Next Wed..

This week has been good.  We spent alot of time with Nana and Pop John.  It was so nice to get out of the house not just once but several times.  The boys really enjoying seeing the sunshine and just being in the car.  They also enjoy the park.  We are going to try and keep going at least once if not more a week.  We are also taking Braden to the park for PT.  He didn't love it this time but I am hoping he will enjoy it as time goes on.  He knows when he has to work and the difference between play and therapy. :-)  We have discovered that if I hide from Braden he is just fine.  It's when he sees me the water works come on.  He is so stubborn and really only wants to do things on his terms.  Grayson has been doing great.  The little guy has already learned how to roll over with his helmet on and is almost able to sit on his own.  He is super strong and it's amazing how fast he is developing.  We can hardly wait till the boys can actually play together.  Braden has seemed more interested in Grayson lately.  He is touching him and smiling.  It's really sweet.

Next Wed.. is Braden's next visit to the OR for granulation removal and to check the healing progress of his airway.  So far Braden seems to be doing well.  Hoping no surprises and continued progress towards trach removal.

Afternoon at the Park

Braden had a wonderful time at the park.  In fact, we spoke to his PT about meeting there for therapy the rest of Oct. or if the nice weather permits longer.  She thinks it would be great for Braden.  So we are all set to have fun with PT at the park starting next week. 

Just so everyone can see the boys look like me too.

Me at 2 years and 1 years old.  

This is Stephen at 5 months old

This is Stephen at 2 years old

Details on today's stent removal

Much to our surprise today was just like a scope and leave day.  Before leaving for the hospital this morning I texted Dr. G's Nurse P Kimberly to ask a question.  When she replied back to me she let us know that we would not have to stay overnite for Braden's procedure.  That was such great news.  So at about 11:45 we headed to the Vandy.  We went back to the pre op and had a significant wait.  They were a little backed up so Braden didn't go back for his procedure until about 3:30.  The stent removal and granulation removal went very quickly and smoothly.  The Dr. said everything looks good and we will go back in one week for more granulation removal.  Which will be just like today in and out same day.  Takes about the same amount of time as when Braden had bronch scopes in the past.   It's so exciting to be just one step closer to getting Braden's trach out for good.  Now I need to get Braden some dinner.  Poor baby hasn't eatten all day.  The Dr. did ask that we tube feed Braden till next procedure.  Braden's swelling interferes with his swallow and they do not want him to aspirate.  For those of you who don't know Braden aspirated his butterscotch pudding a few days ago.  This has never happened before but apparently can happen for a short time after this type of surgery.  So hopefully this issue will correct itself once Braden has healed.

On our way home. Come back in a week to check progress.

On our way home. Come back in a week to check progress.

Everything looks good. Yea!! They are taking Braden to recovery. Back in a few weeks to check progress and clean up granulation.

Braden is now in the OR

We are still in pre op waiting to go back. They are a little behind today. Braden is asleep and handling things well.

A correction

I have to make a correction about the Rigg's family.  Lynzie and Mason were both born at 26 weeks however, they are not twins.  Mason will be 5 in Dec. and Lynzie will be 3 in Nov..  They also have a website on caringbridge.  It's www.caringbridge.org/visit/lynzieriggs.

Thanks and we look forward to coming home tonite safe and sound.

I also want to say Congratulations to the Coleman family on the arrival of their son Alexander.  Grayson is so excited to have a new playmate. :-)

Great news we will not be spending the nite at vandy. Procedure is still set for 2:30 pm.

I should be sleeping...

I know tomorrow is a big day for Braden and I should be asleep.  But I have to give Braden pedialyte and get his veins plumped up for tomorrow.  So I am still up and getting things ready.  So I decided to post a few cute pics from this week.  Also, wanted everyone to see Grayson's helmet.  He didn't like it at first but he was also exhausted and needed a nap.  He is doing just fine so far with it.  Minimal complaints and he's actually sleeping.  Which they told us he probably wouldn't.  They just don't know our Boys.  Both are really good when it comes to sleeping.  I am thankful but I still get woken up by Braden needing to be suctioned and Grayson's schedule being messed up.  Grayson is almost back to normal and Braden hopefully after he gets the stent out will dry up just enough to minimize the suctioning.  Please keep Braden in your thoughts and prayers tomorrow.  We really are hoping this surgery is the one.  Thank you all for everything.  Braden received some great books and gifts from some friends in East TN.  We are excited and I know that Braden will love having new stories read to him over the next few days. 

Stent removal

Just a reminder that the stent removal is the biggest part of this whole process.  Once it is removed we will be watching and praying that Braden's airway remains open.  That his scaring does not hinder the size of his airway.  Braden's airway was a 1 and they have widened it to a 5.  The hope is that we end up with a size 4.  Just wanted to give you details.  We appreciate everyone's continued support and prayers.  

Also, Facebook is such an interesting thing.  I have connected with several of my old classmates.  In doing so I found out that Danny Rigg's family had 26 weeker twins a Boy (Mason) and Girl (Lynzie) that are about the same age as Braden.  Well their daughter Lynzie  has bilateral Wilms tumors, meaning she has tumors on both her left and right kidneys.   She recently was admitted to St. Judes Children's and they have begun a plan of treatment.  Now her and her family are back home in Carville, La..  Please keep their little girl in your prayers.  She reminds me so much of Braden in her pics.  She is so smiley and happy despite all she has been going thru.

Stent removal

Braden's stent removal is scheduled for this Thursday Oct. 21st at 2:30 pm. 

Anxiously waiting

Today is officially two weeks and time for Braden's stent removal.  I have sent a message to our ENT to ask when Braden will be scheduled.  Braden has been having more secretions since surgery and seems to produce alot of saliva.  Which makes him junky and need suctioning alot more often.  So we have had sleepless nights since his arrival home. 

Braden and Grayson are both doing really well.  Braden seems to be recovering nicely from surgery.  He is definitely glad to be home and enjoying every minute of it.  Grayson is having a tough time adjusting back to his home schedule.  But he is starting to come around.  He has gotten sooo big.  He is wearing 3-6 mth and 6 month clothing.  He is long legged which is the exact opposite of his brother.  He is so strong and doing things that Braden just couldn't do at this age or even at a year old.  It's a real reality check as to how far Braden has come over this past year. 

We are so limited on outdoor activities.  So we decided to take the boys to a pumpkin patch this weekend.  Braden enjoyed discovering something new and he actually did pretty well with touching the pumpkins.  He loves things that are round in shape.  He also didn't freak out over the hay.  He was mildly aggitated by it but that is progress. :-)

We are HOME hooray!!!

Well as you can imagine Braden and I are really exhausted from our hospital stay.  I can only imagine how much tougher this would have been had we done the single stage surgery.  The benefits of us getting to have a double stage are well worth coming home with the trach.  In two weeks we will go for an overnite stay to get Braden's stent removed.  This will be the true test to see if this surgery was truly a successful one.  The stent is actually holding the airway reconstruction up and as Braden heals the grafting will be able to hold open Braden's airway on it's own.  Every two weeks they will check the progress of healing and remove any granulation tissue that has developed.  This process will be repeated every two weeks until the healing is complete.  Then the trach will be removed.  The removal process will involve a few nites stay at the hospital.  They will evaluate his breathing with the trach capped closed.  They will also do an overnite sleep study to evaluate his breathing during the nite.  If everything works out as planned that will be the final step. 

Braden was so tired of being in the hospital that on the way out he was doing his happy dance.  There were very few smiles out of him during his stay.  For a while there he was literally sleeping with his eyes cracked open.  Poor baby... I have heard many people refer to their long term hospital stays being like the NICU.  I didn't feel that way at all.  It's completely different because Braden is much stronger than he was in the NICU.  He is also old enough to break your heart.  Being the Momma I know when Braden is just upset because he is tired or just doesn't want something done.  I can tell if he is really in pain or not.  So even though it was hard to see Braden overly tired or have to hold back the tears when getting his IV's put in I was able to handle it.  Knowing that I could provide the things that he loves to take his mind off things is very helpful.  We couldn't provide much of that in the NICU.  I didn't feel helpless this time.  I was able to stay with him round the clock and that was a blessing.  I was involved with his care and that too was helpful.  Which we did do some of that in the NICU but it was different.  Different because we know Braden so much better now.  Seeing him pull thru such difficult times continues to amaze us.  Not to say it isn't stressful on all of us but it's made us better.  

I have to stay I miss Grayson terribly.  We are so thankful that Nana and Pop John were able to take care of him.  Stephen was able to visit the hospital and Grayson while still being able to work.  He also worked on Braden's room.  When we came home the house was cleaned and all the laundry was done. :-)  So we were able to rest for a bit.  We also visited Grayson on our way home.  Nana is going to keep him for a few days so I can catch up on sleep.  Can't wait till he is back home and things are somewhat normal again.  But I have to say the appt. schedule for both the boys over the next 6 months is going to be CRAZY. 

I know many of you are wondering if we got your ecards.  So we thought we would list the friends and family who's cards we received.  If your name is not on the list please know we appreciate your thoughtfulness and just because we didn't get your card doesn't mean we don't know how much you care.

The order is random because I am tired and only up because Braden needs one more tube feeding before bed. lol :-) 

Layne Petree :-)
Ralph and Wanda Sparks
Kirk and Mary Beth
Valerie and Terry Higgins
Peyton Higgins :-)
Melissa, Dan and Chase :-) Duran
Rachel and Brandon Dilldine
Brenna
Dana Mayberry
David and Jane Burgner
Corbin Harris :-)
Connor Larson :-)
Aunt Leslie
Daniel and Jessica Stultz
Ayden Wilder :-)
The Coleman's
Cassie Hester
Brandy Thorp
Brenda Hart
Amber Campbell
Aunt Paula
Melissa Butler
Johnathan Bailey
Alina Logan
Ranee Lavigne
Holly, Marty and Olivia
Tom and Vickie
Grandma Leaveve and Ken
Sue Dale
Hannah Fratt
Katie Plauche-Morris
Martha Trevathan
The Layman's - Craig, Neisha, Taylor, Emma and Caiden
Jedonne Given
Amy, Brian, Brianna and Nicholas R.
The Butler family
Gerri Whittimore
Pam Amos
Lori
Jesse and Levi :-)
Mary Farris :-)
Dax & Ty :-)
Freshour family
Judi Beadle
Ashley, Jason and Samantha

Thanks again to everyone for all your support and prayers. 

We are home. Both need a nap and then we will try and catch up on what we've missed.

Its amazing how much stuff you wind up coming home with from the hospital. As soon as pop john gets here we are going home.

Today I do the trach change and Braden will also have a swallow study. Then we get to go home. Yay!!!

Sunday Update

Well, not too much to update today.  Braden has had another good day today.  He was able to get out of bed to play and Stephanie was able to take him downstairs and walk him around.  He really loves to see other kids so he had a great time. 

Braden is completely off of the extra oxygen and doesn't have to be monitored for his heart rate and oxygen levels constantly.  He is just watching his videos and making sure his nurses don't too anything to him!  We have been really lucky this entire week.  The nursing staff has been great.  They have been very helpful and friendly the entire time - it makes such a difference when you have to stay for any extended period of time. 

We are still hoping Braden will get to come home tomorrow.  It may be Tuesday but hopefully tomorrow.  The doctors want to see us do a trach change before we leave.  We will let you know when we hear something.  Here are a couple of pictures of Braden watching videos tonight - you will see he decided to get ahold of the DVD player and start pushing the buttons!  PS He doesn't like the flash very much as you can see in the second picture.

I believe we are looking at monday or maybe even tues before going home. The feeding therapist may come by and we have to do a trach change before hm.

Saturday's Update

Braden had another pretty good day today.  Unfortunately his IV came out last night but they were able to get another one in today.  They were able to sedate him again but it doesn't take away all of the pain.  Stephanie said when they were doing it you could see Braden tense up and in her words, "just take it".  It is amazing how tough he is and how much he has gone through. 

They did find out today that Braden has a couple of infections.  It is nothing that they are worried about and it is nothing that should affect him going home - they will just treat them. He did get moved out of the PCCU today.  We are hoping that this will mean he will be able to get a little more rest - in the PCCU they were checking on him all of the time and he didn't get to rest much at all.  The doctors want him up and moving around as soon as possible so hopefully he will be playing in his room tomorrow. 

Stephanie and I did get a chance to go out to dinner tonight for the first time in a long time.  Mom kept Grayson and Dad came in to watch Braden so he wouldn't be alone.  It was nice to be able to get out of the hospital setting together and know both kids were doing good. 

There is a slight chance Braden will be discharged tomorrow but we aren't holding our breath since it is the weekend.  I will keep everyone posted and let you know as soon as we know something.  Thank you again for all of your support and prayers!

We have been moved out of the PICU to Rm 7534. Braden has been napping since 2 and never woke up while changing floors. Poor kid was so tired.

Trach change went great. So thankful and now we are hoping he will be transferred soon out of the picu.

Whew the iv is in and with the help from sedation and braden being well rested things werent so bad this morning. Hoping trach change goes well.

Still waiting for a new iv. They did say they can sedate Braden again so it wont be so rough. It will help him on trach change as well.

First iv tries were unsuccessful. Braden did get a good nites sleep so he recovered much quicker. Now we wait. First trach change this am.

Oh yeah they are going to let him sleep and get iv therapy to do iv in morning. So at least he gets some rest.

I am so frustrated this poor kid finally fell asleep again and what happens? The stinking IV came out again. He is so tired and yet again no sleep.

Thursday/Friday Update

Sorry that I missed being able to post yesterday - it was my first day back to work and the week finally caught up with me - I was so tired when I got home I didn't get a chance to post.

Braden has been steadily progressing both yesterday and today.  His swelling has gone down and he seems to be feeling quite a bit better. Stephanie has been able to get him in his PJs and he has been able to take his No-No's off while he is awake.  He did have a rough afternoon today with a few episodes of gagging and not being able to get much rest.  It seems like everytime he is getting to sleep - a doctor or a nurse is having to do something to him.  He fought through it like a trooper and is doing good.  He did have to get another IV today because his first one came out.  Luckily the Dr. allowed Braden to be sedated for the new IV to be put in.  His veins are so bad that it is horrible to try and watch them stick him.  Even sedated he put up a fight though!

Dr. Wootten plans on doing a trach change tomorrow morning.  If that goes well and Braden continues to progress he should be coming home on Monday.  We will keep you all updated over the weekend on how things are going.  I did get a couple of pictures of Braden just chilling out watching videos tonight - you can see he decided to kick his feet up on the rail and just relax. It is so good to see him smile and be himself again - he will let you kiss him and he even is giving a few out too!

Hooray they got Bradens iv in on the first try

Braden is finally getting a nap. They agreed to give a mild sedative before sticking for an IV. Our nurse said the girl doing the IV is really good.

Poor little Braden this is the second day he hasnt been able to nap. His iv came out and its going to be awful putting another one in.

We are still in the pccu but have moved to room 5312. No issue with Braden. He is doing great.

Braden has been smiling alot and getting a little restless. He is off the drips and on regular feeds + tylenol. He is looking better.

Braden is doing well this morning. His swelling has gone down. He is even smiling while watching his videos. He will be put on bolus feeds today.

Wednesday Update

Today was another long day.  Grayson had his doctor appointment this morning and we ended up waiting over an hour to get in.  Finally see the doctor and he tells us what we were expecting - he needs a helmet to help shape his head.  Stephanie went with him and Nana to get fitted for his helmet while I stayed with Braden.  This also gave Stephanie a chance to go home, take a shower and pick up some things for Braden.

Braden has been doing good again today.  He is more alert and seems to be doing pretty good with the pain.  They say the area where they had to harvest the rib will be the most pain so as he is beginning to move he is feeling it more and more.  When I was with him today he just wanted to hold my hand and watch the IV pump - the lights and scrolling letters kept him occupied.  Stephanie was able to bring his dvd player and some Veggietales - that was the ticket.  He has been watching his videos and giving them trouble ever since.  He has been scooting in the bed, trying to get his legs over the rails and he really wants to get to his stomach.  Once he gets a little more pain relief I have a feeling he is going to want to get out of bed and get going. 

Dr. Wootten did remove the drain from his rib incision and hopefully they will be able to remove the drain from his neck tomorrow.  The Dr. was pleased with his progress.

Thank you all again for the Ecards - he got a huge stack today! I read some to him this afternoon and Stephanie read some more to him tonight.  He loves the pictures and to be read to so it is a perfect combo to get him through the day. Hopefully we can get a few pictures of Braden tomorrow or the next day.  His face was really swollen today so we decided to wait till it goes down some but here is a picture of Grayson getting fitted for his new helmet!

Thanks again for all of your thoughts, prayers, Ecards and words of encouragement!

Dr W came by and removed B's chest drain. Will remove the neck drain tomorrow. He is pleased with B's progress.

Braden is awake and watching his veggie tales. He will need more pain meds as he becomes more alert. But for the most part seems comfortable.

Braden wants to thank every for all his ecards. His daddy read todays delivery and there were many.

Braden had a decent nite. He is tolerating his feeds and being weaned off sedation. His ribs still cause him pain so he still has to have morphine.

Tuesday Update

Not too much new to update tonight.  Braden did come off of the vent today and did great in the transition.  I was in the room when they unhooked him and he didn't miss a beat.  It was such a relief seeing him not be affected when he started breathing on his own again.  He has been waking up more and more as the day went on.  They want him to slowly start waking up and letting the anesthesia wear off.  With that comes the pain though.  They are changing his pain meds and schedule to make sure he is comfortable but awake too.  He opened his eyes quite a few times today but you could tell he didn't feel good at all.  Hopefully he will bounce back quickly and the pain will subside. 

Thank you all again for all of your support and prayers.  We enjoyed reading some of the e-cards Braden got today - they only print them once a day so we only got a few but we know from talking to people, he has alot more on his way.  We are going to read them all to him.

Tomorrow is Grayson's Dr. appointment to see about getting him a helmet to shape his head.  We think this is only a consult but we aren't sure.  We aren't too worried since the CT scan showed his head shape is only cosmetic.  We will keep everyone updated again tomorrow.

Thank you all again!!

Wishing i could pick braden up and give him hugs. He is doing well but has pain at times. Still under mild sedation so he will sleep good tonite.

Braden is off the vent and doing well. He is still getting 30 percent O2 and is still sedated. They are switching him to a new pain med schedule.

If you would like to send braden an ecard go to vanderbiltchildrens.com click ecard and enter rm no 5420. The card will be delivered to his rm. Thx

Braden is looking good this am. He had a good nite and has already tried waking up. He may come off vent today and get woken up.

Surgery Update

We are happy to report that Braden's surgery went very well today!  It took a little longer than expected but he did great and the Drs. were very pleased with the surgery. The surgery started about an hour late and took almost 6 hours.  We were also surprised to find out that they decided to do the surgery where they left Braden's trach in.  This will allow him to recover without putting so much stress on his body and he will only be in the hospital approximately 1 week for this first step - not the month we had mentally prepared for! I think the Dr's. expected us to be upset the trach wasn't coming out but we were more than fine with it - whatever they feel best for Braden was fine with us. We also feel like this way won't be near as difficult on Braden.  Braden is resting well in the PCCU tonight.  He just looks like he is asleep - not much swelling at all. He will be sedated and on the ventilator tonight and kept somewhat sedated for the next few days.

They harvested part of Braden's rib and used it to reconstruct his airway.  They did have to widen both the front and the back of his throat but were able to get it to a size they were very pleased with.   They will do a trach change on Saturday and if all goes well, Braden will be discharged next Monday.  Right now there is a tube in his airway holding the area they fixed today in place.  It will be left in place for approx. 3 weeks then they will remove the tube through his mouth.  At that point the throat will swell and begin to do its final healing.  He will go back every week or 2 for follow-up procedures and to see how the throat is healing.  There will likely be some removal of scar tissue (which he has had before) for 2-3 visits until the doctors feel everything is in place.  At that point they will do the final procedure to take out his trach tube and stitch up the opening - he will be in the hospital overnight for that procedure just to make sure everything goes well.

We are extremely lucky to have the Dr's. we do for Braden.  Dr. Wootten and Dr. Goudy have been excellent the entire time.  Alot of the time at the beginning of the surgery today was just planning so they had a plan before they even did the actual incision.  They walked us through everything they were planning and gave us complete confidence in preparing for his surgery.  

Grayson did very well having to be at the hospital all day today - he loves people so he was constantly entertained.  We can't thank you enough for your thoughts and prayers today.  You don't know how much we appreciate it.  We have such a great group of friends and family to support us through these difficult times.  Please continue to keep Braden in your prayers - like the Dr's. said tonight - now it is up to Braden's body to heal properly.  

Stephanie did get a room on the PCCU floor so she is hoping to get a good nights sleep tonight.  Since Braden is on the vent and sedated she felt comfortable leaving him alone knowing she is just around the corner.  Sorry if the post was a little scattered - I'm tired tonight! We will keep you all updated through Facebook and the blog.  I plan on updating on Braden's progress again tomorrow. 

Thank you all again for your thoughts and prayers. 

Braden is doing good and they are sewing him up now. Will be talking with the dr shortly.

We have been moved to a smaller waiting room. Things are still going well. This is about a 5 hour surgery so hopefully not too much longer.

5:20 pm update - braden is continuing to do well. Next update in approximately an hour.

3:48 update all is going as expected. Starting throat incision. Next update in an hour or so....

Braden just went back into surgery at 2 pm. He was taking a nap so hopefully he didnt wake up.

Sitting in the waiting room at Vandy. We had a nice weekend and a fun morning. Thank you for the prayers. Surgery should be done around 6 pm.

Sitting in the waiting room at Vandy. We had a nice weekend and a fun morning. Thank you for the prayers. Surgery should be done around 6 pm.