Our maiden voyage in our van went without a hitch.(actually, it does have a hitch!!)  We are soooo grateful for all those who contributed time, labor and funds to make the van available to us.  Caleb has another appointment on Friday with the neurologist that originally seen him in Youngstown.  Nothing special is planned, this is just a follow-up appointment.

2/11/08 - Caleb has been home for over two weeks and has adjusted beautifully!  His heart rate continues to be at a calm level and his oxygen level is near 100% continuously.  We are still working out home therapy visits but those seem to be going well also.  The next thing we look forward to is a sleep study on February 18th at Akron Children's Hospital.  This will determine exactly what happens during the night with Caleb's breathing (i.e., sleep apnea), his swallowing, and how well he functions at a sleeping state.  If all goes well, we are looking forward to capping off his trach, and total removal thereafter.  This will be a huge step forward as the trach now is a host for bacteria and infections. 

We are welcoming visitors so long as you call first and, of course, we ask that you be free of any colds or coughs.

12/13/07 - Good News Abounds!  Today Caleb will return to Columbiana County!  He will move to Blossom Nursing and Rehabilitation Center in Salem.  Please call before visiting, as it make take a while before he is settled in.  As if this isn't enough good news for the day.  "Santa" is working overtime to be sure that Caleb's wheelchair is ready before Christmas.  It looks as if it will be delivered within the next couple of days.  

12/3/07 - Caleb has had a relatively good week.  He has slept well and has had no issues with getting sick. His doctor started him on a drug normally used for sleep but was found to actually "wake up" coma patients.  Last week 60 Minutes aired a segment on the drug Ambien and Caleb's doctor promptly ordered it for him.  Although we are not seeing drastic results, he appears a little more active in stretching, eye blinking and overall awareness.  This just goes to show that every day new medication is being found to be helpful in treating brain trauma patients.  Please keep us in mind this week as we look at new facilities to keep Caleb until he is well enough to come home.  If anyone has any suggestions regarding nursing facilities, please don't hesitate to offer an opinion.  We value everyone's thoughts and concerns.

11/19/07 - We had a big scare on Friday.  Caleb was sick and his heart rate went sky high.  We weren't exactly sure why, but now have come to conclude that it may have been a bug that is circulating the unit.  It doesn't look like we will  be home by Thanksgiving as once anticipated.  We are looking into a transitional facility hopefully closer to home until Caleb is stable enough to come home.  His condition remains about the same. 

11/1/07 - Caleb has been at Children's Hospital since Wednesday evening being treated for thalmic storms from the brain.  His brain does not yet know how to control BP, temperature, heartrate and respirations.  It is still trying to figure out how to fire properly and this is typical of brain injuries.  These episodes may continue to come and go throughout his recovery and cannot be predicted.  He does have an infection in his trach, again. This is a very common occurance in trach patients. Our main concern is the storming and regulating his medications. 

10/22/07 - Caleb has had some real rough times the past couple of weeks.  He is getting medicine to help control his muscle tightness, but this in turn sedates him.  They tried another "wake-up" medicine but it was too much for him and he had to be purposefully sedated to calm him down.  He also has had issues with casting.  They had to remove one of his casts last Friday because it was giving him too much pain.  This results in a setback though and we will try again tomorrow. 

He now has a speaking valve on his trach that allows air to pass in through the trach but out through his mouth and nose.  This  makes air pass by the vocal chords and we actually heard his voice for the first time on his birthday.  It only amounts to audible sighs but it actually sounds like Caleb.  He still hasn't been able to gain any weight back.  They are considering a formula change and/or amount per hour change. 

10/2/07 - After visiting Caleb Sunday, I am convinced what he needs more than anything are visits from friends and family.  I know the distance is great between here and Pittsburgh, but if anyone has an opportunity to make the trip, I encourage you to take the time and make a day trip out of the visit.  There are many restaurants nearby and the Institute is located in a very nice section of town.  Let Caleb's friends visit him while the adults can give Jeff and/or Terry some much needed conversation and fellowship.

Sure, we all want to see Caleb open his eyes and talk to us.  The truth of the matter is, this is going to be a very long ordeal.  And, everyone is going to need a little re-charging along the way.  We had such a great following in Youngstown...and we lost the covenience of a one-half hour drive.  

Jeff and Terry's priority this week is to get a cellular phone plan.  They have been using trac phones which really eat up the minutes.  Cell phones will certainly make them more accessible to everyone. 

You will not see updates as frequently as before.  Simply because, progress is slow.  We do not have something to report every day.  Caleb is working very, very hard.  Harder than he has ever worked before.  More intense than he ever trained for football.  He is continuously pushed to regain what he lost.   

When you think of how painful each little step is for Caleb it kinda makes those extra miles to Pittsburgh seem a little easier.        

God Bless.

9/24/07 - Good News!  Caleb is back at Children's Institute and has already resumed his therapy schedule.  Terry and Jeff are looking forward to having visitors.  

9/23/07 - Caleb is expected to be released and return to Children's Institute tomorrow.  Terry and Jeff are anxious for him to return to his therapy schedule and get back on his track to recovery. 

Hopefully, visits will be able to resume again, soon.  Please call Jeff before you plan your visits.

9/18/07 - Caleb is still in Children's Hospital.  He has been receiving antibiotics to clear up the infection.  Once the infection is out of his system, he will be ready to resume his therapy at Children's Institute. 

9/16/07 - Caleb will be spending a few days in Children's Hospital.  The doctors want to be sure the infection is clear before releasing him to Children's Institute.  At first, this sounds alarming, but we have a very high confidence level in Children's Hospital and our hopes are that Caleb will return to the Institute without having to worry about a relapse.  Unfortunately, visiting Caleb is not encouraged with his current condition.

9/15/07 - Yesterday morning Caleb was sent to Children's Hospital due to his oxygen levels (SATs) being low.  After several tests, it was determined that something may be amiss in his trachea, most likely an infection.  He was admitted for observation and will probably be discharged and return to Children's Institute today. 

9/12/07 -  Hey Gang - are you ready to visit...'cause Caleb is settled in and ready for company!  Caleb has to stick to his therapy schedule so if you are planning to visit, please call Jeff and let him know your plans.  

Yes, Caleb is still in a coma, but you can expect to see him dressed in his own clothes, maybe even sitting in his wheelchair.  If the weather is warm enough, you may catch him outside!      

Caleb took a little road trip to Children's Hospital yesterday for scheduled doctors' appointments.  His CAT scan revealed that the shunt is functioning properly and there are no significant changes since the last scan.  The neurologist indicated that it is really too early to offer a prognosis for Caleb.  The trach was changed which seems to be done on a more routine basis now. 

So what? - Steelers won. The Browns just had a bad day.   

Caleb seems to be flickering his eyes ever so slightly.  This is encouraging, too.  We've seen a lot of forward steps.  Just keep praying.   

Terry replaced the trach, a routine procedure that she will perform until it is no longer required.  The size of the trach will be reduced until the day, we pray, it won't be needed.  

The staff at CIP has suggested that Caleb have a CAT scan to confirm the shunt is functioning properly...a routine procedure. 

WAKE UP CALEB!

9/2/07 - At first glance, Caleb simply looks like a teenage boy catching a nap in the sunshine and, oh, if only that were the case.  When we arrived at CIP yesterday, Terry was bringing Caleb outside to enjoy the beauty of the day.  He was dressed in a t-shirt and shorts as we are accustomed to seeing him.  He sat with us for nearly an hour, soaking up the sun!

Terry gave us a tour of the facility.  The building and grounds are quite impressive.     

Terry works side by side with Caleb and his therapists, learning the various procedures and exercises necessary for Caleb's successful rehabilitation.  

I was amazed to learn that even though Caleb is still in a coma, he has speech therapy.  Terry explained that this therapy basically consists of stimulating muscles, etc. that normally would be involved when speaking.     

8/30/07 - In loyal Crestview Rebel fashion, Caleb donned his football jersey today as his beloved Rebels defeated the United Eagles at home 26-0.  

This facility does not waste any time when it comes to getting the patients moving around.  They are already in the process of getting Caleb a wheelchair.  Things seem to be moving at a little faster pace now, folks. 

The physical therapist, occupational therapist, and speech therapist each met with Caleb today.  The three therapists will now get together and develop an action plan for Caleb's treatment.

As much as I hate to admit it, my nephew - that darling Caleb - is a Steelers fan and he is in the middle of Steelers territory with the Steelers game turned on in his room!  Just wait 'til the Browns and Steelers play, Caleb!

8/29/07 - Terry, Jeff and Caleb arrived safely at CIP yesterday via the scenic route of Pittsburgh.  Apparently, the GPS in the ambulance decided to develop a couple of "blips" in downtown Pittsburgh resulting in some unplanned turns, but eventually the entrourage arrived safely.

Jeff and Terry are pleased with the physical aesthetics of the facility.  It is much too soon for them to offer an opinion on the staff and treatment.

Caleb will be on a fairly strict schedule while he is there.  You may want to wait to schedule your visits until after his schedule is determined and we post the visiting times. 

8/28/07 - Caleb will be moving to Pittsburgh today where he will be a patient at the Children's Institute of Pittsburgh for several weeks.  He will make friends quickly there - especially once they find out he is a Steelers fan!  The family is anxious to start this phase of Caleb's treatment but remain apprehensive about the distance. 

Caleb's condition remains unchanged.  He is still in a coma, yet stable.  He still has the trach, feeding tube and shunt.  Temp and blood pressure are stable.  In the words of his 4-year old cousin..."just wake up Caleb".

Please pray today for a safe trip to Pittsburgh for Caleb and his family and for God to guide them as they begin this part of their journey.

8/26/07 - Today saw our family experience what we so many times before took for granted...a birthday party.  Trevor had a wonderful surprise when Caleb was able to attend his birthday party held in a private dining room at the hospital.  Grandparents, aunts, uncles and cousins were able to join in the festivities.

Tuesday will be a bittersweet day for us as Caleb will move to the Children's Institute of Pittsburgh.  The initial focus will be to bring Caleb out of the coma.  We know this is moving in the right direction, but we sure will miss being able to visit every day!  Please continue to keep Caleb, Jeff, Terry and Trevor in your prayers as this will be a big transition for their family. 

You can check out the website for the hospital where Caleb is being transferred by clicking on the Links tab above then clicking on Children's Institute of Pittsburgh.

8/24/07 - "I gotta ticket to ride..."  That song was probably going through Caleb's mind this morning as he "cruised" outside in the hospital liftchair. After one month of captivity Terry, with a nurse as an accomplice, was able to escape, albeit ever so briefly, with Caleb in tow for a breath of fresh air and sunshine.  

Terry met with a representative from Children's Institute of Pittsburgh concerning rehabilitation possibilities.  She was very impressed with what they had to offer.  She also met with a representative from Cleveland Clinic.

It appears that we're just around the corner from moving to a new facility.  This is a very scary but promising move anticipated by Jeff, Terry and Trevor.  It will be difficult to be so far away from home but they are anxious to be able to address Caleb's special needs in a hospital designed for that purpose.  This move will likely take place before the end of next week.

Some members of Caleb's football team visited yesterday and Terry was convinced that he felt, if not heard their presence.  He also seems to be responding to a new contemporary Christian music CD.  Whenever it is in, he tends to move his head more.  Trevor picked out a new CD player for him.  It's pink...to match his "I'm man enough to wear pink" flip flops. (He'll be bummed to know his puppy chewed them up!)

Anyway - If you're anticipating visiting Caleb at St. Elizabeth's - now would be a good time.  Saturday, Jeff and T will be with Trev for his football game.  Visiting hours are at 10:30 a.m., 2:30 p.m. and 8:00 p.m. with a little variance by the grace of SICU nurses and staff.

Remember - even though Caleb's progress is welcomed, we still need to pray for healing of his brain.  He's already proven miracles can happen - they just need to keep coming!

8/22/07 - School will be starting soon and the kids will be busy, both, day and evening.  During the next few days may be a good time to stop by the hospital to visit Caleb.  His doctors are very supportive of familiar stimuli and a cheerful atmosphere.

Caleb continues to surprise everyone with his progress.  He looked great following surgery yesterday.  Only a small scar will be visible.

8/21/07 - 11:00 a.m. - Caleb is out of surgery.  The shunt was inserted without any problem.  The doctor's originally thought he would have to be back on the ventilator following surgery.  Caleb surprised everyone by not requiring the ventilator!  He is breathing on his own even after surgery!  What a remarkable young man!  He is resting in his room now.  

8/20/07 - 1:00 p.m.  Caleb had his first visit from the Physical Therapist today.  He opened his eyes slightly to stimuli.  This is the most response the Dr's have seen to date.  The CAT scan did reveal increased fluid on his brain.  As as result, a procedure will be performed tomorrow to insert a shunt that will drain the fluid internally.  The shunt is a different procedure than the ICP Caleb had a couple of weeks ago and is not unusual for an injury of this type.  It is nothing about which to be overly alarmed.  The steps forward today out-distance the steps back.  They "ain't seen nothin' yet", have they Caleb!     

8/20/07 - Caleb is adjusting very well to breathing without the ventilator.  We won't have the results from the CAT scan until later, but we will keep you posted.  All the prayers and well wishes from yesterday's gathering are sure to reach Caleb soon and he will be making great strides before we know it.     

8/19/07 - A HUGE step forward today folks!  Caleb is off the ventilator and is breathing 100% on his own!  Like parents with a newborn, I'm sure Jeff and Terry were apprehensive at first. Our prayers are being answered one at a time.   Let's pray this forward momentum will continue and tomorrow's CAT scan will return with more positive results.  God bless.

8/18/07 - We have a lot of positive news to report today!  Caleb is off all the IV pain medication.  He only has pain meds as needed.  One IV line has been eliminated which is great as this reduces the risk for infection.  Caleb's blood pressure remains stable and his temperature is improving.

A rehabilitation doctor who specializes in bringing patients out of comas visited Caleb.  He suggested that music and TV be turned on in Caleb's room.  (Hope Terry likes AC/DC!)  He also said to begin moving Caleb's limbs and commanding him to "push" and "pull". 

A CAT scan has been ordered for Monday.

These are all baby steps...but all in the right direction. 

8/16/07 - The EEG results weren't as good as we had hoped.  One step back.  Caleb's blood pressure and temperature have been very stable.  That's good news.  Always somethin'...

8/15/07 - As of Noon today, the doctors had not yet talked with Terry and Jeff regarding the EEG results.  Caleb's temperature was elevated slightly, but his blood pressure was somewhat stable.  

8/14/07 - Caleb is scheduled for an EEG today.  His condition is still critical, yet stable.  He is still in a coma...and we anxiously await the day he opens his eyes and wonders what the fuss is all about...and he will.  Patience and Faith.

8/13/07 - 7:30 a.m.  - The CAT scan revealed no changes in the brain cells.  This really isn't bad news.  Caleb is scheduled for an EEG tomorrow.  He had a typical night with temperature and blood pressure.  

8/12/07 - 10:00 a.m. - Two steps forward...Caleb has been taking breaths on his own.  While he remains supported by the ventilator, he does control some of his own breathing.  Of course, it is too premature to disconnect the ventilator but this is truly a step in the right direction.

The battle continues between the blood pressure and temperature.  Caleb had a scheduled CAT scan this morning and the results were not available when I spoke with Terry.  I will update as warranted.

Continue to pray, Friends!

8/10/07 - 9:00 a.m. - It is important to note that while there are no significant changes reported, Caleb's condition remains critical.  He is no longer on the paralytic medications, he is still on minimal pain meds and he is still dependent upon the ventilator for life support.  We would love nothing more than to report great things daily - but we can't.  We sit at Caleb's bedside and watch the numbers on numerous monitors...waiting...but little changes.   

There seems to be a battle brewing between blood pressure and temperature.  When his blood pressure is low the temp is high.  The nurses put ice on Caleb to control his temp, he begins to shiver, his blood pressure rises and the cycle begins again.  A constant battle.

As is typical for patients in Caleb's condition, an ultrasound was performed yesterday on his legs to check for blood clots.  Everything was clear.

His white blood cell count was slightly elevated and the cause has not yet been determined.

Caleb finally got his haircut!  With a little help from the nursing staff, Dad coordinated a buzz-cut.  He certainly looks more like himself.

8/8/07 - 11:00 a.m. - Caleb is off some of the paralytic medications and is showing increased reflex activity.  He is on medication for bacteria in his lungs.  This is not unusual for someone who has been on a ventilator for an extended period of time.  His blood pressure and temperature still need to be controlled with meds. 

It is tough to be patient when we want so desperately for Caleb to open his eyes and flash that good lookin' grin we've been getting so many e-mails about.  Patience and Prayers, friends! 

8/7/07 - 9:30 a.m.  Caleb had a stable night.  He doesn't have any procedures scheduled for today.  Hopefully, the day will be relatively quiet.  The Dr's are studying the results of the last CAT and MRI scans.  They should have a more clear picture of Caleb's prognosis and treatment plan to review with Jeff and Terry within a couple of days. 

Caleb's condition remains critical.

8/6/07 - 10:00 a.m.  Caleb's Dr's are evaluating the swelling in his brain.  They are working together to determine if it is in Caleb's best interest to reinsert the ICP or continue to treat the swelling with meds. For the time being, his temperature is under control.  Caleb is still considered to be in critical condition. 

8/5/07 -  9:00 p.m.  Caleb's blood pressure is touch and go.  It seems to be under control one minute and high the next.  Medication seems to be getting it back under control. The blood pressure change is probably a result of the brain swelling.   At this hour the Dr's don't seem to think there is a need for the ICP (Intra cranial pressure) monitor to be reinserted.  Temp remains stable.  

11:00 a.m.  Caleb's temperature and blood pressure are down.  He had a CAT scan this morning which showed slight swelling in the brain.  The Dr's told Terry and Jeff that this is typical.  The swelling is being managed with medication.  Caleb's pupils are sluggish but responsive.

8/4/07 - 6:30 p.m.  I just received a phone call from Terry.  Caleb's temperature is high.  His blood pressure is high and there is concern that there may be more swelling in his brain.  He is being monitored very closely.  Please continue your prayer efforts.  This is one of those steps backward the Dr's warned us about.  

We were told to expect one step back for every two steps forward - but it doesn't make things any easier.  Please pray for strength, too, for Terry and Jeff.   

9:00 a.m. - Caleb's temperature is unstable today.  The Dr's say this is typical of patients with brain injuries.  Other than the temperature, Caleb had a good night.  He continues to respond to stimuli - we are praying he will just wake up and slug the Dr one of these times he gets pinched!

Terry mentioned to the nurse that she wished she could do something about Caleb's hair.  The Dr's had to partially shave his head for a surgical procedure last week and his hair is beginning to grow back unevenly.  Apparently the wheels are in motion to get Caleb a haircut today!  He may be sporting a more stylish look by evening.   

8/3/07 - 3:00  -  The Dr's are performing the trach at this time.  Caleb is not permitted any visitors and is unlikely to be allowed visitors for the remainder of the day.   

1:00 p.m. - We expect Caleb to have a tracheotomy today.  This will enable the Dr's to remove the numerous tubes running down Caleb's throat.  The "trach" will also be more comfortable for Caleb when he starts becoming aware of what is happening.  

While Caleb is beginning to look more like himself, his return to the healthy, vibrant young man we know and love is taking longer than we had hoped.  He is still on the ventilator but at times attempts to take breaths on his own.  He does show some reflex response to pain. The Dr's have weaned him from the majority of the drugs that kept him in the coma state.  He is still on pain meds and IV's for nourishment and hydration.     

These are all steps in the right direction...but we still need prayers!  

8/2/07 - We have some good news to report today.  The Dr's have decided to remove the ICP and monitor from Caleb's brain.  They will also begin to reduce the amount of medications that are keeping him in the deep state of coma.  Caleb is resting with the football from his Team lovingly at his side.

Caleb's address is:

P.O. Box 116

New Waterford, OH  44445

Terry's e-mail:

tt66rdh@aol.com

To date we have had over

102,037

visits to the website!

We thank you all for your prayers, comments, visits and support.