Monthly Archives: March 2014

Recovery Road

Today is Day 4 of recovery.  If you’ve been following us on Facebook, you will know that it’s been a rough couple of days.

Sleepy BabyWe got home on Wednesday just after 10 am and Braxton played for a little bit and then settled in next to momma on the couch for a nap.  He was extremely sleepy most of the day, but he was also very restless.  He would sleep for about 15-20 minutes at a time, wake up, try to get comfortable and then drift off to sleep again.  Thankfully, he slept alright through the night only waking twice in pain.

Yesterday, I thought he was starting to look better.  He ate a little bit of Yogurt and Applesauce which I’m sure helped his throat.  He even played a little bit more than Wednesday, but he was still very sluggish and lethargic at times.  I decided to stop giving him the narcotic the doctor gave us and just try to manage his pain with regular Tylenol and Ibuprofen.  I felt like the narcotic was making him so sleepy even though he has had no issue with it when given after other surgeries.  I didn’t see an immediate improvement, but I gave it some time to get out of his system completely.  He had another good night Thursday and even slept late today!

SleepyWhile today has certainly been his best day, I’m still concerned about his low points.  He will play and then just lay down wherever he is and try to fall asleep.  I will move him next to me on the couch and he sleeps for a little while and then he wakes up like he doesn’t know where he is.  He looks very out of it and hasn’t even had the narcotic in over 24 hours at this point.  I have placed him on my chest and he will just sit there for quite some time without even falling asleep.  Occasionally, he does sleep and I just hold him until he wakes up. I’ve never seen him like this.


Our ENT’s office called earlier today to check in on him and I told them that he seemed pretty lethargic and asked if it was out of the ordinary.  The nurse didn’t seem to worry since he hasn’t had a fever and is having sufficient wet diapers.  She also warned that days 5-7 are the worst for recovery as the surgery site begins to heal and scab over.  So, it looks like we are in for a fun weekend.  The nurse said it’s not uncommon for children to complain of ear pain, neck pain, and just generally feel uncomfortable.  This is the point where it is frustrating for me to know that Braxton cannot express this pain and discomfort.  He has been so sluggish and I am fearful of keeping him on the narcotic only to make him more tired and out of it.  There are times when I can tell he is hurting by the face he makes so I give him extra cuddles and medicine if it’s time.  So, I’m thankful to have *some* clue, but I really wish it wasn’t a guessing game and he could tell me exactly what is going on.  Poor baby. 😦

This evening, Braxton is looking more like himself and playing and even laughing more which makes me very happy.  Braxton ate 8 ounces of applesauce today…yayyy!! It’s so nice to see a smile on his handsome face again.  I’m hoping the next few days won’t be so bad, but I’m preparing for the worst.  This is definitely the toughest recovery period of all the surgeries he’s had.  Even his hand surgery wasn’t this bad.  Keep praying for my sweet boy.

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A Rocky Start to Recovery

Today has been rough.

Our ENT did warn me that the recovery for this surgery is not easy, and I certainly underestimated exactly how tough it would be.

Compared to the other times we have been here, the surgery part was a walk in the park. Brax was in and out in under an hour! The past surgeries and procedures required Braxton to be under for up to 4 hours.  In the past, we can usually wake him up in the recovery room pretty easily, and he goes right home and is pretty much back to himself.  That was not the case today.

RecoveryWe finally got up to our room at about 9:30 this morning and Braxton was awake, but pretty drowsy and lethargic.  The nurses did all the intake vitals and started his IV and medications.  By 10 am, he was asleep again.  Around noon, the nurse came in and said it was ok for me to start giving him clear liquids and if he did well, we could move forward with his blended diet.  She also said I should try to wake him up and see if he would take anything by mouth.

I was able to sit Braxton up, but he would not hold himself.  He just sort of flopped over and the oxygen/heart monitor started going crazy thinking he wasn’t breathing.  I tried to drip some water on his lips because they were already so chapped.  Braxton refused.  The nurse said to try some applesauce and I tried teeny tiny bites and Braxton refused to swallow.  He just held it in his mouth and tried so hard to spit it out.  I stopped trying and told the nurse I would just keep him hydrated with his g-tube.  I also asked for a wet washcloth to at least wet his lips with occasionally.  She was okay with that plan. (Duh, right?)

Drowsy BabyI ordered Braxton some Apple juice and Chicken broth from the cafeteria and he held that down pretty well.  But, he still would not wake up.  I tried to sit him up and every time he just flopped back over.  I have never seen him so groggy.  Around 3 pm I sat him up again and his chest and back were on fire! His blanket was only covering him from the waist down and all of his limbs were normal temperature.  I called the nurse in and she took his temp.  It was 102 degrees.  She called our ENT to let him know that Braxton had spiked a fever and was excessively sleepy.  Our ENT was not too concerned about the sleepiness part and said just to treat the fever for now.  I finally gave Braxton his homemade blend and although he wasn’t awake, he kept it down.

I just sat here watching Braxton sleep and could see he was in so much pain.  He was snoring very loudly and every few minutes he’d whine and go back to sleep.  So heart breaking to see him hurt and not be able to do anything about it.  The nurses kept him on Tylenol and Ibuprofen.  The doctor said since he was so sleepy that it would not be a good idea to give him the narcotic which would only make Brax more sleepy.  😦

I'm awake!Finally, just before 6pm, Braxton woke up.  Really woke up.  He had some life back in him and he started swinging his pacifier around and grabbing the cord from the pulse ox monitor swinging it back and forth.  I did happen to try to let him have some sips of water and he took 2-3 sips from his Honey Bear Straw Cup.  Then, I tried a few bites of applesauce and surprisingly he ate about half an ounce.  I could tell it hurt him to swallow, so I didn’t force him.  I just wanted something to coat his poor throat.

He stayed up after that and we played and snuggled.  I pulled out his trusty iPad and he played some of his favorite games.  It’s 8:30 now and he’s back asleep.  I was really starting to get concerned with him sleeping so much earlier, but after seeing signs of what is normal for Braxton, I think it’s ok for him to rest again.  Well, as best as he can with the nurses coming in every so often to check vitals and give meds.  I just noticed that he doesn’t seem to be snoring as much as he was earlier and the congestion has gone down a little so his breathing isn’t rattling.  Thank. Goodness.


One thing is for certain, I have my work cut out for me this week helping him recover and stay comfortable.  Dad had to leave for work early this morning so I’m going it alone this round.  Please continue to keep Braxton in your prayers.  I know this recovery is going to take it’s toll on my poor baby.  But, I know he is going to be SO much better when this passes.  And so will I! To finally be able to sleep and not worry about my kid not breathing in the middle of the night will be such a relief.

Your thoughts and prayers are so appreciated.


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Surgery Day – Tonsils & Adenoids


Well, here we are again sitting at Dell Children’s Hospital. Braxton checked in at 6 am for his Tonsillectomy and Partial Adenoidectomy.

Everything has gone pretty smoothly this morning.

It’s too bad we didn’t see this anesthesiologist sooner! He read off Braxton’s list of symptoms and halfway through he stopped, looked up at him and said “Is he a Rub-” and I said “Yup, Rubinstein-Taybi” thinking he would mis-pronounce it. The doctor went on to say that was going to be his guess based on the list of symptoms. He seemed surprised when I said we didn’t have an official diagnosis until Brax was 21 months. Crazy that now we have a diagnosis, we are running in to doctors left and right who are familiar with RTS! Where were they at the beginning of this journey?!

After speaking to the nurses, the anesthesiologist, and the ENT we had a little time for smiles and snuggles.




Braxton just went back with the anesthesia nurse. Our ENT said the whole procedure should only take about 45 minutes to an hour. I will update this post with info and also share on our Facebook page.

Thank you all so much for your continued prayers and support.


///UPDATE 8:07 am: ENT just came in and said he’s all done! Braxton did really well. Doc said he removed the tonsils and about 80% of his adenoids. He also replaced Braxton’s ear tubes. They are moving Brax to a recovery room and waking him up. We should get to see him soon.

///UPDATE 9:37am: Dad had to leave for work so I waited until the nurse came and said it was ok to see Braxton. He was still asleep in the recovery room when I arrived. I have him some hugs and kisses trying to wake him but he wouldn’t really open his eyes. He was much slower to wake than he has been in previous surgeries. But, he did finally wake and the nurse said his Oxygen level was still dipping down to the 80s so we had to wait for him to maintain a good level before going up to our room.


About 15 minutes later Braxton was keeping his eyes open and his Oxygen level was 95-100 so the nurse let us come up to the room. Another vital check and we are getting settled. Brax is still pretty out of it, with a semi-glazed over look. Not many smiles out of him just yet, but his vital signs are good and I’m sure he will be just fine. I will keep you posted!


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Preparing for Surgery Number 5

Tonight we are preparing for Braxton’s 5th surgery.  He is having a Tonsillectomy and Partial Adenoidectomy tomorrow morning.  We are scheduled to check-in at 6 am with surgery at 7:30 am.

For the first time ever, we don’t have 5 other things scheduled with it.  I did try to get a good dental cleaning scheduled, but our dentist wasn’t available and I didn’t want to reschedule the T&A.

In December, we went for Braxton’s Sleep Study to check for sleep apnea before we proceeded with the surgery.  We received our results in January which showed moderate obstructive sleep apnea.  We already knew his tonsils were quite enlarged, but this showed that they were also affecting his sleep much more than we originally thought.  Braxton had 13 apnea episodes during the sleep study and the longest was up to 23 seconds of Braxton not breathing! Anything over 6 is considered “mild” apnea. Although this seems very high, the Sleep Medicine Doctor said that he has had other cases where the episodes were in the triple digits which meant the children ended up with a tracheotomy.  Either way, Braxton’s apnea is enough of a concern to do something about it.  The first step is to remove his tonsils since we know they are already quite large.  The sleep doctor is confident this will help Braxton sleep better.

After the surgery, Braxton will have another sleep study in a few months to make sure the Tonsillectomy helped resolve the apnea.  T&A is not an easy surgery though.  The recovery time is at least 2 weeks and the greatest concern is excessive bleeding.  I did meet another mom who said her little one got pneumonia after having his tonsils removed because his lungs could not handle the amount of air being taken in after removing the obstructive tonsils! Our ENT has already said that Braxton is going to stay overnight so he can be monitored (mainly due to the risk of bleeding). Typically, kids are not released until they show they are able to drink fluids to keep from becoming dehydrated.  Since Braxton has a g-tube, we do not have a risk of dehydration.  So hopefully our hospital stay will not be more than an overnight.  I am also worried about Braxton regressing with his feeding.  He has come SO far and is eating SO well, I hope this surgery doesn’t bring back his oral aversion and prevent him from wanting to eat again.  We shall find out in due time. Braxton is a tough guy and I’m sure he will do well.  Plus, he has his cape from Tinysuperheroes this time, so he has the power of an entire Super Squad behind him!

Super Braxton!

Please keep Braxton in your thoughts and prayers tomorrow as he undergoes his surgery and recovers here at home.  As always, I will start a new blog post in the morning to keep you posted and I will also post updates to our Facebook page.



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