Surgery #13

Tomorrow marks surgery #13 for Jake.  Call Time is 5:30 am at CHLA for. 7:30 surgery.  They will be working on Jake’s forehead to help smooth out and provide layer over the metal contraption that is holding his head together.  He also needs to have multiple teeth removed which are hidden in his gum line.  On a positive note this is a quicker procedure than his ten hour marathon last time around but always nerve wracking to hand our son over to the surgeon at the hospital.
We will update the blog more tomorrow.

Jake Update

Well, tomorrow marks two weeks since we checked out of CHLA so we thought it was a good time to catch everyone up.  Jake had been doing great during his first week home getting better each day but then things got interesting.  On Monday the 22nd, it was time to change his clonidine patch.  By mid-day, Jake was feeling lethargic, lacking energy, and complaining of knee pain.  We contacted his doctor and it was back to CHLA to check him out.  It was very confusing to us as Jake had been doing so great so immediately the patch came to mind.  We discussed with the doctors and they wanted to monitor him as his heart rate had dipped to an extremely low rate.  The patch was removed immediately and before we knew it they had to check Jake back into the hospital to keep him monitored and wait out the half life of the medicine that had circulated through his body already.   UGH, it was seemingly a known factor that the patch had caused this sudden change in Jake but we had to make sure.  We spend all night in the hospital but then Jake's heart rate increased back to normal and we discharged once again Tuesday morning.  Coincidentally, Tuesday also marked the day Jake had his first post-op checkup with his surgeon.  Good news, Jake was back to acting like himself again so it was clear the patch had an adverse affect on him leaving us with no other worries about his condition.  

Dr. Urata was extremely pleased with Jake's level of swelling, wound healing and how Jake looked overall.  I could tell he was examining Jake but with an admiration towards the results achieved by the surgery.   We did review the concern about Jake's eye muscle and the doctor did acknowledge that when moving the eyes some muscles could be attached to the socket so there could be a chance something was disrupted.  He did remind us that we won't even truly tell Jake's new look for 6 months as that will be the point where there will be no more swelling. At that point, we can reassess and see the status of his eye.  Beyond the one concern, Jake looks and feels great and it is a huge relief to put the worst behind us and move toward full recovery with each day.   It does appear the surgery was such a success that Jake won't need another major surgery perhaps till he's 19.  What a relief, heading into the surgery we thought maybe next year so we will gladly take a 10 year breather.  If an eye muscle surgery is needed, it is much more minor and an outpatient item.   So for everything we have been through that almost doesn't count.  

We have a follow up for end of Sept. but Jake has been doing great and it feels great to watch him get stronger with each passing day.  

Home Sweet Home

Nothing better than check-out day and not a lot to say today except that we are so happy to be home.   The whole family reunited again just in time for school starting tomorrow for Olivia and Luke.  Jake gets some much needed time off and rest.  Siblings happy, parents happy, dogs happy. Jake happy.
He ate a bunch today so his appetite is improving which is a great sign and encouraging for the healing process.

Just when we thought we might catch up on a little sleep, we remembered that Jake is still on an every 4 hour medicine intake so unfortunately we have a 12:30 and 4:30 am wake up.  But it sure beats the hospital so we will take it.

We probably will trim the daily updates unless anything significant happens and will certainly update the blog after his first post-op check up on 8/23.

We want to thank everyone again who have reached out and supported Jake and our family.  It helped us get through this and we couldn't have done it without you.  Jake has seen so many of your posts, photos, notes and he is quick to flash his infectious smile.

Post-Op Day 10

Today was pretty uneventful as Jake has continued to get better and has exhibited this in a variety of ways.  Starting to eat more, no issue with lower doses of meds and awake all day versus being conked out.  We had a decent amount of visitors today and little Jake had three milkshakes throughout the day.  It is a pleasure to watch him eat more and we need to fatten him up as Jake who couldn't afford to lose any weight to begin with is looking a little thin.  

We are scheduled to discharge tomorrow after we get final clearance from pain management team and the subsequent approval from plastics.  We are all very excited to leave this place but extremely thankful to all of the nurses and doctors who have taken great care of our boy.  Jake is smiling making jokes and it is so amazing to marvel at the healing process and how the kids really do recover so quickly.  

Looking forward we will have subsequent follow ups but we already got approval for swimming in another week's time.    One item we are going to monitor is Jake's left eye.  It has appeared to cross at times and it could very well be a function of the swelling but only time will tell.  Jake once had a strabismus surgery to center the eyes and there was always a chance this surgery could affect it.  

We do want to officially announce that Jake is retiring from his professional sports career as he has to stay clear of any physical contact sports.  Skiing is still up for discussion but we will have to revisit with the doctors in a couple months on the long term prospects.  

Post-Op Day 9 (The Photo says it all!)

Jake's trend is really surging upward and his spirits are high and his recovery appears to get better each day.  Early morning we met with the plastics team and from their perspective Jake is cleared to go home.  We did learn one new item in regards to Jake's eyes. Due to the new geography of Jake's eyes, his central vision point has changed so it will require Jake to redo his glasses and vision prescription.  This does help answer why Jake was asking for his glasses but then immediately wanting to take them off.  One new issue is waiting for probably a month for swelling to go down so that we can ensure he has the correct prescription going forward.

Then the pain management team dropped by and unfortunately the meds are the challenge we have to overcome to be released.  We did review the options but to properly wean Jake off all of his heavy duty meds and ensure no withdrawal from them, we have to give it till Monday before we can discharge. We are on a cut down schedule and even when we leave we will continue with the pain medicine protocol till the following Monday which will then mark the day Jake is no longer on any pain medicine.  We had hoped to be able to discharge over the weekend but we would rather know Jake is more likely to succeed at home then discharge too early and have a new issue pop up.

Jake as been in great spirits and he had a really nice visit with Luke and Olivia.  We spent time in the playroom where they played the Wii, painted pictures and played with toys.  Then, we even brought Jake downstairs to hang outside for a short while. The rest of the day was filled with Jake fans swinging by.

Jake is starting to eat more and he is showing all signs of resuming regular activities like the going to the bathroom.  Now, it's just a countdown to release as long as no new medicine issues pop up.

Jake was quite pleased the Dodgers won today and he kept asking me to check the scores as well as he enjoyed watching the Olympics.  The upward swing is such a nice place to be so much so that we can tolerate the discharge delay without getting too down.