Hope

I had to wait two days to blog about Wednesday. If I didn't this post would have been filled with way to many emotions and I just couldn't go there. Now that we've had a buffer day I feel more level headed. Taking Kyle to the hospital for anything is hard on all of us....and by all of us I mean our entire family. Alex and Jack always have 100 questions and Alex always gets this look of fear on her face. For Mark and I anytime we have to watch our baby rolled into the OR and put to sleep it's beyond painful. We know that with Kyle nothing ever goes the way it's supposed to and we usually get some bad news during this process. I have to say Kyle was nervous this time, he asked us a few times if this was going to be like last time (his last major surgery) we reassured him that is wasn't that this would be quick but that he would wake up with a tube in his nose. The tube was super important and it would hopefully help us get his tpn hours down a little. I have to say he was totally cracking us up on the way to the OR, this kid knows the drill and was asking for the white sleepy medicine.

We expected 30-60 minutes of wait time, a quick scope and tube placement....after an hour we started to get nervous...once we hit 2 hours we knew there was a problem. His dr came out and the look on her face said it all.... The tube could not be placed it became dangerous to keep trying, his lugs were not happy and they had to re intubate him 3 times....steroids were given and breathing treatments started. His anatomy is to complicated and they couldn't get the tube far enough down. They also discovered a pocket located and attached next to his esophagus where spit and bile are pooling and this is why he's vomiting so much....

So where so we go from here, Monday we'll be admitted and Kyle will have a blood transfusion....he's not making the blood he needs and now is severely anemic. Next Friday we head back to the OR and a new team along with Kyle's GI dr will try again to get the tube inserted. They are promising nothing but we have to try again, Columbus needs this info to plan our trip there....if we can get feeds started this is major for us and for Kyle...if we can't....well we are not going there for now. We just aren't.

Kyle's had a fat lip and a bloody nose, vomiting alot and overall sad since Wednesday...We are trying so hard to keep him comfortable, happy, safe...I feel like we are failing him on all fronts. I can't go inside of him and fix his body.....it's horrible to be able to do nothing to bring comfort to your child.

This weekend we are just hanging as a family and trying to keep Kyle and the other kids surrounded with love. We still have hope. After a phone call with Kyle's dr late at night last week she said, are you giving up? You sound sad. I let her know I will NEVER give up on Kyle, never...but am I sad....yes. Very sad. But I still have HOPE, and I will have hope even after they tell me not to.
Kate

Balance of Life

I have written before about juggling one sick child and two healthy ones, it's a constant struggle to keep our family in tact while keeping Kyle safe and Alex and Jack stimulated. We spend ALOT of time at home....that's Kyle's safe zone, I have everything here I could possibly need for any crisis that he could have....and sadly his crisis can come on fast and violent. Sadly the other two kids alot of the time are home with us and while it's nice to keep us all together it can take a toll on them. Both Alex and Jack know nothing different then living life with their brother, Alex was only 3 when Kyle was born and Kyle was only 17 months when Jack came along. They never complain about it but when things come up and they get to go, they are so super excited. The amazing thing about when the kids are not together is that they are constantly calling to check on their brother and me.....this weekend M took the kids to the lake and Kyle and I stayed here to spend some time together...its been an amazing weekend for all of us. The kids and M are having a BLAST, and Kyle (while really not feeling well) has had his Mommy right beside him all weekend (if you know Kyle you know this would make him VERY happy) We have been working on some things that he will need to do to go to Kindergarten (his mother is still not ok with the whole K thing, but he's over the moon!) He's in full countdown mode for K...I'm so scared that his energy level will be so poor he won't make it but I have to let him try...it's not about me anymore, it's about letting him live life to the fullest as much as we can. That my friends is far easier said then done.

Last night Kyle came out into the kitchen and asked what I was making for dinner, since the kids weren't home I had made myself a bakes potato, so I told him I would split it with him....he climbed up to the table and started to cry....I asked what was wrong....and he said, Mommy I'm just sooo hungry. :( He wants to eat by mouth so badly.....it almost broke me....these are the things that are getting harder and harder for me to stomach.

I'll be back soon with updated pictures!
XO
K

Unreal

It's unreal that I've gone this long since updating....I guess it's good to know that if things were bad or we were in the hospital we would be updating more. Things are still the same...same issues, no word from Columbus yet. I know that there is alot to organize but we need a date...there is so much to figure out once we get date that I know my anxiety will be better once I get that date. Kyle is still having the same issues..although since last week he's been struggling with his lung issues and it's concerning. His iron levels are really low and it seems like he's losing blood from somewhere, we have given iron infusions and he's not getting the bump we need from it. His energy level is low and the anemia is clearly causing him some issues. We head back to MMC on the 18th for a scope (to try to find the source of the blood loss) and also to insert an NJ tube (which will make Kyle very angry when he wakes up and has that in his nose) the hope is that we can thread that down far enough into his new anatomy and we can try to feed him that way. This will give us a good look at what his bowel is now doing since his surgery. We can not feed thru the stomach but are so hoping we can if we can get the tube down far enough.

The last week was spent with amazing friends that traveled so far to see us! It was probably the best week we've had in years. I have to say that for weeks I hoped that Kyle would stay well enough to just get thru the week...he did amazing! He did far better then I could have hoped or expected! We were all spoiled rotten and I have to admit it felt really good! :)

Now it's back to reality and trying to get Kyle ready for Kindergarten...oh....that's a blog for a different day.

XOXO
K