Wednesday, December 30, 2009
Your prayers are appreciated.
Tuesday, December 29, 2009
Thursday, December 24, 2009
Last week he fell at work and hit his head. Since it was a Worker's Comp claim, they sent him to CareNow. After a week, his heading was still hurting, but he was released from the Worker's Comp claim and could now go to his own doctor. He went to have a CT scan done On Dec 22 and they detected a pressure buildup in his brain (initially they suspected a blood clot and several other things, but the final analysis was a frontal lobe bleed). They did another CT scan, checked him into the hospital for surgery. Surgery was yesterday at 2pm and was successful. They expect to spend a few days in ICU and hospital before being able to come home.
Proverbs 16:9 tells us "In his heart a man plans his course, but the LORD determines his steps." It was funny how in a few short minutes on Tuesday, all the plans we had made for the holidays changed. But what I noticed was how we responded. If we have learned anything over the last few years it's that God directs it all, God has a purpose in all things, and don't resist the flow when God leads (it's pretty futile).
So, enjoy the holidays, don't let the little (or big) changes rob you of your joy for the celebration of Christ's birth. Realize life is not what happens to you, but how you respond to it.
Have a wonderful Christmas Eve!
p.s. Praying for SNOW!!!!!
Wednesday, December 23, 2009
Ok, before you call PETA on me, this was her favorite place to hang in the house!
Tuesday, December 22, 2009
Friday, December 18, 2009
Monday, December 14, 2009
I looked at the cover and said, "No son, Santa's not on the cover".
Tucker looked at me, pointed at the picture, and stated "Yes, Dad - that's Santa".
I looked again and said, "No son, that's Barbara Bush".
But upon a second look, she kind of did look like Santa without the beard.
Wednesday, December 9, 2009
After the appointment, the dentist stated they have a typical "korean" mouth. When Cade heard this, he looked at me and said "Korea - how did he know?"
Sweet Cade - you make me laugh and smile! And I love that you are still color-blind at this age.
So, I just smiled back at Cade and said "Well, he's knew all about you when we brought you home."
Sunday, December 6, 2009
And of course, Titus had a major explosion when we stopped for lunch. He did this to me on the way up there - Becky and the boys were inside McDonalds and I was changing Titus in the car. You would think after 12 years of changing diapers I should have it down, but no - each child has to decide to outdo the other.
This was a major nuclear attack. If it could be bottled, I am convinced it would stop the war in Iraq (or Afghanistan - whichever one Obama is putting his energy to this week). I used every available wipe in the car - and then was calling for Aidan to bring me paper towels from the restaurant. There was poo from his elbows to his toes - dripping out his jeans, on the seat of the car, side of the car, and even on the road. And the smell cleared out the parking lot in a manner of minutes. I believe you get the picture.
We had to stop every two hours to give Titus his eye drops. One drop of medicine had to be followed by an ointment 5 minutes later. But each "5-minute stop" turned into 15-20 minutes. After awhile, it just became a comedy of errors. Between Nashville and Memphis, Becky and I had a long discussion with Aidan and Noah and explained to them all the events of the week. A lot of tears were shed in the car. As hard as it was to hear the news this week, I found out that it's even harder to tell your boys.
We rolled into town around 11:30pm, and Vanessa, our night nurse, met us at the house. The next thing I knew, it was 8am, and Lisa, Titus' day nurse walked in with fresh donuts.
Lisa spent the morning with Titus allowing Becky and me to take Aidan and Noah to church and pick up Tucker and Cade. Lisa took the above picture - and you can see how happy he was to be home and back in his familiar surroundings. He has had a good day and sat in my lap watching football this afternoon.
This week will bring a series of follow-up appointments as Titus has his eye evaluated and other regular appointments and therapy. His breathing and lungs still sound a bit "wet" and he has some clear congestion that we are suctioning, but you can tell he's happy to be back home.
Friday, December 4, 2009
I came into his room this morning around 6am. Becky was in bed with Titus. And Titus was off the BiPAP and on a high-volume nasal canula. He was awake and happy. Becky told me that he was continuing to get irritated in the night with the BiPAP and even after giving him some mild sedation, he would never settle, so they made the decision to try the canula again. His respiratory rates are back to normal levels (yesterday when they did the canula his rates were still very high).
At this moment, he is fussy while the nurse is giving him a xopenex treatment - and this is very normal for him.
The plan this morning is to wean him down on oxygen through the day to see how he does and resume normal feeds. We still don't know if they will medically transport him home - it's still an option - but if he continues to show this improvement, they may still put him with us in the car. At this point, it's hour by hour.
But, he is much better this morning - and I know it's due to the prayers of God's people.
Titus has been fussy most of the day, but we have found out the reason why. He has a corneal ulcer in his left eye which can be painful the dr say. They are starting him on drops and then want us to see his opthmalogist as soon as we get to Dallas. In the last 2 hours, he has finally calmed down and stopped fussing. We have also started him back to his normal feeds and he is doing good.
We got the portable oxygen tank filled up, but Titus is currently on .75/liter of oxygen right now and has not de-SATed all day.
Becky has been to Columbus to pick up Aidan and Noah (and Buttercup). Yes, we sent two boys away and we are getting two boys and kitten back. (I know what you are thinking, but remember, we already know we are crazy. ) Aidan has been asking for a cat for the last 2 years, and we need a good mouser at the house since the mice are back for Christmas (Quita, the golden retriever has already caught two in the house and dropped them at our feet - lovely).
I may not get to update till we get home, but your prayers and notes of encouragement have carried us through the last few days. We still have some heavy-duty decisions to make. As we have said to the doctors, we did not get the answers we were expecting, but we got new information that will help us with his care. We plan on leaving early in the morning and driving straight through to Dallas - so please keep us in your prayers all day tomorrow.
Thursday, December 3, 2009
Growing up, my dad could fix anything. Now, it may not look pretty and he may have used a lot of duct tape, but he could fix anything (and still can).
I think that's an inherent quality in being a dad - when something is broken, it's your job to fix it. When the icemaker stops working, the boys call me. When the car acts up, Becky calls me. (well, actually, she still calls her dad). When a toy breaks, the boys bring it to me. And my job is to fix it. I like this part of being a dad. (And, ok, I will admit that the boys will also ask PeePaw and Poppy to fix a few thing too - it's also part of being a grandfather).
But when your child is so sick and you can't fix it, you feel helpless. When you have to explain to your other boys that Titus is sick and dad can't make it better, you feel like a failure. When Titus wakes up and is frightened and starts to cry and looks at me with fear in his eyes, all I can do is put my face close to his and whisper "It will be ok" even though I do not know if it will.
I think all my prayers today have been begging my heavenly Father to just fix it, make it better, let him breathe. And I know my Father can - but his repair may not be in my timing and He may have a greater reason in the brokeness. Romans 8:18 states "our present sufferings are not worth comparing with the glory that will be revealed in us. " And that is my prayer tonight for Titus - resting in knowing that all of this has a plan and purpose.
Titus was taken off the ventilator this afternoon. He did not respond well to a high-flow nasal canula, so they put the BiPAP on his face. The BiPAP is a large mask that covers his mouth and nose and has to create a tight seal around his face to work properly. He doesn't like it. He has had the BiPAP before. He didn't like it then, and he doesn't like it now. When he wakes up, he fusses himself till he is so tired that he falls back asleep. I've mentioned numerous times that Titus is a very content child, so for him to fuss is uncharacteristic for him. But, as his dad, I know it's because he's scared. He doesn't know what is going on. And when I put my face next to his and he opens his eyes and looks at me, it breaks my heart since all I can do is hold his hands down to keep him from trying to pull it off his face. He's gotten quite adept at grabbing the hoses and ripping them off.
His chest x-ray this afternoon shows some lung collapse on the upper right side. You add to that the information we found out yesterday that he doesn't really move air out of his bottom lobes of both his lungs, he still doesn't have a lot of lung capacity.
He will stay on the BiPAP tonight - and then they will re-assess tomorrow. They have discussed having him medically transported to Dallas and if he goes back on the vent, this would speed up that decision. Honestly, we would prefer this - it would be the quickest and safest way to get Titus back to Dallas. But they would also like him to leave the hospital the way he came - which was in the car. We just aren't sure how he will do on a 15 hour car-trip home. We will need to make some decisions tomorrow since I need to be back at work on Monday. And, Becky and I believe that the rest of the boys need to be back together at home. Please continue to pray for us as we make the immediate decisions that need to be made, along with the long-term decisions we are still faced with. Our trip to Cincinnati has provided us with new decisions and new information (not the information we wanted to hear) and now, we just want to get back home.
Please know that wanting to be home is not a reflection on Cincinnati Children's Hospital - they have been incredible in listening to us as the parents on how to best care for Titus. As a teaching hospital, they make their rounds in the mornings and evenings, and each time, they have asked us to be included in the discussion on Titus situation and care and have listened and heeded our suggestions on his care.
Thank you for the emails and notes. We have sat and read them to each other and they are a balm to our soul. Thank you for your prayers - we can feel them. And for those who have been taking care of us and our boys (Michael and Beth here in Cincinnati, Eric and Roxie with Aidan and Noah in OH, and Marti and David with Tucker and Cade back in Dallas), you have been our pillars of support this week. It has been a peace to know that our boys are being cared for and that we have had a wonderful place to stay.
When we breathe, we take in oxygen into our lungs which gets carried through our bodies and comes back into our lungs as Carbon Dioxide (CO2) that is exhaled. Most of us maintain an oxygen saturation of 100% through our normal breathing and sleep. When your oxygen saturation drops below a certain percent, it means that oxygen is not being carried to all parts of the body. The lower it drops, the less your body is getting the oxygen it needs. Because of Titus breathing issues, we always have him on oxygen through his nasal canula and the oxygen he receives supplements his breathing to keep his SATs up. At night, Titus sleeps with a pulseoximeter attached to his foot which measures his heart rate and oxygen saturation. When the SATs drop below 90%, the alarms go off. Many times, Titus drops to the low 80's for a few seconds and then he brings himself back up or we wake him up a bit and his breathing kicks back in.
With that being stated, last night, Titus was deSATing down to the low 30's and 20's. A few times he went down to 6. Each time, a team of 4 nurses would come rushing in and begin to bag him to keep him breathing and get his SATs back up.
Generally when Titus is on a ventilator (which is a tube running down to lungs that is breathing for him - or assisting his breathing depending on how low the settings are), he fights the vents and will do his bronchial spasms. When he spasms, his lungs clamp down and he just stops breathing and turns a nice shade of blue.
By taking him off the vent, it should stop the bronchial spasms (since it has in the past) and they can wean him off sedation which will wake him back up. Our prayer this morning is that weaning him off will go smoothly and that he will maintain. The sooner he is off the vent and sedation, the sooner he returns to a normal state, the sooner we can be released and get home.
I will keep the blog and facebook updated throughout the day.
Becky and I so appreciate the prayers and emails over the last day. We both got some sleep last night even with all the hustle/bustle going on in his room (they also have a sleeping room that we alternated sleeping in). But as we talked about this morning, we could feel the peace overcome us last night. The song "somebody's praying, I can feel it. Somebody's praying for me" keeps rolling through my head. It is a comfort to know people are praying for Titus and for us.
Wednesday, December 2, 2009
Titus had all his scopes done this morning. In layman’s terms, they ran a flexible scope down through his lungs, a rigid scope down his esophagus, and an endoscopy of his esophagus and stomach.
This took about an hour, after which all three doctors came into a consultation room to tell us the results. And it was not news we wanted to hear. I could write a long list of issues they found, but it basically comes down to this. Titus has two obstructions to his airway that obstruct his breathing – specifically when he is asleep. And Titus’s lungs are not moving air like they should. The bronchi are very narrow or closed and when he breathes, oxygen is not getting to his lower lungs and he is not expelling Carbon Dioxide like he should.
The diagnosis is grim. The obstructions are not repairable and there is no treatment or medicine that can repair his lungs. Since this is the only baseline they have, they believe his lungs were born this way – and they cannot tell if it’s getting progressively worse, but the fact he is not expelling CO2 affects a lot of other areas in his body.
We have been presented with two options: a tracheotomy with a ventilator that will breathe for him to assist in expelling the CO2. This would be a permanent. It may prolong his life span some, but they do not know. However, having a vent will change his lifestyle (and ours) as we know it. It does not need to be done immediately – and they recommend it should be done in Dallas since you have weeks of trach/vent therapy and care to learn how to care for him.
The other option is to do nothing and let Titus continue as he is.
The doctors cannot make the choice – it is a decision we have to make. Either way, they do not feel his life expectancy would be passed his teens. Either way, one strong infection could easily wipe him out.
After two years of being in and out of hospitals and meeting with numerous doctors, we have never had to deal with news like this. No one has ever discussed life expectancy nor have we had to hear such devastating news. When we learned he was deaf, we were discouraged, but we knew there was so much he could still do. When we learned he was blind, we were discouraged, but knew there was so much he could still do. But to learn his lungs are irreparable and that his body is continuing to worsen because of the CO2 buildup and that there’s not much they can do . . . well, it just knocks you off your feet. But as Becky said through her tears, this surprises us, but is not a surprise to God. He knows, He cares, He comforts, He provides, He heals.
This morning before he went back in the OR, Titus was happy and playing. Before they took him away, I put my face in front of his and he smiled and put his hands on my face like he always does. They allowed us to walk with him all the way back into the OR, and Titus was happy the whole way.
And now, he is back in the Pediatric ICU, on the vent, and heavily sedated as they let him recover from the procedures this morning. He is De-SATing even on the Vent and just pulled his IV out. The plan is to keep him on the vent till tomorrow then take him off the vent and see how he does. But considering how he is doing now, we will see. I anticipate it being a very long night.
Here are our prayer requests:
At this point, we are ready to be home and have all our boys back under one roof. It's a 15 hour drive, but if God opens up a way for Titus to be careflighted to Dallas, that would be wonderful.
Becky and I need wisdom on future decisions. The trach/vent does not need to be done immediately and they recommend it be done in Dallas (but we need to get home first).
And we all need rest.
Since we had 4 hours before the next appointment, we went to the mall. I know you may think we are crazy, but since the hospital waiting rooms are filled with sick people, it's much healthier to keep him away from them - so off to the mall we went (and he was kept safe, warm and isolated from all contact in his stroller. It also allowed Becky and I to have a nice meal.
When we got back, we had 3 consults: the GI, the ENT, and the pulmonologist. Each one was very thorough in examining his charts and asking us questions. The last doctor spent 90 minutes with us and walked us through the results of the CT Scan. After he completes his bronchioscopes today, they will be able to tell us more of what they are seeing and thinking, but they are finding out a lot about his lungs and airway. It was also noticed that Titus had not been signed up for a sleep study, so with a few pulled strings, Titus was admitted to the hospital for a sleep study that night.
We have had sleep studies before, but this one was much different since it was in the controlled environment of the hospital. And, since they really wanted to see what he would do, they took him off oxygen while he was asleep - and the bells/alarms starting going off. We generally jump to get his Oxygen SATs back up quickly, but in this case, they wanted to see how Titus would respond. He would bring himself back up - but then drop again (and drop very low.). Becky was with him and it was driving her crazy to see this go on - but we knew they needed to get an accurate picture. After an hour, they put his oxygen back on, but it was a rough night for Becky in the hospital.
As I was driving back last night, one of my favorite songs was on the CD I was listening to - and the words were so apt. "His Eye is on the Sparrow" is so fitting for how I feel. And it brings great comfort to know that if God watches over the sparrows, he certainly is watching over my Titus today. What a peace it is to know that Titus is being cared for by the Great Physician.