Saturday, January 31, 2009

24 Hours Later

What a difference a day makes.
They took Titus off the BiPAP machine this morning. They started him with a face mask on a high-flow, but he was not happy with the mask. So they moved him to a nasal canula. And, combined with the methadone (which is part of weaning him off the other pain meds), he has been a happy camper. After playing in his bed for 6 hours, he has finally conked out for a nap.

If he continues to improve, He could be home by Monday/Tuesday. But, as we have learned, one day at a time.
And, here's his new trick - smacking his lips.

Friday, January 30, 2009

Friday Night

They did not have to re-intubate Titus on the ventilator last night or this morning. Instead, they changed the mask of the BiPAP to a larger, face mask instead of just one for the nose. He still isn't real happy with it, but he's learning to adjust to it.

I checked in at the hospital at 4:30pm for weekend duty and Becky has gone home for the weekend. She is a saint for staying up her 24x7 for the last 2 weeks. She is glad to be home and spend some time with the boys, and Titus and I are geared up for Super Bowl Weekend. (GO Cardinals!)

After I arrived, they stopped all his pain meds to see how he would adjust. He's trying to go to sleep, but moaning a bit. I think it's due to the face mask (since he little hands are trying to pull it off), but sleep is winning out. He needs to rest a bit.

They may try to take him off the BiPAP tomorrow and see how he does again. If he can stay off for 48 hours and maintain his CO2 levels and such, we can go home. But, we will just have to wait and see. As we've stated, Titus re-writes the book and does things in his own time.

Dad's surgery to repair his pins went fine this afternoon. He's in the ICU for the next 24 hours and then back to a room for another day. They may be able to move him back to rehab by Monday.

And, our friend Ethan's surgery is complete. His mom just stopped by to say he is back in his room. Surgery was very long today, very complicated, and they found lots of infection and things to repair around his heart once they got in. As she stated, it confirmed they made the right decision to do surgery, but he has a lot of healing to do. Please continue your prayers for them. In the midst of their day, they just stopped by to ask if I wanted dinner.

Honestly, that blows me away. Here's a family that has spent the entire day on pins and needles waiting on the outcome of a major open-heart surgery on their son, and they just got the go ahead to go back and see him after surgery, and they stop first to see if I want dinner. What a testimony of selflessness. It shames to think of all the times in the rush of my day and my own selfish push to get my way, to get me first, to make my items a priority, that we are called to "love one another". It's easy to love the ones we know, to love the ones who don't bother us, to love others when we ourselves are comfortable. But the Bible doesn't say love within these parameters, or love when you feel like it, or love those like yourselves. It's just a simple "love one another." So in an antiseptic hospital room, with the gentle hum of the BiPAP, surrounded by tubes, I'm reminded that even though I may be a selfish-melancholy-let-me-sit-in-the-dark-and-don't-talk-to-me mood, I need to love others, seek outside my self and my situation, and look for opportunities to love.

Thursday, January 29, 2009

Just Breathe

This afternoon, the doctor decided to extubate Titus off of the ventilator. They were able to extubate him with no problems, but immediately began to check blood gasses to see what his CO2 levels were. They started high (80's), then dropped to 60's for several hours. They took him off of all sedation meds to see how he would do. He rested peacefully, and when I got there several hours later, he was alert, happy, smiling, and squirming. But his CO2 levels began to climb again. Becky and I stepped out while they did chest x-rays and to eat a quick bite in the waiting room. When we came back in, the doctor had examined his chest x-ray and was concerned a bit, so they put Titus on the Bi-Paps ventilator. It's not a breathing tube directly in his lungs, but for those of you with sleep apnea and wear a c-pap to bed, it's very similar.

Titus was not a happy camper. He was very agitated with the breathing mask, and we had to tie his hands down. And, he just wouldn't settle - and he began to cry - but not a sound came out of him mouth, just tears rolling down his cheeks. This broke his father's heart.

I left to pick up Tucker and Cade who were staying at friends, and stopped back off at the hospital to drop off the bouncy seat after it had been cleaned from all the poo. And, it looks like they will be intubating him back on the ventilator. His CO2 levels were back over 90 and he's just not settling on the bi-pap machine.

We know it's a delicate dance - and there are days you make progress, days you don't, and days you regress. It's just difficult when you do all three in a matter of 6 hours. Becky was having a hard time tonight - she's tired after sleeping at the hospital all week, and it hurts her heart to see him struggle. But she did get to hold him today while he was off the vent and I do believe that helped some.

Becky will come home for the weekend, and I'll go spend the weekend up there with Titus - looks like he and I will have our own Super Bowl Party.

Please continue to lift up Titus breathing in your prayers. His lungs need to strengthen, his CO2 levels need to drop (40 is the average), and his blood chemistry needs to balance out. There's still a lot of progress to be made.

Dad will have surgery again tomorrow to repair any damage done by his removing the pins. The doctor seems to think there is minimal damage and it will just be re-inserting the pins. We are praying that Dad has a quick recovery and can be back in rehab center in a few days. Mom is so thankful for the caring nurses and doctors, but is really looking forward to having him closer to home so she doesn't have to drive downtown.

And, we do have one more special request. The day we checked into PICU, another boy checked in from Tyler, Tx. He's 12 and has a serious staph infection running through his body. He has some heart issues and has a pacemaker. Due to the infection, they are performing open heart surgery on him in the morning at 7:30am. Becky and Cherise (his mom) have become quite close over the last two weeks. They are a sweet, Christian family and have been surrounded by their friends from the last two weeks. So in your prayers, please lift up Ethan C. in the morning.


Ok - you can stop praying now - Titus has poo'd.

And poo'd.

And poo'd some more.

In fact, last night, around 3 in the morning, it took over an hour to clean up all the poo. Becky stated they even were using the suction machine to clean it all up since it was EVERYWHERE. My little one had definitely been storing it all up!

Yesterday, we took up his bouncy seat, therapy chair, and other toys to see if it might help calm him when he was awake. I left at 8pm, but Becky called me around 9:30pm to let me know they had put him in his bouncy seat, and he was so happy. He was playing and acting like his regular self.

She stated this morning that he had a good night - They have been weaning him off of the pain meds and switching to methadone (little baby rehab all over again). But, they MAY try to extubate him off the ventilator today. And that is our major prayer request for the day.

Dad is back in a room on the 5th floor of Parkland. It looks like he did some damage to the healing of his pelvis when he pulled the pin out - so they will do surgery tomorrow (Friday) to repair. Mom didn't leave Parkland till midnight. She is exhausted. And with the freezing fog this morning, she wasn't driving down till later this morning. Please continue to keep them in your prayers.

I'll update more later today once we know if he's off the ventilator!

Wednesday, January 28, 2009

Same Old Same Old

Not much has changed for Titus. They had to increase his pain meds a bit yesterday since he's getting agitated when's he awake - which in some ways is a good sign that's he feeling good enough to get agitated, but it's hard to see him like that since we can't pick him up. But, as the doctor stated yesterday, Titus didn't come in with a stellar set of lungs, so these things just take more time. We are planning on being there the rest of the week and weekend.

And, the poor boy needs to poo. I know this is TMI, but he seriously needs to poo. The pain meds cause him to be constipated, and even though they are giving him Miralax daily, he's only had one good poo (last Friday) since he's been in the hospital. They have upped the Miralax and it's kind of like a game of hot potato these days - no nurse wants to be on-call when the gusher hits - cause it's only a matter of time.

And, my dad needs your prayers. Yesterday he was transported out of Parkland and into a rehab center. From what we can gather, early this morning, Dad woke up, was disoriented, and pulled out all his IVs and even pulled out one of the metal pins that have been holding his pelvis together. He was transported back to Parkland this morning.

Unfortunately for some reason, the rehab center did not have Mom's cell phone number and she didn't find out until she showed up this afternoon (after the ice had melted). We anticipate they will have to do surgery today to repair any damage done by Dad pulling out his pins (and I can only imagine how painful that had to be.

I know I said a few weeks back "when it rains, it pours - bring it on", but can I take that back now?

Tuesday, January 27, 2009

A Cold Day in Dallas

Brrrrr! We got us some cold, icy weather in Dallas today. (Ok - it's 32 degrees, but for Dallas, it's COLD!)

As I type this, Dad should be on his way out of Parkland and up to Plano to a Rehab hospital. Mom said he has been smiling all morning since he found out. After 3 weeks in Parkland, he's ready for a change of pace - and he thinks the food may be better (hate to disappoint you Dad, but I wouldn't get your hopes up too high!) From what they have told us, it may be up to 6 weeks before Dad can put any weight on his legs, but in the meantime, they will work with him on life skills, getting into a wheelchair and using it, etc. And, not only will he be closer to home, but he will be in a place where the boys can go see him. I know it will do him some good to see his grandkids.

Titus is making minimal progress - not great progress - but small baby steps. There's a chance they could extubate him off of the ventilator tomorrow, but we won't know until tomorrow. His CO2 levels were high again this afternoon. So, he continues to rest, but we can tell he's feeling better because when's he's awake, he's getting agitated just laying there. He is use to having his toys to play with, being held, and all the other stimulation he normally gets. We still can't hold him, so that's frustrating to both of us. Becky did put his cochlear on today while he was awake and that seemed to soothe him a bit.

Since the weather is getting bad, I won't be going down there tonight. Please continue to pray for Titus healing. Pray for the boys at home - they miss us all being together. And for Becky's strength and rest while she stays down there. As many of you know, Becky doesn't meet a stranger, so she has made friends with several other families with children in the PICU. Plus, she's a favorite among the staff since she brings them cookies and coffee cake. We are always in awe of the incredible doctors, physicians assts, nurses, and respiratory therapists at Medical City Children's Hospital of Dallas. They truly ROCK!

And for those of you who have dropped off food at the house or at the hospital - thank you again. You have no idea how much that ministers to us.

Monday, January 26, 2009

1 Week

Titus has been in the ICU for one week today. Overall, he had a good weekend. I spent the weekend at the hospital so Becky could go home since she had been there all week.

They took Titus off the paralytic drug over the weekend and he was doing fine without it. When he was awake, he was very alert, looking around, and playing with his hands. But this morning, he got very agitated, so to keep him calm, they put him back on the paralytic. But it has since worn off and he's doing fine.

He seems to be be doing much better from the flu. All the meds have improved his breathing and he's not running a constant fever. He had a slight fever on Sunday, but they managed it with Tylenol.

His mouth continues to be fine. The cranio-facial surgeon comes by every day and says it looks good.

The main thing Titus is dealing with is renal tubular acidosis. With all the meds he has been on, his body pH balance is out of whack (remember your chemistry - acid vs alkaline). They have him on meds to bring this back into balance. They felt this morning, he might be close to being back in balance, but he's not quite there yet. Once this happens, they can take him off the ventilator. So, it could be tomorrow, it could be the end of the week. There is just no way of knowing.

Dad is back off the ventilator, but still in the ICU at Parkland. There are two rehab centers from Plano coming down to evaluate him in the next few days. Hopefully, they can move Dad to a rehab center this week.

And last of all, Aidan, our oldest turned 12 yesterday. It's hard to believe he is this age. He had a great day and got what he has been asking for - a unicycle. He and Noah are quite funny trying to learn to ride it. They even got me on it, but I decided God gave me two legs and not one wheel for a reason, so I'll stick to walking. Happy Birthday Aidan. I love you dearly.

Saturday, January 24, 2009


Titus had a restful day yesterday (Friday) and a good night last night. They have weaned him off the paralytic drug that he has been on, but upped the precedex which helps him sleep. So, he's sleepy, but able to move his muscles. Being off the paralytic also means he is over-breathing the ventilator a bit - which is good. His lungs sound good, but they are still sucking out a lot of secretions due to the flu and some of the medications he is on.

Becky went home last night (well - she actually went shopping first - but I understand a girl has to shop especially when she's been in the hospital 5 days straight). She will spend the day with the boys and then spend the night at home again. I spent the night at the hospital last night, and actually got a full night's sleep. Of course, I did apologize to the nurses and RTs prior to going to bed that my snoring can be pretty bad - and they said they wouldn't mind. (But I'm sure I sounded like one of Titus' alarms going off).

So today should be another day of rest and baby steps of weaning him off some meds.

Thank you for the continued prayers and support.

Friday, January 23, 2009

Dad - Back in ICU

They did not perform a tracheotomy on Dad as listed below.

Below is an email from my Mom on my Dad's status. He has been out of the ICU and off the ventilator for several days and they were hoping to move to him a rehab facility this weekend.

I got a call at 4:30 AM that Nolon couldn't breathe, they put him back on the ventilator through a trach, and sent him back to ICU. Yesterday, while Patti was there, he had a breathing episode.

About 30 minutes later, the trauma doctor called and told me what happened. I asked her if the pnemonia was the cause that he could not breathe. She said that his lung x-ray looked better than when he was in ICU before. She said that they would have to start back at square one and run more tests.

Needless to say, this is so disheartening to all of us. Patti and Paul have barred me from going down today because of my bronchitis, Steve, Patti's husband, is going to go down. Paul is in meetings all day, but will get there when he can.I know that God has a plan and am trying to relax claiming his promise, "Trust me."

Clinging to his promises,

Please continue to lift Mom and Dad up in your prayers.

Thursday, January 22, 2009

Thursday Update

Not much has changed from yesterday. After they put Titus on the ventilator, he had two episodes where his Oxygen SATs sank. During the first one, the respiratory therapist had just come into the room so she reacted immediately and started bagging Titus. But it's the first time I have heard any nurse or RT yell for help. The RT starting yelling the nurses name and calling for the doctor and within 10 seconds, Titus was surrounding by 4 nurses and the doctor. Within 30 seconds, his SATs were back to normal and they stopped bagging him. So, the doctor put him on a paralytic drip to keep him totally sedated and relaxed. He had a smaller epidode in the afternoon, but since then has maintained.

The installed a catheter last evening to release his urine since some of the drugs he is on is slowing down his kidney function. And, he still needs to poo. Between the anesthesia and pain meds, he's pretty plugged up. They have been giving him Miralax - so we are preparing for a major blowout.

This morning, they are giving him a small blood transfusion. And based on the lab cultures that came back from the cultures they took 2 days ago, they have discovered he also has a bacterial infection in his lungs. They have switched his antibiotic to address this.

And, the doctor stated they may start weaning him off some of the pain meds starting tomorrow - which will be great. But as we have learned, it's one day at a time. We'll know more tomorrow.

Honestly, right now, he looks pretty pitiful. Since he's fully sedated and the ventilator is breathing for him, he is just lying there. His eyes are half open - they keep putting drops in them to keep them from drying out. He has an IV in his foot and the central line on his shoulder. He has 6 different IV drips going on, plus they have been feeding him formula slowly - so he is all hooked up. The ventilator is a small tube going through his mouth. He is still in very critical condition and it rips my heart out to see him this way. But, he is resting, not in pain, and not fighting against everyone. He needs to rest to heal.

And, that's a great lesson for all of us. We all have hurts, we all have sin issues, we all have a cross to bear - and yet, we don't take the time to rest so that we can heal. Instead, we want a miracle pill or instant relief that will make us feel better so that we can continue leading such busy lives. And lives that are so busy at times, that we don't make room or take time for God. The Bible says to "Be still and know that I am God." So, I'm having to learn to be still. And, nowhere does it say how long we have to be still - we just have to be still.

Wednesday, January 21, 2009

On the Ventilator

The doctors made the decision this morning to put Titus on the ventilator to breathe for him. He was just wearing himself out trying to breathe and he needs to rest. Beck stayed in the room while they did it and they had no issues intubating him (which is a huge answer to prayer since it's always been an issue in the past). Becky stated he's resting now.

The ventilator is hard - we aren't able to hold him and that is just killing me. Becky was able to hold him for about 10 minutes yesterday. As I mentioned last night, now that he is older and much more aware of his surroundings, I just want him to know he's safe and cared for even though it's all these new/strange hands touching him.

They are also putting in a central line this morning for his IVs. This will also help when they draw blood.

As of now, we are expecting to be there for at least another week.

Tuesday, January 20, 2009


The title pretty much says it all.

After another day of Titus labored breathing and up-and-down fever, they ran several labs/cultures to see if there was anything else going on. And sure enough, Titus has the flu.

In some ways, he's in the best place he can be. We would have had a difficult time managing this at home. But in other ways, it's just so hard to see him struggling. Tonight, they were giving him several different meds which should have knocked him out - and instead, my little "Samson" is fighting it. He's waving his arms even with his splints on, kicking those legs, and refusing to sleep. He even gets his hand around his oxygen cord and pulls it off his face.

As with the flu, his fever is going up and down. You can tell he just feels miserable. And because of the IVs, we aren't able to hold him. And, I know that frustrates him as well since he doesn't know where he is. At home, when we put Titus in his bed, he reaches out, feels his bumper pads, and laughs because he knows he is in his bed, his safe place. And it's when he is in his bed that he just laughs and plays. He was doing it Sunday night when we put him to bed - laughing and playing instead of going to sleep. And to see him in the hospital bed tonight, with multiple IVs, a big oxygen mask, and propped up in bed, I know he is trying to figure out where he is. I just want him to rest and to know that his is safe.

The doctor stated she vacillated all day on whether to put him on the ventilator or not. She chose not to, and his breathing has shown improvement. But again, we are just concerned he is going to wear himself out.

As far as his mouth/palate goes, it seems to be fine after surgery. The bleeding has stopped and for the first time in his life, I had to wipe his nose tonight. The swelling of his tongue has gone down and they removed the thread that pierced his tongue.

Please pray specifically for these things:
  • Titus will rest and his body will heal from this flu.
  • His mouth/palate will continue to heal after surgery.
  • His fever will go down and the meds they will treat with him will provide comfort.
  • Becky will rest. She is still up at the hospital and will spend the night again tonight. She won't admit it, but she's getting weary.
  • Peace and comfort for the rest of us.

And, many thanks for the prayers for my dad. He is off the respirator, his chest tube has been removed, he's eating real food, and able to talk. He should be moved out of ICU tomorrow or the next day.

As odd as it seems, I still have to give thanks. As we have stated before, none of this catches God by surprise. We are thankful for the doctors and nurses at Medical City. It's very familiar territory for us and they are the best at what they do. Their tender-loving care for Titus and for us is amazing. And, we look around on the PICU floor and there are some families in a world of hurt with circumstances much more severe than us. For many families, it's there first time to be in a situation like this. Becky has had the chance to talk and pray with several of the families. Although I am a zombie at work, when people ask about Titus, it's still a chance to share about God's faithfulness - even through the tears.

So tonight (or whenever you read this), give thanks. God is not a God of chance, life is not a random series of events, things don't just happen. There is an incredible master plan - and this is just one small, minute piece of it all. God will make it a way.

Still in the PICU

Titus had an "ok" night - not bad, but not great. He woke up crying every hour. They are still concerned with his breathing. He is still not expelling adequate CO2. This is due to the bronchial clamp he has done in the past when his body is stressed with anesthesia/surgery. So, they are keeping him in the PICU again today, watching him closely, and changing some of his meds to his if his bronchial muscles will relax. The pulmonologist came by this morning and is also keeping a close eye on him. The surgeon also came by this morning to check out his mouth and so far, the surgery site itself looks ok.

So, as has happened in the past, it's his breathing that's the cause for concern. As it stands right now, they will be in the PICU today and re-evaluate tomorrow if they can move to the regular pediatric ward.

We would appreciate your prayers for healing and relaxation for Titus. And for strength/rest for Becky as she is staying with him 24/7.

Monday, January 19, 2009

Out of Surgery - Back in the PICU

Titus cleft-palate repair surgery went smoothly this morning. As soon as surgery was over, they brought us up to the PICU. As expected, Titus always does great with surgery - it's his post-op breathing that is difficult. His CO2 levels were high, so they have him on constant zopenex right now and his levels are dropping back down. We have the same RT, doctors and PA that we had last year - so it's great they are familiar with Titus.

They pierced his tongue with a thread to hold it down in the event they need to. I tried to convince Becky to have a stud put in - she didn't go for it. They will remove it tomorrow.

He has arm restraints on, and will have to wear them for 2 weeks to keep his hands out of his mouth. Between the arm restraints and the breathing mask, he's pretty agitated. And he has a lot of secretions as his mouth is healing, but it's the first time he's ever had snot bubbles come out of his nose, or anything leak out his nose.

And, Dad is having a good day at Parkland. They are removing his chest tube and respirator/ventilator today. Once he is off the vent, the will put him in his back brace, and then he will be able to sit up more.

Becky will be spending the night with Titus tonight. I'll update more later if status changes.

Saturday, January 17, 2009

Saturday Update

I spent the morning with Dad. He was awake and alert. The respiratory therapist stated the x-rays of his lungs were night and day different from yesterday. They are turning his oxygen down and working to wean him off the ventilator. They have also completed 2 of the 4 antibiotics he is on.

He is still very hot - the ventilator blows warms air into his lungs and he is just burning up. So, as cold as it was yesterday and as chilly as it was this morning, we had the window open and an ice pack on his head.

Dad asked for the TV to be turned on today and was listening to the Baylor/OSU game as I left.

Again - baby steps, but he is showing signs of improvement.

And, Titus is set and cleared for surgery on Monday morning. We have to be there at 6am on Monday morning. I anticipate they will probably take him back around 7am. Once he is sedated, the surgery will take about 2 hours. As we have grown accustom to, intubating Titus for surgery has gotten easier. It's the extubating him after the surgery that generally takes awhile. Please pray for his lungs/breathing after surgery. Fixing the cleft palate should improve his breathing after everything has healed, but it's his breathing after surgery that we are most concerned about. There are numerous issues they have made us aware of after surgery that we have to be prepared for. And we know, they have to tell us the worst along with preparing us for the best. They anticipate Titus will be in the PICU for 2 nights. We do feel a comfort level at the PICU since we know the doctors and nurses there, but even so, we are praying for a short hospital stay.

Thanks for the prayers - I'll update on Monday after surgery.

Thursday, January 15, 2009

Quick Update on Dad and Titus

*** Afternoon Update***
Dad does have pneumonia, but is having a good day. The doctor stated he is twice as good today as he was on Tuesday. He's doing his exercises (lifting his arms over his head) and communicating more clearly with Mom on what he wants. He'll still be on the ventilator a few more days, but they are beginning to wean him off.

Not much has changed for Dad. He has been moved to a different ICU ward - one that provides a room with a door, tv and chair, instead of a curtained off area. It's much quieter and provides dad with more privacy.

He is still on the ventilator, but is alert and over breathing the machine a bit. For a few days, he was very agitated when awake (the vent can do that) and his blood pressure/heartbeat would elevate. A cardiologist has done an EKG and echogram to check out his heart. We have not heard the full results, but prelim results is that his heart is fine. It's just reacting to the stress of what is going on right now.

They did a culture to test Dad for pneumonia, and we should receive the results today. They have started him on antibiotics and will change/fine-tune the prescription once they receive the test results.

The two main concerns right now are still his lungs and kidneys. All of his blood levels are showing normal levels, so there is no concern there (or concern with the reaction to be given the wrong blood rh). Please continue to pray for healing of the bones and strength for his lungs/breathing. Please continue to pray for strength for Mom. She is there as much as she can be and appreciates all the support and friends that have come by.

Titus has pre-op checkups all day today in preparation for his surgery on Monday. He has been doing great this week with his cochlear implant. He just smiles when you talk to him, but he is so alert with it on. What a joy it is to see his face light up when we put it on in the mornings. We are also mentally preparing for next week. We know the stress that surgery puts on his little body - and this will be probably one of the more intensive surgeries that he has had. Titus seems to do well with the surgery, but it's extubated him from anesthesia that always seems to be a problem. Fortunately, we are with doctors that have been with him since birth (14 months yesterday) and we will be back at Medical City which we are very familiar with. Even then though, it's tough when all my boys are spread out and not under one roof. It's only for a few days, and we know to take it one day at a time, but your prayers are appreciated.

Tuesday, January 13, 2009

A Better Day

Dad had a good day on Monday (and he probably had a good day on Sunday - we just had a bad day with the nurse).

Mom and Patti (my sister) arrived earlier on Monday and were there during the doctor's rounds. The doctor then came back and spent time with them, answering their questions. We had provided them a list of questions to ask each time they saw the doctor.

Dad was awake and alert when they arrived, but became agitated/frustrated that he was not able to communicate. Since Dad is still on the ventilator, he's not able to talk and this is frustrating to him. And with the neck brace on, he can't turn his neck. The plan was to keep him mildly sedated most of the day so that he would rest and be pain-free.

From discussions withe the doctor, his blood levels were improving and looking good. Parkland has given him the correct blood type/RH each time - the mistake happened in McKinney where they gave him two units. His kidneys are showing signs of improvement. They do not feel there is any more internal bleeding going on. They were unable to install the filters in his arteries for blood clots yesterday, but will do so today (Tuesday). They plan to keep him on the ventilator for a few more days. There main concerns right now are still his lungs and kidneys.

Mom had her chair all day and this helped her tremendously. Plus, they had a good discussion with the charge nurse about the events on Sunday. Pastor Jeff and others were down today and that lifted their spirits tremendously.

This has brought back a flood of memories and events from when Titus was in the hospital a year ago. Honestly, most of us probably aren't comfortable in a hospital setting - especially ICU. And, honestly, most of us don't ask enough questions in that type of environment. But, my precioius wife has taught me one thing - silence teaches you nothing in these situations. And, as I have learned to tell the doctors "my wife is not questioning you or your abilities; she just has lots of questions".

As a helpful hint, here are few basic questions anyone should ask in these types of situations.

"Please provide me a head-to-toe analysis of what's going on." Have the doctor review the list of injuries and concerns.

"What are the two things you are concerned about today? What are we doing about those today?" Don't worry about next week or when you get well, but ask about what they will be doing today to tackle the most important things.

"What should I be looking for as signs of improvement or decline?"

And, if you really want to get to know your medical background, ask them about lab results, what are the normal ranges they are expecting to see, what are the ranges/numbers that came back on the tests, what do they expect to see, what happens if the numbers continue to fall out of the range, etc. It just never hurts to ask what or why. Becky can talk blood lab work numbers with the best of the medical professionals. In fact, I asked our attending the other day if Becky asked more questions than a first-year doctor. She smiled quietly, and politically stated "She asks informed questions".

Thank you for your prayers and support

Sunday, January 11, 2009

A Bad Day - A Busy Week

After spending as close to 100 days in ICU last year, we have become quite familiar with the protocol of the ICU unit. So, walking in comparing yesterday with today was quite a difference.

To contrast, yesterday (Saturday), dad was fully alert even while on the ventilator. He was doing his physical therapy, listened to the football game, shook hands with the visitors that came by. Even though he is not able to talk due to the ventilator, he was still able to communicate. And, we had a wonderful nurse who kept us informed about information, tests. The doctor was impressed with Dad's energy and strength.

Today, I went down to visit dad after church. Mom and my sister had gone down earlier. The nurse had him fully sedated with his hands tied down. And she wasn't full of information for Mom on the reason why. When I showed up, I got a few more answers out of her, but not much more. In fact, she rushed out of his room pretty quickly and was not around for most of the afternooon.

After being gone for over an entire hour, she popped in and said that only 2 people could be in his room. Since she was there, I let her know I wasn't happy with the level of care that he was receiving this afternoon since she has not been around. While she was gone, dad was coughing and needed to be suctioned, but she wasn't there. He had several monitors going off, including one on his ventilator that needed to be adjusted, and she wasn't there. We had to inform her that it had been that way for over 2 hours. I've never seen a nurse totally leave a critical patient for over an hour without transitioning care to another nurse.

I left so that Mom and my sister could be the two in the room. And my sister stated the nurse stayed by dad's side the entire time catching up on everything she hadn't done. As they found out, there were several other things the nurse had neglected to do for dad today.

As you can tell, I'm a little upset. You see, I revere our ICU nurses. I have always been in awe at how they can work 12-14 hour days with such intensity and with such critical patients. We have always had great nurses with Titus. And Dad's nurse on Saturday was fantastic and a great advocate for dad all day. Today though, it just didn't happen.

The doctor did come by later that afternoon and we did learn new information. Apparently when they gave dad blood yesterday during surgery (and he had an allergic reaction), it was because they gave him the wrong blood type. The doctor was incredibly apologetic, but after the day we had had with the nurse, it was a bit unsettling that this mistake could have happened. The doctor did switch dad's pain medication this morning and did want him to be sedated all day so he could rest. If only the nurse could have told us that this morning, it would have made things go much smoother.

A lot of Dad's swelling has gone down, but they are now believing he has an injury to his lungs - they just are not able to really detail what that injury is. And they believe he is still having some small internal bleeding, but they have not pinpointed where that could be coming from.

They will also be putting in a filter in his arteries to catch any blood clots. This is pretty standard and a good preventive measure to take since Dad is going to be down for awhile and is unable to take any anti-coagulant since he's still internal bleeding.

Please continue to pray for Dad. He has a lot of healing to do. I know he's a strong and healthy man, and I have to pray that he is protected and safe when we are not there. I pray his nurses will care for him, watch over him, and follow the doctor's orders. Mom is tired and this is a whole new world for her. Please continue to pray for her strength and rest during this time.

Titus has a busy week ahead. Along with therapy tomorrow, Titus several pre-op checkups this week before his cleft-palate surgery a week from Monday.

The boys also start back to swimming practice, tickets to the King Tut exhibit, and Homeschool CO-OP this week, and we are arranging for all the care the following week when Titus has surgery.

And, I don't even want to bore you with the details of my work schedule, but let's just say, I have some intensive work to do over the next few weeks that requires me to be accurate, alert, and very detailed. I know when it rains it pours - and this is just how it's going to be. It's a good reminder that no matter how busy I think I am, how self-important I can get, how righteously indignant I may get with a nurse (or think I did), my steps are numbered and "my light and momentary troubles are achieving for us an eternal glory that outweighs it all. "

Well, I should go to bed. I've rewritten this 3 times. My head needs to let it go and put my trust (and my dad) in the Lord's hands. Bad days happen. Mistakes happen. Tomorrow is a new day, with new nurses, new doctors, more tests. So, let it rain, let it pour, bring it on.

Saturday, January 10, 2009

Update on my Dad

Dad had surgery yesterday to insert the pins in his pelvis. Surgery went smoothly and Dad is still in ICU. They are carefully monitoring his breathing and all internal organs as they are adjusting to the stress of the accident. He is still on the respirator and is over-breathing it a bit (which they don't want him to do) so they are giving him some morphine to slow him down.

Dad had a bad cough for a few weeks before the accident and it looks like he may have had a low-level case of pneumonia - so that is hampering his lungs. Right now, the major concern is his breathing and his kidneys - again, all the internal organs are adjusting to the stress of the accident.

They have detected a slight facture in the upper neck and x-rayed his left arm today to see if there are any fractures there. For his neck, they will keep him in a neck brace for 6-8 weeks, but are encouraged that he able to move his arms, legs, fingers, etc. They do not detect any spinal cord injury.

He is quite swollen from the accident and all the fluids they are giving him. This morning, the nurse told him to raise his arms over his head several times, and squeeze his hands into fists several times. This is to help reduce the swelling. As expected, dad continued to do this until we told him to stop (like an hour later!!!) The doctor came by and we were talking with him and turned around, and there's dad, lifting his arms and squeezing his fingers like he was told. We told him that Dad will do exactly as he's told - he wants out of here!

Thank you for all the notes and emails and prays for Dad. He has a long way to go, but is a strong man. They brought a tv in for him - and even though he can't turn his head to see it, he likes listening.

Titus got a haircut today - he was in desperate need. And we were laughing because we do believe that he sees some peripherally - well, he could certainly see the scissors coming at him cause he would turn his head toward it like all my other boys did at that age. He is enjoying hearing - he keeps looking for where the sound comes from. But, because he keeps moving his head a lot, the magnetic attachment keeps getting brushed off. We can get a stronger external magnet, but hope the haircut and some toupee tape will help.

Thursday, January 8, 2009

An Incredible Miracle

Today I witnessed the most incredible miracle - Titus got his cochlear implant turned on this morning.

When we arrived this morning, we had to spend 45 minutes going through all the paperwork, how to work the receiver, putting in the batteries, etc. There is a lot of information to soak in, but I know it will become second nature in a few days.

Then Janae programmed the receiver. She put the the receiver on his ear and had a series of beeps at different frequencies from soft to loud. She told us, this will be our first indicator if he hears the beeps.

And, it was like the world stood still as watched him intently for any sign of recognition.

And all of the sudden, Titus looked up, jerked his head back and started looking around. He could hear the beeps. We were all thrilled as Titus continued to look around for where the sound was coming from.

After the receiver was programmed, we put it on his left ear, and turned it on. It has 4 programs and it's on the first which still keeps sounds soft for him, but he started looking all around for where that noise was coming from. Becky got in his face and told him she loved him, and he just smiled. Noah did the same, and the biggest grin broke out on Titus' face. He then got a little cranky since it was naptime and we had woke him up, but he couldn't figure out where that crying baby was coming from. But, he could hear his own voice.

My son can hear. Do you know what that means for him? He has gone from having 3 senses to 4 . He can hear the sound of his father's and mother's voice. He can hear us now when we sing to him. He can hear all his brothers (and boy can it be noisy at times). He can hear us when encourage him. He can HEAR! It's nothing short of a miracle.

All week I have thought about those miracles in the Bible when Jesus would heal someone. And I had to think, how did the person feel to go from blind to total sight, from lame to walking and leaping, from leprous to clean. It was never a gradual process - it was immediate. Like turning on a switch. It was like that today. All I can say is thank you God. My heart is full.

This last shot gives you a good perspective of all the devices. The piece around his ear is the receiver - it has tiny microphones in it that take the sound and transmit through the coil. The coil attaches to a magnetic piece that holds it on his head. The internal piece also has a magnetic. (And yes, the boys have already attached a refrigerator magnet and chip clip to his head just to see if the magnet on the inside really works.) Then clipped to his clothes is the battery pack. Eventually, the battery pack will be part of the receiver around his ears, but since his ears are so small right now, it's a lot to load up on his ear.

Over the next few weeks we will take Titus through the 4 programs, letting him adjust to each one which will increase the level/frequency of the sound that he hears. And, then next month, they will program some more. Over the next few months, they will fine-tune and program the receiver. And, then sometime this summer, we should be able to get his right ear done.

It's amazing.

My Dad

Many of you know my dad and many of you do not.

But let me say, that my dad is an awesome man. He always thinks of others, he's incredibly faithful, and his love for his wife and kids and 7 grandsons knows no bounds.

My dad has never had a sick day in his life. When he retired from Exxon after 29 years, they gave him a perfect attendance placque - something that no one has ever done for never missing a day of work in 29 years.

So, you can imagine the shock it was to see him lying in the hospital in ICU.

Yesterday morning, dad went to work with several other men at the church building the hispanic mission in town. Dad is an incredible electrician, and he loves working with these men. He climbed up on an extension ladder that began to slide. Dad rode it all the way down to the ground, but fell on his right side. He refused to let them call 911 (which doesn't surprise me).

Once they got to McKinney General, it was detected that his pelvis is broken in 4 places and he has two vertebraes that are fractured. He was also internal bleeding. But God protected my dad in that he didn't hit his head at all and was awake, lucid and responding the entire time.

They careflighted him to Parkland Memorial Hospital immediately which has the best trauma unit and orthopedic unit in the country. They were able to stop the internal bleeding, put his leg in traction to keep from moving his hip, and give him some slight pain meds. They have noticed that if they give him to many pain meds, his blood pressure drops, so he is still awake and in pain.

I was in Toronto yesterday when Becky called me. I had just stepped off the elevator at my hotel and into the shuttle to take me to the airport. I truly believe God's angels paved the entire trip home for me since I was flying standby and a huge snowstorm was going on. From the minute I stepped in the airport, I had a kind agent walk me to a flight (that was already closed), get me through security with an 8oz hair gel bottle (and those that travel know how much of a no-no that is), and get me on the plane within 10 minutes of stepping into the airport. I even got a aisle seat. The snow kept coming down harder as we waited for de-icing, but we took off and landed in Chicago without a hitch. I had just enough time to walk off, grab a quick bite, get to my next gate, and get on standby. This time, I had the last seat in the plane (and I hate flying in the back). After they shut the door to the cabin, a flight attendant came up and asked me if I wanted to move to 13D near the front. I stated I had a carry-on bag and weren't the overhead bins full? He said - come on. And he walked me up and sat me down. The entire day I never said a word to anyone about my dad - frankly, the cynical side of me who has traveled all over the world knows that ticket agents have heard every story in the world when people want to get on a plane. But I knew that God knew and God made a way.

As soon as I landed, I drove to Parkland and got there just as the trauma doctor came into provide his diagnosis. Again, perfect timing. And, after he told us the extent of the injuries, they moved dad to Surgery ICU where we could go see him.

And you want to know what my dad's first words were?

"How's Titus? Is he still getting his cochlear's tomorrow?"

That's my dad, thinking of others instead of himself.

And walking back into an ICU after all that we have been through with Titus, everything kicked back in. What questions to ask the doctor, making sure mom was drinking water and getting some food, making the plan for the evening, explaining what will go in ICU during the night.

It's hard when your dad has never been sick. The only other time I remember him flat on his back was 2 times growing up: once when a bug crawled in his ear and he was laying down trying to get to crawl out (it didn't), and another when he was bounced off the back of the volunteer firetruck in Premont on the way to a fire (and he was a giant scab - but still got up and went to work).

They are doing an MRI and cat-scan today, and believe we will have surgery tomorrow to put the pins in his pelvis. They can put a brace on his back that will help with vertebrae fractures but last night do not believe they will need to do surgery for the fractures. He can move his toes and legs and has sensation in his legs which is good.

Please pray for my dad, that he can get some relief from the pain, that the surgery times/schedule will open up quickly, that the brace for his back will help with the fractures.

And please pray for my mom - she's never had to deal with dad being sick. And the hospital is near downtown dallas (and quite a maze to navigate). She needs her rest to so she has clarity of thought and mind.

Tuesday, January 6, 2009

Update on Titus

Well - it looks like Titus has a new tooth. It's his first one on top. It's barely breaking through, but it would explain the slight fever and increased secretions he has been having.

January will be a very busy month for Titus. His cochlear implant will be turned on this Thursday. We are excited to see how Titus responds, but also know this will be quite the shock to his senses. They tell us you can never anticipate how a child will respond, but you can only imagine the sensory overload you would experience to go from not hearing to hearing.
Also, Titus is being fitted for braces for his legs this week. Although Titus is still working agressively in therapy on learning to sit up, hold his head up constantly, etc, they want to fit his legs for braces to work on him standing. From a physical development perspective, Titus is developmentally at 4+ months - so he's not sitting up yet, but he is showing improvement. They work Titus hard at therapy 4 times a week. There are days he is tuckered out before or after therapy. But the therapist love him dearly. Several weeks ago, I went to therapy with Becky and Titus. They were working on him sitting up and holding pressure on his arms. He would grunt and groan, but would do it. And after the therapist would stop working on one exercise, he would look up at her and smile. It was like "look at me - I did it!".

The big thing coming up this month is his cleft palate repair surgery on Monday, January 19th. This is major surgery for our little guy and it's anticipated he will have a 3-5 day hospital stay. At this point, we have no way of knowing how long he will be in the hospital and if he is on the regular Pediatric floor of the hospital, someone has to be there with him 24X7. If he is in the PICU, we can leave him for several hours since in the PICU he is assigned a full-time nurse to look after him. But along with caring for Titus in the hospital, we have 4 other boys that still need to be attended to and cared for. Hospital stays are hard on all of us.

The surgeon is hopeful that repairing the palate will not only allow Titus to begin feeding therapy, but it may improve his breathing. We realize that feeding him orally will take months, even years before the g-tube is removed. I think we would be more excited about seeing his breathing improve at this point. It's hard to explain, but realize that Titus has no palate - so it's pretty much an open space from his upper gums to his sinuses. Therefore any air coming in his nose can easily escape out of his mouth since he sleeps with his mouth open. Even thought he is on oxygen, we wouldn't be surprised if most of it goes in the nose and exits right out of his mouth. Improving his breathing is a huge prayer request.

After surgery, we will also have more therapy for Titus in addition to his regular physical and occupational therapy. They will add in more speech/hearing therapy and feeding therapy. As you can imagine, that's several more meetings per week to be scheduled.
As Becky and I were talking this week, we are excited but also nervous about all the upcoming changes. We do realize how comfortable you can get in your routine (even if it involves getting up several times a night, multiple breathing treatments a day, suctioning out secretions, etc). All of that has just become part of our normal daily routine. But we also know that with surgery comes more pain for Titus, more temporary discomfort, more changes in the routine. We would appreciate your prayers over the next few weeks.