Tuesday, March 12, 2013


This time  a week from now, I will most likely have given you all an update on Jacob's surgery. It is scheduled a week from today. Bright and early in the morning.

Jacob is getting a second pair of ear tubes. No big deal, right? Many kids get that procedure done, and go home the same day. Your kids had it done or somebody you know. It was probably nothing dramatic or something you can remember in an instance.

When it comes to Jacob, you simply don't want to put the word surgery in the same sentence as his name. This is true for even a 5 minutes procedure. This is how long it takes to put in a pair of ear tubes. 5 minutes or 300 seconds.

So, why are we doing it? You can live without a pair of ear tubes, even if it means frequent ear infections. In Jacob's case, he has a severely retracted ear drum that was discovered during a regular follow-up appointment with Dr. E. It is so retracted that Jacob could easily develop cholesteatoma. Cholesteatoma is an evil little cyst that will "eat" your ear, lead to hear loss, and multiple surgeries. The surgeon can also not rule out that Jacob doesn't already have cholesteatoma until she is in there putting in his set of tubes.

So, team Jacob has been at hard work making sure that everyone is on board with his ear tubes. Dr. E. had the first say. She immediately supported this surgery, even if she is the first one to say no to surgery when it comes to our boy. She sees no way around it unfortunately.

Anaesthesia was next. We talked about Jacob's breathing. We talked about how Jacob has reacted to anaesthesia in the past. The fact that Jacob sometimes doesn't wake up for hours and hours after anaesthesia. We talked about pain management, and what happens if you load Jacob with too much pain meds or too little pain meds. We have been through both scenarios, and both scenarios are scary and painful to Jacob. We talked about the possibility of a breathing tube, if Jacob can't breathe on his own. Despite it only being 5 minutes, it is still full blown anaesthesia.

Anaesthesia also made it clear that they were not willing to perform this surgery, if we didn't get the go ahead from hematology. Jacob has had issues with blood coagulation, and anaesthesia wanted a plan for Jacob's blood in the case of bleeding.

We saw hematology yesterday. This is a new specialty for Jacob. We saw them inpatient in November when Jacob developed a Vitamin K deficiency, but it was a brief visit with a quick solution. When it is time to analyze blood, you need a lot of blood! I was honestly shocked how much blood was needed for his full blood analysis. Holy cow!

Between yesterday and today, I have had a crash course in Jacob's blood. Jacob's blood coagulation is abnormal. His platelet function is also abnormal. They don't find an inhibitor causing this. Unfortunately being on a multitude of seizure medications can cause this. It is not uncommon in any way. They then went deeper and looked at the different blood coagulation factors in Jacob's blood. Each factor is normal. This means that the risk of Jacob having bleeding issues during the surgery is minimal. No extra precautions are needed from hematology for his surgery. Phew! We need to go back and see them in 6 months to repeat a full blood analysis, but that's it!

Jacob's ENT surgeon said today that she is all ready for Jacob. She wants him to go straight to the PICU after the procedure, and I think we're all fine with that. Just in case. For everyone's peace of mind.

Am I still nervous? Am I still going to be on edge until we have this done? I will, but I honestly can say that we couldn't be better prepared.

On a lighter note, Jacob had his 1-year mark of bone treatments yesterday! It is a year ago that we found out about Jacob's broken arms and T4 wedge fracture. Since we found out about Jacob's osteoporosis, we have had no more broken bones and our boy is doing weight bearing in his stander daily!

I'll end with some photos of our boy from the past week!

Swinging at school during therapy!

So, great to be standing!

And so great to be out for walks again!

Love, Maria.


  1. Jacob!! Look how big you are!! You little precious boy!! Mwah, mwah, mwah!

    1. Krissy, it is so good to see you here! How are you all doing???