Thursday, May 28, 2015

8 month follow up in the books!

8 months later and trach free, we have great news! Preston's airway looks P.E.R.F.E.C.T- words I never thought we would hear. Seems surreal. Follow up with Dr Rutter for airway is in 1 year! He was very pleased with how P looks! Hip Hip Hooray! :) His stoma is completely closed and we got the green light to SWIM! Another celebration! 

Now for the 'questionable' news. We requested Pulmonology to be apart of this scope b/c Preston has a nagging cough he can't seem to kick. With a week long ICU stay this winter and another 1 night return inpatient stay for various reasons and a new cocktail of meds that seem to be helping, we just can't pin point what is going on and needed answers to our questions. SO GLAD we had Dr Benscoter do a flexed bronch and lavash (washing of the lungs) on Preston. He found a milky white substance in his lungs that is not normal or anything they have ever seen with P before. This could explain the cough and illness! Labs were sent off and we are very anxious to hear what comes back. The hope is an antibiotic will be the answer! Possibly another swallow study. Stinks that no matter what comes back, we have to go back to Cincy in a few months for a follow up scope with Dr. B :( SO bummed about that. Sure feels good though for ENT to now be at the mercy of what Pulmonology wants to do instead of the other way around. Pretty awesome! 

On our drive home, I contacted Dr Andrews (P's plastic surgeon) and he will be doing the scar revision surgery on Aug 6th and a few touch ups on P's ear. We will start a new school year with a new neck and 'perfect' ears for Preston and a whole new vocabulary (words are flying out by the minute and now sentences.....thank you God!!!). 

I have to say the road trip to Cincy and back in 2 short days was actually really fun. Tim and I didn't realize how much we needed the uninterrupted time to catch up and talk about everything under the sun and just enjoy each others company. We relish in the time we have with each of the boys one on one. Preston is SO DARN EASY and it was a dream come true for him to get to sit for 10 hrs and watch movies. LOL Lord knows this is not Reid's desire so we are thankful God gave Preston this personality for all of the travel we have needed to do with him. He tolerates all of it so well. Only asked to go home once and shed a few tears for Reid on the way home (must have forgotten the slight push Reid gave him on our stairs the day prior). It wouldn't have been a trip to Cincy without a stop to our fav ice cream shop, Graeters! We also bought 2 pieces of art in a local downtown shop (done by a local artist) to remember our time in a city that has so much meaning to our life. 

Its been a LOOONG 3 1/2 years and we finally see the VERY end of the road in sight. Now if we can just get to the bottom of this cough and find out what is in his lungs, we are all set! 

THANK YOU THANK YOU THANK YOU for everyone's prayers, well wishes, and unconditional love and support on this journey! It hasn't been easy but it sure has been worth it. Your loyalty to us is what sustained us all along! We appreciate you!!!!

Saturday, May 16, 2015

8 months Trach Free

Still seems like yesterday we were pinching ourselves seeing Preston's naked neck. I can't believe its been 8 months. The boys 1st year of Preschool is coming to an end this week. Preston is TALKING like crazy! He is saying several new words DAILY! We head back to Cincy on Memorial Day for Preston's follow up scope to see how his airway looks. Unfortunately, this winter was not fun. P had a week long stay in the ICU and another night inpatient a month later for several reasons. He is now on a new med plan that seems to be doing wonders for him thanks to his NEW Dr at KU who who is now the boys pediatrician and specializes in asthma/cf/other breathing complications. He has been life changing for us and we believe he will help keep P out of the hospital to catch any sickies SUPER fast with meds asap and has really taught us specific signs/symptons to be on the lookout when Preston starts to get sick. We were so used to how P sounded WITH a trach and now we have learned how he sounds WITHOUT it and its been a learning curve we didn't anticipate. Things are looking up which is great! I am savoring every minute of this age yet its been the most challenging in some ways. It has also been the easiest in other ways. I imagine this will be the case with each age! Regardless, I am reminding myself this is going all too fast and we plan to have a fun summer with lots of activities before school starts back up.

Please pray for us if you don't mind. Safe travels, easy stay at RMH, and a successful O.R. visit for P would be appreciated. We plan to contact Dr Andrews (P's plastic surgeon) while traveling home to get him on the surgery schedule ASAP for his neck revision so he can swim safely this summer! Fingers crossed this can happen very soon! I am ready for every step of this 'trach journey' to get behind us and have 100% closure.

Here is picture of the boys before our fun date recently with our friends the McNeils at Cosmic Jump and Jason's Deli for dinner. They are growing so fast and are officially ready for summer with their shorter haircuts!