Tuesday, February 19, 2008
Tucker and Cade are over the flu and came home today. I am better, but have quarantined myself away from Titus until I know I'm not sick anymore. I wear a mask inside the house and am sleeping upstairs. Quita won't even sleep with me.
This still leaves the majority of the burden for caring for Titus on Becky's shoulders. She is so glad to be home and back in her own bed, but still feeds Titus every 3 hours and gives him his nebulizzer treatments every 3 hours. So, she's generally up for an hour, then tries to get some sleep in between the next feeding. She has also re-scheduled all of Titus' doctors appointments for the 3rd time and still finds time to love on all the boys and me. I've said it before but will repeat - but Becky D is the MOST AMAZING, AWESOME, PHENOMENAL, FANTASTICAL wife, mother, sister, daughter, and friend there is. She is filled with FABULOSITY!!!! And, I love her dearly - she still takes my breath away.
Titus has 3 doctor's appointments this week: one with the pediatrician as a follow-up, one with the pediatric pulmonologist, and our initial meeting at Scottish Rite. The pulmonologist will be checking his lungs and airway. Titus' airway is still S-shaped - and can still be compromised easily. The jaw distraction surgery has improved his ability to breathe dramatically, but the since it's S-shaped and after the RSV, he still has some struggles.
Scottish Rite will be examining and taking a base-line for Titus. As a reminder, Titus has a hemi-vertebrae at the base of his spine. This can cause curvature of the spine as he grows. By tracking a baseline and observing as he grows, they will be able to determine the best ways to treat for this. Titus right foot - which was almost club when born - has turned back to almost normal position. They will also be checking that to see if any casting needs to be done.
Over the next few weeks we have more appointments with the audiologists to discuss the flight plan for his deafness. And, we also have an appointment with the pediatric opthamalogist. The doctors have mentioned some concerns about his eyes, but there is no diagnosis yet. We do know all the "parts" are there and we know he responds to light/dark, but they will evaluate vision concerns. We will have appointments with the occupational therapists to work on his sucking/swallowing exercises so we can move past the g-tube, along with other therapy to address the delays of spending weeks in the hospital. We are also working on bumping up the amount of his feedings. When Titus left the PICU, he weighed over 9lbs 3 oz, but lost down to 8lbs 6 oz when they stopped the continuous feeds and sedation. He's burning up calories like crazy and we need to fatten him back up. He's up to 78cc every 3 hours, but we are trying to get to 90cc.
All of the above are prayer requests. Managing the doctors appointments and therapy along with caring for Titus and the boys make for very busy days and nights. But God is good, God has a plan, and God is in control.
Sunday, February 17, 2008
Titus is doing good. He is back to full feeds (70cc) every 3 hours, he is off all methadone and antibiotics, and for the last 2 days has been off oxygen. He was desatted a bit yesterday, so they put him back on oxygen through the night to help him out, but it's coming back off today. He continues to run an erratic low-grade fever which is stumping the doctors. It's not high and goes back down after a few hours.
As it stands today, he MAY come home tomorrow. But we will have to see how today goes and how the doctor feels about things in the morning.
The other factor in the equation is that Tucker has had the flu this week and Cade has shown symptoms. We have all been on Tamiflu since Thursday. Tucker and Cade have been staying at my parents or Becky's parents for the last several days to keep them away from the house, Aidan and Noah, and me. I am also exhibiting some symptoms, but am taking my Tamiflu and spending the weekend in bed (which is not much help to Becky).
In my drives back and forth from the hospital this week, my thoughts have drifted to separation. Becky and I have talked and we are tired of being apart from each other, from our boys, from our home. Our marriage and our family was not designed to be in 3 different places. Becky and I really guard our family time together and work hard to make sure we have meals together as a family, have regular family time, and focus on our family identity. As a result, all of us (boys included) are struggling with the being apart from each other.
Separation hurts - I don't like sleeping in an empty bed - I miss my wife next to me (and she says she misses my snoring). Separation is hard, separation just plain old stinks - especially when there is nothing you can do about it but endure. We know it's temporary, but right now, that doesn;t soothe over the fact that we long to be back together again under one roof, sharing our meals together, hearing our boys chatter and laugh, tucking them in at night, getting constant hugs and kisses.
And as I thought about it, I wondered, does my separation from God bother him? When I ignore him, don't spend time with him, try to do everything myself instead of rely upon his ultimate power - does my so-called "independence" hurt God? Because, that's not what I was designed for - God didn't create me to live my life for myself - but to live my life for Him. God didn't design marriage to be 2 people living for themselves, but to be one body. God didn't design the family to be separate bodies, but to be interdependent on each other - and Becky and I to be parents who lead/discipline/train/grow our children in the ways of the Lord.
All of this realization this week made me realize that as much as I miss my wife and family, do I miss my time with God more? Sheepishly, I realized I have been so busy with activities of self, that I've separated myself from fellowship with God also.
But, as it tells it in Romans 8:35-39
Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: "For your sake we face death all day long; we are considered as sheep to be slaughtered."
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
I have to remember, as much as I miss my time with family and my wife, God also misses that time with me.
Please pray for these things this week:
- Titus continues to grow stronger in his breathing and remains healthy
- The bones in Titus chin will continue to grow strong - Dr. Genecov is planning on removing the jaw distration devices the first week of April, which is 2 weeks later than planned, but wants to give plenty of time for the bone to grow and harden.
- Tucker as he recuperates from the Flu
- Cade as he has a runny nose and slight fever
- Aidan has a deep cough
- Paul has cough and congestion and needs rest this weekend.
- Noah and Becky are healthy (and need to stay that way) Becky for rest - she is the most awesome wife and mother and the has earned her "nursing" degree over the past month and can operate all the machines like the nurses.
Monday, February 11, 2008
Now that he is in a regular room, a family member needs to be with him around the clock. And our transition of care has gone back to our regular pediatrician instead of the host of pediatricians who worked on the PICU floor. This means, the pediatrician generally comes around once a day instead of multiple times. We still have a dedicated nurse, but instead of just taking care of 2 patients, she may have numerous patients to care for. And, since it's a regular hospital room, we have to be there to watch his monitors and how he is doing.
They are stilling giving him a very small dose of methadone every 12 hours to wean him off of all the sedatives he had. We are hoping that will end tomorrow since he seems to be fine without it. He will need to be off the methadone prior to coming home, so this will be one milestone.
We are working on getting his feeding schedule back to a 3 hour feeding schedule. He had been on a continuous feed for weeks, but we are breaking him back in to regular feeds. Yesterday they fed him a small amount every one hour, today they are feeding a larger amount every 2 hours and hopefully tomorrow he will be back to regular 3 hour feedings.
He is still on a very low setting of oxygen. We have been taking the oxygen off every few hours to see how he does, but his oxygen saturation will start to dip, so after 30-45 minutes, we put it back on. They are more concerned about his breathing at night since we all tend to breath more shallow in the evenings. This is the biggest milestone we need to achieve before bringing him home - weaning him off of the oxygen. I'm hoping that getting him off of the methadone will help this.
The last several days, Titus has had a sporadic fever that will spike up and then go down. His blood levels are not showing infection and they have on a general antibiotic, but they aren't sure why he is running the fever.
But, aside all of that, he is alert, happy (most of the time), and responding to us when we hold him. We do not know when he will be able to come home, but we do know the milestones that he needs to achieve. As the doctors continue to remind us, he is making baby steps and progress.
I have to admit, that I do not think that I have ever washed my hands so much in my life. When we are at the hospital, we are constantly washing our hands and putting on the anti-bacterial gel. While in the NICU, we had to scrub for 3 minutes prior to entering, robe up when reaching his room, wash hands again when we entered, after we touched Titus, and when we left his room. Every time! It has now become such a routine outside of the office. Gone are the days when I thought my morning shower kept me clean for the day. I am now in a constant state of washing, drying, putting on anti-bacterial gel.
Why do we do it? to keep the germs off of me and away from Titus.
And, when I equate germs to sin, I have to think - am I doing the same? Am I confessing my sin when reminded or just whenever its convenient? Am I obeying what I'm told to do even when I don't feel like it? Do I follow the instruction laid down before me or deviate to do what is convenient?
When I think of washing my hands, I think of the story of Naaman (2 Kings 5), the commander of the army of Aram. A great man, A respected man, A valiant soldier, and a very sick man with leprosy. His money could not buy the health he needed. He didn't want to do what Elijah told him to do until persuaded. I often wonder why Elijah told him he had to wash 7 times in the Jordan (that's a lot of washing). It would seem like once would have been enough. But doing something 7 times requires obedience, it requires stamina, it requires commitment, it requires a desire to be healed - to be clean.
When I get tired of washing my hands for the umpteenth time during the day, I'm reminded that obedience is never easy. It takes work, consistentcy, commitment - even when I'm tired, even when I don't want to do it, even when I think it doesn't make sense to me.
Please pray for these things this week.
- Titus breathing gain strength to keep his oxygen saturation levels up without having to be given oxygen
- Titus fever will go away or fight off whatever it's fighting.
- Titus feedings schedule to be renewed back to every 3 hours and that he will begin to gain weight again
- Rest and peace as one of us it at the hospital all the time. Becky has been staying there the last several nights. She hasn't gotten a lot of rest the last couple of nights with nurses coming in, or monitors going off.
- Comfort for Aidan, Noah, Tucker & Cade - they continue to maintain a good attitude, but it's very hard when they only see one of us for a few minutes each day. We miss our boys - and they miss us.
- Paul's work schedule - the last 2 weeks have been incredibly busy at work preparing for meetings all this week. His work should ease up a bit next week, but last week and this week have been incredibly busy with little room for error (and when you are tired, that makes it all the more difficult).
Last of all, thanks for your prayers for the All About Attitude conference this past weekend. We had a great conference. It is a joy to have a team of volunteers who did it ALL. It was another lesson for me in letting go and trusting in delegation, but everything went without a hitch and as planned. And it was great to see so many friends.
Tuesday, February 5, 2008
They are weaning him off of all the sedatives they have given him over the last 3 weeks. Titus was given morphine, methadone, fentanol, and other sedatives for 3 weeks. If they were to stop all sedatives immediately, Titus would go through withdrawals - so they are weaning him off the morphine and methadone. Basically, he's going through baby rehab (my term - not the hospital's). When Titus is given a sedative, his breathing becomes much more shallow, therefore not expelling all the carbon dioxide from his blood. As a result, it's a delicate dance of reducing the flow/amount of oxygen and weaning him off the sedatives. They assure us he is doing great. He is much more alert, but still a bit "zoned-out".
Titus is also back to receiving his feeds through his G-tube. He's currently on a constant slow feed, but they will be changing that back to more of a feeding schedule once we get off all the sedation. Titus has gained weight over the last 3 weeks - he is over 9lbs now.
As far as the RSV, he is pretty much over the virus. RSV is a 3-week virus, and it's been 3 weeks today. His lungs sound clear.
I had mentioned in a previous email that Becky and I were looking forward to settling into our "new normal" when Titus came home. After discussions, we've decided going to the hospital once or twice a day is not the "normal" we were expecting. I told Becky this weekend, I just wanted to take Quita (our dog) for a walk - because that's normal.
So Sunday afternoon, after spending a few hours holding Titus, I came home and walked the dog. And, as I'm out walking the empty streets of the new subdivision being built across the street, the tears starting flowing. (OK - I'm not usually this emotional - and I generally don't cry that much.) But walking the dog made me cry because for the first time in weeks, I felt normal. And I thought, I just want my life to go back to the normal that I expect it to be - which includes having all my sons under one roof.
And the thought came to me, did Moses ever wish to go back to life as a shepherd instead of leading some obstinate people? Did David ever want to go back to herding sheep instead of being a king? Did Peter ever want to go back to being a fisherman instead of being a disciple? Do I want to run from the trials and tribulations of life because they are tough and not what I expected? Am I demanding my own way instead of God's way?
And as I walked (and cried), I thought about dependence. Who am I depending on? Titus is struggling to get rid of dependence on something he doesn't need but his body wants. Likewise, am I depending on God which requires my total trust and faith in His plan - especially a plan I cannot see or am I fighting/resisting/struggling with my desire to do things my way.
I'm glad Moses didn't give up on the Israelites, I'm glad David stayed a king, I'm glad Peter gave up fishing. Those men remind me that dependence on God is a day-by-day walk however difficult or hilly the path may be. Although I can only look forward with blind eyes and faith, I can look back and see the visible hand of God in my circumstances.
Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7
Please pray for these things this week:
- Titus' breathing will continue to grow in strength and depth.
- Titus will be weaned off all the sedation drugs with little discomfort
- Titus will continue to be healthy in the hospital without any more infections / viruses
- Continued rest for Paul & Becky and the boys
- And, I have one special prayer request unrelated to Titus. This weekend is the "All about Attitude" parenting conference at FBC Frisco that Becky and I have planned along with our other leaders in our Growing Families community. As many of you know, Becky and I are the captain of the Key Couples for Growing Families in Dallas and have taught parenting classes in Dallas for the last 9 years. We are so incredibly thankful for our leaders in this parenting ministry who have taken up our slack and took care of all the details for this weekend. The only thing we have to do is emcee. It will be such a joy to see so many faces of parents we have taught over the years who have registered for the conference. Our dear friends and mentors, Joey & Carla Link will be traveling in Thursday and will be the speakers for the conference. Please pray for the Links as they travel, Please pray for the 175 people who have registered for the conference that their lives and parenting will be encouraged, Please pray for all the volunteers who will be handling the details of setup, sound, bookstore, food, and cleanup.
And, (ok - now I'm starting to sound like one of those long-winded winners at an award show - I hear the music swelling), I have to let you we are so thankful for the incredible church family we are part of at FBC McKinney. Becky and I have commented over the last several months on how loved we feel when we walk into church. Frankly, there are Sundays/Wednesdays that it's hard to walk in, but we never regret it once we are there. We feel so blessed to be part of such an awesome family of God. It's extremely difficult to explain how much the smiles, hugs, cards, and prayers have meant to us and have been such a testimony to Aidan and Noah. We want you (and everyone) to know how thankful we are for our church family. We feel so loved.