It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.
So, our new plan. On Tuesday Kyle will head back to the OR to place a pacer(a temporary pacer a permanent one will not be placed unless we see it working) in his small bowel. While gastric pacing is more common we know that trying to pace Kyle's stomach will not do us any good. So the surgeon is going to place one in his small bowel. Not done very much but we are willing to try anything at this point. It is our second to last option before a transplant. The word transplant is being said with much more frequency around us and it's brutal to hear. But that's a post for another day.
For now we are enjoying the kids being here for a few days and I am holding them and loving on them every single second. It was a brutal drive for them but Mark was amazing and it's been so uplifting to have them here. Hard for them to see Kyle in pain but they are handling it so well....we have had some talks with them and they know that him and I will be here for a while. They are so strong and so brave. I'm so proud of them.
Friday, November 26, 2010
It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.
Posted by Kate StClair at 10:47 AM
Thursday, November 18, 2010
The last few days have been tough for us. While Kyle is healing as expected from surgery we are having a very hard time getting anything started through the new j tube. It's been a heart wrenching process of trying and then watching him be in agony over it. Each time we start we have to stop hours later due to pain and his increase in bile and output. The NG tube that is in his nose that runs to the bottom of his esophagus that should have been out days ago is still on suction to try to keep the bile that's going up instead of down out of his lungs. We tried yesterday to cap it off and he suffered all night because of it. The surgeons and GI team aren't happy and have said we need to start looking at more aggressive options for him. The fevers and blood pressures are still an issue and that is troubling me. We all agree that Kyle's body still needs time to heal and we are going to go home and take a 4 - 5 week break. We will come back to Columbus at the beginning of January. Over the next few weeks we will have to make some difficult choices for our Kyle and the pressure of that is already weighing heavily on us. I'm so incredibly grateful that Kyle's team in Maine has been literally walking beside us through this whole trip here and are prepared to help us get him back to MMC and then home for at least some time. We both need some mental cheering up. It's been hard to watch Kyle mentally stress, sometimes I think watching that is almost as hard as watching the physical side of this. We both are spent, I'm not as strong as when this started, small things seem to crack me and I know we need to recharge.
What I can say is that we are NOT giving up on our dreams for Kyle...while others this week may be doubting Kyle's gi tract I know Kyle, he needs more time, more healing, more love and snuggles from his family in Maine.
Posted by Kate StClair at 5:57 PM
Saturday, November 13, 2010
I didn't realize yesterday that my blog could be taken the wrong way or that anyone would take from it that I was saying not to pray for Kyle. A comment was left on Team Kyle last night that honestly was hurtful and confusing to me. I won't post it and I won't directly address it again. What I will say is this....I value and appreciate all prayers being said for Kyle...while I may have some issues with God, he for sure does not. We don't publish everything here on this blog, some things remain private for our family and our children. We have had to talk to Kyle about heaven and God....for me it's a very difficult and sad topic. No child at the age of 6 should have to have that conversation...ever. I don't care what anyone says to me, that conversation is one that should not have to be had. We've had to talk to Alex about it, I can say it's almost as painful. While I want my children to know God, I don't want them to be afraid that they will need to go to heaven now. I also know that god can be a heavy topic, I never post about it lightly. While I say all that please know that this is out blog....as long as I'm not hurting my children or my husband I will write how I feel. I have watched the sweetest child suffer for 6 years, I've watched my family almost fall apart around me, I have ached to my core. I won't ever again justify my feelings.
I thank God for my son....I thank him for the time we've had with Kyle, but I won't thank him for the pain I watch daily. I'm trying, trust me I'm jealous of the comfort people get from God...I really am. I want to get there, and I hope I can someday. But please.....I am so grateful for your thoughts, love and prayers.
Posted by Kate StClair at 8:34 AM
Friday, November 12, 2010
Ahhhh, I bet a few of you clicked over thinking that maybe I was writing to the big man upstairs again, nope...not happening...him and I are still on the outs...although I may talk every single day to my Mom and MIL (because for sure if there is a heaven my mom and mil are up there) I still struggle daily with you know who...I can't begin to wrap my head around all this, nor can I make sense of any of it. So for today I'll spare you my angry thoughts about the big guy upstairs.
Kyle...Our Big Guy....
It's been a tough month for you little man, your struggling and neither your Dad or I can help you...we can hold your hand, we can kiss your sweaty head, we can whisper in your ear....but we can't take any of this away....it's a helpless feeling. When your little eyes plead with us to make it stop it's like something taring at my soul. I sit and think alot, I wonder how on earth such a tiny body can fight so hard, I wonder where you get the strength to keep doing this....you never ever give up, it's almost like each day you fight harder, more determined to beat this. We have no idea if the surgery worked or not, right now you've got the surgeons scratching their heads and feeling frustrated....but your Dad and I know you, it takes time and we haven't given up on a better quality of life for you. You deserve us to keep fighting and we will....whatever it takes Big...
I could not be any prouder to be your Mommy
Posted by Kate StClair at 5:09 PM
Wednesday, November 10, 2010
"Our Kyle has once again shown us how things will go...he's off the vent and breathing on his own....clearly still on oxygen, but he's resting comfortably right now. This is step one"
He was even a little ticked off about missing Bingo in the playroom last night :)
Living Life for Today ♥
Posted by Kate StClair at 2:19 PM
Tuesday, November 9, 2010
Kyle is out of surgery. Heading straight to ICU. He is stable but on a lot of support. Surgeon had to do extensive repairs. Will update with more details tomorrow. Pray for a peaceful night of rest for Kyle, Kate and Mark. They appreciate everyone's love and support today and always.
Posted by Kate StClair at 8:57 PM
Kyle has been in surgery for about 3 hours now. Kate just heard from the OR and Kyle is doing ok and the surgeons are working away - that is all. Keep praying...
Posted by Kate StClair at 6:25 PM
This is Carissa with a quick update on behalf of Kate and Mark. Today, after a 3+ week wait in Columbus, Kyle will be finally undergoing his surgery. It is scheduled for 2 pm and will be a long and complicated surgery. I will try to do a few updates here as I get them since I know a lot of you are not on facebook for the updates. If you are on facebook, you can follow along with Kyle's journey on the Team Kyle page. There has also been a fund set up for the family to help with everyday expenses that are building up - if you'd like visit the I *heart* KyleStClair page to learn more!
Thank you for loving Kyle and the whole family! Keep the prayers and good thoughts coming, they mean the world to the family!
Posted by Kate StClair at 2:21 PM
Sunday, October 31, 2010
I have heard numerous times people use the quote, having a child is like watching your heart beat outside your body....when you have a child who is scared, in pain and that you could possibly lose...it's so much more then that...it's like your entire body is thrown into trauma..it's like watching you entire life slip between your fingers, and there isn't a damn thing you can do about it.
I don't have time to get into the details...I hope to be able to fill in the gaps soon....but the long story short is that Kyle is sick. On top of his complicated issues he got a massive infection in his gall bladder, one that could have in hours taken him from us. He became very septic and was taken into emergency surgery. There is a whole long story about why they put a drain in instead of taking the gall bladder, to put it simply he was far to sick to open him up...on top of that his anatomy is so screwed up it put him into a dangerous category.
He's off the vent but is struggling, he's on alot of oxygen and working hard to breath...his labs aren't great but are slowly improving, we have a long way to go and this is a major complication to his next surgery.
Please keep praying and love our family....
Posted by Kate StClair at 10:14 AM
Sunday, October 24, 2010
Early Saturday morning the surgeons came in to tell me that Kyle's line grew fungi. It was like a kick in the teeth, fungi is one of those bugs that you really don't want, it's very hard to clear from lines and it can make kids incredibly sick. We started anti fungal meds immediately and we moved on with our day. I won't get in to the specifics of how I found out that we are now pulling Kyle's line this morning or my thoughts on that because we'd be here all day and I don't have much time. When they pull the line they will place two normal IV's and then we start to hope and pray he doesn't blow those (which we know he will) before tomorrow am... He blows those lines so quickly. I told the dr last night I'm not torturing him all day today so we need a better plan then re-sticking him 100 times....he's a terrible stick, he's had so many IV's, lines, and blood draws that there isn't much left. As for surgery on Tuesday we have been told to not be very hopeful about that...which I'm trying so hard not to focus on today. I can't change any of this I just need to get us thru it.
Will update later tonight.
Posted by Kate StClair at 7:25 AM
Wednesday, October 20, 2010
I am..I can't even believe I'm about to have to type this let alone it be a reality. Yesterday we came in early for Kyle's upper UGI and swallow study. Honestly I knew it was going to be a disaster..I mean really a swallow study on a kid who doesn't drink by mouth?! We got registered, got checked in and made our way to flouro....started the test, and then sat there and watched as they injected dye into his g tube and waited....and waited...and waited as it sat there and didn't move. We waited and watched as the barium made it's way up....not down the way it's supposed to go. We watched it snake it's way up into the loops of bowel that are now in Kyle's esophagus....I could literally feel myself start to sweat. The the dr says ok I need him to drink....yah ok so they give me a syringe and into his mouth I go, at this point feeling like the worst mother on the planet...he starts to scream and choke but does swallow....and we wait and watch again as the barium pools at the bottom of his esophagus and goes no where. At this point the Dr says..get up and walk for 30 minutes and we can take another series of pictures...we then repeat this step 3 more times....and we watch as the barium continues to go no where.
After all this Kyle is exhausted and just wants to get to his room to rest, we go through admitting and get to our room. About 20 minutes into this process Kyle starts to complain that he's cold, which is always a signal that a fever is coming, I start to think that's impossible, I mean really....there is no way this could be happening, but it is and within another 20 minutes he hits 102.6. Blood cultures are drawn, a full viral workup is done and we get a chest x ray. The surgeon comes in and explains his plan for the next day and says....well clearly surgery depends on if we can break the fever and he stays fever free until surgery time. Fast forward to 4 am today and back up to 102 we go.....5 am...98.6. Confusion is setting in and we can't figure out where the fever is coming from and if they will pull the plug for sure or not. At 1 today the surgeon comes in and says it's to risky to perform this major of a surgery with a potential of anything already going wrong in his body. Which we totally agree with, but it stings...big time. They can't get him back on the schedule until Tuesday...so here we sit. We haven't even had time to figure out the logistics of how we are going to do this, I can't even think about how long this will keep me from Alex and Jack.....we haven't even really told him what's going on yet....
Posted by Kate StClair at 3:36 PM
Monday, October 18, 2010
I swear she knows more then me...seriously. Sometimes she looks at me and I think how can she only be 9, is that possible?! I didn't have any idea 9 years ago when they said....your having a girl how important her birth order would be.
At 9 she can..
Turn oxygen on and put a nasal cannula on her brother
Burp a g tube
hold a puke bucket (this may not seem like a big deal but when your 9 it is..)
disconnect Kyle's g tube from his ferrell bag
give a breathing treatment
take a diaper off
take TPN off an IV pole
untangle numerous lines and tubes
protect...love...and respect her little brother
Say good bye to half her family for who knows how long and only let a few tears slide out....
She is amazing, she loves and hurts just like so many other children...but the level of that love and hurt is so much different.
I worry sometimes if we are doing her right, if we give her enough, if we show her how amazing we know her to be....and then tonight as we skype and I see her sweet face cheer that her brother lost his first tooth tonight, I realize that somewhere, somehow we are doing right by her.
As for Kyle, he goes inpatient tomorrow morning and we start a full day of testing....surgery is still scheduled for Wednesday. Nervous...petrified....it's a very big day for all of us...
Posted by Kate StClair at 7:11 PM
Monday, October 4, 2010
This is one of those post where I start and I'm not sure If I'll finish it or not....
My brain is fired, my heart hurts and I wonder why?
Our little Kyle is still inpatient, the good news is that his 24 hour cultures are negative. The bad is that his temp is literally all over the place. We have had to realize and accept the vomiting and constant reflux. We know we have no chance of getting that better until we hit Columbus. At this point all we are doing here is maintaining Kyle, trying to put out fires and get him safely to Columbus is 2 weeks...we learned yesterday that on top of everything else part of his left lung is collapsed because of the hernia in his esophagus. That's probably why he is requiring the extra oxygen and breathing is so hard on him. I have that Mommy gut...the one that tells me we are missing something, but I don't know what?! If the cultures stay negative by tomorrow night, we are hoping to come home by Wednesday....the hard part is that if any fever comes back, we will have to head right back in.
Amazing....he just keeps going. His strength is inspiring and uplifting. He continues to teach me so much.
I sit here and I can't control the emotions that I feel, I wonder how much we can all hurt, how many times I can watch him in pain or be scared and not be able to fix that....every time I almost feel a little of my sanity slip away, I'm his Momma....we should be able to fix the boo boos...what happens when you can't...how do cope with that?
Posted by Kate StClair at 8:05 PM
Wednesday, September 29, 2010
I hate when I go so long that I don't know where to start. I should start with the passing of sweet Sammy Knight...but I can't seem to get the words into print. When I heard of Sammy's passing...(his amazing Momma sent me a text in the middle of the night, worried I would hear or read about it from someone else) it hurt so badly that it took me a while to come to terms with it...I had to wake Mark up and read the text to him numerous times before it fully sunk in. It hurt for many reasons, some to painful to get into....but what hurt the most was how this amazing, full of life inspiration could no longer be on this earth...how was that possible?! It made me go back to that dark place where I find so much anger at God...
As the weekend moved on I found myself trying so hard to get coverage for the kids so I could get myself to Houston for Sammy's funeral. I so badly wanted to be there to support Missy. On Sunday am Kyle woke up in the early morning vomiting badly with a slight temp. We really thought he had some sort of stomach flu and we started watching him closely. When his temp hit 102.6 on Sunday afternoon I realized that we had to hit the hospital. We were admitted and cultures were drawn. At this point he was in bad shape and it was becoming clear that this wasn't just a stomach bug, although I kept telling myself it could be just viral. I think in my heart I knew we had a line infection. When the cultures came back positive on Monday I don't think any of us were surprised. Because Kyle was needing more oxygen to maintain his sats we did a chest x ray...I could tell when the team came in something was up. His lungs looked ok on the x ray but what was troubling everyone was that it looked like his bowels were once again herniated (I'm not even sure that is a word) into his esophagus. I can say when I heard this I felt like vomiting. Clearly realizing that this would once again complicate his next surgery, not only do we have to fix that pocket that's forming in his esophagus and try to reverse the way his anatomy is plus also place the J tube, but now we have to fix ANOTHER hernia. They also told us that they really are convinced this is all mito and that we need to get to Columbus and figure some things out. We have our dates for Columbus and we will be meeting with surgery, gi and the mito specialist there. His surgery is scheduled for mid October which means we will be in Columbus for his birthday and probably Halloween. I'm not sure Mark or I have actually processed all this yet...we are so focused on clearing his line that we haven't totally come to terms with everything.
I know this is choppy and written terribly...I'm exhausted...worried and heart sick that Kyle will have to undergo another major surgery so far from home.
Posted by Kate StClair at 5:09 PM
Tuesday, September 21, 2010
Since Kyle has started school I find myself overwhelmed numerous times a day with the little things....
~Kyle trying so hard to dress himself in the morning because he is so excited about school. (with a TPN backpack on this can be difficult)
~Kyle making sure I packed his "lunch" so he can eat with the other kids at school
~Kyle pacing in front of the door waiting to hit the bus...then RUNNING down the driveway to meet the bus
~Kyle turning around and telling me he doesn't need me to walk him up the steps of the bus.....big sigh.
~Kyle going to school....making friends.....bringing me art projects, having music class, gym class, and did I mention making friends...his class is filled with amazing kids, who like Kyle for Kyle...
~Kyle coming thru the door and when I ask him how his day was....he says "awesome"
We have been battling a nasty bug that has now officially hit every member of our family, with Kyle of course it's always so much worse. He's tired but so incredibly happy....
Still no date from Columbus, it's starting to make me twitch a little...we need that date. He needs some relief...it's like a ticking time bomb waiting to go off....
We are starting to plan Kyle's 6th birthday party...I say this every single year....I didn't think sometimes he would see 1....so ever year after that I am so incredibly grateful for....we have much to celebrate.
Posted by Kate StClair at 8:44 PM
Thursday, September 2, 2010
Posted by Kate StClair at 7:08 PM
Friday, August 20, 2010
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.
Posted by Kate StClair at 8:26 AM
Sunday, August 15, 2010
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!
Posted by Kate StClair at 8:35 AM
Monday, August 9, 2010
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.
Posted by Kate StClair at 8:32 AM
Friday, July 16, 2010
When you have a sick child you do what needs to be done, I can say at times I don't think about what I'm actually doing until after the fact, things that no mother should ever have to do to their child. When Kyle was in PICU a few weeks ago and the PICU dr was explaining some things to me I totally lost it, which if you know me well is actually unusual, I have gotten pretty good at stuffing these emotions and waiting until Mark and I are alone to lose it....but as I explained to the dr....my mommy brain is tired....my medical brain understands the things that need to be done to keep Kyle with us, but my Mommy brain aches and hurts. For years I really felt like I could hold on to those emotions, the Mommy emotions and shut them off....lately that seems impossible. Everything seems to hurt, and when it's not hurting I'm angry or sad.
We are still at home, and for that I'm incredibly grateful. Kyle's blood numbers are still dropping which isn't good...we are waiting for some OR time to go in and look and make sure there are no obvious reasons as to why the numbers are dropping. We are still messing with med dosages and hoping we can find the right combination to control the vomiting better and to be able to start feeds again, so far thats a no go. Still waiting on Columbus.....it's hard to wait with Kindergarten looming over us....my panic over that is in full force. Although Kyle is beyond excited.... :)
I need to address some questions we have gotten over the last few weeks. Many have asked about a transplant for Kyle.....I should say that we are in no way looking at that right now, we have a long way to go before we get there, many more options to try....while it may seem like we are at the end we aren't...a transplant is the end card one we hope to never go to. For Kyle he would need a very in depth and complicated transplant. His entire bowel, colon and stomach are all affected. We have been told the likely hood of him surviving that are not high and so for us we will keep fighting and trying until they tell us there is no hope. We know that at any day we could lose Kyle, that is something that we live with daily...we try very hard to not let it rule our lives but it's hard. We are working with the palliative care team at the hospital which has been helpful so far....we are doing everything we can to make Kyle's life as happy and normal as possible. We do as much as we can at home and are so lucky that his dr's trust us to care for him in the capacity that we do. I want to stress that Kyle is stable and safe, but he does have a life threatening condition and that has been a difficult thing to swallow.
I'll admit, I'm struggling. I don't want to go back to Columbus, it petrifies me. What we'll hear, being away from Alex and Jack and our family. I struggle daily with how to keep explaining to the other kids why Mommy is always away taking care of their brother....as amazing as the kids are this is horribly hard on them to. We won't leave Columbus until Kyle is better, at this point we need the best of the best.
I don't know how to thank people any more...I say thank you but I feel like it's not enough, the kindness that is shown to our entire family is overwhelming and so appreciated. It's been hard to admit we need help..
Posted by Kate StClair at 4:52 PM
Thursday, July 8, 2010
I was quietly prodded today to give an update...which I have wanted to do for days but just haven't had the heart to do it We are still the same, at home and trying to stay here, are days are very up and down and I find myself so incredibly grateful for the small moments of time that Kyle feels well and is happy...
We are moving ahead with Columbus again and are waiting for a date from them to come back.
Instead of a big update please just remember to keep our Kyle close to your hearts..please.
Posted by Kate StClair at 8:01 PM
Monday, June 21, 2010
I haven't had two minutes to get on line...Kyle came home Saturday afternoon and it's been non-stop since then. But I did want to jump online and say that we are home and safe...trying very hard to get into a routine and once again find our new normal. I promise to be back soon with a full update on where Kyle stands and what our plan is...
But for now, please know how much we appreciate the love and prayers that have been sent our way...
Posted by Kate StClair at 7:43 PM
Thursday, June 17, 2010
Kyle seems to have finally recovered from the line infection, his new line is working well in his chest and tomorrow it will be tunneled and transferred into a central line. He is still vomiting and having belly pain but sadly it seems this is how it's going to be for now. That in itself is hard to process for us....we haven't really come to terms with what all this means for Kyle. Coming into this surgery we were so hopeful....now we feel worse than before. These last few weeks have been so horribly painful...yet I'm not sure either Mark or I have had two minutes to really think and absorb them.
It's very hard to think about what's to come....
Please keep Kyle once again in your heart and minds tomorrow am he will once again have to go under and be on the vent for the 4th time in 3 weeks...
Posted by Kate StClair at 9:00 PM
Monday, June 14, 2010
I don't have alot of time but I wanted to update quickly. Kyle's temp went way up again last night and he had increased pain so we were moved back to the ICU. Kyle was intubated and given a CT scan to check for any leaks or other possible issues in his bowels. His CT scan was clear which is great news. But his blood cultures were positive for a blood infection which is not good. We have pulled his PICC line and placed 2 periferal lines in his legs (over 20 sticks to get 2 lines) We are concerned that the fevers are still high but he's being closely watched. We will update later tonight. I haven't slept since Friday night so while he's comfortable I'm going to try to rest a little.
As always thank you for loving our Kyle.
Posted by Kate StClair at 8:47 AM
Sunday, June 13, 2010
It's me God...yah the one who swore I would never ask you for another thing...the one that goes through my MIL and my Mom who are up there in heaven....the one who prays daily to those two incredible women, the one who basically begs them to turn something in Kyle's favor.
I am now pleading with you, in my head and in writing to please stop the madness....I don't understand any of this, can't begin to wrap my brain around 5 years of hospitals and pain and heartache. I know that I am grateful for Kyle and his fight, it's taught me more than I ever needed to know. But enough. Now we are dealing with a high fever and more pain....Kyle is beyond tired but yet still smiles and tries to be a 5 year old boy. God..you've made every and any point you have needed to make, we get that life is precious and short, that it should be valued and loved. We get that there is nothing we wouldn't do for any of our children, we get that our children love each other more deeply than anything I thought possible. We get that we need to respect and love others.
So I now ask you, pray to you that you give our Kyle a break, so that he can be 5 and go home and play with "his kids". Please.
Posted by Kate StClair at 12:40 PM
Thursday, June 10, 2010
I find myself trying to slow my breathing down...I can hear myself in my head saying in and out, in and out...like if I don't I will hit the floor and not want to get up....things are ok here, nothing major happened today I think because things have been calmer I am starting to look back over the last two weeks and it seems so incredibly sad and hard for me. I try hard not to mince my words on here, it is my outlet the one place that I can be honest and open....but I haven't been able to truly put into the word what our Kyle has been going thru in the last 2 weeks...the words just are not there. There are moments of time that seem lost to me, like I have blocked them out...to painful to remember....I am trying to move past them and take it day by day, hour by hour like his dr's have told us to...but as a Mother that's hard...I think of the tomorrow's, I can't help myself. It's hard to live hour by hour...it's hard to not worry what's around the corner.
We have so far to go, but we are hoping to get home for at least a little bit of time....Mark and I have so much to figure out...choices to make....we will be going back to Columbus we do know that. As for timing that's all up to our Kyle's body...it's all on his schedule.
We as always are so incredibly grateful for being Kyle's parents....we didn't just get blessed with Kyle...we got blessed with Alex and Jack...and our family, and friends....and Kyle's incredible team of Dr's and nurses...who love our Kyle just as much as we do.
Posted by Kate StClair at 8:25 PM
Wednesday, June 9, 2010
~ Kyle is refluxing or vomiting every hour on the hour...sometimes as often as every 20 minutes.
~ His motility is in reverse right now (meaning instead of heading downstream it's heading up)
~We can get nothing into his g tube right now without him vomiting it up
~We are waiting for some direction from Columbus hoping to have that today
~We are beyond sad and have no idea what this means for our sweet boy
~Kyle is super at risk for aspiration into his lungs right now....major concern for us
~He is exhausted and very grumpy, won't acknowledge most people. We are very worried about his mental well being
~ This is all alot for us to handle, he's 5....he knows to much but not enough, that is a very hard combination
~We are all settled into the Children's Hospital and out of ICU! :) His room was completely decorated in Thomas stuff when we got here.....I have to say that the staff here is beyond amazing and take the most incredible care of all of us. If we have to be in the hospital I wouldn't want to be anywhere else.
I go from being incredibly sad to incredibly angry to incredibly grateful. My mind and body are so tired but I swear I'm so damn happy that we have made it thru the last 2 weeks I honestly questioned a few times if we would. But I tell you our Kyle's spirit and will are inspiring. He is beyond tough....
Posted by Kate StClair at 8:00 AM
Sunday, June 6, 2010
...in ICU that is. I don't even know where to start and I do feel bad for saying that I'm to tired, sad and frustrated to get in to the details...but I will soon...I just wanted you to know that we are still in ICU, that Kyle is stable and he is so brave and so strong. Nothing is going the way it was supposed to....it seems like something else goes wrong every day....it's hard to not get sad and discouraged....one of Kyle's nurses said to me today.....it's amazing your not bitter.....My response was one that I truly feel...how can we be bitter, we are still fighting, we are the lucky ones.
Posted by Kate StClair at 7:47 PM
Wednesday, June 2, 2010
I'm sitting next to Kyle who is for the moment sleeping so I'm trying to muster up the energy and the brain power to write an update.
The last few days have been beyond terrible, Kyle has been in horrible pain and his lungs have been really bad. Yesterday he was taken downstairs and they did some testing on his belly and a contrast study to make sure his new anatomy was still all hooked up correctly. The good news is that it is and that they saw no blockages.
The really bad news is that they put contrast into his belly and watched it empty out his belly, go down into his bowels and then go back up the other side all the way up his esophagus. Which was supposed to be impossible. This does explain the vomiting, the lungs and what we knew was reflux. They inserted a tube down into his esophagus that is now light suctioning all the bile out so that he 's not choking on it and aspirating it anymore. Since they did that he has been in alot less pain...which is wonderful but it leaves us with a very big problem. How do you fix that? We don't know....the options are not good and without getting into my heartache to much right now Mark and I are sick over this.
So for now we wait and we try to keep him comfortable and healing....his mental state is still not good but we are seeing little bits of our Kyle coming back to us. He will stay in the ICU until we can figure some more things out.
Please continue to keep Kyle in your thoughts and prayers....he is not out of the woods yet...
Posted by Kate StClair at 12:23 PM
Tuesday, June 1, 2010
I know that I need to update but I can't. I just need to say that Kyle is very stable and has been finally given the right combination of meds so that he can rest. We have been up straight since 11 pm last night and he is in desperate need of sleep. He was put under today for more testing and we don't have the full results. It was a horrible day for him and I just can't wrap my brain around all of this. I will update tomorrow after we fully understand everything.
Thank you...for loving our Kyle.
Posted by Kate StClair at 8:17 PM
Monday, May 31, 2010
I keep saying in my brain day after day, I can't do this....it physically hurts to watch this....my heart is literally aching and my head is pounding....he looks at us with pain and such sadness and we can do nothing. I realize before anyone jumps that we will continue to do this, to fight for him but there are those brief moments where my breathe is gone and I question if I'm strong enough to keep watching this.
Kyle is pretty much the same as yesterday, pain and lungs are still a large issue...still in the ICU....he will have a contrast study done tomorrow to make sure his new anatomy all looks good still. There is a concern that when Kyle is complaining this much there is always a reason. We are becoming very worried about his mental health, he is very sad...no strength....we got him into a wheel chair and went up to the Children's floor to try to get some happiness into him, it didn't work but I'm hoping it was just enough to keep his spirit going. He is missing "his kids" and wants to see them so badly. I know once we get upstairs and they can come in that will help him so much.
I need to keep saying that our Kyle is strongly then any adult I have ever encountered...he continues to amaze us with his bravery and kindness....
Posted by Kate StClair at 11:33 AM
Sunday, May 30, 2010
I don't have any other title at this point, it seems like each day we think , so yesterday was bad but we got thru it and today will be better....we thought after Friday's emergency surgery that things would improve...we were very wrong. Saturday morning brought lots of pain and discomfort, after another trip from our good friends the anesthesiologist Kyle was able to rest for about 2 hours....and then it went very down hill. He started to gag and then started to vomit large amounts of bile, (Kyle has never vomited in his life he has always had a Nissen wrap to help prevent reflux) his sats dropped to the 40s and he was blue...it took over 15 minutes for us to get him back under control and by that point he had aspirated the bile and was really struggling to breathe...it took hours of back to back neb treatments and lots of extra o2 to see some improvements, it was one of the worst incidents with Kyle that I have ever seen. I had this horrible feeling that we were going to lose him.
We are still having lung issues today but I am so hoping we are over the worst of it, the hard part is we don't know if it's going to happen again. So clearly we won't be leaving the ICU today...We will see the surgeons and GI again this morning to try to figure out why this happened.
Hoping for calm and peace for Kyle today, he's gotten more pain meds and they put some additional pain control in his epidural. Will update tonight.
Posted by Kate StClair at 7:14 AM
Friday, May 28, 2010
There is a long standing joke between us and some of Kyle's medical team that he is "feisty"....he is very strong willed and has been since birth, we say all the time that this quality in him has carried him thru some of his toughest challenges...today I was once again thankful for Kyle being feisty. Since he came out of surgery on Wednesday night he has been in almost constant pain. He has been telling us for 2 days that the pain was horrible and that he was "sick"....
This afternoon during a bed change I looked down and saw stool coming out of his G tube..the tube connected to his remaining stomach. Major scary red flag, his temp was way up and his pain was unmanageable. The surgeons were by his bed quickly and we were told that he may have a leak somewhere and his stool was leaking from the colon....this is very dangerous and life threatening. He was brought into surgery and it was discovered that the section of bowel where they placed the J tube had collapsed and was obstructed. They had to remove the j tube which is a concern but this was a much better problem then what we thought.
He is now back in ICU and is comfortably sleeping.
My head is so foggy and my heart still hurts....but I am so incredibly grateful that our Kyle is feisty and we still are fighting this fight.
Posted by Kate StClair at 8:38 PM
Thursday, May 27, 2010
The last few days have been a total fog, we went into surgery hoping for one outcome and we got a call from the OR 2 hours into Kyle's surgery with a different plan. The pledgett/mass of surgical material that was in Kyle's esophagus had attached itself to his liver, stomach and the lower half of his esophagus it was completely embedded and had destroyed the top half of Kyle's stomach. There was no chance to save the tissue and so they had to detach Kyle's esophagus from his stomach and attach the esophagus straight to Kyle's intestines. His stomach is now completely bypassed. This was bad news to us, clearly. The news was shocking at first and then we had a chance to process the news and we are trying very hard to see the positive side of this...he will have NO reflux at all which is really good news for his lungs. We are hoping that this may cut down on his stomach pains (his stomach is still there and does still empty into his intestines) They did put in the J tube so he now has a G tube and a J tube...2 tubes on his tiny belly. His body is very swollen still and we are still struggling with pain issues. He went thru so much, so while we are prepared logically for the pain the reality of the pain is so hard to watch.
We feel overwhelmed and heartbroken that Kyle is in so much pain. We keep hoping that every surgery, every test, every new medication will give our sweet boy some relief....We are keeping that hope and faith alive that this will all be worth it for him....that this is a new beginning for him. The next few days will be rough but Kyle as always continues to amaze us.
Posted by Kate StClair at 7:52 PM
Wednesday, May 26, 2010
It's been a long day...I wanted to jump on and thank you all for the prayers, and love and continued support that you show our family. I will be updating in the am with a more detailed post, surgery did not go the way we had hoped but I do want to get more details and understand some things before I post them. Kyle is in the ICU and is in and out of sleep, he has some pain and is extremely swollen but he is doing as well as can be expected. His temp is up so we are watching that closely....
Again..thank you...our sweet boy is beyond brave. His spirit and love continues to amaze us every day.
Posted by Kate StClair at 10:18 PM
This is Carissa updating for Kate -
"He's out and stable. We haven't seen him yet but he's in the ICU and doing well."
It has been a very LONG surgery and day for all of them. Please keep them in your prayers. Kate will update more when she has time!
Posted by Kate StClair at 8:11 PM
Monday, May 24, 2010
Just a quick update, due to an emergency with another patient Kyle's surgery was moved to Wed. The big bummer for Kyle was we didn't find out until after we were at the hospital and ready to go...We have lots of mixed emotions but we are going to take advantage of the next 2 days and enjoy them.
Posted by Kate StClair at 5:20 PM
Sunday, May 23, 2010
Posted by Kate StClair at 9:33 AM
Wednesday, May 19, 2010
Monday, May 17, 2010
Posted by Kate StClair at 9:03 PM
Wednesday, May 12, 2010
Tuesday, May 11, 2010
Ok...well not literally....but check it out! http://twinbittersweetmemories.blogspot.com/
Posted by Kate StClair at 7:21 AM
Monday, May 10, 2010
8 years ago when I became a Mom I read all the books...searched the Internet....asked tons of questions. I was so ready for a baby. The first year had it's ups and downs but Alex was a perfect baby. (she was and I'm not just saying this because she is mine a text book perfect baby! Although trust me, she's making up for lost time now) After all the reading and the questions and the Internet search I was not prepared for how the kids would make me feel. I don't think anything, anyone can prepare you for what happens when you become a Mom. I love Mother's Day...really I probably drive my family nuts in anticipation of it.....but it's not because I want a day all about me (;) although come on it rocks!)....Mother's Day makes me slow down, the normal day stops and I have time to really look at my kids, listen to them a little more, snuggle them more, love them even more. It's a day where I let everything else go and take the time to realize how incredible life is, how incredible it is to be their Mommy. What an honor.
Our life isn't easy, it seems to get harder and more crazy every week.....but I can't imagine life without these 3 beautiful babies. My heart aches when I think about what each one of them has been through, but they are strong, and loving, and kind. Amazing.
Posted by Kate StClair at 7:08 AM
Thursday, May 6, 2010
Posted by Kate StClair at 6:38 PM
Wednesday, May 5, 2010
Posted by Kate StClair at 7:12 AM
Wednesday, April 28, 2010
Posted by Kate StClair at 10:10 AM
Thursday, April 22, 2010
Kyle's test went smoothly with no big surprises. Things pretty much looked the same way they looked when we took a look in Columbus....which is good. Moves us one step closer to surgery. At this point we are in the one month countdown. As well as things went yesterday, we are paying for that today, last night and today have been rough on our little guy....you just can't put that much liquid into a stomach that doesn't work...it increases his pain level to an all time high.
Today we are off to Mimi and Papa's house to visit with my sister and her little ones, the boys are over the moon about it! Should be a great day!
I'm hoping to take lots of pictures!!
Posted by Kate StClair at 7:31 AM
Tuesday, April 20, 2010
Posted by Kate StClair at 7:55 PM
Wednesday, April 14, 2010
~When you come to the edge of all the light you know, and are about to drop off into darkness of the unknown, Faith is knowing one of two things will happen : there will be something solid to stand on or you will be taught how to fly~
I stole this quote from one of my favorite blogs...it's an amazing blog full of hope and love and the most adorable sweet little girl named Zoey, her Mom...well her Mom is something else. Strong, beautiful, inspires me to keep going.... you can check out Zoey and her Momma here.... http://littlewonders-heather.blogspot.com/
We've had another tough day...Kyle's TPN is now at 20 hours a day plus all the other meds, he was off of his IV for a little over an hour today, pretty tough on a 5 year old. Our GI dr called and we had a long conversation, none of it good.... it left me feeling horribly sad. M is still out of town so I havn't been able to fully fill him in but when I do I will update more on here.
After a long day I was putting Kyle to bed and he says Momma...your the best Mommy ever...ahhh...this is after blood sticks, and TPN and meds that make his belly hurt....this sweet boy has so much love in him, I know that he couldn't possibly understand the timing of telling me that but I will never forget how it made my heart feel to hear it....because I do try to be the best Mommy to him, I'm not always...I get tired, I lose patience....I mess up....but he loves me. Makes the bad day all worth it.
Posted by Kate StClair at 7:44 PM
Tuesday, April 13, 2010
This will be quick...I think ;) It's been a rough night, not any major changes or shifts...just the small things that seem to be adding up. Because Kyle is sick so much he hardly ever complains...if Kyle is complaining of pain or not feeling well, it's concerning. Tonight he was doing both, chest pains again, belly pains again and as I tucked him into bed he looked at me and said...Momma...I'm still sick. His sweet strong face crumpled and it hurt me to my core. Ahhh, breaks me in two. Just came back from his room to check his blood sugars and they are way to high again...something is going on... we just don't know what yet. I'm feeling very concerned. Very worried...I know him so well...something is not right.
Hoping for a restful night and some answers tomorrow.
Posted by Kate StClair at 9:04 PM
Monday, April 12, 2010
That's how I feel today, I'm feeling the increasing pressure of Kyle's surgery looming and he's still really sick. Back to the Dr today and it's another week of IV steroids and IV antibiotics...back we go to being attached not only 18 hours a day to an IV but 20 plus...so hard on him. Yet I have to keep remembering how grateful I am we are at home doing this...still going strong. Still concerned about his blood, waiting on his labs from today..he's now putting blood out his bile bag at night which is not the best sign...
That's my short update for tonight...I'm off to snuggle with Alex for a bit...
Posted by Kate StClair at 8:00 PM
Saturday, April 10, 2010
Posted by Kate StClair at 8:50 AM
Thursday, April 8, 2010
It seems and feels like the last few weeks have all run into each other, we are still struggling with this nasty respiratory infection (both Kyle and I have it) Alex had a fever on Tuesday....strange...came on all of sudden and then was gone by the am....crazy, I'd say we've been more sick this last month then all winter. I think the steroids that Kyle and I are on are getting us both down and it's been a frustrating process.
We got to meet with Kyle's entire team on Tuesday, pretty much spent the day at the dr's office. But it was good, we got more info from Columbus and got the opinions from the team that knows Kyle best. Have I mentioned my love for Kyle's GI dr lately... Amazing person, amazing doctor. Anyway, we are keeping a very close eye on some of his labs, little concerning this week but we will know more on Monday. As for our meeting with the surgical team, I think that went pretty well, we were surprised by some of the recommendations and not prepared for them but in the end I think it will be the best for Kyle. We are looking at doing both his surgeries in the next month at the same time. It's a good move for Kyle but will make the surgery and recovery much harder. But it can be done all at the same time, so while it will be a hard and difficult surgery our sweet boy will only have to go thru it once.
Both Mark and I have that sense of dread right now, while we know we it has to be done it's still so heartbreaking so think about. I feel like we just went thru this in November and yet this surgery will be more than that one...I'm petrified. I look at his sweet face and it kills me to think of him going thru more....Our baby who has endured more than I will in a lifetime will have to be once again put thru so much. It's hard to wrap our brains around it. None of it makes sense to me, yet in the same moment I'm so thankful, grateful, overwhelmed that we are still fighting this battle....
Posted by Kate StClair at 1:18 PM
Monday, April 5, 2010
The last few weeks have been trying, I found myself sick with sick kids and alot of time laying around and do lots of thinking. After a long day today I feel overwhelmed and sad.
I have the most amazing group of friends, god love them. It's not always easy to be my friend...I don't always return emails, or phone calls or text messages. I forget birthdays and anniversaries, I miss engagements and births and sadly deaths.
Yet, they keep coming back...they continue to love me and support me and hold nothing against me.
It wasn't always like this, there used to be so much more time....yet the last few years that time seems to go by so much faster.
So for those of you still hanging in there...thank you...thank you....thank you....this would all be impossible without you.
Posted by Kate StClair at 7:32 PM
Kyle is still sick...yah 3 weeks. I say sick...actively sick I'm not sure about. But coughing and retching are still really active and I'm starting to get more nervous. Still on steroids and I see no real big improvements. We have dr's appts all week so I'm hoping they can help. We meet with surgery and GI tomorrow, both appts have me nervous and keyed up. I'll update after those appts.
Easter.....I have to say I was nervous about Easter, both Kyle and I have been sick and neither one of us were up to much. Mark's sister was hosting Easter which was a huge relief and took alot of stress off of us. We went, and I'm so grateful we did. The kids had an amazing time playing with their cousin Ethan and Mark's family is amazing to them. The day was wonderful, beautiful weather and great company...it was exactly what we needed after the last few weeks. Kyle is really beat today but that's ok, it's a down day for us...the giggles that came out of that kid yesterday was plenty worth all of it. Watching him play....watching his face....he truly is a kid at the age of 5 that has learned how to appreciate life and all the small little good things it has to offer.
Alex....oh my girl. My sensitive kid, who clearly had a lot on her mind last night. Lots of questions at bedtime about heaven and death and what happens. It was hard to admit to her that I have alot of the same questions. But I promised her I would think alot about it and her and I would talk soon...so much on her little mind...again a child who is wise beyond her years.
I hope you all had a magical Easter, we did.
Posted by Kate StClair at 8:32 AM
Sunday, March 28, 2010
Kyle is still sick, in fact we've all been sick for the last few days. Jack and Alex seem to be getting past it ok while Big is still struggling. I got hit with it in the middle of the night Thursday night..pretty sure when I realized I was sick (while sitting in Big's room giving him one of his every 2 hour nebs) I thought there was a good chance I was going to have a nervous breakdown. I did have a good laugh on Wednesday afternoon, Kyles pulmonary NP called to let me know that all the meds would be delivered to us that afternoon (all his IV meds) and she mentioned that she had talked to the on call GI dr who asked her if Kyle was being admitted....she thank god had my back and explained to her that Kyle only gets admitted if we are going to PICU and that we don't hit PICU unless we are at every hour nebs...it's been our agreement since Kyle came home from the NICU. It's at these times I am so grateful for our dr's...who know and trust us! Because Kyle has been so sick for so long, we know when he needs to go in. I can say while it's hard to make the move to the hospital we always know when it's time to go...luckily we haven't been there this time.
I have to say, and I know I say this alot....this kid continues to amaze me...he's getting so big....he knows when he needs nebs, more oxygen, more meds...almost before I know he needs them. While it's good that he can voice what he needs it's also tough sometimes...he's voicing more about his belly and his lungs. You can see and feel his frustrations.
We should have some more info about his surgery this week...we have a long way to go before he's safe to go under for this, I hate how much this sickness has set us back.
Posted by Kate StClair at 12:10 PM
Thursday, March 25, 2010
Kyle has been horribly sick but yesterday's dr's appt went well, we were able to get IV antibiotics and IV steroids, it's been a little confusing trying to get everything run into his line in the right order at the right time, but again I'm so incredibly grateful that Kyle's dr's have so much faith in us and allowed us to do all this at home....it's an overwhelming responsibility at times but again....we are at home. That's huge to us.
I haven't had time to blog the way I like to, and I'm noticing that it's bothering me....but every time I sit down to write I feel overwhelmed and exhausted.
So for now just know that Kyle is amazing, and strong and brave. As for us...we are still living life for today.
Posted by Kate StClair at 1:14 PM
Tuesday, March 23, 2010
Kyle is sick. A slight cold that has turned nasty and literally thrown his entire system into a tailspin. I'm on the pity train today....not so much for me, I can survive on zero sleep, been doing it for years, but enough is enough for him. Like everyday life isn't hard enough. It's in his lungs, it's shut down his entire gi tract...both his pulmonary dr and GI dr are on vacation. (how dare they go at the same time ;) ) We have started IV fluids in hopes of holding off any dehydration, his output is huge right now...which in a kid like Kyle is normal. His lungs are miserable and we are at every 2 hour treatments...his pulmo and I have an agreement that when we get to every hour it's off to the PICU...until then I can treat this at home. Of course with that comes all my worries of doing something wrong, missing something...harming him in some way. His labs are being drawn today so that will give us a little insight. Until then we keep plugging along and hoping and praying we can stay home!
Posted by Kate StClair at 12:22 PM
Monday, March 22, 2010
Posted by Kate StClair at 4:48 PM
Thursday, March 18, 2010
Posted by Kate StClair at 7:49 AM
Wednesday, March 17, 2010
Posted by Kate StClair at 4:51 PM
Monday, March 15, 2010
Ok, I never ever pretend to have it all together..in fact if you know me in real life the words..Kate and having it all together do not go in the same sentence. Three kids, a husband, a dog, a house....it at times gets all jumbled together. Alex has had a killer canker in her mouth since last week..poor sweet girl is having a hard time eating. My parents (god love them) picked the kids up on Friday and quickly stopped to get some anbesol jr for her mouth. This morning when she asked me if she could take it to school with her so she could put it on before snack and lunch I immediately said yes...I mean it's anbesol...JUNIOR...sold over the counter (are you feeling where this is going?!) Fast forward to about 11 o'clock today, I'm unhooking Kyle from his TPN...phone rings and it's Alex's school...I go into panic mode thinking crap..she's sick. But no..it's just the school nurse informing me that I broke a BIG time rule at school by letting Alex bring that to school...if I want to do that then I need a note from her pediatrician. She then goes on to tell me in a very stern voice that I would need to come pick up the anbesol and never let it come to school with Alex again. Ok...so here is where I know I was wrong...but I laughed...seriously I couldn't help it. She wanted me to load the boys in the pouring rain to come to school to pick up anbesol...freaking anbesol. Um..no...it's not going to happen. Listen I get rules, I do...I want my kids to understand rules...we all have to live by rules. But this one had me at first ticked and then laughing. Again, I'm probably wrong here but the school nurse was clearly ticked off at me for sending it in the first place...and if you could have seen me..I have on gloves and a saline flush in my hand...trying to not touch anything so that I don't contaminate Kyle's TPN line and she's calling me because I let Alex take ANBESOL to school...
Speaking of Kyle, poor kid had some belly issues this afternoon, not totally sure on why...he was leaking around his tube alot...his lungs haven't been so hot lately, we are guessing it's from the reflux but we'll see the pulmonary dr on Thursday just for a check in. Still waiting to hear from surgery here about the j tube. They were waiting for the reports from Columbus. Hoping we can get this scheduled soon...
We are still way over the moon at being home, trying to get settled and also get ready for Jack's birthday...my baby turns 4 in a week. Seems totally unreal!
Posted by Kate StClair at 8:24 PM
Saturday, March 13, 2010
We are home and loving it, the boys are right back to where they left off....inseparable and playing up a storm. Alex is back to quietly overseeing them and loving on us.
It feels safe and comforting to be home, I have realized as Kyle has gotten sicker over the last year that my safe zone seems to be home, I find when I'm away I crave it. Everything I could ever need for him in an emergency is here....his little body can revolt on us at any given time and it can be nerve racking to be away from that, even when we were in patient in a hospital I was nervous. Kyle's team at MMC from his dr's to his nurses know him...they know us. I found myself missing that so much this week. You form a trust, a bond with people when you work this closely with them...its hard to re create that.
I've wanted to blog for over a week about the loads of thanks I need to give....that blog is still rattling around in my head so forgive me I know I still owe some pretty serious thank you's...I promise they are coming.
A few of you have asked if we got a "diagnosis" for Kyle while we were in Columbus. We did not....what we got was proof of what we have been seeing for a long time, Kyle's motility, while still slightly there is bad. Do we want a diagnosis....sure we do....but it won't change the way we treat him right now, we are still in crisis mode....he is still TPN dependant and will be for a while. We won't know if he can get off of TPN until we do the j tube surgery. At this point we have no reason to believe it won't work. Until a dr says it's not working anymore (his motility) we will keep thinking positive and moving ahead.
People have been incredibly kind with their words of support to both Mark and I...I thank you for that. I won't speak for Mark....I only speak for myself when I say this... having a chronically ill child for over 5 years does take a toll on you...I wish I could say that for the last 5 years I've been proud of how I've handled every situation that has been thrown at us. If you had told me that at the age of 27 I would have a preemie, watch him almost be taken from me numerous times, live my life in a hospital, watch my sweet baby have over 13 serious surgeries and come out unscathed I would have laughed at you. Again I'm not perfect...there are many things I wish I could change, take back, do over....I can't do that. What I am trying to do is be the best person I can be...which in turn I think helps me be a better Mom, wife, friend and daughter. Where is this coming from your probably asking.....the last few weeks have been tough, I have questioned alot, worried a ton, and felt like life was spinning out of control.
I have looked back on things and realized one thing...I'm not perfect, I make mistakes, but I love my kids more than anything.....whatever happens with Kyle he will always know that we love him and are proud of him. He doesn't care that I'm not perfect, he loves me because I'm his Mom and he knows I will move mountains to get him anything he needs. He will never be alone in any of this.
Posted by Kate StClair at 2:42 PM
Friday, March 12, 2010
Posted by Kate StClair at 9:03 AM
Wednesday, March 10, 2010
I have to start this by saying something I said earlier while Mark and I were not overly surprised by the test results it was still very difficult to process the information and to also accept the information. It is very easy to play mind games with yoursef while you wait for test results...in your mind you play out how certain scenerios are going to go....sadly they never really work out that way. I played that game all night...
My body literally aches for him...everything hurts. He's been in pain most of the day today just from the small amount of food they tried to put thru. When they took him to the OR today we had to leave him at the doors...something we have never done...in probably close to 100 sedations/surgeries I have never ever not held him as he was put under....they wheeled him away from me and he was shaking and calling my name....thank god Mark was there...I could not even move from the spot, it broke me. He came back to us and said...Mommy, I was so sad...when I asked him why he said you left me when I had to take my nap....
The day has been brutal and exhausting...and tomorrow we have more testing in the am, this is a big one and we are hoping for some good news. We need it. We are scheduled to fly home Saturday. As of tomorrow we should have a full game plan on how we are moving forward.
We have no idea where surgery will be or how we continue on this road...my guess is we will be back to Columbus sooner rather than later...I am very impressed with the team here and feel comfortable with them helping us make some very serious choices for our sweet boy.
Posted by Kate StClair at 8:42 PM
We have met with Kyle's Dr.'s and while the results were not a surprise, we are struggling to understand them.
The motility shows only small amounts of motility in his bowels and colon, while his colon is not as bad as his intestines, it is still troubling.
Chances are he will not regain the motility in his bowels and stomach (we already knew his stomach was not working well)at this point it is their recommendation that we place another separate J tube lower into his intestines to try to push tube feeds through. This with a combination of meds will hopefully help him get off TPN, although there is no guarantee. The fact that his bile output is so bad and with the colon results makes his doctor feel as though in the future he may need an ileostomy procedure...this is not something we want at all so we are hoping and praying we can get food into him. Worst resort is if none of this works, he would need a transplant.
We are still absorbing...he is scheduled for an upper GI tomorrow to check his esophagus and the fistula, there is a concern that he is refluxing past the fistula and the Nissen wrap which will be a very major problem if he is.
Not sure what else to say...except...thank you for sticking with us - we have a long way to go.
Kate and Mark
Posted by Kate StClair at 5:32 PM