On Saturday, they decided to extubate Titus from the ventilator. They had been turning down the number of breaths the ventilator was giving Titus and he had picked up his breathing and all signs looked good to extubate (or pull the tube out). I showed up early Saturday morning to be there. They had reduced his sedation and he was fully alert and awake. It was so good to see him alert and looking around. He was also cranky - not liking the tube down his throat at all. After they pulled the tube out, he was still cranky, but breathing good. I got to hold him for about 30 minutes. This was the first time in 10 days I had gotten to hold him and although he was fussing most of that time, it was absolutely heaven to have my boy back in my arms. After Titus had been off the vent for an hour, they tested his blood gases, and unfortunately, his Carbon Dioxide count was still high - meaning he wasn't breathing deep enough to expel the CO2 from his system. To keep him from getting more distressed, the decided to immediately intubate him again. So, I kissed my son and laid him back into the arms of the nurse so they could prepare him for intubation and the ventilator.
The ENT doctor who did the intubation came out to discuss Titus' condition after they put him on the vent. Dr. Trone, the ENT, use a lighted fluoroscope during the intubation to examine his vocal box and esophagos. Both were extremely swollen due to reflux, which is why his breathing was not strong enough off the vent to expel the CO2. They have been giving Titus prevocet for the reflux, but that only deals with the acidity of the reflux and not the issue of reflux itself. Upon discussions with Dr. Trone and Dr. Genecov, the cranio-facial surgeon, the best course of action is for Titus to have a nissen fundoplucation surgery (sounds much worse than it is). This is very common with babies, especially those with a g-tube installed. This laproscopic surgery will prevent the reflux, therefore reduce the swelling, and allow Titus to get off the vent. The only other option is a tracheotomy, which we want to avoid. We have not talked with Dr. Renard, the pediatric surgeon, who will perform the surgery, but are praying that it is scheduled as soon as they can. From all indications, we are looking at 1-2 more weeks in the hospital.
So, Titus is back on the vent, sedated some (but not as heavily as before), resting, and now waiting for his 3rd surgery in 3 months.
As I have stated before, these past weeks have been hard. We've come to know every piece of equipment, the settings, what is "in the range" and "outside of the range", every medicine, and every beep/warning signal that goes off. We have gotten to know a whole new set of doctors and nurses and will always be grateful to them for the incredible care they provide our son. We so appreciate the staff who gently talks to Titus, pats him on the head, comforts him when we aren't there. They all know he cannot hear, and yet they all tell us how he responds to them talking to him. So, for us, we so appreciate when they talk to him and tell him what they are doing. It sounds so simple, but it means the world to us that they treat him like the little person that he is (even when he is so heavily sedated).
This week has been very hard on me personally. But as I was driving down to the hospital, I realized that nothing, NOTHING changes my love for Titus. And, this thought came to me. The Bible tells me that God the Father has adopted me as a son, and views me as perfect, without spot or blemish, because I've been washed in blood shed on the cross for my sins. I have always had a difficult time understanding how a father can view a son perfectly, when I know (as the son) how incredibly sinful I am.
And, then I realized, I view Titus as perfect. Yes, he has issues. Yes, he has lifelong challenges. Yes, he has physical deformities. And, I'm sure when he gets older, he will do things that test my patience (just like Aidan, Noah, Tucker & Cade do). Even though I can sit here and list (and spell) all the medical conditions, and I feel like I constantly reciting them to every new doctor/therapist/nurse that comes along, it doesnt matter. Titus is perfect in my eyes. He was perfectly made, he's perfectly my son. So, I'll take Psalm 139:14 and add my view: "I praise you because Titus is fearfully and wonderfully made". And, I now have some inkling of an idea how God can continue to love me and view me as sinless.
Please pray for these things this week:
- Titus nissen surgery to be scheduled quickly
- Dr. Renard who will perform the surgery
- Titus to be free from RSV and any other infection (especially pneumonia). He doesn't have it, but they are constantly watching him for it.
- The swelling in his voice box, epiglottis, and esophagus to go down and return to normal.
- Titus breathing and heart-rate to remain strong.
- Becky and I for continued strength and rest. We are tired, but we persevere.
- Aidan's 11th birthday was last Friday - and he is such a joy and help to us. If you see him, please wish him a belated Happy Birthday and lift him up in prayer as he continues to grow in wisdom and stature.
- Continued good health for Aidan, Noah, Tucker, & Cade - we need them healthy too.
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