Getting To Know The PICU…

It’s been almost 11 weeks since we left the NICU here at Sunrise Children’s Hospital and in that time many things have happened…

First and foremost, our family has been able to enjoy Asher being home. We’ve had a few friends and family come to visit, we’ve enjoyed 3am feeding sessions, and juggling life with a newborn being home…

He’s eating more, breathing without oxygen support, and has excelled with his physical, occupational and speech therapy…

We were even able to spend the Holidays with him…

It’s been a blessing…

• 

• 

• 

• 

• 

But todays update is to bring you up to speed on the multiple visits to the PICU, the additional brain surgeries, and the legitimate battles we’ve had to fight on Asher’s behalf…

PICU Visit #1

A few weeks ago the results from a head ultrasound and a failed shunt tap warranted a shunt revision surgery. The catheter that was inside his brain was up against the wall of the left ventricle, not being able to drain properly. Think of putting a grocery bag over a pool drain…

Dr Bragg had assured us that this was a routine procedure with minimal risk for complications. The surgery went perfect, as usual for Dr Bragg, but the pre op and post op was a complete disaster…

PRE-OP

When Asher was intubated for previous surgeries during his stay in the NICU it typically took Dr Lipsky a mere 15 seconds to get the ET tube in…

But this time was very different…

It took the anesthesiologist ONE HOUR to intubate. Mind you, anesthesiologists are supposed to be “airway experts”…

Instead of raising her hand and asking for help this anesthesiologist continued with her attempts, which caused damage and swelling to his airway…

Asher could have easily been extubated before leaving the OR if his airway wasn’t swollen. And if they were to remove the ET tube wile his airway is swollen there’s an extremely high chance that his airway would collapse in on itself, which is VERY difficult to recover from…

We suggested giving him a steroid treatment to help reduce the inflammation, which worked…

Once we could see on his vent settings that his leak rate was high enough, we requested him to be extubated right away. We explained that he hates being intubated and will “clamp down” while fighting the vent. He also has a high level of secretions when intubated and if you don’t keep up with the suction, you’re going to have problems…

The Dr that day said there is no way she could do it because his settings were too high, which we knew. But we also knew that he has proven himself worthy of being extubated on high settings downstairs in the NICU. We asked for a consult from Dr Lipsky to get her opinion on Asher’s condition because she knows more about Asher than any other Dr in this hospital…

And sure, anyone can read his history…

But Dr Lipsky understands the nuances of Asher being “Asher”…

The next morning around 5:30am I wake up to the room being filled with nurses, RT’s, and two Drs…

Asher had clamped down and they were trying to bring him back…

His heart rate had dropped from 130bpm to 40bpm. His O2 saturation had dropped from 100% to 20%. They had to bag him and came VERY close to needing to give him chest compressions…

My “I told you so” was heard loud and clear…

Fast forward 33 hours (of which he was left on his right side) and his right lung collapsed…

Another “told you so” moment…

Side note: after his lung collapsed they continued to leave him lying on his right side for an additional 8.5 hours before laying him on his left and allowing his right lung to finally drain…

Ever seen the movie John Q?

I told the Dr that the reason he is declining and they are having to go up even higher on his vent settings is because of her and her refusal to listen to us when it comes to his history nor calling down to his previous Dr for a consult…

After climbing the ladder and getting a few directors and the house supervisor involved, they FINALLY brought Dr Lipsky up for a consult. Once she was given the green light to speak she told them to do what WE had been telling them to do, verbatim…

Soon thereafter, he was extubated and his numbers IMMEDIATELY improved…

Our third “told you so” moment for this trip…

A day later we were discharged…

PICU Visit #2 – 12 Hours After Being Discharged

The morning after discharge we noticed that Asher’s eyes were directed downward and no matter how hard he strained he could not get them back up. Half of his pupils were covered by his lower eye lids…

After a quick Google search we found a condition called “sun-downing” or “sun-setting” which is a neurological condition caused by intracranial pressure being put directly on the brain stem. It comes with the territory of having been diagnosed with hydrocephalus…

We had called Dr Braggs office to ask if this was normal, but once we sent her pictures she told us to get to the ER “now!”.

ER Tip: If you ever want to bypass the line at the children’s ER tell them your kid has “sunsetting eyes” and they rush you back no questions asked…

After receiving a CAT scan we discovered that a cyst in his third ventricle had enlarged, thus time putting direct pressure on his brain stem…

Dr Bragg was out of the office and her colleague wanted to perform surgery on the left side. Monica and I didn’t agree due to previous imaging and conversations we had with Dr Bragg. We reached out to Dr Bragg and after she reviewed the most recent CAT scan imaging she agreed that the left side should be left alone but the right side is where the cyst had been growing and that the third ventricle is where the pressure on his brain stem was coming from, causing the sun-setting eyes…

He was scheduled for surgery the next day for another shunt revision. The catheter placement was adjusted and one of the valves was replaced…

A couple days later and we were discharged…

PICU Visit #3 – Currently Here As Of Writing This

The Thursday before New Years, Dr Bragg called us to give us the results from his most recent CAT scan…

There is a loculated area on his left side that is now the size of a Coke Can while squishing his left ventricle to the size of a golf ball (not actual size, but reference from the images we saw).

This time Dr Bragg was considering a few options for surgery. One of them was begin an endoscopic exploratory surgery on the left side of his brain…

She was able to find a spot in his septum (the “wall” separating left ventricle from right; full of blood vessels that feed the brain) that didn’t have any blood vessels. I remember her calling us while in the OR telling us that she had found this location and can safely open it up to FINALLY allow for the left and right sides to communicate…

She was also able to remove the left shunt because with the left and right communicating, it’s no longer needed. They currently have a temporary tube and valve system coming out of the back of his head that they can use to relive ICP if they need to if the opening in the septum happens to “heal and fold in on itself” thus blocking communication from left to right…

If he can make it until Monday’s CAT scan with the dye study showing communication is still happening between left and right, they’ll internalize the right side which will allow us to focus on recovery and getting back home. If any issues arise, we will deal with them accordingly…

God willing, this is one of the last surgeries he has to have for a long time. We’re praying that the opening on the septum STAYS open and that his left shunt continues to function properly….

The journey continues…

• 

• 

• 

• 

• 

• 

•