Down syndrome: A family’s journey
7-18-10
Eric Waksmunski
Both Shane and Wyatt are home. Mary spent all day in the ER with Wyatt for a procedure that took minutes to complete. I think everyone is ready for bed. Everyone except Wyatt, Shane and Jesse.
7-18-10
Eric Waksmunski
Hopefully Shane come home today. Wyatt is on his way back out to have his G-Tube replaced. Mary is spending this hot sunny afternoon at Janet Weis Childrens Hospital for what could be a long day. She went out there with a Nurse to help but still she is not a happy camper today. We have not yet made it one week with boys boys home.
7-17-10
Eric Waksmunski
The port on Wyatt's G-Tube split and is now leaking. It is taped up for now and we will be taking him to the ER soon. always something
7-16-10
Eric Waksmunski
Well, it looks like Shane will be home on Sunday. Still on the antibiotic and appears to responding well to it. He has an E-coli bladder infection. He will also need further tests afterwards for a urinary tract problem. It appears that urine may be leaking or backing up in the kidney. Mary just got home and said t...he doctor was having a hard time explaining what they suspected might be the problem. We will talk with the urologist on Monday. I am so confused.
7-14-10
Eric Waksmunski
Shane is back at Janet Weis Childrens Hospital and was admitted tonight with some sort of an infection. There was talk that he would need to have surgery but the doctors have decided to wait and evaluate him again tomorrow. He will receive an antibiotics by IV and they will continue feeding him throughout the night. I guess here we go again
7-5-2010
Eric Waksmunski
Wyatt is on his way home right NOW!!
7-5-2010
Eric Waksmunski
We got the call, Wyatt is coming home!!!
7-4-2010
Eric Waksmunski
Wyatt is due to come home. He had a stomach problem last night that caused him not to feed and to take fluids by IV. His antibiotic ends today and lets see how he does tonight. We did not get to the hospital today and the nurse this evening knew nothing about him going home tomorrow. Hmmmmmm, wonder what that means.... I am still going with the plan that he comes home. Let's not get started with the setbacks again.
7-2-2010
Eric Waksmunski
Shane is home!!!!!! Sorry that I didn't post earlier but it has been a long day. I will also post some more pics tomorrow. Wyatt is coming home on Monday and I can't wait. Wyatt has never been home and he will come home on the four month mark. What a long journey up to this point. The next chapter is about to begin.
7-2-2010
Eric Waksmunski
TODAY!!! We are heading to the hospital soon to get Shane. HEY SHANE, Mama and papa are coming to bring you home, again..... for good!! WYATT, coming back Monday for you so pack you bags and get ready to start life at home. Four months is way to long to stay in the hospital. One day, we are going to Disneyland!!!!
7-1-2010
Eric Waksmunski
Shane will be home tomorrow. Wyatt on Monday. We are getting closer
7-1-2010
Mary Kate Christo
Spoke with the Genetic Counselor today. Both boys have what is called the non-disjunction form of DS. The typical Trisomy 21. Three 21st chromosones. The most common type of DS. They were tested for translocation(which is genetically passed on). They do not carry that gene. Which means we do not carry that gene. Thought this was interesting and informative!!!
6-30-2010
Eric Waksmunski
Start the count down to Friday afternoon. Shane will be coming home Friday afternoon!!
6-29-2010
Eric Waksmunski
Shane is coming home this Friday or Saturday. Wyatt is coming home Monday or Tuesday
6-29-2010
Eric Waksmunski
The boys continue to improve and do well. Right now Wyatt is still fighting an infection and is still on an antibiotic. Both boys are on all bottle feeds and are taking no food through the G Tubes. At last feeding Shane took 70ml's of formula and Wyatt ate 87ml's. I guess they get what ever they can eat in 30 minut...es and they are being feed every three hours. It would appear that the Fundoplication Surgery was the right call. It nearly killed both of them the week to ten days afterwards but today they appear to be responding well to the feedings. YEA!!! GO SHANE, GO WYATT
6-27-2010
Eric Waksmunski
No update today. Mary told me how they were doing but I have become so sick that I cant see straight or think about what she said. I know they were having a good day. I cant remember anything else. Sorry and g'nite.
6-26-2010
Eric Waksmunski
Wyatt's Red Blood Cells dropped below the magic number and tonight he is getting a blood transfusion. So I guess this would suggest anemia? Both Shane and Wyatt are eatting well. Overall, they continue to improve
