Tag Archives: hand surgery

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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Annnnnndd they’re off!!

Followed up with the hand surgeon today, and Braxton got his bandages off!!! Yayyyyy!! He was definitely happy to have his hands back.  He kinda sat in the office for a minute not knowing what to do. He held his hands up like he expected his freedom to be short lived and have bandages back on his hands.  But doc came in and took a look and said everything is healing well and it was ok to keep the bandages off.  He did say we should maybe put a sock on his hand if he’s going to be crawling around too much. Brax is good to resume all therapies without restrictions too, so I’m happy we can get back to work on getting him mobile!

As soon as we got home we let Braxton lay on the floor and he immediately flipped himself on to his tummy and popped right up on his hands up on all fours. 🙂 He’s still very determined to start crawling soon.  We let him play on all fours until he wore himself out. He’s so happy to have his hands free again. He doesn’t seem to be in too much pain….for now! He should be completely healed up in another week or so.  Exciting!!

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Follow-Up Visits

Busy, busy week around here! Wednesday we went for a follow-up for Braxton’s hands.  Doctor said everything is healing very well! They changed the bandages and put him in dry bandages for us to change daily.  Yikes! Bandages are much less invasive so Braxton is a bit happier to not have them so thick.  Last visit, Braxton screamed and cried the entire time. This time I remembered to give him some pain medicine and he was in his normal happy mood! Yayyy mom! Monday we follow-up again and hopefully the bandages come off completely.

We also followed-up with the audiologist for Brax’s hearing aids on Thursday. Well, dad did. Dad thought the appointment was at 12 instead of 1 so when I left work to meet them he was already calling to tell me they were finished! Dad said the audiologist changed the tubing on one of the aids because it was falling out and other than that she said just to call as he grows and the ear molds need to be changed. We finally put them back in for him once ear drainage from the infection stopped, and he’s been doing well with them.

As usual here are some pics 🙂 OH, and a video! Braxton was in a silly mood and just laughing like crazy with daddy.

 

For more info on the hearing aids, please see this post.

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When it rains, it pours

Yes, I’ve said it before, and no, it won’t be the last time either.  We had an extremely busy morning today.  Braxton woke up today with green gunk draining from his ears =/ Thankfully, we already had an appointment with his pediatrician scheduled at 8am.

Turns out Braxton has a double ear infection [his first since he had his tubes placed in April] and a sinus infection. That explains all the green junk from his ears and in his tummy yesterday.  More antibiotics to help the sinus infection and ear drops for the ear infection. Poor kid. I swear we’ve been in the pediatrician’s office at least every other week for him.  He’s been on more antibiotics than I care to mention.  And with the ear drainage we can’t put his hearing aids on. 😦 We’ve got to let his ear have air and let it drain and heal before we can use them again. Terrible setback.

After the pediatrician’s office we headed over to the Hand Surgeon’s office for Braxton’s post-op visit and bandage change.  Stupid mom forgot to give him pain medicine before we got there. I have NO idea why I didn’t think about it before we got there. But my heart just broke and I kicked myself once he started screaming and wouldn’t stop.  He was happy when the bandages came off, but once they started cleaning the site and putting on fresh bandages he started crying uncontrollably and it just tore me up.  PA said the surgery site looks good and is healing well.  The skin graft looks ok too. The stitches were still in place and she said they’d dissolve on their own. But oh my goodness! The Dr told me the site was small and only about half an inch, that graft is definitely NOT small! Braxton has a 2 inch gash on his arm right now. Sure, once he’s older you won’t even notice it, but for now his little arm looks terrible 😦 It took a good while for me to be able to calm him down. He cried off and on the whole way home.

Once I got home I gave him his pain medicine, went ahead and gave the first dose of antibiotic, and put the ear drops in. Even still, it was a good 20 minutes before I got him to really calm down.  I hung out with him for a minute before I had to head out to work and take him to daycare :/ He had a pretty good day though. I called to check on him a few times and when I picked up they said he had a pretty good day. No vomiting today (yayyyy) and he was actually pretty happy and laughing and smiling with the teachers and the other kids.  I can’t say enough nice things about our daycare. I love them all and I’m so grateful they are so good with Braxton. They all love him so much and take good care of him.

Now if we could only get this storm to pass, everything would be wonderful again.  I sure hope these meds kick in quick!

 

Brax finally resting after a long day. Poor kiddo.

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Beyond Frustrating!

I swear, when it rains, it pours for Brax. 😦

We have his first Post-Op follow-up for his hand surgery tomorrow and they will change his bandages for him.  Follow-up again next week to change bandages, and then once more the following week to finally take the bandages off.

Monday, we went to see GI about Brax’s recent increased feeding difficulties and got nothing but bad news it seems.  With all the coughing and vomiting GI is now concerned that Braxton has reflux.  We started Brax on an acid blocker a couple days before surgery last week to see if that would help stop the vomiting and help heal the esophagus which has likely had some erosion from vomiting.  The dr said that sometimes after an illness like Pneumonia, we can develop gastroparesis where the stomach has problems emptying properly due to the illness.  Monday we followed-up on that and not sure if the medicine helped, or decreasing the speed of his feeds had more to do with it.  The doctor decided to go ahead and switch Brax over to Pediasure Peptide which is a formula that digests a little easier so that his stomach empties faster to address the possibility of gastroparesis.  He also decided Brax needs to have a Gastric Emptying Scan which is a study that will basically x-ray Brax’s stomach while he digests his formula over the course of about 2 hours.  This will help to tell us if Brax is definitely having issues digesting food properly. The cure? Surgery. Ugh. The doctor also had us revert back to using the feeding pump for Brax’s G-Tube instead of feeding by mouth.  He wants us to still offer his bottle and food just so he knows he needs to keep doing it and doesn’t develop a complete aversion to eating/drinking by mouth.  He was doing so well before he got sick, now we have all this. It sucks.  I was able to go ahead and the Gastric Emptying Scan scheduled at the end of next week. Our Medical Supply company got us a new shipment of the new formula. And we are continuing the acid blocker and the slower feeds using the feeding pump.

Great! Right? No. Today Brax threw up two of his feeds at daycare.  I was going to try and keep him home while he was recovering from surgery, but those plans fell through and I had to take him to daycare.  Extreme mommy guilt set in. Then, the physical therapist called me to tell me he threw up a majority of his feeding and she was concerned.  Since this has been an issue I decided to let him stay and just slow the feeding pump down even more for the next feed.  Welp, right on schedule 4 hours later daycare was calling that he’d just thrown up the entire feed again. Worst mommy of the year goes to?? This is one of those days I wish I didn’t have to work out of the home. Medicine, new formula, slower feeds and he is STILL throwing up! What gives?!? Left a message for GI Dr, but of course no word just yet.  I’ll be calling all morning until I get a hold of someone.  Now that we are home, Brax has just been somewhat fussy and grumpy. His afternoon feed is finishing up and he fell asleep so we’ll see if he can keep this one down, plus this evening as well.  Also scheduled an appointment with the pediatrician in the morning because his cough is not getting better and I pulled a bunch of green stuff out of his tummy. Sinus Infection maybe? Ohhh I dunno, at this point I’m just overwhelmed and frustrated.

Tuesday, we also saw the ophthalmologist because I’ve noticed Braxton’s eyes crossing intermittently throughout the day and I wasn’t sure if it was anything she needed to look at.  Of course, we get to the office and his eyes don’t cross once! Thankfully, I did happen to have a picture on my phone and she said he was definitely crossing. There are 2 different kinds of crossing. There is one where glasses would be needed to correct it, and another where it just happens occasionally but kids usually grow out of.  To test we have to do a refraction test, so dr gave us some eye drops that we are to use a couple days prior to seeing her and the drops actually bring out the crossing if it’s the one that needs glasses to correct.  Lovely, my child may have glasses annnnddd hearing aids =/ I’ll love him no matter what and he’ll always be the cutest kid I know 😉 But, people suck and are just not raised right anymore and just stare at him, but that’s another post entirely…we’ll go back in a few weeks once his hand situation is taken care of to see what’s going on with his eyes.

I think that’s everything. Confused? So are we. =/

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