Thursday, September 4, 2014

A glimpse of reality!

Today has been the best day and he hasn't even been decannulated yet! 

This prayer from Reid the other day was heard LOUD AND CLEAR! Now when Reid says, "Talk to me brudder, please talk to me!" (broke my heart the first time I heard him say that). As of today, there will finally be that chance for Preston to speak. Praise God! 



Where do I start- Capping has been 110% successful. Dr just rounded on him and plans to take out the trach are set for Saturday.  They even throw a party on the floor for him. I love this place! The nurses are just as excited as I am. Tim flies out tomorrow night (i am beyond excited about this). This will also help transition us from RMH to hotel this weekend. My in-laws and sister in-law have Reid all weekend. I have to admit that I haven't had a moment to miss him much with all of the hustle and bustle here with things moving so fast for Preston. I can't wait to see Reid's reaction to Preston when he sees his trach is gone. They play a game called 'Trach change' and they both lay on the floor and we pretend to change P's trach (like we normally do) and then Reid lays down and we tickle his neck and he loves it. I never wanted Reid to feel left out with all of P's trach cares so we made him apart of everything from day one and now they have made a game out of it. 

My folks get back in town next week to keep Reid till I get home. I am thankful for technology so I could face time with Tim and have him be apart of the capping this morning. Preston is sating 98/99 and has no strider, no retracting, no laboring of any sort. We are on our way to TRACH FREE FOR P. My shirt has a whole new meaning to me :)

Here is a glimpse of our new normal. I got to hear him laugh for the first time- a REAL out loud laugh today. First sneeze was funny and first cry was shocking. It just dawned on me today that I will fly home next week with my little man being apart of the NAKED NECK CLUB. He will sport his adorable tan line on his neck. No more strangers staring at his neck or asking me about it (you would be amazed at the balls some people have)…..especially while traveling. The suction bag celebration is next- that thing is going somewhere FAR FAR AWAY! LOL We can remove the ambu bags from our strollers and cars and his room. Bath time will be SO MUCH FUN - my boys don't even realize you can fill the tub past their little hips and actually splash! Swimming next summer will be in full effect. The list goes on and on. 

The hardest part will be saying bye to our nurses. That will be a post for another day. I don't want to rain on such a wonderful parade today. Our nurses have become family to us. I may need to increase my zoloft for that transition LOL LOL The boys start preschool in October and I DREAMED of them going to school with Preston trach free. No more Jessica going with him everywhere. I will drop them off and they will be on their own and not a worry in the world about his health/emergency situation will be on the fore front of my mind. Church is at the top of our list and we already have one picked out to try with dear friends who also have twins. 


Here is what we did today! 

Our RT is awesome and put this fun play mat on the floor for him (he has been on it ALL day) because he has to stay on monitors 24/7 to ensure his sats don't drop while being capped. He passed out this morning after a busy morning of learning to breath 100% on his own. 

Eating a grilled cheese (he has had 4 of these since arriving) and sporting his fun fireman hat from Kelley and Kaydence.  We had a FUN visit from my dear friend Kelley (who i met last summer at RMH)- they came to Cincy for a dr appt for Kaydence and brought me a sub sandwich. REAL FOOD was heaven and the company was even better! I also had the thrill of giving her all of our trach supplies they can use! No more suction caths, hme's, or trach ties. I have 3 huge boxes for her at home that I plan to give her too! FEELS SO GOOD! 

fun mail we got from a dear high school friend (who is also a mom to multiples)

Eating like a king before we capped him

Up close pic of him napping- was zonked by 11am

Playing tonight before we watch Cars at bedtime 


Wish us luck on capping day #2 tomorrow. Prayers for Tim's safe travels and no hiccups would mean a lot to us! May the day we have awaited since Preston was 8 weeks old get here quickly. 

No comments:

Post a Comment

Sleep study complete!

April 28th feels longer than 4 months ago when I last posted an update. I promised myself to not think about returning to Cincy for the slee...