Posted By The Ginger Twins

What a year!  I am looking forward to 2013 for a healthier year for all 6 of us.  I am extreamly thankful to have Bryce and Baen with us and that they have battle a tough battle so far. 

I am writing this blog as I sit on a window sill makeshift couch in the PICU at CCF.  I never thought at day +205 for Bryce that we would still be so heavily involved with BMT complications.  We were very spolied when it came to Baen as far as his BMT goes.  TO do a short recap in case this has been hard to follow......Sept 18 the paracardial effusion was discovered.  He was admitted and tapped that week and started on steriods.  He was on full strength steriods for 4 weeks and then began to taper.  Cardiology and HEMOC were trying to make the right decisions with his care, cardiology focused on the heart only-HEMOC focused on the whole body and the BMT itself.  After 4 weeks they decided to start tapering.  This lasted for 3 weeks until all the fluid was back to where we had started at.  Cardiology went back up on the steriods and we were at full strength about a week before going to MN.  We left for MN on the 10th of November and Bryce was admitted on the 14th with a paracardial effusion and cardiac tamponade.  The next day he had his effusion tapped fully (80 mls and the 50 mls drained later).  Twelve hours later he went back to the OR for Gtube removal and fistula closure, hernia repair, byopsy of the colon, and his last intrathecal.  Monday he was discharged and Tuesday we left to come home.  Thanksgiving was THursday where he was miserable all day.  We figured that it was due to the long ride and the crowds of people (which was a nice changed really).  Friday we went back in to HEMOC because he seemd to be in an awful lot of pain in his abdomen.  His xray showed pneumatosis ad he was inpatient from friday the 23rd to Friday the 30th.  We made it home Friday the 30th at 3pm.  He was throwing up Saturday night and Sunday morning so we came back in and got admitted again.  He was severely dehydrated but was still unhappy.  The next day his heart showed a large amount of fluid around the heart which brings us to yesterday.  He was tapped at 4pm and back in the PICU at 6-6:30 PM.  He was doing pretty well at first, took time to figured out the right dose of pain meds and he eventualy went on a fentanyl drip because his chest tube is still inserted.  As the night went on his breathing got much worse and his vitals were not good.  Each hour he heart rate was going up and his pressures were going down.  The 11 o'clock hour his resting heart rate was in the 180's and pressures were low.  Respiratory rate was in the 50's and he was asleep at the time.  He was working very very hard to breath.  I believe he was having a reaction the the breathing tube, but no one else was thinking the same thing.  Our Cardiologist was on call last night and I felt much better after seeing her.  She did and echo and read it on the spot. There was no effusion and she said the heart looked great.  Good news, but still didnt explain the vitals.  By 1:40am (we are now at today wednesday the 5th) he was stable enough to where I was comfortable sleeping.  I didnt sleep much, but neither did Bryce.  By morning rounds his heart rate was in the 150's which was better but now his pressures were 76/49 (I dont think I have ever seen him this low). 

 
Posted By The Ginger Twins

After getting through a horrible presentation by the resident in the PICU, we talked about what really happened overnight and came up with a plan....thanks to my awesome BMT Doctor. We seriously would not be here at CCF if it werent for him. As of right now (wednesday night) his vitals are much better, he is keeping down some pedialyte butnot really moving a whole lot yet.....he will soon. We are hoping the chest tube comes out tomorrow and the drip stops and either tomorrow or friday we go to HEMOC. We were hoping for a friday discharge but that isnt looking very realistic anymore.

Ahhh.....that is alot to type. That is the best I can do with the chain of events. This has been tough for Brian and I, we are taking 2day shifts at the hospital. Mom is taking care of Baen for her shift of 4 hours a day, which gives Brian and I enough time to switch spots up here at CCF. I feel like I am in such a medical bubble while I am inpatient with him that it is easy to forget about the responsibilities at home. I will be happy when all six of us can be home together for more than 2 days and try to get back to some sort of schedule. It has been hard to get into the Christmas spirit when you cant stop thinking about the decisions that need to bemade on your sick toddler to make sure he can pull through this time.

 
Posted By The Ginger Twins

This was not the week that we were planning to have.  Originally we were supposed to leave yesterday but Bryce had other plans.  Brian and I knew that something was going on in the car on the way out.  He was so unhappy.  We stopped 4 different times and I would say he barely made the ride.  We rented a little house that was perfect for us.  It was by no means baby proof but we made a few changes and bought a gate and it was home away from home.  Bryce and Baen both had all their check ups Monday, Tuesday, and Wednesday that were on the schedule.  We were squeezed in for GI, BMT was concerned Bryce had GVHD of the GI track which would have been a big blow to his progress.  Cardiology was where the rollercoaster started.  Bryce has been seeing cardiology since the middle of September for a paracardial effusion (fluid around the heart).  His heart was tapped at CCF and he was then put on steriods and Nsaids.  We were monitored every week and he was slowly getting better but than 3 weeks ago the fluid was all back again.  We had the echo out here which I had asked to be scheduled in since he has been having weekly echos at home.  The cadiologist said that he was starting what is called cardiac tamponade.  The fluid needed to come out and rather fast.  Well, although we are used to this kind of news because of our history, we just werent expecting it for the 6 month check up.  

I cant tell you how many plan changes we made in the next 2 hours.  I still have many many more tomorrow when everything opens at home.  Bryce went inpatient from there on a 24 hour heart monitor.  the cardiologist said the signs of tamponade is high heart rate and low pressures which he was starting.  All I said to Brian was, we are in the right place at the right time.  Bryce was tapped again on Thursday after Baen had gone into surgery at 1pm.  Let me tell you we were the talk of the OR as we are most times.  There was some confusion but thank god I was paying attention.  We had one in post-op and one in pre-op at the same time.  Then they were both in post-op at the same time.  Back in September 40 mls was drained from his heart, which is 2 oz.  This time he had 80 mls, 4 oz drained and they kept the drain in which accumulated another 50 mls after that.  The cardiologist cleared Bryce for surgery again on Friday.  This was to fix his hernia, g-tube, his last intrathecal, and a biopsy of his colon.  He was in the OR for almost 3 hours but did well.  He was in a large amount of pain Friday, was having troubles with his blood pressure and heart rate and needed a good amount of pain meds.  We have finally as of tonight seemed to manage to find all the right mix of medicine and time to where he is now bouncing in his bouncer.  His pressures are still a little high but, they were like that back home too.  He has finally pooped which was really a big thing.  This week was another moment that we will not forget.  There have been certain times in their lives so far that have really made us nervous.  This was one of them.  He is not free and clear of the whole situation, but he is going in the right direction.  Dr Tolar is trying to still get us home by Thanksgiving which would be wonderful!  Beau and Brady we expecting us back by now and Brady the other day said he missed me 1000%, it broke my heart. 

 
Posted By The Ginger Twins

I suppose its a good thing that I have lost count on days.  I sm not worrying as much about being less than +100 and getting as sick as quick.  This might end up ebing more of a reality blog more than and inspiring blog...just wanted to fore-warn anyone that is not in the mood for this kind of talk.

It has honestly been a lot of reality checks for us lately.  It was asked of us last week by a family member to pay attention to myself eating and how much I use my tongue to mush up the food before I eat.  You havent paid attention to that before have you?  Well I then ate my cereal paying attention and I used the roof of my mouth the whole time to mush my food up.  So the point of the story was, how are Bryce and Baen going to be able to learn to eat normal foods when the roof of their mouth goes straight up and straight back down.  It doesnt have just that slight curve like normal mouths do.  So of corse this made me think more of the future of what we are really up against.  I am rteally not looking for a pity party, believe me I know it can be worse.  But its is these type of conversation that bring us back to the reality of the situation.  The transplants are successful so far and we are SO GRATEFUL of that, but we still have to try and think about what we are really up against.  Some of this stuff seems so "normal" to us until we talk to a county rep or a doctor about a new problem that they will face for a very long time.  But, with all that said we are so happy to have the happiest twins ever!

Heres another thing that has been hanging out in my mind.  What is going through Beau and Brady'd head.  I am kind of surprised but it is actually Beau that isnt really talking about what is bothering him with all of this going on, its Brady.  Brady just asked me tonight while we were feeding the cat, "Mom, why did God give the twins Hurlers?,"  How do you word that where he understands that we can handle what ever God challenges us with, and not show that you are very frustrated at the same time.  Then he tells me....."God is kind of stinky for giving the twins Hurlers."  So I told him, no he isnt......we can handle it Brady!  I think a little resentment might have come out tonight too.  He wanted to know why Amos doesnt want to be with us anymore.  So I told him that when we went to MN he thought we left him and now that we are back we kind of  have to make him realize that we are staying now and he can trust us.  Brady than said, yeah we went because of the twins, which is obviously true but it was the way he said it.  He wasnt mean.....but you could tell that his wheels were turning.  He loves his brothers dont get me wrong, I dont think they would have ever been this close without the trip to MN.  I just wish it were easier to understand what goes on in their minds.

If I dont stop typing now it may becoming a little depressing tonight.  We have Cardiology tomorrow to hopefully see the fluid around Bryce's Heart decrease and start tapering off the pred.  The poor kid is so big he doesnt fit in his highchair!

Till next time.....

 
Posted By The Ginger Twins
Beau and Brady have started school and doing ok. Beau has really adapted to the new type of life we have now, Brady is having more issues adjusting. I had a meeting with the school last week and keep them updated on big things that happen around here. Its nice to have that sort of relationship with the school, I was always nervous about not having it where it would make it more stressful. We really did pick the right place to live. Bradys birthday is tomorrow and we are hoping we can make it as special as we can so he doesnt have any ill feelings towards the twins for taking up our time on his special day. He hasnt had these feelings so far so we hope we can keep it that way.
I would love to keep writing but I am pushing my free time with Baen sleeping. I have a few things that are easier to do without a toddler tearing it all apart again. They might have alot of medical issues but by no means are they quiet. They are typical crazy little toddlers! It is so nice to see! I am just hoping they stay this happy and progressing as much as they have been for a very long time.
Thank you all for being so caring and patient with my horrible updating. All the support that we receive doesnt go un-noticed and is very much appreciated.
 
 

 

 
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