Titus is one month (and a half) through his 3-6 months of a Halo brace. Unfortunately, his pins have developed infections that are not clearing up. So every time we clean his pins (twice a day) it hurts. And he is vocal and dramatic about the pain.
It makes the care difficult and exhausting. And if this infection doesn’t clear up he may have to move into a full head and neck cast – which would be terrible. We are doing all we can to clean the pins and hope for the best. This added complication is making this journey feel even more challenging for all of us.
Despite the setback, Titus is doing great and living a mostly normal life. We are thankful he continues to move towards healing and that the journey hasn’t been more difficult. We won’t know if the bone graft is taking for a couple more months (at the soonest). We’d be thrilled if it does take quickly, than the Halo comes off sooner. We don’t really put much worry into the scenario if the bone graft doesn’t take, that’s a scarier situation and we are hoping for the best. Usually I also like to prepare for the worst, but in this case there isn’t a lot we can do differently. We have mostly found a new “normal” but we are looking forward to this norm being replaced with full healing!
Titus is doing well. We won’t know if the bone graft is taking for months, but all his incision sites and pin sites look really good. We’ve also scaled down the pain medication. Today, we saw the reemergence of petty sibling squabbles and completely unnecessary tattling; so, back to normal. We are all catching up on sleep, although its a long slow process for all of us. Tomorrow we are going to try and start school. Titus is always challenging and with the Halo and all in encompasses, I’m hoping we can still have a good school term.
Titus had an even better day today. He walked here, there, and everywhere. I was worn out and he was just getting started. He was discharged about 3:30. So long as we stay ahead of the pain, he is pretty much his old self, albeit with a halo brace. It is glorious to be together, home. I’m sure life will be different but as Titus has learned to say: “We got this”.
Today was a much better day than yesterday. It was so much better that Titus may even be discharged tomorrow. I feel both excited and anxious about that.
Titus was up and walking on his own today. He was in pretty good spirits most of the day, so long as we stay ahead on the pain curve. He was asleep during one of his dosage times and we decided not to wake him – it was the wrong choice. His appetite isn’t quite back to normal yet, which is too bad because he can’t afford to lose any weight. Hopefully tomorrow he will feel more like eating.
If he does get discharged tomorrow, please pray for all of us. It will be wonderful to home, together. All of us miss each other. But it will also be all the work and care taking we are doing in the hospital with less help and adding in the other usual household demands. Care taking is difficult with anyone, and with a child like our dear sweet boy, it’s even more difficult. We will need a lot of wisdom, patience, and endurance. I keep reminded myself “Courage, dear heart” and I won’t be stopping just because we will be leaving the hospital.
A friend sent me this and it really spoke to me. “…God of all comfort, who comforts us in all our afflictions SO THAT we will be able to comfort those who are in any affliction with the comfort with which we have received…” One day, I hope I can comfort those who have need as we have receive such gracious, lavish love during this time.
Last night was a difficult as expected. Titus woke up form surgery spectacularly well, which was great. It wasn’t so great as all of his body slowly and oddly “woke up” fully. Pretty much all night long it was “Mom!!!” “I’m itchy/feel weird/dizzy/dirty/sad/tired/want to watch a movie/all.the.things.”. Typical of waking from anesthesia (for him at least), he would wake up about every 15 minutes with something and promptly fall back asleep. Which meant I really didn’t sleep. Good news is we are through it.
Today he was an emotional wreck but medically did really well. He got out of bed this morning amidst much crying and protesting that he didn’t want to try the wheelchair. But he did it and it was really good – got a good amount of the mucous out of his mouth and lungs. He ate a few bites of breakfast (scrambled eggs and cream of wheat) and had drank quite a bit the night before. Because his urine levels were good he was able to get his fluid drip stopped and catheter removed. He ate a few bites of ice cream for lunch. He got up in the walker and used the bathroom (both 1 and 2). He ate a few bites of roll for dinner. He went to the bathroom again tonight and began to sleep soundly at 8:30. Hopefully with a good night’s sleep, we’re really hoping tomorrow will be a better day. Jared is taking tonight’s shift at the hospital so I can (hopefully) sleep like the dead at home. The biggest concerns won’t much change from here on out. We hope he can feel as little pain as possible, emotionally he can find balance, the bone graft takes, and he can learn to live contentedly in the halo. Onward to health and healing!
I am overwhelmed to be at this point. I am so, so, so very thankful that each day from here on out should get easier and towards health. Titus is sleeping/watching a movie right now after the longest day of surgery ever. He went to surgery at 7:30am and didn’t get back to our room until about 10pm. He is amazing and so, so tough. I am also amazing and so, so tough, along with my husband. We’ve also had so much help from friends and family. Collectively, we’ve got this.
So, they had a super hard time getting Titus intubated for surgery. Due to that, his lips, mouth, and throat are really sore. The surgery itself went about as well as Dr. Sayama expected. He woke up surprisingly well and right away wanted a popsicle (that’s my kid – food first). The incision in the back of his neck and his back (where they removed a hunk of rib) are doing really well. His pain level currently is low. His first vertebrae was small and thin, which was no surprise. Our doctor was able to fuse C1 and C2 (which we hoped). Now, to keep the pain managed, to get a good nights sleep, to get up and moving tomorrow, and heading toward the long term goal of bone fusion.
Today is Titus’ surgery. He was the first surgery of the day (which is wonderful). He was feeling pretty anxious. He ended up going into surgery about 7:30am. The surgery should take 8ish hours.
The surgery plan: fuse the occipital bone (bottom of skull) to C2 (2nd vertebrae) or C3 (3rd vertebrae) depending on the vertebral bone condition. They will do this by attaching a plate to the skull and using pins connect this to his vertebrae. Like this:
Because the hardware will eventually fail, they will be doing a bone graft to (hopefully) have a bone bridge over the wonky C1 (1st vertebrae that your skull is supposed to sit on). The extra bone will be from 2 of his ribs and they will use BMP to help the bone grow.
The concerns are:
Post surgical respiratory distress
Waking up well after surgery
Post surgical pain management
Bone graft “taking”
Halo success (both with the safety of using it – no skull fractures! and with the reduced energy level that the Halo will require)
Overall, today was a good day. Titus had a good sleep last night and was pretty cheery today. He used his walker and his wheelchair quite a lot of the day – those glorious tools are making this journey tolerable. He loves his nurses and the staff here. He has laughed a lot and been pretty much his old self.
I love that he wants to pray for the big and small things as we’ve been here. TV doesn’t work? Let’s pray about it. Feel afraid? Let’s pray about it. It’s sweet. God has shown up, and I am thankful.
It will be difficult to restart this process on Tuesday (when he will have the spinal fusion), but I’m looking forward to going home and finding our new normal.
Day 3 went pretty smoothly. T is enjoying cruising in his wheelchair, so he spends quite a bit of time in that. They have a playroom with a table just the right height to sit at in his wheelchair and play, so we do that as well. He also got to use the walker yesterday. He didn’t like that as much (it’s so much slower than the wheelchair). He loves the company he gets and spends down time watching movies. He still has trouble falling asleep, primarily because he wants to lie on his side and he can’t. But, he sleeps well after he gets through the initial discomfort. Jared stayed the night with him last night, which was a nice change for me. This morning, day 4, he was able to have the catheter removed.
Surgery is scheduled for Tuesday morning around 9ish. It will be a long surgery, likely lasting all day. The doctor is happy with the amount of muscle stretching happening and the bones may even be moving a tiny bit, which would be wonderful. Once they do the spinal surgery he will be fitted with his Halo vest. He will have the usual post surgical requirements before going home. He will need to have pain under control, need to be up moving around, and pass at least one bm. Then we will begin the next leg of this journey.
Another day done. Thank goodness. Each day is filled with so much, so much courage, endurance, grace, kindness, love, and heartache, difficulty, and pain. It’s all in epic proportions. Seeing Titus’ in the wheelchair (with the weight swinging behind) and enjoying himself was joy lived. Sitting through him trying to get to sleep tonight with everything bothering him was despair lived. I really can’t say thank you enough to all of you who are our friends and family. There isn’t a doubt in my mind that we are loved more than we deserve. Thank you, thank you, thank you. And, although I hope none of you ever have cause to need us like we’ve needed you, I hope we can be there for you as you’ve been for us. Thank you for the facebook posts, the texts, the calls, the coffee, the prayers, the lived love. It regularly brings me to tears.
I also need to say that Doernbecher rocks. The x-ray tech (who has a mobile machine and COMES TO OUR ROOM) took an x-ray of Titus’ bear. Just because he knew he would be a bit of delight to my boy. That’s all kinds of awesome. Our nurses bring toys and appear as if they have nothing better to do than chat with us. Our PT who got him set up in the wheelchair brought him a squishy animal with a ball that shoots out of its mouth when you squeeze. She then encouraged Titus to drive around finding targets. These people are amazing and I love them for the care and kindness they have shown us.
Clinically, so far, it appears the muscles are stretching, which is good and necessary. But there is little to no bone movement, which is expected but not what we hoped to see. Since Titus has had this condition, likely all his life, the doctor doesn’t really expect his bones to move much, but we’d sure like to see them get into alignment by themselves. Maybe we will know more tomorrow. Also, thank you for being generous to me if these posts are filled with errors. I want to get them posted, but it’s been late and I’m tired.