It has been a
busy week! We left for the University Hospital at 6 am on Tuesday; Ella and Timmy went in for their surgeries right on time, First Ella then Tim.
The doctor came out to talk with us twice, sitting in a chair and telling us about Ella's ears. He said that it was not easy and it took longer than usual for him to put her ear tubes in because of her anatomy; her ear canals are extremely tiny and long. He said that she had a lot of thick fluid with the viscosity of egg whites in her middle ears which they suctioned out. The doctor said he had to adapt the T-tubes by cutting bits off of them to make them fit. He said the other tubes placed in July were gone. We agreed that since this seems to be an ongoing problem for Ella that we will need to continue to monitor her hearing... as we have been. She is scheduled for another ABR, this time at the University Hospital on December 5th.
As I understand it, Timmy had one tube left but it was removed and a new tube was placed in his other ear where there was none.
The hope is that he will end up with a hole in each ear that will allow for natural drainage when necessary, until he is older. That's how Joel's ears are now, last I heard. Come to think of it, the doctor didn't seem to have any concerns over Joel's ears at the appointment on Monday, we mostly discussed having Joel's large tonsils and adenoids out and how to do that with Coumadin involved...still working on connecting him with Joel's cardiologist who is on vacation this week.
Just as we were checking out of the hospital Mike was attempting to tube feed Timmy and it wouldn't go down. Finally it did. But then when Mike took the extension tube out of the button, the contents of Tim's stomach began spilling freely everywhere-- obviously the stop-flow mechanism inside the g-button was broken. The nurse gathered something to sop it up and then we plugged the extension tube back into the g-button to stop the flow and the nurse wrapped it onto his belly with some bright green stretchy material. We figured out that the little soft plastic outer stopper on the g-button closure flap had broken off and had been pushed down through the g-button, thus the difficulty getting the PediaSure to go down the tube and then the broken interior stop-flow.
Here we were at a hospital already but needing to go to another hospital because of his other doctor's office being
there... so instead of going directly home we had to drive three hours to have the broken g-button removed (as it's not the water-bubble type--Timmy's stomach acid eats through those too quickly) with a special tool and replaced with a temporary Mic-key until a new Bard could be ordered and received in office.
Well, Timmy didn't like it, no surprise! Who would? And yes, the small stopper was inside the "basket" at the end of the g-button.
The problem was, the Mickey was a 14 French and the Bard removed had been an 18 French (diameter of tube going through the skin and into the stomach). 18 French is the smallest Bard makes, but like the doctor said (who came in to chat with us) it's like a freight train in such a small boy. But, the other non-bubble type of g-button had only lasted in Tim for 24 hours and he pulled it out and he was going through the Mickeys too fast.
They also cauterized Tim's stoma while they were at it, with a silver nitrate q-stick. His stoma bled and leaked like crazy the next couple of days and the stomach acid was burning his skin. We were giving him OTC pain reliever but as you can imagine, school just didn't work out this week.
Wednesday was Ella's IEP with EI providers and her new school's team. That was actually a fairly fun meeting this time and I'm very encouraged that Ella will receive speech
and hearing therapies in preschool beginning December 1st. They will use both sign and try picture exchange with her as communication is her greatest need. I have noticed her mimicking people's hand gestures more and more and she uses several signs at home, including: "more", "all done", "baby" and her own signs for "bottle" and "pick up the baby" (meaning herself). Yes, we're still working on getting rid of the bottle.:o(
Ella's Early Intervention PT saw her professionally for the last time on Wednesday afternoon. Her developmental therapist saw her for the last time today. Her speech therapist came for the last time a while ago. It's hard to believe we've come to the end of a very long-term working relationship with these women after nearly 8 years of having them in our home each week. Sue and Krista have been with us the whole time, with each of our youngest three! And Cheri has been with us at
least half of that time. Each of these ladies are really great at what they do. I consider them some of my best friends and hope to stay in touch.
So many other things going on... Working to keep our foster license up-to-date... photos for the Angel Tree ornaments... attending book club... drawing floor plans for a house... washing, drying, folding mountains of laundry... hoping to adopt one last time... giving meds, feeding kids and washing dishes... changing and bathing children... wondering about Christmas... scheduling lots of appointments... keeping in touch with loved ones, praying for everyone and trying to plan more birthday parties for this weekend.
Did I miss anything? Oh yeah. Thursday Lora and I drove Timmy back to the doctor's office and the nurses removed the temporary Mickey button and then used the special tool to put the new Bard button in. They also cauterized his stoma again and it hurt when they put the new button in. Poor little guy!! It's still pretty sore today so I didn't try sending him back to school. His skin should heal some this weekend if he'll leave it alone. He's a sweet little guy and so loveable. It's hard to see my baby have troubles like this!
