Tag Archives: complex medical needs

The Waiting Game…Again

I’ve always said that patience is a virtue I don’t have…but apparently someone begs to differ. Here we are waiting, yet again, in the surgery center of Dell Children’s Hospital. We’ve been here too many times. If you missed the last post, Braxton isn’t having surgery, but he is having several imaging studies that required him to be put completely under so it had to be done in the surgery center.

We arrived at 6:15 am, checked in and did all the registration stuff and did the first round of waiting for a nurse to take us back.

A clinical assistant took us back around 7:30 to get weight and vitals. Braxton is 28.4 pounds! o_O That explains my mom muscles ūüėČ

Braxton's "Let get this show on the road" face

Braxton’s “Let get this show on the road” face

The radiology tech came in at about 8:00 to go over the tests being done today. He’s having an MRI of the Brain and full spine (which is actually 3 separate MRIs). He told us this part would take about 2 hours in addition to the time for anesthesia to take him back and put him under, place a breathing tube and IV. He’ll have his EEG after the MRIs

The anesthesiologist came in soon after to go over putting him under and to discuss his health history and all that good stuff. And then we waited some more.

A nurse finally came in and said they were ready, but waiting on the ophthalmologist because she had to do an exam and sign off before they put him to sleep. Somehow the doctor didn’t get the memo. They ended up calling her and she reported it would be at least an hour before she could get here. Instead of making us wait, she just cancelled. *sigh* I was actually looking forward to her part because I’m hoping his tear ducts are big enough now for something to be done to help. Unfortunately, that will need to be rescheduled. Another unfortunate part is that we will be back in August sooo she’ll just get moved over a few months.

Finally, after speaking to all the nurses and doctors they took Brax back a little after 8:30 to get started.

And he's off... :(

And he’s off… ūüė¶

Soooo, now here we are…waiting….yet again. If all goes well, we should see him again in about 3 hours. Maybe longer depending on how long the EEG takes. Thank you all for the prayers and well wishes, we will update as we get more information.

 

// UPDATE //

Well, I thought I’d more updates throughout the morning, but they didn’t call me after each procedure like they normally do. ¬†It was about noon that they finally paged us and took us back to a recovery room to see Braxton. ¬†As we arrived, the tech was taking off the EEG headwrap and electrodes and Brax was crying. I saw his paci at the foot of the bed and gave it to him and he calmed right down and went back to sleep.

Braxton in Recovery Room

Braxton in Recovery Room

The nurse let us know how he did during the studies and let us know there were no issues with anesthesia.  We waited in recovery for a few minutes and then they took us over to a room for further monitoring.

Going to post-op room

Going to post-op room

The nurse came in and checked vitals again. They gave us discharge instructions and told us the reports would be sent to our doctors within a few days, so we could get them early next week. We tried to give Brax a little Pedialyte just to see if he was too nauseous from the anesthesia and to see if he would keep it down.  Thankfully he did.  The nurse removed his IV and told us we were free to go.

Rockin' the "wet" look courtesy of the EEG goo

Rockin’ the “wet” look courtesy of the EEG goo

 

We are at home now and I thought for sure Brax would want to take a nap, but apparently that’s just mom. ¬†He is crawling around and playing like his normal self. ¬†He does sound a little hoarse from being intubated, but he’s doing great. ¬† Working on feeding him now, but only half a normal feed for now, just to be sure. ¬†I should be able to give him a full feed later today…poor kid, I’m sure he’s starving.

 

Thank you all again for your prayers and well wishes!

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Hmm…where did I put my cape?

Yes, as in my superhero cape. ¬†Oh, You didn’t know Moms were superheroes? How else do you think we can manage to run the house, keep the children fed and bathed, all the homework done, doctors visits attended, work in OR out of the home, schedules maintained….surely it takes SOME kind of super power to be able to balance all that! I truly believe that all mothers possess an inner superhero, and it’s about time for me to again channel mine. We’ve had a couple quiet months appointment wise, but that is quickly changing!

Look at that big boy waiting for the doctor!

Look at that big boy waiting for the doctor!

First, we had an appointment today with our ENT (Ear, Nose and Throat Doctor) to follow-up on Braxton’s ear tubes and hearing aids. ¬†I wasn’t expecting the news I received. ¬†First, the good news, Braxton’s tubes are still in place and look clean and dry. Woo! The doctor said tubes typically stay in place about a year, which we are coming up on next month, so he just said to keep an eye on them to make sure they don’t fall out. ¬†If they do, we’d have to repeat the procedure. ¬†I again mentioned Braxton’s constant congestion. ¬†It really just continues to get worse for Braxton. He always sounds like he has a cold. ¬†The Doctor said he still thinks this is due to poor oral motor muscle tone and didn’t think it would be successful for Braxton to have his sinuses probed because his sinuses are probably too small to really have benefit. ¬†It will unfortunately just take more time and as he grows his sinuses may also help open up. ¬†He mentioned that since Braxton also has a high arched palate, that takes up some space in the sinuses which could also cause the back up. I did ask what he thought about having his throat scoped to check for damage from all the vomiting or anything else that may help us in deciphering why Braxton refuses to eat. ¬†He said it was probably more a neurological or sensory issue instead. ¬†Then, the not-so-great news. He looked in Braxton’s throat and said Braxton’s tonsils are growing much faster than his mouth and are too large. ¬†He didn’t recommend surgery right away, but he said it’s very important to now monitor Braxton’s sleep due to the enlarged tonsils. ¬†I will have to wait for Braxton to fall asleep for about an hour and then watch him for about 10 minutes to see his breathing rhythm, note any snoring, and also note any pauses in breathing. ¬†Pauses 2-3 seconds are not cause for concern, but pauses 5-10 seconds to where he gasps for air are very problematic. He also mentioned that having large pieces or amounts of food in his mouth would cause him to gag/choke due to the size of his tonsils. ¬†This could very well be why he isn’t eating. ¬†I’ll have to watch him when we feed again to note any gagging/choking. ¬†So far it’s just complete refusal, and the few bites we do get in he does ok with. At least that I can recall. ¬†Ideally, we’d like to avoid having the tonsils removed because not only is the recovery difficult, it could also cause extreme setback when it comes to eating, however, breathing trumps everything. ¬†If he isn’t breathing correctly, we need to remove his tonsils. ¬†Ugh, more surgery. Poor kiddo ūüė¶ After we met with the ENT, we went over to see the Audiologist for an in-office hearing test. ¬†Braxton is still a little young for good results, but he did ok with the booth test and the results were fairly similar to the last ABR we had. ¬†The audiologist said she does think we need to have at least one more ABR to confirm the results of the last test and to make sure his hearing hasn’t gotten any worse. ¬†We’ll try to get that set up this summer.

I’m enjoying the next 2 weeks of quiet because I have my work cut out next month. ¬†We just added a visit to an Occularplastic Surgeon to discuss the possibility of the Jone’s Tubes should his ophthalmologist not be able to probe his tear ducts as we discussed last visit. ¬†We will be scheduling the probing and irrigation this summer, and if that still doesn’t work we will have the plastic surgeon on hand to go ahead and do the reconstructive tear duct surgery. We’ll probably need to do some imaging since there is no way I’m letting this doc break bones without even checking the structure and investigating what else could be the issue. ¬†That means we’ll be tacking on all the imaging everyone else wants done too. ¬†Most likely an MRI of the Brain and Orbits will be done, and I know ENT mentioned a CT of the inner ear which I’m sure we can coordinate. ¬†Will probably try to get that set for early May, because April is too full. ¬†We then have our EEG scheduled the next week per our last neurology visit to check on brain activity and make sure there is still no seizure activity happening. ¬†We will also see our Geneticist next month to go over the results from our Exome Sequencing. ¬†Fingers crossed that we will finally get a diagnosis, or at least some hint about the underlying cause of all our issues. ¬†All that on top of our regularly scheduled therapies.

Annnnnnd, Joseph just received a promotion at work! Yayyyy!! However, that means more training and certifications which will require him to be away from home. Boooo! Thankfully, he was able to make some calls and arrange the initial training around next months appointments so I don’t have to go it completely alone nor completely rearrange everything. ¬†I’m a little uncertain of the schedule after that, but I’m mentally preparing for the time apart. ¬†I’m very excited and proud to see his hard work finally paying off! It’s just like someone came and kicked the dirt up from around us. ¬†Dealing with the initial shock and confusion of the kick is the hard part, but¬†I know when all the dust settles, everything will be just fine. ¬†ūüôā

Welp, I need to get back to looking for my dang cape!? I definitely need to channel my inner Supermom for the next few months.

Images from: Riveter Mom , Wondermom , and SuperMom

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G-Tubes: A Blessing and A Curse

G-Tube

This was after his hand surgery, but you can see the button and extension in the picture.

We had a lot of family and friends over this weekend and naturally, questions about Braxton arose. Nothing bad, but just makes me think more about the little miracle we have. ¬†Braxton has had his G-Tube since he was 2 weeks old and I remember very clearly how daunting the idea was. ¬†Now, almost 17 months later I have found so much that I love about Braxton having a G-Tube, and so much that’s not so great. We often get asked about him having his tube and how difficult it is, whether or not it bothers him, and so much more. ¬†For us, this is “normal,” for others, it’s new territory. ¬†Joseph has even said he hopes all our children need tubes..jokingly of course, but we’ve grown so used to it over time and have realized several advantages. Here are just a few things I’ve found I like and some that drive me nuts!!

A Blessing

  • First and foremost, medicine – have you ever tried to get a child to take medicine?! If so, you are well acquainted with the wrestling match that ensues. ¬†If not, allow me to enlighten you… No matter how “awesome” you make it seem or how much you flavor it, any kid sees a syringe or cup full of medicine and they’re out of your sight faster than you can blink. If you’re fortunate enough to catch them, you literally have to pin them to the ground sometimes and make them take the medicine! Maybe not always, but more often than not this is how it goes down. ¬†With the G-tube you lay him down open up the medicine port and push the medicine in followed by a little water to make sure it’s in the tummy. ¬†No screaming, no wrestling, no tears…yay! Definitely my favorite thing – especially since Braxton has been on medicine since birth basically.
  • Set it and forget it – With the G-Tube we can feed Braxton anytime, anywhere, and on the go. ¬†We don’t have to wait to run an errand or go to an appointment because of feeding time. ¬†We simply hook up the pump and Braxton feeds on the way. ¬†Actually pretty convenient. When he was younger we had continuous feeds overnight [we fed him over the pump slowly for 6-8 hours] We’d set his pump to only feed him a few milliliters at a time so that 4 ounces lasted about 4 hours. When the pump beeped that the feeding bag was empty we poured in another 4 ounces and set the pump again. From the beginning, I think this helped Braxton sleep through the night because he was constantly fed, and mommy and daddy got plenty of sleep since we were literally awake 5 minutes while we set up the 2nd feed of the night. Thankfully, we didn’t have too many sleepless nights due to feeding every 2 hours.
  • Sister can help – from the moment I found out I was pregnant Aileen was dying to be able to hold Braxton and feed him a bottle. ¬†Once we got the tube I thought her dream would be crushed, but we found other ways she could help. I’d let her help pour the milk in the bag, and even showed her what button to push to turn the pump on and off so now can run over and turn the pump off when it starts beeping or even do it in the car while I’m driving.
  • Always eating – Braxton gets his entire feed all the time. [With the exception of the vomiting spells he was having] Braxton is on a set calorie intake so we know exactly how much he needs to be able to gain weight in a healthy way. ¬†Some kiddos won’t eat when they aren’t feeling well and end up dehydrated. When Brax isn’t feeling well he may have bouts of vomiting, but we can always dilute the feed with pedialyte and/or run the feed a little slower to make sure he still gets it. We don’t have to adjust the feeding schedule just because he’s asleep or anything like that. He eats on time all the time.
  • Easy to learn – Sure, it was pretty scary at first and I can’t tell you how many times there were gaps of air in the tubing because I just couldn’t figure out how to set it up correctly, but it was very simple to learn and we’ve been able to easily show others how to use it without any issues.
  • We can still play. – While Braxton is eating we can still play and interact with him. Sometimes I’ll sit him in a chair with some toys in front of him on a small table and I can work with him while he eats. ¬†No jumping or spinning, but we can still have fun. ūüôā

A Curse

  • Beep, Beep! – I dream of that dang beeping sound! When the feed is finished the feeding pump will beep to let us know and we can turn it off. No big deal huh? Well, sometimes the pump beeps for no reason! It will say “No Flow” or “No Food” and the clamp on Braxton’s extension is clearly open and the bag is clearly full of formula but still it’s beeping. ¬†Usually it’s that there is some small kink in the line, piece of food got stuck in the tubing, or the sensor has something blocking it. ¬†There have been times that I “fix it” lay back down for bed and the SECOND I get comfortable…BEEP, BEEP, BEEP!!! Oh man, had a few nights that this went on for several hours…our pump was almost smashed with a hammer and thrown out the window!
  • Leaks – Go to pick up Braxton and his shirt is completely SOAKED! Not from spitting up, but because the extension came loose, the balloon lost water, the medicine port opened and leaked all over the floor, or the tube came loose from the extension! Talk about a big mess to clean up.
  • It pops out!! – I still remember the first time the button popped out balloon full and all. We were so scared. I quickly remembered the steps the doctor told us regarding how to put the button in, but I’d never done it before. It was either try to do it or rush to the ER 13 miles away and risk the hole closing and needing surgery again…I tried and I got the button back in just fine. Braxton cried because of course it hurt having it pulled out, but we were able to console him. ¬†Scary for sure, but glad I figured it out.
  • Medical Supply Company ¬†– We can’t just pick up an extra bottle or pump or bag at the grocery store. All the supplies for feeding HAVE to go through a Durable Medical Equipment (DME) company and ANY changes have to be authorized and it’s nothing that happens overnight.
  • Ball and Chain – Now that Braxton is mobile, it’s becoming increasingly challenging to get him to stay still for a feeding. ¬†We still have the pump over 30 – 45 minutes and anyone can tell you getting a toddler to sit still more than 2 minutes is impossible. ¬†Braxton will crawl across the room with the tubing stretched tight in the 30 seconds it takes to throw something away. We’ve had to sit him in a chair with lots of toys to try to keep him content, but I don’t think that will last much longer!
  • Clothing! – We had so many cute outfits we bought before Braxton was born that he couldn’t even wear! ūüė¶ Anything with a zipper was out of the question because it interfered with overnight feeds, couldn’t have him connected and zipped at the same time unless of course we cut holes in the outfit. ¬†I also have to have him in onesies as wearing plain t-shirts I’m afraid of the button getting caught on something and coming out. There is adaptive clothing available, but some of it is pretty pricey and there is plenty that works instead for now.
  • Daycare – Fortunately, we found a daycare that isn’t designated as “special needs” but is willing to work with us and learned to use the G-Tube and they’re just amazing. But finding childcare is very difficult. ¬†The moment I mention feeding tube everyone turns us away. ¬†Since we’ve moved I found no one in the area to care for him, so we’ve stayed at the daycare by our old house. It’s a little out of the way, but I love them and Braxton is happy there so we’re happy. I just fear moving further away…hopefully we don’t have to anytime soon.

I’m sure there are many other things I could add, but I’ll think of them later..This is simply our own experience with a G-Tube so feel free to share your own in the comments! I’d love to read some of your pros and cons of feeding tubes ūüôā

 

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Gastric Dumping Syndrome

Well, this post was pre-empted by yesterday’s exciting events! But, if I don’t write it now I’ll forget. Mommy brain.¬† Yesterday, Braxton had an appointment with his GI doctor to discuss results of his Gastric Emptying Scan and follow-up on feeding difficulties.

The test was originally done to check for gastroparesis – delayed emptying of the stomach, which the doctor thought could have been brought on due to the pneumonia Braxton had in August. The scan actually revealed the exact opposite! GI has determined that Braxton has Gastric Dumping Syndrome. I’m not going to explain this nearly as well a our doctor did, but here goes… the short answer is Dumping Syndrome is where the stomach empties too quickly. Doesn’t seem like a big deal, but it really is – when the stomach empties too fast the formula gets to the small intestine too soon which signals the pancreas to increase the amount of insulin the body is producing. [Didn’t think you were going to get a science lesson today, did ya?] ¬†His body then absorbs the sugar of the meal way too quickly while his body is also producing insulin. As the level of insulin increases the sugar level peaks and then crashes which can cause vomiting/diarrhea/sweating/lethargy [all problems Brax has had during/after feeds]¬† This would explain the vomiting Braxton has had when feeding. There is “early” dumping where symptoms can start immediately with feeding and “late” dumping where symptoms don’t happen for 1-3 hours after feeding. Braxton has had both; there are times when he’ll vomit IMMEDIATELY upon starting a feed and times where it’s about an hour later.

So, how do we fix it?

Thankfully, it’s a pretty easy fix. The vomiting is caused by the rapid increase then rapid decrease of sugar levels in the body, so the doctor wants us to add corn starch to each feed. I know what you’re thinking – corn starch?? Well, corn starch is¬†a complex sugar that takes the body much longer to digest and absorb. It also thickens the feed so it moves more slowly through the digestive system.¬† Since the body won’t be able to absorb the sugar so quickly, this *should* stop the vomiting and we *should* be able to increase rate of feeding and get Brax back to where he was before this big mess. The doctor said “I’m confident this WILL work….I hope” gee thanks doc! =/ He really wants us to work up to feeding Brax 8 oz [he’s currently at 6oz] per feed and get him off the pump again.¬†

Last night I did try the corn starch and gave him his usual 8oz for the evening feed, but instead of doing it slowly, I ran it at slightly higher than his day feeds annnnnd he kept it down! wooooo!! No coughing, no gagging, no vomiting. So, maybe..juust maybe we’ve finally got this thing figured out! Today, I sent him to daycare with just 7 ounces each feed, just¬†in case it didn’t work as well. ¬†I’m going to very slowly jump the speed of the pump everyday¬†until we can try to get him off of it.¬†

Also, with regard to actually feeding by mouth. GI would like us to try Braxton on Periactin. Periactin is a medicine that helps to increase appetite and also helps to expand the stomach. GI’s goal with this is to MAKE Braxton hungry so he’ll WANT to eat by mouth again. He said the effects of it wear off after a few weeks so we’ll have to do cycles. Give the medicine for 3 weeks, give him a week break, then start him on it again.¬† As an added bonus, Periactin is an antihistamine so hopefully it will also help Braxton with all the added congestion he has going on. We see the Ear, Nose and Throat doctor tomorrow and I’m going to bring up the persistent sinus congestion and see what he thinks about going in and cleaning the sinuses out or maybe just seeing what the Periactin does.

*fingers crossed*

Let’s hope this plan works!

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