Tag Archives: brain MRI

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 😉

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… 😦

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

A Big Day Ahead

Well, tomorrow….actually, in just a few hours we are scheduled to be at Dell Children’s Hospital, and naturally I can’t sleep.

Thankfully, Braxton is not having any invasive procedures or major surgery, but he will be under anesthesia and anytime that’s necessary I’m more than worried.

Before we had a diagnosis, we saw our neurologist who decided Braxton needed an updated MRI of the brain and an EEG. He originally schedule the EEG in office, but they decided it would be easier to do both procedures at once and turned it over to the hospital.

Then, we had our appointment with the geneticist which gave us a diagnosis. At that appointment we discussed somewhat “the next steps.” We discussed some of the signs and symptoms that are common to Rubinstein-Taybi that had not yet been found in Braxton. One such symptom was a tethered cord or other abnormality of the spine. From previous visits with our Orthopedist, we knew Braxton had a mild form of scoliosis, but the doctor was unable to tell if there were any vertebrae missing or pieces of vertebrae missing. An x-ray also does not show the actual spinal cord to see if it was abnormal. Therefore, the geneticist told me I should call and let the orthopedist know our new diagnosis and that Braxton may be at risk for these things. Our Orthopedist decided to err on the side of caution and said an MRI of the full spine was necessary. Thankfully, we were able to get that scheduled at the same time as the EEG and Brain MRI.

I also called our Ophthalmologist, because she mentioned that if Braxton happened to go in for any imaging or procedures, that she could possibly check his tear ducts again to see if they have grown enough for her to be able to probe them or insert silicone tubes (NOT the glass tubes I mentioned recently). She was also able to coordinate her schedule and will be seeing Braxton tomorrow after his MRIs are done. It’s a very quick procedure and he may have some discomfort after, but he did ok the last time he had this done, so I anticipate no complications.

So, why can’t you sleep, mom? Well, because I’m a mom. And we worry. All the time. Seriously. All the time.

Also, because I have strict guidelines to follow regarding feeding times. Since Braxton has to be under anesthesia, I have to cut off food and liquids at a specific time so he doesn’t have any reaction to the anesthesia or throw up while he is under. I’ve already given him his last formula feed for the night. He is allowed clear liquids until 3 am so I’m staying up to give him some Pedialyte so he won’t be dehydrated from not being able to eat until sometime tomorrow afternoon. If I fall asleep, there’s no waking me up in 2 hours and then I’ll feel terrible about it in the morning. Then we have to be up at 5 to be at the hospital by 6. I figure that I will be sitting around waiting for 4 hours tomorrow, I can sleep then. Ha! Who am I kidding, I won’t sleep at the hospital either. For now, I’ll watch my little man as he sleeps ever so peacefully. I will definitely update again tomorrow (later today) as we work through all the different procedures.

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Filed under Kids and Family, Life, Special Needs Child