6 Months Post Op...

Last Tuesday Preston had his 6 month post op check up w/ Dr. G. We left early and he endured an ultrasound and also a CT Scan and more bloodwork before we actually saw Dr. G. He was an angel!! I should have never expected anything less then that though...with everything this child has been through he has always been an absolute joy! I still jump and cringe everytime a needle comes towards me, but it's like he is looking at the nurse saying, " Ok, cool..just stick me!" as he smiles and flirts...lol. 

So, back to the appointment. Dr. G was VERY impressed w/ how well his scar looked. For those of you that have never seen it it is AMAZING to see what he has come from to now what it looks like. As he grows it will most likely move down his neck and eventually end up on his chest. The incision was MUCH bigger then we had originally thought before the surgery so we are very happy that it has healed so well. It goes from right underneath his left ear and wraps all the way around his neck to about the middle of the right side of his neck...since he is a chubby bunny though you hardly ever see it! Lol. 

When Dr. G removed the mass we were well aware that a small amount of it was not able to be removed...this part was attached to the jugular vein and that is just not an area anyone wants to mess with..especially on the small neck of a 3 wk old!! We knew that it would grow and in the future he will most likely be faced with other surgeries, but we are confident that will be even farther in the future now. Dr. G told us that the part of the mass that was left behind had only had 5% growth in 6 months!!!!! This was GREAT!!! He had prepared us for at least 20% growth so we were thrilled that it was better then he had thought! We don't really have to start talking about surgery options until the mass is about 65% growth or affecting his airway..whichever happens first. We will continue to see him every 3 months to monitor this. 

The only other news was P's swallowing issues. P now has 6 teeth and at this point most kids will start eating thicker foods such as mashed potatoes, sucking and swallowing on cheerios or gerber puffs, etc. While P wants things like that BADLY we have not been able to get him to successfully swallow anything past Stage 2 baby foods w/o choking. During his surgery his vocal box (which plays a big part in swallow reflexes) was slightly damaged and just sort of pushed around. Dr. G feels this is why he is having problems swallowing thicker substances and hopefully with some more time will resolve itself. If not we will be seeing a Speech Pathologist for some more swallow studies and therapy. Right after surgery we worked with a Pathologist at Vandy b/c he had issues even swallowing breast milk and the therapist was such an awesome lady...we hope we will be able to see her again if we must. 

Overall P is just growing like a weed! His thyroid (or half of!) seems to be doing a much better job at functioning as I have seen a huge change in his appetite and weight gain. He was gaining VERY fast there for a few months but the steriods they are using to try and kick start the thyroid seem to be working, in my opinion. We will do more blood work after christmas to make sure. Also, he is still infection free as far as his kidneys go. No UTI's since like Mid August so that is GREAT! He is still on Bactrim daily, but is getting sooo much slicker in trying to REFUSE the meds..lol. As long as we don't get any break through UTI's before Jan. we can wait until then to see the Urologist again for more testing. 

I am going to post below a "tumor timeline" of what P's neck looked like at 6 days old, 3 wks old, the night before surgery, and then 2 days after surgery, and one month post op, and NOW! It's such a roller coaster of emotions to see the pictures now. Those feelings are still fresh and I can still feel all the crazy emotions we went through in each of these pictures. I just continue to Thank God for his blessings and even though P may face more obstacles in his future he has a future...and a VERY bright one at that! :-) 

These are both at 6 days old(above...minutes before he started spitting up blood)

These 2 are from the night before surgery...we had planned on him being about 6 months but it began to affect his breathing and more than tripled in size in about 2 wks.

These were 2 days post surgery. He was doing so well, but still under medication.

You can't see his neck here, but had to share this...This was right before we were discharged...I feel like he is holding on for dear life saying "Get me outta here, daddy!" He is almost 5 wks here.

The picture on the left is ONE month post op and the pic on the Right is 6 months post op. (It's far away but just shows you how much better it looks!)

HEAL THE WOUND, BUT LEAVE THE SCAR. A REMINDER OF HOW MERCIFUL YOU ARE!!!