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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.

Swinging

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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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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Surgery Day

I have to admit….this 10:30 am check in for the hospital was pretty strange. I felt like we were late the whole way here! We normally have to check in at 6:30 am! I’m definitely thankful for the couple extra hours of sleep.

We arrived at 10:00 am and had the fastest check-in in the history of check-ins! We were checked in, registered, and in a room by 10:15 am. The nurse took vitals and got all the paperwork started for us. Braxton was starting to get a little cranky so dad took him to find one of the little tikes cars they have and pushed him around in the hallway.

The boys played while we waited for quite a while for all of the doctors to arrive.

Once everyone got there, we spoke with each one individually about what to expect today. We were able to address our concerns with the anesthesiologist about his new RTS diagnosis and risks of anesthesia associated with that. Braxton has not had any issues with previous anesthesia events, but I wanted to be sure they knew exactly what to look for. One of his doctors called me herself and voiced her concerns about Braxton being put under, and she told me that normally she recommends an overnight stay for observation in children with multiple medical issues. Since he has not had issues before, she said she will leave the decision up to the anesthesiologist. We are prepared for an overnight stay, but hoping for a late afternoon release. We did learn that Braxton his having a new type of anesthesia since he is having a circumcision. In addition to the gas he will be receiving, he is also getting a shot in his low back to numb his groin area for 4-6 hours to help curb any discomfort even when he wakes up after the procedure. He’s never had this before, so that’s the worrisome part for me this time. He will have 4 procedures today and I’m not totally sure how long he will be under.

Just before noon, the nurses took Braxton back to the operating room to get everything started. This part never gets any easier.

See you soon, little man.

See you soon, little man.

UPDATE: 1:30 pm – Just spoke with the ophthalmologist. The first procedure is done. She attempted the probing and irrigation of his tear ducts again and if the ducts were big enough, the silicone stents would be put in. She reported that Braxton was doing well and she was able to probe and irrigate the tear ducts successfully. This time she was able to use a few larger probes than the first time when only the smallest would even insert in to the tear duct. She also told me that when they irrigated, that the fluid DID drain through the nose, so that tells us that his tear ducts ARE in tact. There was also a “pop” sound that indicates they were able to push through a blockage. Unfortunately, she was not able to place the stent. It kept running in to a hard spot which is possibly hard tissue or his nasal bone. Hopefully being able to irrigate completely will be enough to help Braxton clear his eyes up. If not, the next step is Jone’s tubes which are the glass tubes I wrote about previously. That would be another couple years away, if it is necessary. The urologist is now beginning the circumcision. Will report back when we get the next update.

UPDATE: 2:08 pm – And just like that, Procedure #2 is done. Spoke with the Urologist and she was able to do the circumcision without any issues. Recovery will be a couple of weeks and some other precautions for a little longer than that. We’ll follow up with her office in a month. Braxton is still doing well under the anesthesia. She said the anesthesiologist is fairly confident that Braxton will not need to stay overnight. *whew* They are getting ready to start the ABR now to check his hearing and see if the hearing loss is better, worse or the same. This part can take up to 2 hours, so update in a few!

UPDATE: 3:35pm Braxton just finished with his ABR. We met with the Audiologist who performed the test and she reported that there was a slight decrease in his hearing. :/ This kinda bums me out. He really seems to be hearing better when he is not wearing his hearing aids, so I was hopeful it had gotten better. He may need a slight adjustment on his hearing aids now, but we will follow up with his ENT and Audiologist later to be sure. He should be finishing up with the final part of today which is a CT scan of the inner ear to check for any structural abnormalities that would effect his hearing or speech. Hopefully our next update will be from the recovery room after we’ve seen him.

UPDATE: 4:33 pm Braxton is done for today. We are in a recover room waiting for him to fully wake up before we can go home.

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UPDATE: 7:27 pm – We are finally home! Braxton is feeling a little more like himself and having some spurts of energy here and there.  When we arrived, a special gift was waiting for us in our mailbox.  Tinysuperheroes is an organization who sends superhero capes to children with various medical conditions to help empower them and make them feel like the superhero they are inside! Braxton received a cape today! He’s sure to make a speedy recovery now that he can officially channel his superhero powers. Fitting ending to a hectic day.

Even super heroes need their rest.

Even super heroes need their rest.

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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.

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