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Our Miracle - Ryker's Journey with Heterotaxy
Monday, January 28, 2013
Rachel the UNSTOPPABLE MOM
Tuesday, January 22, 2013
Update on our miracle!
Post from Rachel 1/20/13....We have had an awesome day together today!! Ryker has LOVED every second of having both his Sisters, Mom & Dad all in the same room!! He has been so smiley & alert all day! His milrinone is down to .2 (Yahoooo!!!) & he is still tolerating his captopril perfectly! He also was finally able to get a Mickey button on his Gtube! :) Our sweet Braylee held Ryker for the longest time today & was singing him lullabys, it was the sweetest thing. She also asked if she could have alone time with Ryker so she could talk to him :) My girls make my heart melt! I am so blessed!! ♥
Tuesday, January 15, 2013
A Long Debated Update...
For over a month now I have put off this update....I have debated whether or not I would even do it & wondered, if I did decide to do it, would I be able to express myself properly without completely falling apart. After a month of crying more than I ever would like to admit & processing things I never thought my mind was capable of processing, let alone coming to the reality that I have no choice but to face these things. About a week ago I finally came to a good place that I felt I could talk briefly about it without completely losing all control, but even from there I debated if I was willing to share such deep & personal trials of my baby's journey with the public. I know that Ryker has many followers that care about him SO MUCH & many are Family/Friends that I care so much about, that I honestly have been avoiding because I really have not been able to talk about any of it. So as of now very few people know what has been going on. I guess I haven't wanted to face the reality of it all & figured, if I didn't talk too much about it, it may work itself out & go away....But I know it's not going to, not anytime soon anyways. Then while talking with Ryker's nurse Mags, I was finally able to come to a good place & truly be reminded that Miracles DO HAPPEN!!! I just have to believe it WILL for my sweet baby boy, with all my heart!! With this came the moment that I felt I could finally talk about this subject, still with many details kept between Jason & Myself, but, be able to finally let everyone know what really has been going on.
To start I will give a little back round- At Ryker's Cath in September, when we found out that his PVS had moved to his right Pulmonary Veins. If it hadn't been for his PVS he would have been a perfect Glenn Procedure candidate, but because of his PVS it was too risky to proceed with the Glenn. That Cath was a hard one to swallow, but everything was still so up in the air & the plan from there was to wait & see how it all was going to play out as Ryker continued to grow & progress, along with preparing him for another Cath in a few months with tons of HOPE & PRAYERS that his PVS would subside & he would be a Glenn candidate! During this waiting period for his next Cath, Ryker THRIVED!!! Everyone was SO impressed with how well he was doing! He got off the ventilator very quickly, his O2 sats were great on very little oxygen & regular nasal cannula, he was tolerating feeds higher than he ever had before, he even aced a lung scan & an echo with no problems at all. Everyone felt like it was near impossible for Ryker's PVS to be getting in the way at all & Jason & I were so excited for the Cath, really feeling like the results were finally going to come back amazing & Ryker would get his Glenn Procedure done & FINALLY GET TO COME HOME WITH US!!!
Then on December 4th Ryker went to the Cath Lab for this long anticipated procedure, his 6th Cardiac Catheterization. It was a horribly long Cath, 6 hours to be exact, but most of that time had been spend trying to get a new Broviac Line for him, so Jason & I were trying our hardest not to worry too much about the prolonged time period. After the Cath, sadly, we received the exact news that we had feared the very most...Ryker's PVS hadn't gotten any better, it got worse (thankfully not a lot worse, but still not good) They had to balloon his two lower veins, the lower left we knew would need some ballooning (it currently has a stent in it), but finding out that the lower right was ballooned as well was like a kick in the stomach! :( We faced the info we recieved the best we could until we were able to pull together a meeting with Ryker's team.
On Monday December 10th, after all data & info were gathered by many, we were finally able to have our meeting. In the Meeting we received much more devastating news....Ryker's heart function had become "moderate-severely depressed" A term that, being his Mother, I cannot even begin to describe the pain & horror that came along with this fact. Ryker's only real chance of survival was to have a heart transplant. The news of my baby desperately needing a heart transplant, in itself, is an extremely hard thing to stomach, but then on top of that, knowing full well that because of Ryker's PVS he may not even be a transplant candidate, was gut wrenching & unexplainable!! The whole rest of the meeting I tried my hardest to fight back the tears & not lose all control while we were still talking with all the Doctors. One huge thing that stood out was the fact that everyone mutually felt, loud & clear, that Ryker is NOT done fighting!! He has shown no signs whatsoever of being tired or done with it all. He has fought through it all so hard that he has literally baffled an entire team of Doctors! Dr. Marx said that given Ryker's current state, as well as looking & acting SO GOOD, he just did not see how it was possible for his heart to be struggling the way it is. That if he were to not know Ryker personally & just look at Ryker's Cath report & pictures he would expect to walk into Ryker's room to a non-responsive, intubated baby. But the FACT is that he's NOT any of that! He is Happy, Smiling, moving around & full of life, regardless of how poorly his heart is currently functioning! He is a Medical statistic impossibility & my ABSOLUTE MIRACLE BABY!!! I cannot get over how tough my baby boy is! To be up against all odds & prove to everyone that his fighting spirit is making up for everywhere else his heart is struggling. He is my little Hero & I am so-SO proud of him!!
At the end of this meeting we were told that we would meet with the Transplant team tomorrow after they discuss Ryker's case at their board meeting in the morning. Thankfully our wonderful Dr. Marx promised that he would be there to vouch for Ryker, so that the Transplant Team could fully understand Ryker as a strong, fighting human being & not just stack of medical records.
That night I had the most emotional & unexplainable conversations with both my sweet girls, but most specifically Braylee. I still have yet to find the words to even begin to describe the feelings that were felt on that excruciating night. Conversations that she brought up & needed so desperately to have with me, that no 6 year old should ever have to think about, let alone live!! My heart was aching from every angle possible, I just wanted more than anything else in the world to wake up from this horrible nightmare & have all my babies healthy as could be all snuggled up in both mine & my Husbands arms, keeping them away from any pain, harm or fears!
The next day we met with the Transplant Team. I was terrified that they were going to deny Ryker all together, but then they didn't!! The answer that they gave us, although complex, it wasn't No & I was overjoyed! They said that because of Ryker's PVS it makes a heart transplant difficult because, as we already know full well, his PVS also affects his lungs, not just his heart. But because all Ryker's other organs are in perfect shape & he is very obviously such a fighter, they would happily put him on the transplant list if he can meet one very specific criteria....He would need to go a full 9 months with absolutely no PVS interventions. Meaning no ballooning of his veins, no stents, no nothing to his veins for a full 9 months & if he does need a cath in that 9 month period (which I'm sure he will) we will have to decide at that time, IF he does have some narrowing of his veins, would it be worth doing some ballooning? & if we did do any ballooning or interventions, the 9 month clock would be reset.
From there we tried our hardest to focus on the good of the circumstance, no matter how hard & emotional it got....Ryker DIDN'T get denied!!! We talked to many Doctors & people from Ryker's team & we were given two options to take from here-
Option #1-
Prepare Ryker for the Operating Room. In the OR Ryker would get the Sutureless Repair (a surgical intervention for PVS), his PA Band loosened, his Pacemaker leads replaced & a MAJOR (& very new) operation that would cinch up his Right Ventricle to aid in his "Moderate-Severely depressed heart function". Obviously this operation would be a very BIG operation, that comes along with a lot of unknowns & risks, but Ryker's Doctors feel that this operation could potentially make that 9 month maker a little easier to hit.
Option #2-
Prepare Ryker for Discharge & take him home (our new home here in Mass). Do everything possible to get Ryker to the place he would need to be, to be ready to go home. Where he can finally know what it's like to live outside the Hospital walls, see the sunshine & REALLY get to know his 4 amazing siblings! Where he would stay until his next cath in possibly a few months. From there, if his next cath goes well, continue down 9 month path to hopefully get him to transplant, if not, proceed back to option #1
Obviously, after Ryker's entire 10 months of life being spent inside hospital walls, at first glance Option #2 is an amazing sight to see! But then knowing full well that Ryker's heart function is considered "Moderate-Severely depressed" I was terrified at what could come of that decision. So I would begin to lean more towards Option #1 so that we could just get the operation over with & be that much closer to the 9 month marker......BUT then the constant thought that kept coming back to me was- What if he doesn't make it out of the Operating Room??.....I would never forgive myself for not taking him away from this place while I could! Soon enough I came to the full realization that both of the options that we have been given could very well be potentially fatal to our sweet baby boy. It was devastating knowing these were our only two options, that we as parents HAD to choose one!
I felt like I was sitting at a poker table in Las Vegas....Only this had nothing to do with money, this was my sweet, beautiful, innocent baby boy's LIFE!! Do I take what I have & run for the door, or do I push for more?? How could we possibly choose??
From here Jason & I talked to many Doctors, Nurses & staff that know Ryker & our circumstances very well & we got just about every suggestion possible. At this point we felt like we were being pulled & persuaded in every which direction. No matter what way we were leaning at one second, it would change depending on the perspective we looked at it from at the next second. From there we decided that we needed to separate ourselves from everyone's thoughts & opinions, including each others, so that we could know without any doubt that we were going to make the very best decision that we could for our beautiful baby boy. That we would truly try our hardest to focus on what Ryker wants us to chose for him, no matter how hard it may be for us as his parents. A decision that needed to be strictly between, ourselves as individuals, Ryker & God.
After lots of time, prayers & more tears than I would like to admit, Jason & I were able to come to a decision both individually & peacefully that was the answer to our prayers!
To start I will give a little back round- At Ryker's Cath in September, when we found out that his PVS had moved to his right Pulmonary Veins. If it hadn't been for his PVS he would have been a perfect Glenn Procedure candidate, but because of his PVS it was too risky to proceed with the Glenn. That Cath was a hard one to swallow, but everything was still so up in the air & the plan from there was to wait & see how it all was going to play out as Ryker continued to grow & progress, along with preparing him for another Cath in a few months with tons of HOPE & PRAYERS that his PVS would subside & he would be a Glenn candidate! During this waiting period for his next Cath, Ryker THRIVED!!! Everyone was SO impressed with how well he was doing! He got off the ventilator very quickly, his O2 sats were great on very little oxygen & regular nasal cannula, he was tolerating feeds higher than he ever had before, he even aced a lung scan & an echo with no problems at all. Everyone felt like it was near impossible for Ryker's PVS to be getting in the way at all & Jason & I were so excited for the Cath, really feeling like the results were finally going to come back amazing & Ryker would get his Glenn Procedure done & FINALLY GET TO COME HOME WITH US!!!
Then on December 4th Ryker went to the Cath Lab for this long anticipated procedure, his 6th Cardiac Catheterization. It was a horribly long Cath, 6 hours to be exact, but most of that time had been spend trying to get a new Broviac Line for him, so Jason & I were trying our hardest not to worry too much about the prolonged time period. After the Cath, sadly, we received the exact news that we had feared the very most...Ryker's PVS hadn't gotten any better, it got worse (thankfully not a lot worse, but still not good) They had to balloon his two lower veins, the lower left we knew would need some ballooning (it currently has a stent in it), but finding out that the lower right was ballooned as well was like a kick in the stomach! :( We faced the info we recieved the best we could until we were able to pull together a meeting with Ryker's team.
On Monday December 10th, after all data & info were gathered by many, we were finally able to have our meeting. In the Meeting we received much more devastating news....Ryker's heart function had become "moderate-severely depressed" A term that, being his Mother, I cannot even begin to describe the pain & horror that came along with this fact. Ryker's only real chance of survival was to have a heart transplant. The news of my baby desperately needing a heart transplant, in itself, is an extremely hard thing to stomach, but then on top of that, knowing full well that because of Ryker's PVS he may not even be a transplant candidate, was gut wrenching & unexplainable!! The whole rest of the meeting I tried my hardest to fight back the tears & not lose all control while we were still talking with all the Doctors. One huge thing that stood out was the fact that everyone mutually felt, loud & clear, that Ryker is NOT done fighting!! He has shown no signs whatsoever of being tired or done with it all. He has fought through it all so hard that he has literally baffled an entire team of Doctors! Dr. Marx said that given Ryker's current state, as well as looking & acting SO GOOD, he just did not see how it was possible for his heart to be struggling the way it is. That if he were to not know Ryker personally & just look at Ryker's Cath report & pictures he would expect to walk into Ryker's room to a non-responsive, intubated baby. But the FACT is that he's NOT any of that! He is Happy, Smiling, moving around & full of life, regardless of how poorly his heart is currently functioning! He is a Medical statistic impossibility & my ABSOLUTE MIRACLE BABY!!! I cannot get over how tough my baby boy is! To be up against all odds & prove to everyone that his fighting spirit is making up for everywhere else his heart is struggling. He is my little Hero & I am so-SO proud of him!!
At the end of this meeting we were told that we would meet with the Transplant team tomorrow after they discuss Ryker's case at their board meeting in the morning. Thankfully our wonderful Dr. Marx promised that he would be there to vouch for Ryker, so that the Transplant Team could fully understand Ryker as a strong, fighting human being & not just stack of medical records.
That night I had the most emotional & unexplainable conversations with both my sweet girls, but most specifically Braylee. I still have yet to find the words to even begin to describe the feelings that were felt on that excruciating night. Conversations that she brought up & needed so desperately to have with me, that no 6 year old should ever have to think about, let alone live!! My heart was aching from every angle possible, I just wanted more than anything else in the world to wake up from this horrible nightmare & have all my babies healthy as could be all snuggled up in both mine & my Husbands arms, keeping them away from any pain, harm or fears!
The next day we met with the Transplant Team. I was terrified that they were going to deny Ryker all together, but then they didn't!! The answer that they gave us, although complex, it wasn't No & I was overjoyed! They said that because of Ryker's PVS it makes a heart transplant difficult because, as we already know full well, his PVS also affects his lungs, not just his heart. But because all Ryker's other organs are in perfect shape & he is very obviously such a fighter, they would happily put him on the transplant list if he can meet one very specific criteria....He would need to go a full 9 months with absolutely no PVS interventions. Meaning no ballooning of his veins, no stents, no nothing to his veins for a full 9 months & if he does need a cath in that 9 month period (which I'm sure he will) we will have to decide at that time, IF he does have some narrowing of his veins, would it be worth doing some ballooning? & if we did do any ballooning or interventions, the 9 month clock would be reset.
From there we tried our hardest to focus on the good of the circumstance, no matter how hard & emotional it got....Ryker DIDN'T get denied!!! We talked to many Doctors & people from Ryker's team & we were given two options to take from here-
Option #1-
Prepare Ryker for the Operating Room. In the OR Ryker would get the Sutureless Repair (a surgical intervention for PVS), his PA Band loosened, his Pacemaker leads replaced & a MAJOR (& very new) operation that would cinch up his Right Ventricle to aid in his "Moderate-Severely depressed heart function". Obviously this operation would be a very BIG operation, that comes along with a lot of unknowns & risks, but Ryker's Doctors feel that this operation could potentially make that 9 month maker a little easier to hit.
Option #2-
Prepare Ryker for Discharge & take him home (our new home here in Mass). Do everything possible to get Ryker to the place he would need to be, to be ready to go home. Where he can finally know what it's like to live outside the Hospital walls, see the sunshine & REALLY get to know his 4 amazing siblings! Where he would stay until his next cath in possibly a few months. From there, if his next cath goes well, continue down 9 month path to hopefully get him to transplant, if not, proceed back to option #1
Obviously, after Ryker's entire 10 months of life being spent inside hospital walls, at first glance Option #2 is an amazing sight to see! But then knowing full well that Ryker's heart function is considered "Moderate-Severely depressed" I was terrified at what could come of that decision. So I would begin to lean more towards Option #1 so that we could just get the operation over with & be that much closer to the 9 month marker......BUT then the constant thought that kept coming back to me was- What if he doesn't make it out of the Operating Room??.....I would never forgive myself for not taking him away from this place while I could! Soon enough I came to the full realization that both of the options that we have been given could very well be potentially fatal to our sweet baby boy. It was devastating knowing these were our only two options, that we as parents HAD to choose one!
I felt like I was sitting at a poker table in Las Vegas....Only this had nothing to do with money, this was my sweet, beautiful, innocent baby boy's LIFE!! Do I take what I have & run for the door, or do I push for more?? How could we possibly choose??
From here Jason & I talked to many Doctors, Nurses & staff that know Ryker & our circumstances very well & we got just about every suggestion possible. At this point we felt like we were being pulled & persuaded in every which direction. No matter what way we were leaning at one second, it would change depending on the perspective we looked at it from at the next second. From there we decided that we needed to separate ourselves from everyone's thoughts & opinions, including each others, so that we could know without any doubt that we were going to make the very best decision that we could for our beautiful baby boy. That we would truly try our hardest to focus on what Ryker wants us to chose for him, no matter how hard it may be for us as his parents. A decision that needed to be strictly between, ourselves as individuals, Ryker & God.
After lots of time, prayers & more tears than I would like to admit, Jason & I were able to come to a decision both individually & peacefully that was the answer to our prayers!
We have decided to take our baby boy home!!!
Every time I say these words (or even think them) I cry!! I cannot wait for this day to come!!
So as of now we are preparing Ryker for discharge. This could mean 6 weeks or longer before we walk out those doors, but we will get there! We honestly don't know what will happen from here, all we know is that we are doing what we feel in our hearts is the right decision for our baby boy & that "parental gut feeling" has been all we have lived by through this entire experience & I feel like it has taken us pretty far up to this point! We will have extremely frequent Doctor appointments, along with a plan for a cath in the near future & huge hopes for him getting right onto the Heart Transplant List in approximately 8 months from now.
For many months now I have had this detailed image in my head of Ryker on a blanket, on my front room floor, playing with his sisters & they are all giggling & having "normal" sibling time together. I have cried so many times wondering if this will ever come true for my babies & NOW I know it will!! I cannot wait for Ryker to TRULY know his siblings & know what its like to NOT get tortured, poked & prawded 24/7. To have a semi-normal life outside the walls of this hospital he now calls home & to make some real, true, & AMAZING memories with my whole Family under one roof! I cannot wait for that day! It's going to be Beyond Wonderful!!
Saturday, January 12, 2013
AMAZING STEPS FORWARD FOR OUR MIRACLE!!!!!
1/12/12 Update from Rachel - The last two days have been a little surreal, in a very good way! I have been told to start getting in contact with a home med company along with our insurance to start getting the ball rolling with getting the correct equipment at our home for Ryker!!! :) Also, Ryker's nurses have been printing off parent information on all 18 of Ryker's meds & many other things so I fully know all the ins & outs
of all of them! :) I am super excited for it all & at the same time, completely anxiety stricken! My boy is doing so good & he is so happy! I couldn't be more proud!! :)
YAY YAY YAY RYKER and family. I know everyone reading this and myself included cannot wait for you to be at home with you family. :) You are all so amazing and all deserve some very much needed TLC from each other. We will all keep up the payers, support and positive vibes for you and your family. ~ Tisha
of all of them! :) I am super excited for it all & at the same time, completely anxiety stricken! My boy is doing so good & he is so happy! I couldn't be more proud!! :)
YAY YAY YAY RYKER and family. I know everyone reading this and myself included cannot wait for you to be at home with you family. :) You are all so amazing and all deserve some very much needed TLC from each other. We will all keep up the payers, support and positive vibes for you and your family. ~ Tisha
Wednesday, January 9, 2013
Update
Posted by Rachel 1/9/12
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Ryker has had a really good day today! He has been awake & happy, with his beautiful smiles so much!! We are back down to his normal Milrinone dose too!! :) We did discover something yesterday though that was quite disturbing for me. We found out that while Ryker was on the Recovery Floor somehow, someway his Methadone was cut in HALF!!! I was baffled to find out this news & so was the staff in the CICU. Ryker's wean schedule that had been set up by the Pain Service Team was to wean him by 5% every other day. So now to find out that on the 28th of December his dose was cut in half, is frightening! As of now, nobody knows how this happened & quite frankly I am pretty upset with the Recovery Floor &/or whoever it was that was neglectful enough to do something like this. The Attending here in the CICU has said that he WILL get to the bottom of it. Well- Now at least we can fully understand why he came back to the CICU only a day & a half after this "power wean" He came down with a cold, along with having HORRIBLE withdrawals that no one was even aware of!!! Talk about the perfect storm.....My poor sweet baby boy!! I cannot get over how strong he is to go through all that & still come out ahead! :( I am just heart broken for both Ryker & for my Husband that was here with Ryker those absolutely miserable days, not being able to understand what was wrong with our poor boy. :( The good news of this all (because I always try to look at the positive) is that because it was just now discovered yesterday & Ryker is definitely not having any further withdrawals now that it has been a week & a half later, we are keeping the dose where it is, so his Methadone is now half what it was before, which is fantastic! Just wish he hadn't had to go through so much to get it there! We also had a meeting yesterday with the majority of Ryker's team, there was a lot of discussion on a lot of different things that I will go into more detail about on a later date, but the main thing that was discussed was what needs to be done TO GET RYKER HOME!!!! Happy Dance~Happy Dance!! More details to come :)
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Monday, January 7, 2013
Happy 10 Month Birthday Ryker
Post from Rachel 1/7/13
HAPPY 10 MONTH BIRTHDAY TO MY BRAVE BABY BOY!!! 10 months is a little surreal to me, only 2 months away from 1year old & we have only been home 24 hours out of those 10 months! Ryker you have been so strong & brave!! I am so-SO proud of you Love Bug!!! I Love You with all my heart!
HAPPY 10 MONTH BIRTHDAY TO MY BRAVE BABY BOY!!! 10 months is a little surreal to me, only 2 months away from 1year old & we have only been home 24 hours out of those 10 months! Ryker you have been so strong & brave!! I am so-SO proud of you Love Bug!!! I Love You with all my heart!
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