Back in the Hospital

Titus has been home for the last 8 days and has been doing great. It's been great to have him home.

We have started a series of doctor's appointments and follow-ups with the various doctors. Today, Titus spent about 4 hours as they reviewed the status of his jaw. His jaw looks awesome - and we will continue to turn the screws for one more week and then stop, allowing the bone to buildup and fill in. Dr. Genecov is pleased with the progress and how much his jaw has pushed out. It truly is amazing and I will have to send out before and after pictures for you to see.

But today, when Becky returned home, she was noticing how tired he was and his little cough that he had this morning was starting to sound worse. While feeding, his breathing got worse and he turned gray. Becky called 911 and the paramedics were there instantly. Prior to coming home, Becky and a friend visited the local fire station to inform them of Titus since they would be the responders in the event of a call to 911. As only God would foresee, the team that responded tonight was the team that Becky had visited with several days ago. TItus pinked up upon giving him oxygen, but after conferring with the doctors, it was decided to take him back to the ER at Medical City. Upon arrival, they immediately tested him for RSV (a nasty respiratory virus that's common this time of years for infants) and he tested positive. Titus was given Syngesis, a vaccine for RSV, several weeks ago, but as they told us, the vaccine does not prevent the virus, but hopefully will make the case and symptoms less severe. Since the first 72 hours of RSV are the worse, they checked Titus into the Pediatrics ward at Medical City Children's Hospital. This is the same hospital we were at previously. They are giving him nebullizer treatments every 3 hours and suctioning him as needed while they have him hooked up to the monitors. As the hours progressed, we could tell he was feeling more and more puny, and we realized that we got him to the hospital just in time as it looks like he is just now really coming down with the virus. I came home to be with the boys tonight and just checked with Becky before going to bed. They are trying to determine whether or not to take him to the Pediatric ICU (PICU) or leave him there. One of the issues with RSV is that breathing becomes difficult for the infants - so they just stop. If they are going to put him on a CPAC breathing machine, he will need to be in the PICU.

Please pray specifically for these items:

• The next 72 hours are the roughest for Titus - pray that the vaccine he received will keep the symptoms light. Pray for TItus breathing, his strength, and his rest.
• The RSV virus last for 3 weeks - this does not mean he has to stay in the hospital for 3 weeks, but we know it's going to be awhile before he's back to his old self - but we pray for complete healing in God's timing.
• Strength for Becky and I as we again make the trips back and forth to the hospital
• Comfort for Aidan, Noah, Tucker and Cade as they get shuttled around a bit over the next few days
• Praise for his jaw as it has improved his breathing dramatically. If he had gotten RSV any sooner or prior to surgery, he would be struggling so much more. Pray that the bone will begin to form and harden.
• The team of doctors/nurses overseeing his care. Since we are in the Pediatric ward now, it's a whole new set of nurses and doctors that we will be working with.
  

As I told my parents tonight when I got home - this is just part of the journey for Titus. We know there are going to be events like this for him and today was just one of those things that's going to happen. I was so proud of Becky and the boys (and my parents) for their response as they called 911 and the paramedics arrived. Everyone was calm - which is how I want my boys to learn to handle emergencies - with a calm heart, urgency in action, and a call to prayer. I'm so reminded of 2 Cor 4:16-18 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Fixing our eyes on what is unseen,

It's a Happy New Year!

Thank you! Thank you! THANK YOU for all the prayers this past week. Titus is doing great now that the anti-biotics have kicked in. We are on day 4 of a 7 day treatment and Titus is back to his old self - alert and happy. Right now they anticipate maybe next Tues/Wednesday before he can go home (but I will believe it when I place him in his crib at home).

They have also prepared us that infection is very common after this type of surgery and to be prepared for another infection in the next 10 weeks before they take the jaw device out. Just knowing that helps us to be better prepared (of course, it would have helped to have known that a few weeks ago - but I must have missed that detail in the 5-page medical release I signed for surgery). We also talked with friends of ours who had the same surgery with their daughter (same surgeon) and they experienced the same things.

I will say though, last Monday was probably one of the worst days we had gone through besides the days after he was born. It was just devastating to see him all hooked up and lifeless after he had made so much progress. Here it was, New Year's Eve, a time of celebration and I was full of pity and doubt. I sat at Little Caesars Pizza at 4pm waiting for my sausage pizza to be ready, puddled in a chair, doubting if my son would ever come home. But I came back to the statement I have shared with many of you before - "How big is your Faith - How BIG is your God!" And, again, I had to leave my son in God's hands.

Just so you know how God answers your prayers, let me share this with you. Titus has "curvy" veins (non-technical/non-medical term - but it's what the nurses have called it). Because of this, they generally have a difficult time putting an IV into him. We've seen them stick him more than 30 times trying to get an IV started (not an easy thing to watch over and over). And, once they get an IV into him, the vein has always collapsed after 1 day. When I asked you to pray for his IV this past Monday, God specifically answered that prayer for our little boy. They had no problems this time and the vein has not collapsed after 4 days. The nurses are amazed, but I know the reason why - our God is a God of details. And no prayer is too small for Him.

We are so thankful for the prayers that have kept us going. His breathing has improved dramatically and you can see how much his jaw has moved in the last 2 weeks. We are able to hold him again on our visits and do all the same things with him that we were doing before the infection. He's up to 7lbs, 4 oz. and was 7 weeks old yesterday. The nurses also comment on how well he communicates. He fusses/cries when he wants something and as soon as he gets their attention, he stops. He knows exactly what he is doing!

Blessings to all and Happy New Year!

Titus Needs Your Prayers Tonight

They ran lab work this morning to check his levels to see if the antibiotics given yesterday were fighting the infection. His levels were still high showing infection so they installed an IV and started him on a heavier dose of antibiotics this morning. He was also anemic so they have given Titus some blood.

They have been trying to locate the area of infection, but this afternoon, one of the sites of his jaw distraction was oozing, so they are pretty sure the infection is around the jaw distraction device in his jaw. The cranio-facial surgeon has come by this afternoon to review Titus and says infection around the site is common and he's on the right meds, but still, our hearts are anxious.

Titus was pretty lethargic today with the antibiotics. And due to the IV and the giving him blood, we were not able to hold him. Today has been difficult after the last few days where he has been unhooked and alert. Going back to seeing him hooked up and limp broke our heart.
Our specific prayer request is that Titus' body will respond to the antibiotics and the infection will start to clear, that his IVs will stay in and his veins will not collapse around the IV, and for Becky and I to "cast all our cares on Him" because we know God is watching over all. Lastly, the company I work for has changed insurance and tomorrow, our insurance changes from United Healthcare to Cigna. Our prayer is that we will not have any complications with the switchover.

Change in Plans

As we have come to learn, life in the NICU is a day-by-day life. We arrived this morning ready to be discharged. The doctor thoroughly examined Titus and proclaimed him ready to go home. I went to pick Titus up and thought he felt warm. (The doctors always have gloves on so they don't always notice - and Titus generally runs a 99.0 temperature.) I took his temperature and it was 100.4. The doctor heard me say that, came back and decided to run some labs to be absolutely sure. Sure enough, the labs came back and showed he was running a small infection. They started him on oral anti-biotics immediately and we will watch him over the next few days.
So, tomorrow they will check his progress - he may come home tomorrow, or it may be a few more days. We realized as we left, how thankful we were to catch the infection while still there since we may not have noticed it at home for several days.

Please pray that the infection is minor and oral antibiotics will take care of assisting his body in fighting the infection. If this turns into a major infection, they will start an IV which is always difficult with Titus' veins (and they removed the broviac line last week.)
Thanks again for your thoughts, emails, and prayers.

Surgery Rescheduled

Titus is a month old tomorrow. After 4 weeks in the NICU, he has made much progress from when he first came in. We haven't reallly had any "steps back" until this week, so although it initially caught us off guard, we realize that setbacks are to be expected in the NICU.

Titus was originally scheduled for jaw distraction surgery yesterday. When Dr. Genecov, the cranio-facial surgeon, stopped by on Tuesday to review the procedure with us, Titus' white blood cell count and temp was up. This indicated an infection. Further tests confirmed it, but they could not find exactly where the infection was. Nevertheless, surgery was postponed to make sure all signs of infection were gone. They started Titus on antibiotics immediately and he has responded well to them. He was also struggling with his oxygen levels, so they put a canula under his nose to provide oxygen. As of now, indicators looks good the infection has been taken care of, but they will keep him on antibiotics and oxygen for a few more days. To administer the antibiotics, they had to install an IV. Since the day Titus was born, they have had problems installing IVs - and it's truly painful to watch them stick him numerous times only to have the vein collapse.

Today they tried to install a PIC line IV but gave up after trying for over an hour. When we finally saw him, his little arms looked like a pincushion and he was wide-eyed and hungry. He settled down after a feeding and got some rest. But, since Titus will need a solid IV installed for them to administer antibiotics and pain medicine after his surgery, they are installing a broviac IV tonight. Dr. Renard, the pediatriac surgeon who took care of Titus during his g-tube surgery, is installing it as I type this email.

After the last two weeks of being able to hold him with only a few wires, it's been hard to see him go back to have more wires and oxygen tubes around, but we know it is for his good and only temporary.

The jaw distraction surgery is now scheduled for Friday, Dec. 21. I do not know the time yet, but will let you know as we get closer.

Becky and I went out to dinner last night on the way home from the hospital. We needed the time to just talk. We are tired, we miss our boys, we feel as if we shuttle them back and forth so much, and we feel so helpless for Titus. But we talked about the main verse that has resonated in my head "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9.

For my birthday last year, Becky and boys gave me a Noah Webster Dictionary from 1828. The beauty of a Noah Webster dictionary is that most of the definitions have Biblical references. Grace, has more than 20 explanations as defined by Webster. But some of them are:
the free, unmerited love and favor of God, the spring and source of all the benefits men receive by Him, favorable influence of God, divine influence or the influence of the spirit in renewing the heart and restraining from sin Christ's righteousness to the sinner, Favor, mercy, pardon
privilege.

And sufficient is defined as "enough to equal to the end proposed; adquate to wants; competent; qualified; fit"

So, taking this back to Becky and I sitting at dinner - we talked that God's grace (HIs free unmerited love, favor, mercy, pardon, privilege, benefits) is sufficient (enough, adequate, competent). In our microwave, super-size-it world where we want it NOW and we want it BIG, I have to realize God is sufficient. He's all I need, He's ENOUGH, more than adequate, and entirely competent. And as I struggle with the 'I Want Titus Home NOW and I want my life back to normal NOW' thoughts, I'm reminded over and over 'God's Grace is Sufficient'. And even more, that His power is made perfect in my weakness. I hate being weak - as much as I want to rush in and fix everything, this is a situation where my talents can't help Titus. I'm totally helpless as I watch the doctors/nurses work on my son. Yes, I can pray, but when you stand there watching a team work on your son, you want to do something. It's my son and I want to help him, but I can't. So instead, I sing.

Jesus loves me, this I know
For the Bible tells me so.
Little ones to Him belong.They are WEAK, but He is Strong.
Yes, Jesus loves Me.
Yes, Jesus loves Titus.
Yes, Jesus love me,
The Bible tells me so.

Thank you for bearing with me through my long emails. Writing is therapy for me (Hello, my name is Paul, I write a lot. It's been 4 days since my last wordy email).

Please pray for this things this week:

• Titus Broviac IV can be installed with no problems and function completely for the all his needs the next few weeks


• Titus body will be healed from all infection so that surgery will go as scheduled next Friday


• Titus breathing will stay strong


• Titus will continue to gain weight (he's over 6lb 3 oz - and getting a little chub on his skinny legs).


• Our health - Aidan, Cade, Tucker, and Paul are all struggling with coughs, allergies or asthma


• Becky's strength as she coordinates schedules, hospital visits