Saturday, January 31, 2009
Friday, January 30, 2009
Thursday, January 29, 2009
Wednesday, January 28, 2009
Thursday, January 22, 2009
Wednesday, January 21, 2009
Wednesday, January 14, 2009
Tuesday, January 6, 2009
Sunday, January 4, 2009
It's been a long weekend and we are looking forward to Monday, to get things moving again. We are so sad to see our doc go for a month but he really is only down the road at another hospital and can be reached it we need him. The other doc covering him is great it's just that we have a system with Dr. R that is very comfortable and convenient for us, meaning that we don't have to go through a lot of questioning when being admitted and we never have to give any information as He knows all of Gavin's information. But we'll sit tight, and it will be good to have a fresh set of eyes on the situation.
I'll try to update tomorrow after we hear the results of the ultrasound.
Saturday, January 3, 2009
With that said -- Today Gavin took a turn for the better. So we all sigh with relief but at the same time our frustration levels rise even higher as we have no answers for the chaos churning in his body. These are the things we know:
Gavin's blood counts dropped and today he will be transfused.
An ultrasound yesterday sent panic through the chain of command that Gavin's spleen is "huge" (we already knew that -- but it was interesting seeing the look of their faces)
That same ultrasound also revealed that Gavin has Gallstones -- go figure. I guess he has been sneaking way to many double cheeseburgers. The doc does not think that this is related to this current episode but now we have another problem that needs to be monitored.
We did a culture from his J tube which still shows fungus living in the bowel, which can be normal but we were hoping there wasn't any as he in on so many anti fungals and as we know from history whatever bugs are in his bowels will eventually end up in his blood stream.
Our doctor is going to be away for one month starting Monday. Ahhhhh -- can you sense my panic? Thankfully today he will be sitting down with both Adam and I and discussing every possible scenario and what we need to do while he is gone.
Thanks so much for all the support on our last post. Adam and I sit here at the hospital and read them all, which gives is so much comfort. When we are so far away from reality is is often to easy to get lost and feel alone. Thanks for choosing to be apart of our life.
Friday, January 2, 2009
The IVIG went well yesterday and he actually seemed to be feeling a little better after the infusion, but that was short lived
I'm here alone with Madison today and to be honest I am so tired. Thankfully, the Child Life program is open today so I just dropped her off, where she hopefully will have a fun filled day of play time.
I am so frustrated and tired of all this. I just wish we could have the next year spelled out for us -- I want to know exactly how things are going to go, which I know, no one can tell us. We are just looking for some peace amongst this chaos -- I know it's there, I know He is there, it's just so hard to find sometimes.
Thursday, January 1, 2009
Cultures are still negative, we know they will grow, it will just take time. The plan today to to give Gavin an IVIG infusion, which should help boost his low immune system and help him fight infection. This is the first time Gavin will be receiving this type of blood product so please say a pray that he will tolerate it well with no complications.
We are also going to try Gavin on some IV reglan, which is a med he was on for the first year of his life to help promote his belly to move food, or in Gavin's case secretions, out and hopefully help decrease his terrible reching.
He looks very sick to us and my hope is that his culture grows out today and we can pull this line and get him feeling better. I realize the impartance of keeping a central line as long as possible but I just really want to see him acting like his normal self.