Becky and Titus came home yesterday morning around 6am. The sleep study was over at 5:30am, so they packed up and came home. We won't know the results for a couple of days.
It's amazing how you can see the change in Titus when he is home. He knows that he is back in his "safe" place. He smiles more and plays more. Tucker and Cade came running into his room as soon as they got up to see him. Tucker kept saying over and over "I missed you Titus".
The big boys have gone camping for a few days which will also allow Becky to get some rest back here at the house. Lisa, our day nurse, was here all day yesterday and Vanessa was here last night. Becky and I went out on a date and then came home and crashed (well - I crashed after I watched LOST - ok, I slept a little during LOST, but will rewind that part and watch again).
It's so good to have them back home.
Thursday, February 26, 2009
Tuesday, February 24, 2009
From the Mouth of Babes
Sunday afternoon, we were at our usual spot after church having lunch having lunch - Scotty P's. We were in the main room, surrounded by people.
We aren't quite sure what happened, but all of the sudden, Tucker yells out "HOLY SHOOT!"
I looked Becky - Becky looked at me! Aidan spit his coke out, Noah falls out of the chair laughing and it was all we could do to keep from losing it.
That boy - I'm not sure where he learns these things. (And yes, I know it could have been a lot worse).
We aren't quite sure what happened, but all of the sudden, Tucker yells out "HOLY SHOOT!"
I looked Becky - Becky looked at me! Aidan spit his coke out, Noah falls out of the chair laughing and it was all we could do to keep from losing it.
That boy - I'm not sure where he learns these things. (And yes, I know it could have been a lot worse).
Released
Becky just called and they are sending Titus home (sort of). We had scheduled an in-depth sleep-study (different from the one they did yesterday) for tonight, so he's going from the hospital to the sleep study institute and then will be able to come home tomorrow.
He was his regular, content, happy self this afternoon at lunch - so it will be great to have him home tomorrow.
And, everything with our refinance finally worked out late yesterday afternoon. So we are now funded and officially refinanced. God's timing was impeccable because we called at the right time to get an incredible rate. I'm so glad God is in the tiniest of details and knows our needs.
He was his regular, content, happy self this afternoon at lunch - so it will be great to have him home tomorrow.
And, everything with our refinance finally worked out late yesterday afternoon. So we are now funded and officially refinanced. God's timing was impeccable because we called at the right time to get an incredible rate. I'm so glad God is in the tiniest of details and knows our needs.
Who Knows?
They performed a sleep study on Titus yesterday. This was the same test they did last week but lost the results on. He was pretty happy and content most of the day, but was cranky a bit last night.
Our cranio-facial surgeon is out of town this week - and he is one of the doctors we really need to consult with about options before a trach. But since Titus is doing great, there is a possibility they may release him tonight. He is scheduled for an in-depth sleep study at the sleep institute tonight. The sleep study in the hospital does not measure everything like the sleep study tonight will. If they allow that, then Titus can come home on Wednesday (and we will arrange nursing care). So, who knows? We do know to just take it day by day.
Our cranio-facial surgeon is out of town this week - and he is one of the doctors we really need to consult with about options before a trach. But since Titus is doing great, there is a possibility they may release him tonight. He is scheduled for an in-depth sleep study at the sleep institute tonight. The sleep study in the hospital does not measure everything like the sleep study tonight will. If they allow that, then Titus can come home on Wednesday (and we will arrange nursing care). So, who knows? We do know to just take it day by day.
Sunday, February 22, 2009
10 Days and Counting
**UPDATE**
Titus does not have a urinary tract infection - which is good. They did start the sleep study last night.
Titus has a good weekend, but after 10 days in the hospital, we don't have an end in sight. As one of the doctors stated on Friday, to look at him, you would wonder why he is there. But until they can determine what's causing the apnea episodes, they don't want to take the risk of sending him home. Several of the doctors have brought up a trach. Before we go down that path, we want to rule out a few other possibilities and talk with the cranio-facial surgeon. There are several other things they can do before we go to a trach.
Tonight, they are re-doing the 24-hour sleep test. It was done a few days ago, but for some reason, there are no results - so it's being repeated. During the test, we are not able to pick him up. They are also testing to see if him may have a urinary infection. One of the labs indicated there might be infection, so they are doing a culture again tonight to be sure before they start an antibiotic. They should know in the morning.
Becky did come home Friday night and today. It was good for her us to all be together, but we aren't complete as a family without Titus. Thank you for the prayers.
Titus does not have a urinary tract infection - which is good. They did start the sleep study last night.
Titus has a good weekend, but after 10 days in the hospital, we don't have an end in sight. As one of the doctors stated on Friday, to look at him, you would wonder why he is there. But until they can determine what's causing the apnea episodes, they don't want to take the risk of sending him home. Several of the doctors have brought up a trach. Before we go down that path, we want to rule out a few other possibilities and talk with the cranio-facial surgeon. There are several other things they can do before we go to a trach.
Tonight, they are re-doing the 24-hour sleep test. It was done a few days ago, but for some reason, there are no results - so it's being repeated. During the test, we are not able to pick him up. They are also testing to see if him may have a urinary infection. One of the labs indicated there might be infection, so they are doing a culture again tonight to be sure before they start an antibiotic. They should know in the morning.
Becky did come home Friday night and today. It was good for her us to all be together, but we aren't complete as a family without Titus. Thank you for the prayers.
Friday, February 20, 2009
Urgent Prayer Requests
There are times you just need to call people to prayer.
So, here you go.
As I type, Titus is playing in his crib (and really gassy). He's happy and been playing most of the afternoon. To look at him, you would problaby wonder why he is in the PICU. The doctors are not sure what to do about him and what is causing these sporadic apnea issues. One of the doctors today asked me if we were opposed to a trach. Becky and I have talked about it - it's not that we are opposed to a trach - we've just worked so hard over the last 15 months to avoid it. But we want what is best for Titus for him to grow and develop. And the doctors don't want to rush into a trach either if there is something that is causing this episodes that can be corrected. We know a trach isn't forever - but it's like the g-tube: once you get it, you are going to live with it for awhile.
So here's my prayer request: please pray for wisdom and discernment for the doctors to determine the cause. And pray for healing for Titus - that this apnea episodes will stop.
Secondly, Becky and I are re-financing the house. We closed yesterday, and now one of the lenders is stalling based on verification of employment due to they can't find my work number on the internet. Our offices recently moved, so superpages.com isn't up-to-date. And there's not a whole lot I can do about that. But, if they will just pick up the phone and call directory assistance, they will get exactly what they are looking for - verification that the address matches the phone number. It seems absurd to me that any company would rely solely on the internet for 100% accuracy (because "isn't everything on the internet true!" - and yes, that's my VERY sarcastic side coming out).
So, please pray that by Tuesday morning, this whole refinance mess will be resolved. It can be if they will just pick up the phone instead of relying on the internet.
And, as I type, I am realizing how worked up I am about this (I've spouted off to anyone who will listen to me this afternoon). And now I realize, isn't it amazing how passionate and worked up I can get about such a trivial/silly issue of internet validation. And there are people, right down the hall who are scared to death their child might die, fearful of all sort of scary diseases, and unaware of a need of a Saviour. And I sit here having a pity party because some loan agency wants everything on the internet to be true/accurate.
So, thirdly, you can pray for me - and that I would look outside of myself to matters that really matter. Gee - 5 minutes ago I was furious and now I sit here humbled. I give. . .
So, here you go.
As I type, Titus is playing in his crib (and really gassy). He's happy and been playing most of the afternoon. To look at him, you would problaby wonder why he is in the PICU. The doctors are not sure what to do about him and what is causing these sporadic apnea issues. One of the doctors today asked me if we were opposed to a trach. Becky and I have talked about it - it's not that we are opposed to a trach - we've just worked so hard over the last 15 months to avoid it. But we want what is best for Titus for him to grow and develop. And the doctors don't want to rush into a trach either if there is something that is causing this episodes that can be corrected. We know a trach isn't forever - but it's like the g-tube: once you get it, you are going to live with it for awhile.
So here's my prayer request: please pray for wisdom and discernment for the doctors to determine the cause. And pray for healing for Titus - that this apnea episodes will stop.
Secondly, Becky and I are re-financing the house. We closed yesterday, and now one of the lenders is stalling based on verification of employment due to they can't find my work number on the internet. Our offices recently moved, so superpages.com isn't up-to-date. And there's not a whole lot I can do about that. But, if they will just pick up the phone and call directory assistance, they will get exactly what they are looking for - verification that the address matches the phone number. It seems absurd to me that any company would rely solely on the internet for 100% accuracy (because "isn't everything on the internet true!" - and yes, that's my VERY sarcastic side coming out).
So, please pray that by Tuesday morning, this whole refinance mess will be resolved. It can be if they will just pick up the phone instead of relying on the internet.
And, as I type, I am realizing how worked up I am about this (I've spouted off to anyone who will listen to me this afternoon). And now I realize, isn't it amazing how passionate and worked up I can get about such a trivial/silly issue of internet validation. And there are people, right down the hall who are scared to death their child might die, fearful of all sort of scary diseases, and unaware of a need of a Saviour. And I sit here having a pity party because some loan agency wants everything on the internet to be true/accurate.
So, thirdly, you can pray for me - and that I would look outside of myself to matters that really matter. Gee - 5 minutes ago I was furious and now I sit here humbled. I give. . .
Hanging Out
I came up to the hospital last night so Becky could go home and sleep in her own bed (although from what I've heard, Tucker and Cade camped out in her room in sleeping bags). So, although I am taking the day off, I've been working on email all morning when Titus naps.
Titus had a 2 apnea episodes last night - one in which he really dipped low. And, this morning while napping, he's had 3 little episodes. So, we aren't going anywhere today (or probably through the weekend). Except for the apnea episodes, he's doing great. He's fever-free, rash-free, and his lungs sound clear - they just can't figure out why he's having apnea episodes.
Cade is feeling better, and Tucker has medicine that he is now taking, but is still experiencing welts.
Please continue to pray for wisdom for the doctors - they are stumped about what to do, but do not want to send us home with these types of issues.
Titus had a 2 apnea episodes last night - one in which he really dipped low. And, this morning while napping, he's had 3 little episodes. So, we aren't going anywhere today (or probably through the weekend). Except for the apnea episodes, he's doing great. He's fever-free, rash-free, and his lungs sound clear - they just can't figure out why he's having apnea episodes.
Cade is feeling better, and Tucker has medicine that he is now taking, but is still experiencing welts.
Please continue to pray for wisdom for the doctors - they are stumped about what to do, but do not want to send us home with these types of issues.
Thursday, February 19, 2009
Fussy
Titus had a cranky, fussy day on Wednesday. No one is quite sure why. He is cutting 2 teeth and that could be part of it. Late in the afternoon, he had a bad reaction to one of the medicines they gave him and that just upped the crankiness. Becky stated he wailed for about 5 hours yesterday (which in some ways gives his lungs a good workout, but is exhausting to try and console him).
They were scheduled to do a sleep study last night, but when I last talked with Becky, they still had not come to set it up - and Titus had just fallen asleep.
Cade is starting to feel better - he slept all night last night. But Tucker is still broken out in welts. So he slept with me last night - and he slept most of the night, but woke this morning around 3:30am saying he was cold and itchy. I have him sleeping on a heating pad (on low) to see if that will warm him up a bit. But since getting up at 4am is now my new habit, I went ahead and got up (although my co-workers are thinking I'm insane for sending emails at 5am). It's now 5:30am and Tucker's wanting to get up. (NO WAY - still dark outside and Dad just started his 2nd cup of coffee.)
Honestly, I want rest. Becky wants rest. We want rest for Cade, Tucker, Titus. Nana needs rest. Last night at our Bible Fellowship Group, Curtis R was teaching on Jeremiah 20 and using the examples of when Elijah, David, Moses, and Jonah. All of them were tired of grind and needed rest. And as I reflected on those verses, it was good to know that the rest comes, but you have to finish the task first. Elijah didn't take a coffee break while fighting the prophets of Baal. Moses didn't take a vacation from the whiny Israelites on the long journey. They all came to period of rest after they finished the task.
And, that's so hard to grasp in a world where when the going gets rough, people would rather abandon than persevere. Or, they take the opposite extreme and try to resolve it all in their own power. It's learning to stand firm, be still, and know that God has not abandoned me.
Do not be afraid. Stand firm and you will see the deliverance the Lord will bring to you today. . . The Lord will fight for you; you need only to be still. Exodus 20:13-14
Lord, I am so tired, my wife is tired, and my kids are sick. I feel helpless. I want answers, resolutions and medicines that will cure my boys. I want a meal with all my kids around the table. I want my wife back in my bed and not 30 miles away sleeping in a recliner. I want to be my best at work and not limping by with the help of co-workers because I'm not thinking straight. Lord, I'm not mad, I'm not angry, and frankly, too scared to even ask "why?", I'm just tired. But enough about what I want. Lord, what do you want? what do you want of me in this situation? Show me the way, put me in the place, remind me to be still.
And Lord, thank you for my family. Thank you for a wife who never complains. Thank you for Aidan and Noah who are showing incredible maturity during this time. Thank you for Nana who is wearing herself out taking care of the boys 12 hours a day. Thank for friends who have brought meals. Thank you for Titus who has taken me to depths and heights I never knew. Thank you for Tucker and Cade who love me unconditionally. Thank you . . . Amen.
P.S - One more thing, Lord. Thank you for coffee! Good, old-fashioned Folgers Dark Columbian hot coffee.
They were scheduled to do a sleep study last night, but when I last talked with Becky, they still had not come to set it up - and Titus had just fallen asleep.
Cade is starting to feel better - he slept all night last night. But Tucker is still broken out in welts. So he slept with me last night - and he slept most of the night, but woke this morning around 3:30am saying he was cold and itchy. I have him sleeping on a heating pad (on low) to see if that will warm him up a bit. But since getting up at 4am is now my new habit, I went ahead and got up (although my co-workers are thinking I'm insane for sending emails at 5am). It's now 5:30am and Tucker's wanting to get up. (NO WAY - still dark outside and Dad just started his 2nd cup of coffee.)
Honestly, I want rest. Becky wants rest. We want rest for Cade, Tucker, Titus. Nana needs rest. Last night at our Bible Fellowship Group, Curtis R was teaching on Jeremiah 20 and using the examples of when Elijah, David, Moses, and Jonah. All of them were tired of grind and needed rest. And as I reflected on those verses, it was good to know that the rest comes, but you have to finish the task first. Elijah didn't take a coffee break while fighting the prophets of Baal. Moses didn't take a vacation from the whiny Israelites on the long journey. They all came to period of rest after they finished the task.
And, that's so hard to grasp in a world where when the going gets rough, people would rather abandon than persevere. Or, they take the opposite extreme and try to resolve it all in their own power. It's learning to stand firm, be still, and know that God has not abandoned me.
Do not be afraid. Stand firm and you will see the deliverance the Lord will bring to you today. . . The Lord will fight for you; you need only to be still. Exodus 20:13-14
Lord, I am so tired, my wife is tired, and my kids are sick. I feel helpless. I want answers, resolutions and medicines that will cure my boys. I want a meal with all my kids around the table. I want my wife back in my bed and not 30 miles away sleeping in a recliner. I want to be my best at work and not limping by with the help of co-workers because I'm not thinking straight. Lord, I'm not mad, I'm not angry, and frankly, too scared to even ask "why?", I'm just tired. But enough about what I want. Lord, what do you want? what do you want of me in this situation? Show me the way, put me in the place, remind me to be still.
And Lord, thank you for my family. Thank you for a wife who never complains. Thank you for Aidan and Noah who are showing incredible maturity during this time. Thank you for Nana who is wearing herself out taking care of the boys 12 hours a day. Thank for friends who have brought meals. Thank you for Titus who has taken me to depths and heights I never knew. Thank you for Tucker and Cade who love me unconditionally. Thank you . . . Amen.
P.S - One more thing, Lord. Thank you for coffee! Good, old-fashioned Folgers Dark Columbian hot coffee.
Wednesday, February 18, 2009
Where's Moses?
Cade now has the flu (type a) and an ear infection, Tucker is broken out in welts, Titus is still having some apnea issues, and Becky/I are exhausted.
Is there a plague that I missed in Exodus? Am I living in Egypt? Where's Moses?
Cade is now on Day 3 of the flu but we found out yesterday he also has an ear infection. Poor guy - he's just miserable. And the ear infection is affecting his hearing a bit (Cade is deaf in one ear and the infection is in the other), so he's frustrated. He is on a host of meds now.
Tucker is basically over the flu, but now has a welts on his back and stomach. It's not the same rash that Titus had and it looks like Benadryl is managing it.
They completed the 24 hour EEG test on Titus yesterday - and they didn't really detect/find anything out. They did state that he is NOT having seizures. They also did an upper GI test to see if he might be refluxing enough to affect things. Titus had a nissen fundoplication surgery last year. This is to prevent reflux, but sometimes if it's too loose, reflux can still happen. But, the results came back that he is NOT refluxing.
Today, they will start a 4 channel sleep study starting at 5pm. They just aren't sure why he is having these issues. On the good side, his rash is now gone and he's happy/content - and cutting another tooth on the bottom. So, it looks like 2 teeth coming in on top and one more on the bottom. He was full of smiles last night when I was with him.
The PICU is full. And as Becky looks around, there are some really sick kids up there. Becky has had the chance to talk and pray with some of the parents in the hall. We so remember the first time we walked in there and being asked to wait in the hall as a swarm of nurses and doctors rush in to work on your child. It is a totally helpless feeling. And I am so thankful that I have a wife who will go out and talk to them, give them a hug, and pray for them. She is such an example to me that ministry never stops even when we are suffering ourselves.
Of course, these days, the PICU is like a 2nd home to us. We have such a comfort level with the doctors, nurses, and respiratory therapists. We tell them all the time we appreciate them, but I want to do it again. We truly thank the Lord for each of you and the care you provide for Titus and for us.
Last night after we got the call about Tucker's welts and Cade's ear infection and I was about to leave the hospital, I told Becky "this too shall pass". And as I drove home, my prayer was "let my children go - they are being plagued by sickness and suffering and it's gone on and on. So teach me what I need to learn, break me down and restore me back and let my children go."
The road is long, the road is rough, but we can't stop the journey since we aren't there yet. There will be an oasis in the desert, and a time to rest from the journey, but we aren't there yet.
Pressing on,
Paul
Is there a plague that I missed in Exodus? Am I living in Egypt? Where's Moses?
Cade is now on Day 3 of the flu but we found out yesterday he also has an ear infection. Poor guy - he's just miserable. And the ear infection is affecting his hearing a bit (Cade is deaf in one ear and the infection is in the other), so he's frustrated. He is on a host of meds now.
Tucker is basically over the flu, but now has a welts on his back and stomach. It's not the same rash that Titus had and it looks like Benadryl is managing it.
They completed the 24 hour EEG test on Titus yesterday - and they didn't really detect/find anything out. They did state that he is NOT having seizures. They also did an upper GI test to see if he might be refluxing enough to affect things. Titus had a nissen fundoplication surgery last year. This is to prevent reflux, but sometimes if it's too loose, reflux can still happen. But, the results came back that he is NOT refluxing.
Today, they will start a 4 channel sleep study starting at 5pm. They just aren't sure why he is having these issues. On the good side, his rash is now gone and he's happy/content - and cutting another tooth on the bottom. So, it looks like 2 teeth coming in on top and one more on the bottom. He was full of smiles last night when I was with him.
The PICU is full. And as Becky looks around, there are some really sick kids up there. Becky has had the chance to talk and pray with some of the parents in the hall. We so remember the first time we walked in there and being asked to wait in the hall as a swarm of nurses and doctors rush in to work on your child. It is a totally helpless feeling. And I am so thankful that I have a wife who will go out and talk to them, give them a hug, and pray for them. She is such an example to me that ministry never stops even when we are suffering ourselves.
Of course, these days, the PICU is like a 2nd home to us. We have such a comfort level with the doctors, nurses, and respiratory therapists. We tell them all the time we appreciate them, but I want to do it again. We truly thank the Lord for each of you and the care you provide for Titus and for us.
Last night after we got the call about Tucker's welts and Cade's ear infection and I was about to leave the hospital, I told Becky "this too shall pass". And as I drove home, my prayer was "let my children go - they are being plagued by sickness and suffering and it's gone on and on. So teach me what I need to learn, break me down and restore me back and let my children go."
The road is long, the road is rough, but we can't stop the journey since we aren't there yet. There will be an oasis in the desert, and a time to rest from the journey, but we aren't there yet.
Pressing on,
Paul
Monday, February 16, 2009
Monday, Monday
This morning, the doctors decided to do an MRI on Titus - which we quickly vetoed since he can't have an MRI with his cochlear implant (it would suck the magnetic implant right out of his skull). Instead, they settled on a CT Scan. Again, they are searching for answers by ruling out other things.
When Titus was a few days old, he had a CT Scan that showed a cyst at the base of his brain. This is called a Dandy-Walker Variant. When Titus was 10 months old, another CT Scan and a MRI was done. At that time, they could not detect the cyst. Today, they could see the cyst again. It really doesn't change anything - but one of the effects of Dandy-Walker variant is delayed motor skills - which Titus has.
Dr. Gelfand, the pulmonologist, has turned down his oxygen levels to see how he would do - and as expected, he's doing great (he waits till he comes home to have sinking spells). Even during his naps today, his SATs were high as his oxygen was very low. We pray that continues. We have grown accustomed to keeping him oxygen, but it will be a glorious day when he is off oxygen altogether.
They also ordered a 24-hour EEG test which started around 3pm today. Titus has about 20+ nodes glued all over his head as he is hooked up to the machine. Becky stated that he has done quite well with it today.
His fever is gone, his rash is getting better, his blood levels are still tricky though. His sodium is low, so they are giving him sodium chloride with his feeds - again, no real explanation why his blood levels are acting up though.
So, maybe tomorrow, maybe Wednesday, and Thursday at the latest is what we are praying for.
Also, one more prayer request. Months ago we applied for the HIPPS program. It's a state-wide program that will assist with insurance premiums. I have called every few weeks checking on the status since we haven't heard anything (but were told it would only take 2 weeks to be approved). Today they told me to call back on Friday. It would be great if we were approved for this program and would appreciate your prayers on that.
Cade still has the flu and has a hacky cough. He goes in cycles of feeling ok to play games to feeling tired. So tonight, while he was feeling good, all us boys played a rousing game of Uno. Tucker and Cade are hysterical playing Uno and it makes them feel like one of the big boys.
Thank you for the prayers. We know it's your prayers on days like today that carry us through.
When Titus was a few days old, he had a CT Scan that showed a cyst at the base of his brain. This is called a Dandy-Walker Variant. When Titus was 10 months old, another CT Scan and a MRI was done. At that time, they could not detect the cyst. Today, they could see the cyst again. It really doesn't change anything - but one of the effects of Dandy-Walker variant is delayed motor skills - which Titus has.
Dr. Gelfand, the pulmonologist, has turned down his oxygen levels to see how he would do - and as expected, he's doing great (he waits till he comes home to have sinking spells). Even during his naps today, his SATs were high as his oxygen was very low. We pray that continues. We have grown accustomed to keeping him oxygen, but it will be a glorious day when he is off oxygen altogether.
They also ordered a 24-hour EEG test which started around 3pm today. Titus has about 20+ nodes glued all over his head as he is hooked up to the machine. Becky stated that he has done quite well with it today.
His fever is gone, his rash is getting better, his blood levels are still tricky though. His sodium is low, so they are giving him sodium chloride with his feeds - again, no real explanation why his blood levels are acting up though.
So, maybe tomorrow, maybe Wednesday, and Thursday at the latest is what we are praying for.
Also, one more prayer request. Months ago we applied for the HIPPS program. It's a state-wide program that will assist with insurance premiums. I have called every few weeks checking on the status since we haven't heard anything (but were told it would only take 2 weeks to be approved). Today they told me to call back on Friday. It would be great if we were approved for this program and would appreciate your prayers on that.
Cade still has the flu and has a hacky cough. He goes in cycles of feeling ok to play games to feeling tired. So tonight, while he was feeling good, all us boys played a rousing game of Uno. Tucker and Cade are hysterical playing Uno and it makes them feel like one of the big boys.
Thank you for the prayers. We know it's your prayers on days like today that carry us through.
Sunday, February 15, 2009
Anomoly
Titus had a good day in the PICU. He's quite the anomoly to the doctors - they really aren't quite sure what to do. He still has the rash although it's not as pronounced. His fever is pretty much gone - not like the several days of 100 and 102. And, he's only had 2 apnea issues while napping each day. His CRP levels and white blood count are coming down (but not quite to normal range). But he took a nap in my lap this afternoon and was almost back to his normal self today.
They are going to conduct a sleep test tomorrow. We've had one done before - but this will be 24 hour test - so we know at this point that Titus will at least be there till Tuesday. And, along with everything else, he's teething. It looks like he has more teeth on top coming in (he's definitely making up for lost time in the teeth department).
So my request tonight is for wisdom and discernment for the doctors. Although Titus seems to be recovering, they just aren't sure yet if it's a viral infection or bacterial infection, what caused it and truly what to do about it.
And, we had one more thing happen today - frankly, I'm not sure if I'm steamed, disgusted, or sympathetic about it.
I brought lunch up after I went to church for Becky and I. The waiting room today was full as Becky and I sat at one of the small tables to eat. One of the men waiting struck up a conversation with us while he was watching over his girls. Another man kept going to the doors and peeking through the windows. He kept trying the door handle. Since the PICU is a locked unit, you have to be buzzed in or go in when the doors are open when someone comes out. Since we've spent so much time there and are quite comfortable with all the protocol, Becky mentioned if he wanted in to just hit the buzzer and they would let him in.
His response was - "no, just looking for my wife. Why would I want to go back there - it's depressing." And then he walked off.
Depressing.
Part of me wanted to pull him aside and tell him a little about "depressing", but I chose to keep my mouth shut. But the more I thought about it and in concert with the sermon I heard this morning, I realized that is the worlds response. Sick kids are "depressing". Why would I want to interupt my perfect world to be around that. As long as things are going my way, then why should I care about anyone else.
Well, here's why.
Because we live in a world that doesn't value human life, I find it all the more important to say, my child is worth it.
Because we live in a world that would rather have convenience over sacrifice, I find it important to give up my selfishness to care for my boys.
Because we live in a world that would rather live for themselves than obey, I find it important to say, I will obey the voice of my God saying "Love one another".
Because we live in world that would rather spend $4 on a cup a coffee, but won't give a dime to the One who provides it all, I choose to give my money and my time to ministry.
Because we live in a world that takes even a simple breath for example, I weep over watching my own son struggle to breathe and I realize, nothing - NOTHING should be taken for granted.
Because I live in world that God loves so much that he sent his only son to die for my sins so that I could spend forever with him in a glorious place with no pain, no sorrow, and no disease.
So Mister, I'm sorry you had to spend your Sunday afternoon in PICU waiting room where you are unable to deal with going back to visit a sick child because it's depressing. I pray you are never in that situation where people won't tend to you because it may depress them. And I pray your eyes will be open to see beyond yourself to world that hurts.
They are going to conduct a sleep test tomorrow. We've had one done before - but this will be 24 hour test - so we know at this point that Titus will at least be there till Tuesday. And, along with everything else, he's teething. It looks like he has more teeth on top coming in (he's definitely making up for lost time in the teeth department).
So my request tonight is for wisdom and discernment for the doctors. Although Titus seems to be recovering, they just aren't sure yet if it's a viral infection or bacterial infection, what caused it and truly what to do about it.
And, we had one more thing happen today - frankly, I'm not sure if I'm steamed, disgusted, or sympathetic about it.
I brought lunch up after I went to church for Becky and I. The waiting room today was full as Becky and I sat at one of the small tables to eat. One of the men waiting struck up a conversation with us while he was watching over his girls. Another man kept going to the doors and peeking through the windows. He kept trying the door handle. Since the PICU is a locked unit, you have to be buzzed in or go in when the doors are open when someone comes out. Since we've spent so much time there and are quite comfortable with all the protocol, Becky mentioned if he wanted in to just hit the buzzer and they would let him in.
His response was - "no, just looking for my wife. Why would I want to go back there - it's depressing." And then he walked off.
Depressing.
Part of me wanted to pull him aside and tell him a little about "depressing", but I chose to keep my mouth shut. But the more I thought about it and in concert with the sermon I heard this morning, I realized that is the worlds response. Sick kids are "depressing". Why would I want to interupt my perfect world to be around that. As long as things are going my way, then why should I care about anyone else.
Well, here's why.
Because we live in a world that doesn't value human life, I find it all the more important to say, my child is worth it.
Because we live in a world that would rather have convenience over sacrifice, I find it important to give up my selfishness to care for my boys.
Because we live in a world that would rather live for themselves than obey, I find it important to say, I will obey the voice of my God saying "Love one another".
Because we live in world that would rather spend $4 on a cup a coffee, but won't give a dime to the One who provides it all, I choose to give my money and my time to ministry.
Because we live in a world that takes even a simple breath for example, I weep over watching my own son struggle to breathe and I realize, nothing - NOTHING should be taken for granted.
Because I live in world that God loves so much that he sent his only son to die for my sins so that I could spend forever with him in a glorious place with no pain, no sorrow, and no disease.
So Mister, I'm sorry you had to spend your Sunday afternoon in PICU waiting room where you are unable to deal with going back to visit a sick child because it's depressing. I pray you are never in that situation where people won't tend to you because it may depress them. And I pray your eyes will be open to see beyond yourself to world that hurts.
Saturday, February 14, 2009
Back in PICU
Titus was moved out of ER and into the PICU at 3pm today. He's actually had a good day, but since his labs are showing some of his numbers are elevated, the doctors believe "something is cooking" whether it be viral or bacterial. They have started him on a wide-spread antibiotic until cultures come back from the lab. His rash is still there, but his fever is gone. And, he's slept this afternoon without any apnea issues. We actually had him up and doing some exercises and he was a happy camper.
There's a possibility they will come home tomorrow, and then again, as we have learned, we'll find out tomorrow.
Aidan and Noah went with friends to their lake house for the weekend. And Tucker and Cade are at Nana's. Cade is now running fever.
Becky and I were to co-speak tomorrow morning on marriage - but now it looks like they will just get me. Oh joy! I'm not as good without my better half.
I'll update more tomorrow - Happy Valentines Day!
There's a possibility they will come home tomorrow, and then again, as we have learned, we'll find out tomorrow.
Aidan and Noah went with friends to their lake house for the weekend. And Tucker and Cade are at Nana's. Cade is now running fever.
Becky and I were to co-speak tomorrow morning on marriage - but now it looks like they will just get me. Oh joy! I'm not as good without my better half.
I'll update more tomorrow - Happy Valentines Day!
In the ER
Becky and her mom were taken back to a room in the ER almost immediately upon arrival. The doctors are a bit baffled and like our pediatrician stated, believe the rash is viral. Titus fever has gone down, but his sodium and potassium levels are low. As usual, he's an anomoly.
The hospital was working to get him into the PICU last night, but the PICU is full and even the Peds ward was full, so Becky and Titus spent the night in the ER room. Becky had a bed and Titus slept in his bouncy seat.
This is one of those days when you realize how crazy our life is - one week, everyone is home and healthy - and the next week - Tucker has the flu and is staying at Nana's, Titus has this weird viral fever/rash and is back at the hospital, Cade keeps telling me he doesn't feel good (but I think it's so he can go back to Nana's since he's fine at the moment).
Your prayers are appreciated.
The hospital was working to get him into the PICU last night, but the PICU is full and even the Peds ward was full, so Becky and Titus spent the night in the ER room. Becky had a bed and Titus slept in his bouncy seat.
This is one of those days when you realize how crazy our life is - one week, everyone is home and healthy - and the next week - Tucker has the flu and is staying at Nana's, Titus has this weird viral fever/rash and is back at the hospital, Cade keeps telling me he doesn't feel good (but I think it's so he can go back to Nana's since he's fine at the moment).
Your prayers are appreciated.
Friday, February 13, 2009
Off to the Hospital
Titus has been having apnea issues all day. He had one bad episode last night, but brought his breathing back up and was fine the rest of the night. But he's had 2 this morning and 2 this afternoon, and after consulting with the doctors, they think it best he come in and spend the night for observation.
During an episode, his oxygen saturations levels drop due to shallow breathing. This means he is not getting enough oxygen in his blood stream. If low levels are sustained, this is incredibly dangerous. Usually, we can wake Titus up and he recovers quickly. But last night took a few minutes. And, Titus is still on oxygen, so these are pretty serious episodes when they occur.
It very well could be due to the fever and rash and combination of meds he is on, but all we know right now is that Beck and her mom are headed back to Medical City.
Your prayers will be appreciated.
During an episode, his oxygen saturations levels drop due to shallow breathing. This means he is not getting enough oxygen in his blood stream. If low levels are sustained, this is incredibly dangerous. Usually, we can wake Titus up and he recovers quickly. But last night took a few minutes. And, Titus is still on oxygen, so these are pretty serious episodes when they occur.
It very well could be due to the fever and rash and combination of meds he is on, but all we know right now is that Beck and her mom are headed back to Medical City.
Your prayers will be appreciated.
Flu, Fever, and a Rash
Tucker has the flu. He's been quarantined at Nana's house for the last 3 days, but the doctor confirmed yesterday he's got the flu.
And Titus has a fever and a rash. The doctor thinks it's just something viral but the poor little guy is miserable. He finally settled last night and slept.
And Dad has now been moved to Zale-Lipshy rehab. They are enjoying having a private room, chairs in the room for guests to sit in, and a place where mom can also nap. They are saying now that Dad may be coming home in 2-3 weeks to rehab at home (in a wheelchair) for several weeks and then back to rehab to work on walking.
And in the middle of all this, we had Becky's GEMS on Tuesday night with about 30 people (and a major thunderstorm/tornado raging outside), Becky finished her kitchen drapes (which look awesome), and Paul has been tracking down missing equipment all over the country (when did that become HR's job?)
And Titus has a fever and a rash. The doctor thinks it's just something viral but the poor little guy is miserable. He finally settled last night and slept.
And Dad has now been moved to Zale-Lipshy rehab. They are enjoying having a private room, chairs in the room for guests to sit in, and a place where mom can also nap. They are saying now that Dad may be coming home in 2-3 weeks to rehab at home (in a wheelchair) for several weeks and then back to rehab to work on walking.
And in the middle of all this, we had Becky's GEMS on Tuesday night with about 30 people (and a major thunderstorm/tornado raging outside), Becky finished her kitchen drapes (which look awesome), and Paul has been tracking down missing equipment all over the country (when did that become HR's job?)
Monday, February 9, 2009
Life is Precious
As I sit here, Titus is crying. He's been pretty cranky for the last hour. It's just one of the side effects of withdrawals from the pain meds along with the low fever. The medicine we are giving him to help with the withdrawals will calm his nerves in a few minutes, but it just so uncharacteristic of him to cry. He's never really been a cranky baby.
But as I stated a year ago, the sound of his cry is still precious to me. I will always remember the day he was born waiting for him to take that breath and cry, and it never came. In fact, he didn't cry for weeks after he was born.
And, while he is crying, Aidan is singing while listening to Chris Tomlin on his MP3 player. I think he forgets with his ear buds in that we can hear him. Again, another precious sound to hear my oldest singing praise songs.
And, then there's Tucker and Cade who I put to bed over an hour ago, and they are giggling/talking in their bed. They are so funny to listen to and hear their little conversations about life with each other. But boys, I told you once to be quiet!
I know all this noise would drive some people crazy, and believe me, there are days it seems out of control, but tonight, it is a precious noise.
You see, Becky just told me some sad news. One of the families in the PICU this past week that we had met lost their little son last Saturday. It was their 3rd child, an unexpected blessing. They are from out-of-town and had brought their son back from heart surgery, but complications arose after the surgery and he passed away. My heart is breaking for them. As much time as we have spent in the NICU and PICU, and as much as we know that it happens, this is the first time we knew one of the families.
So, tonight, I count my blessings. My boys are all home, all in bed (yet, not all quiet), but all safe and sound tonight. And I realize, life is precious. It's slightly ironic - it was a hard day at work filled with difficult and at times, very critical conversations. I came home all tensed up about it, but now, that all seems so insignificant. And my mind goes to Psalm 121
I lift up my eyes to the hills— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber.
My God is not asleep, He knows, He comes, He helps, He controls, He watches.
Becky was up at the hospital today for a checkup with Titus, so she ran up to visit the other family we were close with. She got to meet their son Ethan who is recovering from staph infection and open heart surgery. It was the first time Becky got to meet and talk with Ethan. He was sitting up in a chair. God is doing a great work of healing in his body and I wanted to provide you an update since I had requested prayer for him last week.
And, last quick update is on Dad. I got to visit with him on Saturday. He is off of oxygen, the neck brace is gone since the x-rays show the fracture in his neck is healed, and they have been getting Dad to sit up in bed. Today, they got him in a wheelchair and he spent 35 minutes wheeling around. Dad will have to spend up to 3 hours at a time in the wheelchair before they will send him to rehab at Zale-Lipshy. Now that Dad has a goal, I'm sure he will try to get there as fast as he can.
Dad, I'm proud of you - and I know you are wheeling as fast as you can to get out of there! That day is coming.
Well, Titus has finally gone to sleep. And Vanessa (his incredible angel of a night nurse) will be here any minute to watch over him tonight. I really need to head to bed, but need to finish my notes for tomorrow night. Becky has asked me to speak to her GEMS tomorrow night (the moms always bring the dads for February for a Valentine's party). My topic is "Planned Parenthood: What's your real life plan for raising your children?"
Sunday, February 8, 2009
My Story
Becky and I had the opportunity this week to be filmed for a testimony shown as part of the worship service this last week. We had a great time filming and Mark P basically just turned on the camera and let us talk (we gave really long answers).
We thought you might enjoy this - it's also out there on YouTube.
We thought you might enjoy this - it's also out there on YouTube.
Friday, February 6, 2009
One Month Down
It was a month ago that Dad has his accident. A lot has happened in the last few days. When they did surgery last week to repair his pelvis from where he ripped his pin out, they anticipated Dad having to spend the next 6 weeks flat on his back.
Mom and Patti had been looking for a rehab place during that time, but it's hard to accept a patient in rehab, when there's not much you can rehab them to do since they are lying flat on their back.
Yesterday, after numerous consultations, the doctor decided to remove the pins - and did so immediately in Dad's room. Today, they had Dad sitting up on the edge of his bed. Their goal is to get him to sitting in a wheelchair. They have also removed the neck brace he has been wearing. I think Dad feels free for the first time in weeks. As long as he doesn't put any weight on his feet, he should be fine in a wheelchair as he recovers - and they should be able to get him in a rehab facility.
Dad still has a long way to go, but it's great to see progress. Please continue to keep Dad and Mom in your prayers.
Mom and Patti had been looking for a rehab place during that time, but it's hard to accept a patient in rehab, when there's not much you can rehab them to do since they are lying flat on their back.
Yesterday, after numerous consultations, the doctor decided to remove the pins - and did so immediately in Dad's room. Today, they had Dad sitting up on the edge of his bed. Their goal is to get him to sitting in a wheelchair. They have also removed the neck brace he has been wearing. I think Dad feels free for the first time in weeks. As long as he doesn't put any weight on his feet, he should be fine in a wheelchair as he recovers - and they should be able to get him in a rehab facility.
Dad still has a long way to go, but it's great to see progress. Please continue to keep Dad and Mom in your prayers.
Peace
People constantly ask Becky and I how we maintain through all of this. Between therapy visits 4 times a week, doctor's visits (some time several in a week), sleepless nights, threat of infections, and the list goes on.
I honestly know it's the peace that passes understanding and the incredible grace of God, but I am finding that a hard concept to explain to people. They either think I'm crazy or not lucid from the lack of sleep. But I do serve a God who does crazy things like tumbling down walls, dividing seas, raising dead people, making donkey's talk. So, I have some adversity - who am I to question God's plan?
I just know that when all else around me seems to be falling apart, I am at peace (and a little tired). And peace is such a better place to be than worried, sick, scared, fearful.
May you be in Peace today
I honestly know it's the peace that passes understanding and the incredible grace of God, but I am finding that a hard concept to explain to people. They either think I'm crazy or not lucid from the lack of sleep. But I do serve a God who does crazy things like tumbling down walls, dividing seas, raising dead people, making donkey's talk. So, I have some adversity - who am I to question God's plan?
I just know that when all else around me seems to be falling apart, I am at peace (and a little tired). And peace is such a better place to be than worried, sick, scared, fearful.
May you be in Peace today
Wednesday, February 4, 2009
Withdrawals
Something's up with Titus - and it looks like he's still withdrawing from pain meds and the methadone.
He started running a slight fever yesterday. Becky took him to the doctor just to be sure and they sent her to the Lab to draw blood. They weren't successful drawing blood (Becky gives them two tries and then that's it). When we got home, he was just jittery and would not fall to sleep. He didn't sleep at all last night - I got up every hour to check on him. He was still and quiet, but his head and eyes were just roaming.
We were anxiously awaiting Lisa (our daytime nurse) to arrive. From her observation (and she has been a special needs pediatric nurse for years - and we love her dearly), she thought he might still be withdrawing. So, they took a trip back to the doctors, talked with the PICU staff and have prescribed a remedy. Poor little guy - he's just jittery and needs to sleep.
So, your prayers today would be appreciated.
He started running a slight fever yesterday. Becky took him to the doctor just to be sure and they sent her to the Lab to draw blood. They weren't successful drawing blood (Becky gives them two tries and then that's it). When we got home, he was just jittery and would not fall to sleep. He didn't sleep at all last night - I got up every hour to check on him. He was still and quiet, but his head and eyes were just roaming.
We were anxiously awaiting Lisa (our daytime nurse) to arrive. From her observation (and she has been a special needs pediatric nurse for years - and we love her dearly), she thought he might still be withdrawing. So, they took a trip back to the doctors, talked with the PICU staff and have prescribed a remedy. Poor little guy - he's just jittery and needs to sleep.
So, your prayers today would be appreciated.
Monday, February 2, 2009
Going Home
I just got off the phone with Becky and Titus is free to go home. Thank you Lord!
And, I just got off the phone with Mom. Due to the surgery this week to correct the damage Dad did when he pulled his pins out, they had to re-attach the pin to a different bone. This is what is holding his pelvis together so the bones will heal. Dad had been in a back brace to also assist the fractures in his spine. But, since they have moved where the pin is located, they are not able to re-configure the back brace for dad.
Bottom Line is . . . Dad will have to stay flat on his back for the next 6 weeks. And more than likely, will be at a rehab center attached to Parkland (It may be in Zale-Lipshy, but I'm not certain yet.) Dad has been very awake, alert, and lucid and understands and agrees the best thing for him is to stay right there. While this isn't the news they were expecting to hear today, please pray for Mom and Dad while they make these decisions. 6 weeks can go by very slowly when you are flat on your back.
And, I just got off the phone with Mom. Due to the surgery this week to correct the damage Dad did when he pulled his pins out, they had to re-attach the pin to a different bone. This is what is holding his pelvis together so the bones will heal. Dad had been in a back brace to also assist the fractures in his spine. But, since they have moved where the pin is located, they are not able to re-configure the back brace for dad.
Bottom Line is . . . Dad will have to stay flat on his back for the next 6 weeks. And more than likely, will be at a rehab center attached to Parkland (It may be in Zale-Lipshy, but I'm not certain yet.) Dad has been very awake, alert, and lucid and understands and agrees the best thing for him is to stay right there. While this isn't the news they were expecting to hear today, please pray for Mom and Dad while they make these decisions. 6 weeks can go by very slowly when you are flat on your back.
Waiting on the Dr
Becky and Titus are still waiting on the doctor to release them. The radiologist has supplied his report on the X-Ray, so we are just waiting on the Dr. Gelfand, pulmonologist, to review and release.
So, hopefully soon, but we are so waiting to get him home.
Will update as soon as I know.
So, hopefully soon, but we are so waiting to get him home.
Will update as soon as I know.
Sunday, February 1, 2009
Out of PICU
This morning, the doctor told me to pack our bags. I asked her to "go home" or "go to the Peds Floor". She wasn't sure yet, and for awhile there, it looked like we might go home.
But, after a few more consultations, it was determined to be "better safe than sorry" and keep Titus one more day in the hospital. So, we moved to the 6th floor of Medical City - the Pediatric Floor. If all goes well, he should go home tomorrow, but they will make that decision on Monday morning.
Titus had a good night - he fell asleep yesterday around 1pm, woke for about an hour at 6pm, then went back to sleep and slept till 9am Sunday morning. He needed his sleep. And, they didn't have to give him any methadone or adavant during the time. He's been pretty happy all day.
Becky and I and the boys so appreciate your prayers over the last 2 weeks for Titus. And, I pray that tomorrow, my post will show pics of Titus back at home with the boys.
But, after a few more consultations, it was determined to be "better safe than sorry" and keep Titus one more day in the hospital. So, we moved to the 6th floor of Medical City - the Pediatric Floor. If all goes well, he should go home tomorrow, but they will make that decision on Monday morning.
Titus had a good night - he fell asleep yesterday around 1pm, woke for about an hour at 6pm, then went back to sleep and slept till 9am Sunday morning. He needed his sleep. And, they didn't have to give him any methadone or adavant during the time. He's been pretty happy all day.
Becky and I and the boys so appreciate your prayers over the last 2 weeks for Titus. And, I pray that tomorrow, my post will show pics of Titus back at home with the boys.
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