Oliver Update

After my last post about Oliver, most people thought I should seek a second opinion from Boston.  Before I had braces put on I had three opinions.  For my brother in law's knee surgery he had three opinions.  My cousin almost had his foot amputated, but another surgeon said they didn't need to and were able to save it.   I had so much time before and didn't think to do this, but now I was strapped for time.   I was extremely stressed out about it though because there was a lot to consider.  I didn't know if we would even have enough time to hear back from Boston before his surgery, and should I cancel the surgery just to get the second opinion, even though I may still end up going with Primary Children's?  I had to have the CT scan, pictures, and the doctor's notes, all to Boston for a second opinion.  It was a lot for us to pray and ponder about in a short amount of time, but I was able to get everything to Boston and they got back to me quickly.

Dr. Meara and Dr. Proctor from Boston had a different timetable for the surgeries.  They said they would do it around 9-11 months when the bones were a little stronger.  They also said they would close the nasal cavity now, but Dr. Siddiqi told us not until he was 2 or 3 years old because they would use his cartilage from his ear and it needed to grow more.  When I told the secretary from Boston that (she was relaying the second opinion) she said maybe they would just close it for now and reconstruct it later on.  She also said they wouldn't work on the placement of his eyes until he was 7-9 years old because that would be the optimal time with the bones.  When I asked how they would do the surgery to repair the encephalocele she said they didn't say in the notes.  I explained to her how they would be doing it at Primary Children's hospital.  Dr. Siddiqi and Kestle discussed two ways of doing it, and one of them was waiting until he was 1 because the skull would be thicker to take from the skull and slice it kind of like an oreo cookie and use the part to patch the front, so maybe that's why they would wait a little longer at Boston because that was the method they would be using.  

Another thing to consider for Boston was insurance.  My insurance agent was able to get back with me to discuss my options for going out of state.  I would only have until the 31st of this month to get a new policy in place for a March 1st effective date, and it's expensive.  Not to mention going back and forth for surgery and follow up in the future.  Brendan and I prayed about it and we have felt good proceeding with the surgery here at Primary Children's hospital, but I'm glad I was able to hear from Boston.  

Oliver's surgery is scheduled for this Wednesday the 20th, but we won't know the time until the day before when they call us.  He has had a cold for a while now, and I took him in for his 6 month check up on Friday and the doctor said it looked like he had some fluid in his ears, so he might have an infection.  I'm not sure if they will cancel the surgery or not.  They will check him the day of the surgery and the anesthesiologist will decide if he is well enough or not.  Before the surgery the ophthalmologist will take a probe and try to unblock his tear duct if that is the problem with his goopy eye, but it could be something related with the cleft nose, and in that case it wouldn't help it.  They will also be drawing blood for his genetic test.  The surgeons will be making a zig zag cut from ear to ear and pulling back his scalp and part of his face off.  They will scrape off the tissue and fluid in the front of his skull and cut a hole in the side of his skull to use in reconstructing the front.  That hole in the skull is supposed to regenerate within 6-8 months.  They will then do some plastic surgery on the front of his face where his skin and hairline are stretched out.  His skin tags on his ear will also be removed.  He will lose quite a bit of blood, so he will have a blood transfusion.  I just called the other day to ask if we could donate our blood to him directly if our blood matched, and they said we could but they don't recommend it because it is too close of a match.

The surgery is supposed to be 4-5 hours long.  I've heard recovery is going to be very hard.  He will be very nauseous from the medication and probably not want to eat for 2 days.  The doctors told us his head is going to be so swollen the next day that we will be thinking we shouldn't have done the surgery.  They said to plan on 4 or 5 days at the hospital for recovery if all goes well.  Brendan's parents are going to have the other 3 kids while we are up at the hospital.  Brendan will be coming down a day or two for work, but I will be up there the whole time.  My sister Whitney lives only 15 minutes from the hospital, so I can go shower and rest if needed over there.  When Oliver returns home he will recover for another 2 weeks I think.  My friend's baby had surgery for a cleft lip and palate recently and she said it took a whole month for her to have her baby back.  She said he was so fussy and miserable.

Many family and friends have expressed a desire to fast and pray for us during his surgery, and we are so grateful.  We are not sure of the exact time of the surgery yet, but they say they usually do younger ones in the morning, so we are going to start fasting on Tuesday at 1pm.  We appreciate everyones love and prayers for Oliver and our family during this time.