Wednesday, March 26, 2008

The Reality of Routine

Titus has been home from for 2 weeks now after his Glaucoma Surgery. He is doing good - and his eyes are clear and not swollen. It's still too early for them to test his vision and see if there is any permanent damage to his eyes. He is still on oxygen (at very low settings), and begins to struggle after an hour if we turn it down or off. The pulmonologist believes a small portion of his lung may have collapsed after the last surgery and it's just taking awhile to get back. We are becoming quite adept at carrying him around the house with this oxygen hose trailing behind and taking him to the doctor/church with portable tanks.

It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.

And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.

As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.

The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.

Please pray specifically for these items:
  • Titus will have a swallow test done today. The doctors did an initial swallow test very early on and this is an update to see if he will aspirate (water/food/saliva) into his lungs versus down his esophagus into his stomach. If this is successful, they will start more therapy to introduce him to swallowing liquids. This is just one step to getting him off the feeding tube. Titus does great with a pacifier and he's very close to sucking his thumb (he gets those hands up to his mouth).
  • Titus will have his follow-up jaw distraction surgery on April 2 at Medical City Dallas. This surgery will be to remove the devices put into his jaw that stretched it out. Specifically we pray he remains healthy prior to the surgery, that the bone that has been formed through the stretching will continue to harden, and for no complications after surgery from infection. Also, due to his breathing issues, we are praying that another round of anesthesia does not set him back. Dr. Genecov and his incredible staff at the International Cranio-Facial institute will be doing the surgery.
  • When he goes in on April 2, we are also coordinating with Dr. Peters, the audiologist for a 2nd ABR test. When they did the initial test, Titus was not sedated, but for this test, they need him fully sedated. We have asked if they could coordinate this with his other surgery to only anesthetize him once instead of twice. Dr. Peters will be putting together the plan for his hearing (hearing aids to stimulate the ears - cochlear implants in the future), but we have had to delay these appointments due to the RSV and glaucoma surgery.
  • Titus has a one-month follow-up/surgery in Houston with Dr. Feldman for his glaucoma on April 14. We will drive down to Houston for the weekend, have the appointment on Monday with surgery that afternoon. Again, we are praying for quick recovery for his eyes and his breathing.

We also want you to offer up praise and thanksgiving for the following answered prayers:

  • Titus has Medicaid coverage up to Feb. 29, 2008. This should cover the remainder of bills we are responsible for after our primary insurance has paid. Since we have already met the yearly out-of-pocket max, we aren't too concerned about the remainder of the year since insurance will cover, but having Medicaid coverage for the initial 54 days in NICU and the 33 days with RSV will help tremendously. We are still working on full-time Medicaid coverage and SSI benefits, but for now, this is a step in the right direction.
  • We have a new Suburban to carry everyone in. I had mentioned that we were looking for a vehicle that would allow for all of us to be in the car together. God provided in an incredible way allowing for us to purchase a car at auction through a dealer. So, we are the proud owners of a new (used) 2008 Tank (ok - it's a Chevy Suburban). The boys and I spent last Saturday re-organizing the garage so that we could park it there (with just 2 inches to spare). And last of all, please say a prayer of thanksgiving for my incredible wife who has a birthday on Friday, March 28. My life would not be complete without her and I treasure the day she was born (and the fact that she's SO much younger than me - she keeps me going).

Tuesday, March 11, 2008

Coming Home from Houston

Becky and Titus (and her mother, Elizabeth, and Aidan and Noah) will be coming home from Houston tomorrow after they see the glaucoma surgeon for a follow-up. It's been one week since Titus had surgery and his eyes look good, but he has stayed in Hermann's Children Hospital in Houston for the past week trying to get his breathing back to normal and get him weaned off of oxygen. He is on the very lowest dosage of oxygen they can provide and yet, when it's turned off, his oxygen saturation, starts to drop. It was decided today to send him home on oxygen and we can then work with our pulmonologist in Dallas to get him weaned off.

I drove to Houston this past weekend to see Becky and the boys. It had been a long and very quiet week at the house with everyone gone and it was great to see my wife and boys again. It is absolutely amazing the difference the surgery has made in Titus' eyes. We did not realize how swollen/bulging they were from the glaucoma until now.

But, going into surgery, Titus had some sinus drainage - either from allergies or cold - that was causing some congestion issues. Thankfully, it never went into his chest, but during the first 5 days of the hospital stay, the respiratory therapists were having to suction his airway out every few hours. On Sunday, this started to resolve itself (after a small dose of Benadryl). And, now, the major issue is weaning him off of oxygen and getting his feeds back to where he was prior to surgery. We also know that Titus will have surgery in 3 weeks to remove the jaw distraction devices, so we know we could easily have the same issues with weaning him off of oxygen again. But fortunately, we will be in Dallas with our team of doctors that are very familiar with him.

Please pray for the following:
  • Rest for Becky and Elizabeth tonight
  • Safety in traveling back to Dallas - it's about a 4 hour 20 minute trip
  • Titus oxygen levels and breathing will return to normal levels without having to supplement with oxygen
  • All at-home supplies for oxygen will be delivered in a timely manner
  • Strength and continued healing for Titus - he will have his 5th surgery next month and needs to maintain his health before going back in again
  • Thursday's appointment in Dallas with our pulmonologist - that he will provide the techniques and treatment necessary to get Titus off of oxygen
  • Adjustment as we get back to our routine at home - Paul has to travel to Atlanta on Thursday for a one-day meeting, but thankfully, the weekend is close.

And, we are forever grateful for dear friends, Mike and Jody Krogstad from Lake Jackson, who have kept Aidan and Noah for the past week, kept them going on school, brought them up to the hospital, and provided such incredible support. We are also so very thankful for my parents, Lou and Nolon Daily, who have kept Tucker and Cade (2 VERY active 3 year olds) for the last week. We are also thankful that Becky's mom, Elizabeth Temples, was able to make the trip to Houston with Becky and provide 24/7 care and support for Becky and Titus. And, for new friends, Suzy Gidden and Nan Grantham, who brought food/snacks up to the hospital. It was also a blessing to have Cathy Blue and April/Stirling Vineyard come up to visit during out stay in Houston. And, we were so blessed with the incredible doctors/nurses/respiratory therapists that we had at Hermann Children's Hospital. In your prayers, please thank the Lord for the incredible blessing of these people and ask for God's continued blessing to flow down on them.

Wednesday, March 5, 2008

Speedy Recovery

As mentioned yesterday, Becky and Titus flew to Houston yesterday afternoon. Dr. Feldman immediately saw them upon arrival, checked Titus into the hospital within the next hour and surgery commenced immediately. Titus was out of surgery at 11:00pm.

I just got off the phone with Becky after Dr. Feldman stopped by to review his progress. He is extremely pleased with how the surgery went and how Titus is responding. His eyes look good and they will follow-up with another visit next week.

Titus was pretty dehydrated by the time they got him to surgery last night, so they pumped him full of fluids in addition to the anesthesia. Going into surgery, Titus has had some drainage from a cold although it has not gone into his lungs/chest. But, he is full of fluids and that's hampering his breathing a bit. He continues to improve each hour and as I remind Becky, it's not even been 24 hours since he had a 3 hour surgery. So, as soon as they feel comfortable with his breathing, they will release him from the hospital, which we suspect will be tomorow. Becky and Titus will travel back to Houston next week for a follow-up.

Our sweet friend, Anne Marie sent us this verse this morning - and how appropriate it is.
Isaiah 58:8-9
Then your light will break forth like the dawn, and your recovery will speedily spring forth; then your righteousness will go before you, and the glory of the LORD will be your rear guard.
Then you will call, and the LORD will answer; you will cry for help, and he will say: Here am I.

It is absolutely amazing to think that Becky received a call at 10am yesterday saying a doctor in Houston could see us if we could get there that afternoon, and less than 12 hours later, not only had the doctor seen us, but he had Titus in surgery - talk about "speedily springing forth recovery". God knew and had the perfect surgeon picked out for Titus - one that was willing to start a 3 hour surgery at 8pm. This surgeon is also leaving town on Thursday to go to a conference, and is seeing 55 patients today, and yet he found time for Titus.

I thank God that He works in the details.
I thank God that He is in the business of speedy recovery.
I thank God that He has my back (he's my rear guard).
I thank God that He answers when I cry out for help.
I thank God for friends who love us, encourage us, and lift us up in prayer.
I thank God for a surgeon, Dr. Feldman, who was willing to work way into the night to help my son - I am so humbled by his commitment.

Pleas pray for the following:
  • Continued healing and strength for Titus - especially his breathing
  • Rest for Becky and her mom - they need some sleep before they attempt to drive home from Houston
  • Comfort and peace for the boys: Aidan and Noah are in Houston with Becky (staying at the K's), Tucker and Cade are in town (staying with the D's - and being spoiled rotten I'm sure).

Tuesday, March 4, 2008

Off to Houston

I apologize for sending 2 updates back-to-back, but based on the recent turn of events, I am asking for you prayers.

As mentioned in the previous email, they suspect Titus has congenital glaucoma. Dr. Leffler, the pediatric ophthalmologist says "suspects" because he was not able to anesthetize Titus for the exam to confirm the exact pressure levels of the eye - BUT, the pressure levels were extremely high so the "suspect" is probably more a confirmed. Since prolonged pressure can cause permanent damage, it was urgent to move quickly to resolve.

There are only 2 pediatric glaucoma specialists in Dallas: one who does not take insurance and requires cash payment up front and the other who could not see Titus for a week-and-a-half and would only do one eye at a time. From discussions with Dr. Leffler, he felt this was serious enough not to wait another week. Becky began contacting/researching doctors in Houston yesterday afternoon. Dr. Leffler talked with the doctor in Houston and provided all the records and medical history.

This morning, Dr. Feldman in Houston called to state he could see Titus this afternoon - with possible surgery tonight or in the morning. So, as I am typing this email, Becky is boarding a Southwest Flight with Titus to fly to Houston. Jody Krogstad will pick her up in Houston and take her to the doctor. Becky's mom, Elizabeth Temples, is driving down to Houston this afternoon with Aidan and Noah. Our dear friends, Marti & David Dunton will be taking care of Tucker and Cade for the next few days and then my parents, Nolon & Lou Daily will take them. I will be taking care of Quita when not at work (I know a couple of you were thinking - what's Paul gonna do?)

Please pray for these items:
  • Titus and Becky will have a smooth and uneventful flight to Houston and that it arrives on time - although a short flight, no one likes to sit next to a upset baby.
  • Dr Feldman will be able to examine Titus and quickly diagnose the best treatment to take.
    Surgery will be scheduled and conducted with no complications. From what I know - there are 2 types of surgery they can do, but in a nutshell, the canal in the eye that allows for fluid to drain from the eyeball is not there. The surgery builds the canal, allowing for fluid to drain normally (and therefore relieving the pressure). The surgery is a 3-hour surgery.
  • Quick recovery for Titus
  • Comfort and peace for Becky and the boys as they stay in Houston
  • Comfort and peace for Tucker and Cade as they stay with friends and family
  • Becky's GEMS group tonight - Paul is going to speak in Becky's absence for her GEMS group tonight (and he promises it will be awesome, but he will not take any questions on breast-feeding or potty-training. )

Monday, March 3, 2008

Mighty Oxen

What a joy it is to say that Titus has now been home for 15 consecutive days. We feel like we are settling into a normal routine albeit one that still revolves around numerous doctors appointments and therapy (and feedings every 3 hours around the clock). But, I love coming home to my wife and all 5 boys sitting around the dinner table (enjoying a delicious meal that has been graciously provided for us).

Over the last 2 weeks, Titus has visited the pulmonologist - who has determined that he did not have a partial lung collapse while he had RSV, but more of a diaphragm distension. He has prescribed a new treatment to assist in keeping his airway open. Becky was able to provide him with all the x-rays since birth and the doctor thoroughly reviewed his progress to-date.

A week ago, Titus had his initial appointment with Scottish Rite Hospital here in Dallas. They will address any issues that arise from the hemi-vertebrae in his spine and his turned foot. But, from their initial inspection, they offered encouraging words and feel his foot is turning into normal place and his spine may be fine - they will just watch it over the years.

Last Friday, we had an appointment with Dr. Leffler, pediatric ophthalmologist. Dr. Leffler had examined Titus when he was a few weeks old, but that exam was basically to make sure all the "parts" were there. Numerous doctors/nurses have commented on Titus' cloudy eyes and this appointment was for Dr. Leffler to do a more thorough examine now that Titus is older. His initial findings are that Titus is suspect for congenital glaucoma. This is totally treatable with surgery, but needs to be addressed in a timely manner. We are in the process of getting an appointment with a pediatric glaucoma specialist next week. One of the issues will be that Titus will need to be anesthetized to accurately check his glaucoma pressures and surgery. This is always an issue with Titus since he has a complicated/compromised airway.

It's easy to get overwhelmed some days when you think about all the issues facing Titus. And then, I look back and see how far he has come. The last 4 months have been a blur of hospital stays, doctors, treatments, surgeries, sleepless nights, and countless tears. But the last 4 months have also been a time of great rejoicing as we have seen answered prayers, of sweet fellowship with friendships that have been formed and strengthened by the love poured out to us, of overwhelming support from our church family, our ministry family, and cards/emails from around the world. I am reminded again and again of Galations 6:2 "Carry each other's burdens, and in this way you will fulfill the law of Christ." So many of you have carried our burden over the last few months - and I will say again, I am truly humbled and thankful.

Webster's defines burden as "something that is carried; a load; duty, responsibility". In today's crazy world, it seems that everyone has full plates, busy schedules, full lives. And as full as your life is, many of you have found time to stop what you were doing and carry our load. It could have been stopping to pray for us, or taking our boys home to your house to play after church, or visiting us at the hospital, or writing a note of encouragement, or cleaning our house, or cooking a meal. How humbling it is to be on the receiving end and to be carried along. And, what an example it is to us and our boys to look for ways to lighten someone elses load. What a reminder to me to never be so busy that I can not stop what I am doing, take my eyes off of self, and look for ways to serve others.

One more note - oxen are considered beast of burden because of their incredible strength in carrying heavy loads - so please take this as a compliment when I say "you are a might ox!"

Please pray for these things:
  • Titus will get a quick appointment with the glaucoma specialist and surgery will be scheduled quickly
  • Titus' breathing will continue to go stronger, his lungs will continue to stay clear and he will recover from the hacking cough and drainage he has.
  • Titus therapy - we are working on him sucking on the pacifier, and continue to work on stretching his arms/legs and getting him to lift his head. These are all areas he's delayed in since he has spent so much time in the hospital.
  • Clarity as we work through the maze of medical bills and coordination with benefits. We have obviously met our out-of-pocket maximum for the year, but we are still getting bills for way more than that amount. Titus has hundreds of medical claims that have been filed by the numerous doctors and agencies at the hospital. Plus, we are still trying to navigate the Medicaid maze. Financially, we have always seen God provide - but it has been a little overwhelming to reach your out-of-pocket maximum ($6,000) in December 2007 and then reach it in 3 weeks in January 2008 for the new calendar year. But just like God provided exponentially for our adoptions, we know he will provide again.
  • Our search for the car that we can all fit in - I have learned to say "I will never drive a . . . " like I did when I said "I will never drive a mini-van (and we are now on our 3rd van), but we are now looking for a Chevy Suburban or GMC Yukon XL that we can get all the kids (including 3 car seats). Aidan and Noah would love for us to purchase the retired mini-church bus I found on Craigs List, but Becky and I are leaning more towards something that will fit in the garage.