We were able to have a little family time at the hospital recently with the trach training classes. Here is a picture of Max being SO serious. I tried to match his seriousness but had a difficult time:
Max is on a high dose of Viagra as well...for blood pressure reasons. One of the side effects is sweating, so it is not uncommon for us to get to the hospital to find him hanging out in his crib in just his diaper. A far cry from the 90+ degree, 80% humidity incubators they were in for so many months!! Max also really likes holding on to his G-tube, and I think it looks hilarious. Note the 17 fat roles on just his arm!!
I will use the above picture to identify all of the pieces and parts that make up the "total package" that is Maxwell James Wiersma. The button he is holding in his left hand is the port that goes directly into his stomach for feeding. The rest of the stuff is part of the ventilator setup: the two tubes along side his head are the air and humidity delivered by the ventilator and the other tube is to help in exhaling, the sensor that is covered by Max's right hand is called a "flow sensor" and that detects when Max is taking a breath and that triggers the vent to do its thing, then the multi-colored tube thing that is wrapped in plastic is called a "ballard" and that is how we suction Max out. The trach tube occupies his entire airway, so the natural mucousy stuff that you and I cough up or swallow stays in Max's lungs until we suck it out. The other stuff is just leads for heart rate and respiration monitoring.
No real changes to report with Wes: still crazy, still retching. We are going to try a chiropractor for a couple of weeks and see if that makes any difference for his comfort level before trying the more invasive options to cure the reflux issue. Please join us in praying that this will be the path way towards resolution of this obnoxious, heart breaking issue. Wes has not been gaining weight at nearly as fast a pace as his BIG brother. He weighed 13 pounds 8 ounces earlier this week, which is the same as his weight from two weeks ago. Needless to say, I think it is time to crank the feedings up again, we just don't want to cause him any undue stress.
Wes has also developed a new hair due that looks a lot like a mohawk, or a fauxhawk for the purists. Straight out of the bath his hairs sticks up. Now if it would just curl...
Wes has also developed this desire to lick the side of my face when I am giving him "zerberts" in the bath tub. It is a little odd and Kate finds it really hilarious, so I have added a video of it below:
On a somber note, Kate's Grandma Blauwkamp passed away on Monday. She was 94-years old and lived a very full, very happy life. I will never forget way back when I first started dating Kate, I was often doing service calls to the Royal Park condominium complex where Grandma and Grandpa lived. Without fail, I would get a root beer float with Butter Pecan ice-cream every time I stopped by to say "hi." Kate and I later lived in their condo for nearly 4 years after we got married, and it was a fantastic place to begin our lives together. There was a 30+ year age gap between us and all of the neighbors (it is a retirement community where you have to be 55 or older to own on of the condos), but after 3 and a half years, we ended up making some good friends. Kate was sitting with Wes on her lap when she got the call that Grandma B. was in Heaven. After a couple minutes of processing, she looked at Wes and said, "Grandma Great is in Heaven with Grandpa Great" (Grandpa B. passed away 5 1/2 years ago)...Wes grinned from ear to ear. Then Kate said "Grandma Great gets to sing with your Grandma now too." Wes smiled again.