4th of July was the four month anniversary of Evan’s accident and his life at the hospital. Four months…how did that happen? The baclofen pump has been in place for nearly a month and the quantity of the drug has been increasing steadily. Evan is now at 900 micrograms (equals 0.8milligrams – a far cry from the 60 milligrams he was on orally). Evan’s body is much more relaxed, though he still has storming episodes where his whole body stiffens up and gets agitated. He continues to stay in the PICU to ensure his heart rate and respiration are monitored closely, since the baclofen can relax the body too much and make a child stop breathing all together. Some of the nurses and doctors also think that Evan’s agitation is a result of his feeds, so they have turned off the formula he receives through his PEG about a week-and-a-half ago. Instead, Evan receives TPN, which stands for total parenteral nutrition and includes all the essential salts, glucose, amino acids, lipids and vitamins via IV making it nutritionally complete . We are not convinced it is a feeding issue, but his neurosurgeon wants to hold off on food as a variable until we capture the storming episodes and bring them under control. In the next few days they GI Doctor is going to go in with a video scope to study Evan’s whole GI Tract. Everyone is out of fresh ideas and this test may reveal the source of his extreme discomfort. In the mean time we will remain in the PICU.
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The Pump and our A-HA moment!
We said our goodbyes to Evan early this morning as he was wheeled into the operating room to get his baclofen pump installed. That procedure was successfully completed in less than an hour. Soon afterward out came Evan accompanied by his neurosurgeon who was sporting a knowing grin on his face. The grin was as a result of our “A-HA” moment. You see, after last weeks’ surgery (when the catheter was inserted in his brain) we had 2-3 good days with Evan finally feeling relaxed. The next few days he reverted back to the agitation and distress similar to before the surgery. The doctors, nurses and all of us where perplexed at why his spasticity returned after the days of calm. Theories were thrown around the pediatric ICU, but no one really understood what happened…until today.
A post-op catscan revealed that the cathater that was inserted into the third ventircle of Evan’s brain had slipped out of its position. It probably slowly worked its way out of position explaining the gradual regression during the week. So now what…
Evan is going back to the operating room on Monday morning to re-establish the catheter into the correct position, this time using a more robust tie-down. In order to limit the size of the lump under Evan’s scalp, during the original procedure the surgeon had opted for the method which failed (we still love him). We are disappointed that Evan has to go back through another surgery, but happy to know that we have the plan in place to get Evan back to comfortable.
The hours following today’s surgery were quite difficult for Evan. Here is a picture of a sample pump I placed on Evan to give you an idea of how big it is in proportion to the little guy. The actual pump is installed under the gauze in the same location on the other side of his tummy.
Baclofen Pump
After finally putting him on a steady IV of pain meds he was able to fall asleep for the better part of this afternoon. The next couple days are going to be difficult. Unless something remarkable happens we’ll wait until Monday afternoon for the next update.
48 Hours Post-Op
It has now been just over 48 hours since Evan came out of surgery. The docs have ratcheted up his dosage of baclofen every 12 hours and it currently stands at 240 micrograms per day. This is 0.24 milligrams versus the 60 milligrams he was receiving orally before Friday. At the current dose, Evan finally seems very relaxed with eyes open and a heart rate that shows the calm on the monitor. His body is more loose with increasing range of motion. It is really fantastic to see Evan in such a mellow state.
OK, comic relief for you…Daddy just snapped this photo. Enjoy!
Just Chillin with my pals
Wagon Ride
Evan had a busy day today starting with an early morning visit with Grandma and Grandpa. They were at the hospital bright and early at 7:30am! The nurse had a clever idea to put Evan in a Radio Flyer wagon cushioned with lots of pillows and blankets, and positioned the wagon between Grandma/pa’s chairs so they wouldn’t be too far from him. Evan was awake most of the time they were here but very stiff and agitated.
In an effort to find the right combination of drugs to keep Evan relaxed, the doctors have been adjusting his meds. Today, we halved one of them and still found that he responded reasonably well. After his feeding, Evan and Daddy went on a walk around the floor in the wagon. He seemed exhausted after this excursion and after a quick sponge bath, quickly fell asleep before we could even put his clothes on and without any sedatives.
Hoping for a good rest of the night…
Good Morning
This morning was great. I had a morning meeting so Mommy took the early shift. Evan was restful and calm with her. Mid morning Dena, a friend of Sharon’s Mom came to visit Evan. Dena is an earthy holistic physical therapist type who exudes calm. She spent quite a while massaging and stretching Evan which worked so well he slept through most of it. After that Evan had a real bath (I’ll post a pic soon) which is also calming for him.
Then my shift started and things changed a bit. The past couple hours were just painful. Nothing I did would calm him. Tried every position in and out of bed but nothing would sooth him. The nurse brought his rescue does of Valium, still no luck. After another hour of tossing and turning she came back with the big guns (chloral hydrate) and now he is out for a while.
This afternoon we had a surprise visit from the best pediatrician west of the Hudson River. N
othing like a Dr. in cowboy boots and a Hawaiian shirt to brighten the day, thanks Dr. Shannon. Also had visits from Grandma & Grandpa (who is 80 years young today) and from family friend Sherri who brought a BIG HUG!
False Start
Believe it or not this is our 20th day in the ICU. We have been humbled by the tremendous outpouring of love, prayer and support for Evan and our family. It has been impossible to respond to all the emails, calls and texts all wanting to know “How is Evan?” Now that things have calmed down a bit I decided to put up this blog so everyone can keep up with with the latest news about Evan. We still welcome your calls, letters, emails, etc however this blog will serve as a central place for everything Evan.
I was optimistic when I arrived and had a little fun sharing my breakfast banana sticker with Evan.
Toda
y was a fairly difficult day. When “awake” Evan was pretty much miserable. He spent the better part of today trying to find his comfort zone. Constantly squirming, grimacing and whining. After a couple hours into each episode we had the nurse help him relax with a dose of meds to calm him and let him get back to sleep.
As of today he still has a feeding tube in through his nose. For several reasons this isn’t a good long term solution. The Doctors had scheduled him for tomorrow to have a longer term feeding tube put straight in through his side. In the late morning he spiked a 101.7 fever which led to a blood test that revealed some sort of infection brewing. Surgery has now been postponed until sometime next week.
It is now after 10PM and Evan is sound asleep. His nurse for the night shift (7PM-7AM) is one of the best. Not much more I can do for him now so I am going home.