Friday, January 28, 2011
We are going to switch him to continuous feeds though versus the bolus ones. His reflux has gotten worse and the thought is that if he is fed over a longer period of time, meaning his food goes into his feeding tube slower, then it should help his reflux. We need to do everything we can to manage that because we want to hold off as long as possible on him having another surgery on his trachea to insert steroid shots in it to keep the edema (swelling) down.
We should be getting the pump and other equipment by Monday or Tuesday depending on if the medical supply place has it in stock or not. They are usually pretty good about getting us the things we need in a timely manner.
I am also test driving a Honda Odyssey today. They let me bring it home and we bring it back in tomorrow morning. So far I really like it. Getting Will in and out is a breeze. It has a ton of room and is loaded (leather heated seats, DVD player, automatic doors etc). Matt and I will go in on Monday to talk numbers to see if it will work out. I hope so!
We are meeting Joanne and Lindsay tomorrow in Mackinac City for lunch and to bring Joanne back up here with us for about a month. I am so excited to have her stay with us for awhile. I have the BEST mother in law in the entire world. Will is going to get spoiled rotten for sure. I have been showing pictures of Joanne (Nana) and my Mom (Oma) and trying to teach him their names. Yesterday it finally clicked and he calls the pictures Na and Ma. I hope he realizes that Na and Ma are people not just pictures lol. I am excited to see if he calls them that tomorrow.
I can't wait for our fun filled weekend!!
Monday, January 24, 2011
I want to know that we have exhausted every other option before turning to the Nissen surgery. I have talked to other parents of children who have had it done, and most do not recommend it. It is a dangerous surgery, and even more dangerous to have it reversed if it doesn't work out. One of the things that I have learned throughout all of this with Will is to trust my instincts. Right now, my Momma instincts are telling me that this isn't the best choice for us at this time.
That is all I have for today. I am just trying to get through this latest stuff for now. It is really starting to wear me down. :::exits blog repeating, "it could always be worse, it could always be worse.":::
Friday, January 21, 2011
I think the next step is going to be to do a surgery called a Nissen fundoplication. It is where the upper part of the stomach is wrapped around the lower part of the esophagas and stiched into place. It is done so that the patient no longer is able to throw up. More information can be found here http://en.wikipedia.org/wiki/Nissen_fundoplication
I am really hoping to avoid this surgery. I don't know why, but it really scares me. They talked about Will having it done back in November when he had his feeding tube put in, but Matt and I were not ready to take that drastic of a step yet.
Please pray that Will is not going to need this done. I feel like I am reaching my wits end this week with all of his medical problems. EE, GERD, sub-glottic stenosis. When will it get easier? When will this start to feel normal? Does it ever?
I will try to update more later, right now we are playing it by ear. I am suppose to call his G.I. doctor today to update him, but I am honestly scared to because I don't want him to tell me that we need to head back down to Grand Rapids for another surgery this week. Will is 17 months and he has already had six surgeries and he has been sedated eight times. ::sigh::
Saturday, January 15, 2011
We also had to stop by the mall so I could return some things. We didn't end up getting fancy for New Years Eve afterall so I couldn't justify keeping that little red satin number. Will liked playing in all of the cars that you can ride there. They are .75 cents each, he doesn't need to know that they are supposed to move right?! I am good with letting him think they are just there to sit in and get your picture taken!
Then,last night Matts friend Jay and his son Vinny came over for a play date and dinner. Vinny is only about 6 weeks younger than Will so it is nice to get them together. Matt made some yummy pasta and Jay brought garlic bread. It was a very nice dinner!
Vinny and Will had fun playing together in the playroom. Turns out, Vinny is quite the drummer! He also likes to give hugs while saying, "Awwwww". It is so cute!
It was a very good day yesterday and I am looking forward to a very good weekend. Especially tonight since I am meeting some girlfriends for some drinks. Yeah!!
Thursday, January 13, 2011
Tuesday, January 11, 2011
Monday, January 10, 2011
Will did awesome at his doctors appointments. He had them Tuesday and Wednesday. We switched around some medicines and I am crossing my fingers that they will work better. He has been throwing up a LOT lately. We are giving him through this next weekend to see if these will help before we try something else.
We got to spend sometime with my sisters while downstate as well. Jill's apartment is really nice. Jenn and Isabella (my niece) came to visit us there as well. It is so great to be able to see them regularly even though I live about 8 hours from them both. That is one good thing about having to make regular trips downstate for Williams doctors appointments.
Matt's Mom wasn't able to come back up with me this time. Lindsay (Matts sister) will bring her up on the 29th for a visit. I am looking forward to having her for sure! Like I have said before, she is a great Mother in law.
I will update with some pictures tomorrow of our trip. Will rode on two different carousels. He loved them, well until we had to get off that is. Have a great day everyone!
Sunday, January 2, 2011
Saturday, January 1, 2011
This morning we went out to breakfast with my Mom and John. Then they came over to pick up their dog Buddy who spent the night with us since they went to a hotel in town to celebrate New Years Eve.
Will and I are headed downstate again on Monday for appointments he has on Tuesday and Wednesday. His Tuesday appointment is with his ENT doctor to make sure everything is still going alright with his Sub-Glottic Stenosis. Then Wednesday's appointment is with the surgeon who put in Will's g-tube. Will is having a lot of granulation tissue build up around the g-tube site so they need to figure out what to do about that.
After all of his appointments, we are going to go see Jennifer (my sister) in Lansing and then on to Jills (my other sister) in Sterling Heights for a day or so. Then I am going to pick my wonderful Mother in law up and she is going to stay with us for a few weeks. I am so excited to have her! I have an awesome Mother in law and am so happy to have her come stay with us.
I think I am done revamping things around the house again. At least until we get out tax returns back. I will update tomorrow with pictures of what I have been up to the last couple of days.
Happy New Year everyone!!!