Thursday, February 26, 2009
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.
Tuesday, February 24, 2009
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).
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.
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
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
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. . .
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
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
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.
Monday, February 16, 2009
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
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.
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
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!
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
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.
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
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
We thought you might enjoy this - it's also out there on YouTube.
Friday, February 6, 2009
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.
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
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
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.
So, hopefully soon, but we are so waiting to get him home.
Will update as soon as I know.
Sunday, February 1, 2009
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.