Tag Archives: enlarged tonsils

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.


Filed under Family, Kids and Family, Life, Special Needs Child

Appointment Recap and Surgery #4

This has been quite a week for us! Braxton had 3 follow-up appointments and is having surgery this Friday.  Definitely keeping me on my toes!

Monday, he actually had 2 appointments.  First, we saw the Dentist for a regular cleaning and check-up.  As we waited, Braxton became pretty fixated on the aquarium. Aileen was with us and she put him up on the chair to look at the fish and he was just in complete awe.  He really watched them and turned his head to figure what the heck they were doing and where they were going.

Once we got back to the room, the hygienist came in to do his cleaning.  He sat in my lap and they had him lean back and at first he didn’t fight her, but then he got pretty upset and starting screaming/crying.  It was over pretty quick though and he calmed down.  He did the same when the dentist came in to take a look at his teeth.  Almost immediately after the dentist looked in his mouth, Braxton fell asleep.  The dentist said his teeth look great and he was surprised that he didn’t have excessive tartar buildup since that is so common among tube fed children.  Maybe it’s all that chewing on wood he does that keeps his teeth clean? haha jk. Sorta. We did address that and the dentist said there is no real harm, but obviously not to encourage it.  Overall, a pretty good visit and we go back in a few months.

Kisses from sister for being a good boy

Kisses from sister for being a good boy

After the dentist, we followed up with Braxton’s hand surgeon.  It’s been about a year since Braxton had his surgery to cut the webbing of his ring and pinky finger on both hands.  He has healed very well and is using his hands much better. The doctor took a look at his hands and said everything looks good.  We have to continue with yearly checkups because as Braxton grows, the skin between his fingers may not grow as well with him.  If the skin doesn’t grow with him, it might be necessary to repeat the surgery and continue cutting back and creating the natural pit between the fingers so he has functional use of his hands.  It may be several years before anything more needs to be done and doc was happy with how he’s healed.  More great news, yay!

Tuesday, we saw the ENT for a routine follow-up.  The doctor checked to be sure Braxton’s ear tubes were still in place, and they are! He had tubes placed in April of 2012 for chronic ear infections, and surprisingly they are still in there.  The doc said that often times tubes fall out after a year. Let’s hope they stay in so we don’t have to worry about ear infections again! Then, we addressed Braxton’s tonsils again. They are definitely larger than they were at his last visit in March. Our doctor explained that for most kids their tonsils grow faster than their mouth until about 5 or 6 years old, so he’s highly suspicious of Braxton’s already being so large that they will cause problems for him.  He said we don’t need to do surgery immediately, but we definitely need to keep an eye on him and watch for signs that indicate surgery is warranted.  At this point, I’m certain Braxton is going to need a Tonsillectomy in the next year or so.  In fact, we follow-up in January and I’m thinking I may ask him to go ahead and take them out.  He’s just now starting to make feeding progress, so I’m concerned how the Tonsillectomy will affect him and whether I want to deal with a setback now or later.  *sigh* Hate to delay his progress, but would also hate to get him eating well and then have to go all the way back to square one.  We shall see over the next few months.

Finally, Braxton is scheduled for his 4th surgery tomorrow.  He is having a few procedures actually. If he has to be under for anything, we try to get as much as we can done so he doesn’t need to be under again.  Braxton has been under anesthesia 4 times so far, and 3 of those was for surgery.  The 4th was for all those MRIs and his EEG. So, tomorrow makes 5 times under.  Yikes! Thankfully, he has done well each time so far, but there is always a concern especially now that we know his tonsils are enlarged and that with his RTS diagnosis he is susceptible to sleep apnea.  I’m making sure to request an anesthesiologist who has worked with him before.

He is having a repeat ABR to check his hearing.  This should be the final one for a while and it’s just to confirm the results of the last 2 that he’s had.  He seems to be hearing better even without his hearing aids, so I’m very curious to see what the results show tomorrow.  He will also be having a CT Scan of his inner ear to see if there are any structural abnormalities that are causing any of his hearing issues or that would interfere with his speech.

The main procedure is a circumcision.  Without going in to too much detail, we weren’t able to do it when he was born and were told to give him some time to develop a little more.  When we got the RTS diagnosis in April, we learned that boys with RTS are prone to Urinary Tract Infections.  Our pedi suggested we see a Urologist to start following him and make sure there weren’t any kidney problems either.  Our urologist explained that since he had not had a UTI yet, further diagnostic imaging wasn’t really needed at that point, but that we should go ahead with the circumcision since that would be a key way to keep him from getting UTIs. So, here we are.  I definitely didn’t want to prolong getting it done as I’m sure it would be much more difficult later on.

His ophthalmologist is also coming in to try a probing and irrigation of his tear ducts once more to see if that helps the constant crust on his eyes.  Hopefully his tear ducts have grown a little more so that the procedure is really beneficial this time.  He has been waking up with his eyes crusted over less and less, so I think that’s a good sign!

I’m now impatiently waiting for the hospital to call and give me all the final instructions like when to stop feeding him and when to arrive at the hospital tomorrow.  As always, we will keep you posted here or more than likely on our facebook page, so if you haven’t already, make sure you ‘Like’ us so you can keep up with Braxton!

Thank you for all of your love and support, and of course the continued prayers.


Filed under Kids and Family, Life, Special Needs Child