Ryker Jason Warner was born March 7, 2012 in Salt Lake City, Utah to Jason & Rachel Warner. On November 3, 2011 at a routine 20 week ultrasound Ryker's parents found out that their unborn baby boy (Ryker) had something seriously wrong with his heart. At that time although they knew there was something wrong, they had no idea how complex it actually was. At the second of many Doctor appointments Jason & Rachel were given the option to terminate the pregnancy, saying that their baby would not have quality of life. They instantly declined the option & continued with the pregnancy knowing their lives would be changed forever. After many appointments at Primary Children's Hospital they had been given numerous different diagnosis's none of which were entirely correct. When Ryker was only 5 days old Ryker's parents flew him to Boston via air-ambulance where he was later admitted to Children's Hospital Boston. Jason & Rachel left their life, family & everything they knew behind in hopes of saving their sweet baby's life.
3/15/2012-
Ryker was Admitted to Boston Children's Hospital! Many tests began the thorough search for Ryker exact diagnosis. The next day At BCH, Ryker was finally given his first TRUE diagnosis. Then told that Dr. DelNido was moving around his schedule to get Ryker in for a much needed operation within the next week.
3/21/2012-
At just two weeks old Ryker underwent the first of many open heart surgeries. Since then this sweet baby boy has endured so much more than anyone should ever have endure in a lifetime & he has done it all so bravely! He is such an AMAZING miracle boy & continues to inspire & teach everyone around him! He has touched more lives than I think we will ever really know & we are SO grateful that he chose us to be his family! As many people know especially those with children who have a similar diagnosis there are many ups and downs along this journey. Ryker and his family will need as much love, support, positive energy and prayers as possible.
3/23/2012-
At 6am Dr. DelNido had Ryker rushed to the Cath Lab to see what was wrong. He hadn't put out any urine in sometime & was starting to get a grey hue to his skin. The cath came back that his PDA Vessel had re-opened (a vessel that is only supposed to be open in utero & closes after birth) & this was what was causing him problems. So Dr. DelNido pulled Ryker back into the Operating Room for his second heart surgery to close up his PDA Vessel.
4/3/2012-
Yesterday we found out that Ryker has complete heart block in the 1st degree & now has to get a pacemaker placed today by Dr. Baird (Dr. DelNido is out of town). They have to re-open his chest incision that was almost healed to place the pacemaker & the leads. :(
4/6/2012-
They extubated Ryker today & he did amazing! But after 19hrs of breathing on his own he was extremely tired & could no longer breath on his own anymore...So after trying CPAP to get him back on track & a very emotional morning, he had to be re-intubated.
4/17/2012-
Ryker had a successful extubation!! He did amazing! He did have some extremely scarey apnea spells though the following day! Scared everyone in the CICU, especially Mommy & Daddy pretty bad! But he pulled through like he always does & is doing great now!!
4/23/2012-
Ryker is doing AMAZING! Breathing on his own, eating great, alert & adorable!!! MOVING TO THE RECOVERY FLOOR!!!!
4/27/2012-
Ryker is doing amazing here on the recovery floor!! They gave us the discharge folder to go over & he has an appointment to get his broviac line removed on Monday SO WE CAN GO HOME on Wednesday the 2nd!! YAY RYKER!!!!
4/29/2012-
Ryker has had a full week of bottle feeding & doing great, then suddenly out of nowhere he is no longer tolerating his feeds. The recovery floor team has done many things to try to figure out what is wrong & no answers yet.
5/4/2012-
Ryker was moved back to the CICU :( He is still having extreme pain & problems with feeds & his Lactate level bumped to 19. Running MANY tests & getting the GI Team involved to try to find the root of the problem. Poor baby is in so much pain! My heart is breaking for him!
5/7/2012-
Today they took Ryker to the Cath Lab in hopes of finding solutions to all problems he is having with his feeds. They found nothing that would have anything to do with his feeding problem, but they found something else we all never expected- Pulmonary Vein Stinosis..... :( Ryker's two left pulmonary vein were occluded, the lower one more so than the upper. Thankfully they were able to balloon both veins to save them both for now. I don't even know what to think! This is some of the hardest news we have received yet...I am at a loss for words!
5/9/2012-
Today we found out that Ryker (& us) will be staying at Boston Children's Hospital until he is big & strong enough to get his Bidirrectional Glenn operation. This has been a VERY hard one to swallow...but we know that whatever is best for Ryker is all that matters & we will get through it. Ryker has to be at least between 10-12lbs before they will consider doing a Glenn & currently he is 2.87 KG (6lbs3oz) So it could be a while :(
5/15/2012-
Today Dr. DelNido is discussing Ryker's case at the Cardiology Conference in hopes of some other input on whether or not to put Ryker back into surgery for his tummy problems. They decided that it would be best take Ryker back to the O.R to tighten up his PA Band in hopes of lessening his pulmonary blood flow & increasing his perfusion to his entire body, specifically his tummy. While Dr. DelNido is in there he will see whether or not his AV Valve needs a second repair.
5/17/2012-
Today is the day of Ryker's 4th heart surgery. The original plan was to go in & just tighten up the PA Band but after an internal echo during surgery Dr. DelNido decided that it would be best to fix the AV Valve regurgitation (that has now gotten worse) while he is already under anesthesia. This meant that Ryker had to go onto Bypass making the surgery much more severe. But Ryker is an amazing baby boy & he came out of it great & is working towards extubation!
5/20/2012-
Ryker was extubated early this morning & did great with it up until about 5pm when he got extremely agitated & de-satted until completely losing consciousness & they had to call a "code" to revive him. SO SCARY!! The next day he did the same thing again twice, it seems to be out of agitation & pain. They don't know why. It is terrifying!
5/22/2012-
We were just getting ready to start Ryker's feeds to see if that would make him happier & less agitated, when the EP (Electro Physiologists) Team came in to do a routine interrogation on Ryker's pacemaker & it sent his heart into something called "A-Flutter" (where his heart atria was going 400 beats per minute) The only way to pull him out of this "flutter" was to re-intubate, heavily sedate & use defibrillator paddles on him. :( Thank goodness it only took one shock with the paddles to get his native rhythm back. From there Dr. Marx took advantage of him being sedated & did a thorough echo on Ryker's heart. His exact words after the echo were- "Ryker's heart looks extraordinary! It couldn't be in better working order right now considering his anatomy!" I love to hear this!!
5/25/2012-
After lots of extra tests, Ryker got extubated yesterday & they started up his feeds again today! We have one happy, no longer starving baby boy :)
6/5/2012-
Ryker has now had A-Flutter happen 3 times & all three times they have had to use the defibrillator paddles on him :( luckily the last two times they have not had to intubate him & he handled it like a champ! Such an amazing baby boy!
6/7/2012-
Ryker has been moved to the recovery floor!!!! :) He now weighs 3.5KG!!! (7lbs7oz) This is a huge improvement! YAY Ryker!!
6/13/2012-
Ryker got his Broviac Line removed!! This is a huge step in the right direction! Now all we need to focus on is getting him to gain some weight so he can have his Glenn procedure done & then hopefully go home after he is finished recovery from that! :)
6/18/2012-
After 12 days of perfect-relaxing days (I literally had him giggling a few times he was SO happy) on the recovery floor with our sweet boy, he has been moved back to the CICU :( He begun having EXTREME tummy pain after his feeds had been changed & it shot his lactate level up. He became completely inconsolable & obviously in a lot of pain :( So- LOTS of GI tests & blood draws done....Really hard 4 days!! :(
6/22/2012-
After 4 days in the CICU & dozens of tests that all came back negative for any malrotation or blockages in his intestines, Ryker gets to be moved back the Recovery Floor! The cause of his tummy pain was the additives in the breast milk & his digestive tract was on overload. No more additives from here on out! Only breast milk!!
6/28/2012-
Almost a week back on the Recovery Floor & Ryker is doing GREAT!! He is happy as can be & back up to full feeds! This makes 2 happy parents!! :)
7/2/2012-
Our first time being all together as a Family in four months!!! Such a Fantastic Day!! :) We were able to do Family Pictures in the Hospital Garden this week & from there I did a video of Ryker's journey up to this point. Check it out on YouTube-
http://www.youtube.com/watch?v=HnhrxrTdlyw&feature=plcp
7/13/2012-
After a not so good Lung Scan yesterday Dr. Marx decided to put Ryker into a Cath in hopes dilating his Pulmonary Veins. They were able to dilate 1 of his left veins & put a stent into it, however his upper left pulmonary vein is completely occluded...Such hard news! From here we wait till Monday (when everyone is back from the weekend) to find out our plan from here for his PVS will be....
7/14/2012-
One of the Hardest days of my life!! Ryker was recovering from his Cath & had extubated well, when he suddenly went white & limp after getting an IV. He then had to be emergently intubated, paralyzed & sedated. Then put into a medically induced coma to prevent him from going into cardiac arrest.....
7/15/2012-
Numerous Doctors & Nurses have come by to tell us that we are going to have extremely hard decisions to make come Monday...I don't even want to know what this means....My heart is breaking! No one seems to be hopeful, from some all they can say is "I am so sorry!" Not even Dr. Marx seems hopeful :(
7/16/2012-
Dr. DelNido walked through the door & said "No decision needs to be made....we still have options & we will continue letting him grow, thrive & get him to his next operation" :) I love that man!!!!! We do know that more than likely his Glenn will be a bigger than "normal" procedure because of added things that Dr. DelNido will need to do. But Thanks be to God that we have HIM as our baby's surgeon, because he is the best & if anyone can do it, it is Dr. DelNido. From here we are adding some heart meds into his daily routine along with weekly echoes to monitor his cardiac function.
7/20/2012-
Ryker is Extubated & doing very good!! His weight is up to 3.985KG (8lbs7oz) Up a little over a pound since the morning of his Cath!! :) Good Job Ryker!!
8/2/2012-
Ryker gets an NJ tube in & gets his feeds started back up after being off them for 3 weeks. His weight is now up to 4.300KG (9lbs4oz) He is on the right track to getting big & healthy so he can get his Bidirectional Glenn procedure soon & then be on his way to getting home :)
8/6/2012-
Ryker has been pretty fussy for a few days, then we found out poor baby had been in & out of Flutter for almost the entire weekend :( Got him out & he instantly was his happy self again!
8/7/2012-
During a routine Echo they discovered that Ryker has something called an Efusion (a pocket of fluid) under his left lung. Because of this they had to Intubate, sedate & paralyze him in order to insert a pig-tale chest tube to release the fluid. He released 120cc's of clear fluid. During his time of being intubated Dr. Keir (the ICU Attending) decided that it was best to also get a belly CT Scan while he is intubated to see what is going on with his belly & see if their is something that could have been causing some of his irritability these past few days.
8/9/2012-
After the belly CT Scan & a Contrast upper GI test done with his NJ tube in place they came to the conclusion that Ryker DOES in fact have Malrotation of his intestines & he will needs the LADDS Procedure asap to prevent an intestinal volvulous from occurring.
8/10/2012-
Ryker went in for his LADDS Procedure & G-Tube Placement. While in surgery they discovered that Ryker does in fact have Malrotation of his intestines, however his form of Malrotation "works for him" He has no risk of Volvulous (YAY!) & although he may get a little irritable with feeds sometimes it may just be caused by his rectal sphincter being a little tighter than normal. Other than that the procedure went well.
8/17/2012-
Ryker is Extubated!!! He is doing SO GOOD! He weighed in at a whopping 4.760KG (10lbs5oz) & just looks SO big, Happy & Healthy! So proud of my tough boy!!!
8/25/2012-
Ryker has been doing AMAZING!!! All the Doctors & Nurses constantly stop by to see him with their "own eyes" :) He looks Amazing & is as beautiful as it comes! His skin tone, weight, perfect blue eyes....everything! LOVE THIS BOY!!!
8/29/2012-
Ryker has been moved to the Recovery Floor. We have no plans of going home until his Glenn Procedure, but Ryker has been doing so good that they wanted to let him hang out on the Recovery Floor in "comfort" for a bit before his next Cath. He is doing great & looks Fabulous! :)
9/1/2012-
Poor sweet Ryker had to finally get his 2 month immunizations. He has needed these for so long but has never been in a good enough spot to be able to get them...so here we are. He was so tough though! Handled it like it was Nothin' :)
9/2/2012-
Ryker went almost an entire day without peeing.....I know this sounds weird, but I am worried!! The only other time he didn't pee for a while there was something seriously wrong with his heart that he had to go back to the O.R. for. The plan is to do another echo & possibly getting him on the schedule for a Cath. After many doses of Lasix & then a big dose of Diurel he finally peed a ton & seemed much better afterward.
9/3/2012-
Ryker has had a much better day!! He has been very happy but something (something only I as his Mom would probably notice) seemed a little "off" I can't quite pin point it, but he just seems a little out of it. Dr. Marx came in & we spoke for a while about the "no peeing" episode yesterday. He wants to do an echo first thing Tuesday (tomorrow) & a Cath Wednesday. He says from there it if it were up to him (Dr. Marx) he would have him in the O.R. for his Glenn next week....So nervous! Hate thinking of my baby going back to the O.R....... Yet this is what we have been waiting for, for almost 4 months when we found out we would be here in the hospital till he has this operation. So very bitter sweet!
9/4/2012-
By far the HARDEST day of my life!! My sweet baby boy was snuggled in my arms from about 9am-Noon so comfy & perfect! Then I laid him on his bed to get a diaper change, temperature, & blood pressure & from there I can't even begin to describe it.....He once again went limp & lifeless & I panicked to have the CICU Attending come see him asap! As soon as Mel (The CICU Attending) walked in the door he said "Ryker needs to be Intubated NOW" Before I knew it Ryker was Intubated, sedated, paralyzed & back in the CICU.....But within only a few hours that wasn't even half of it- My Beautiful baby boy suddenly went into Cardiac Arrest & had to have 11 minutes of CPR before being put onto ECMO. I have never been so scared in all my life!
9/5/2012-
After almost 24 hours on ECMO & everyone thinking (without saying it) that he was probably not going to be able to come off of ECMO. My tough little Miracle Ryker started showing little signed of fighting under the ECMO & all his Sedation! This baby AMAZES me! I'm so proud of him!
9/6/2012-
Dr. DelNido decided to "clamp" Ryker's Ecmo cannulas to see if he could tolerate no help from the ECMO. He did it for 2 hours perfectly!! :)
9/7/2012-
Just in time for Ryker's 6 month Birthday HE IS OFF ECMO!!! I am so proud of my Beautiful Baby BOY!! Only needing 3 days of ECMO after all he went through, is Amazing! Good Job baby boy!!! You continue to Astound us all!
Such a wonderful & extremely emotional night!!
Here is my FB post from late that night-
Tonight I lay my head by my Miracle Baby's side, watch him breath, touch his perfectly pink skin & just soak him all in. But, especially on this night I am focused not only on his breathing, but I watch & feel his beautiful heart beating so perfectly through his chest. Seeing & feeling my baby's heart beat after so clearly seeing his chest still for days is the best feeling in the world. It is an indescribable beauty! Ryker you AMAZE me! I love you with all my heart!
9/14/2012-
Ryker remains intubated until they feel he is 100% ready & willing to extubate. But in the mean time he has spiked a fever both today & last night. Then we found out he was once again in flutter :( So, once again they had to use the defibrillator on him to cardiovert him out of it. From there he was put onto a cooling pad & once again paralized in hopes of breaking his fever.
9/15/2012-
Today marks exactly 6 months of being at Boston Children's Hospital. Ryker is such an Amazing tough baby boy & still continues to fight through any battle thrown at him! I couldn't be more proud of my baby boy!!
9/17/2012-
Ryker had his 4th heart cath today.....& sadly we did not receive good news with it. This Cath was a "pre-glenn" cath, The cath that we have been waiting here in the hospital since May for, so that he might FINALLY be able to get to his Glenn procedure & get home....However we were told that Ryker's PVS has now moved to his right side as well, making him currently not a Glenn candidate :( We are crushed & don't really know what say or how to feel & especially where we go from here. Waiting on Dr. DelNido to give us his final thoughts. On a positive note- The pressures in his heart were PERFECT (meaning that if is PVS would stop his heart would be in perfect working order for the Glenn & also that they were able to do an Ablation during this Glenn that they feel was very successful in getting rid of what was causing his Flutter! So that was great news!
9/20/2012-
After 3 long days of waiting, Dr. DelNido came to talk to us & gave us a little hope! He said that from what he can see from the cath, the PVS on his right side is in fact narrowing, however it is not enough to make him worry unless it gets worse. So his plan is to wait it out, give him another 6-8 weeks & do another cath. Based off his next Cath we will decide whether Ryker will be going in for his Glenn Procedure or if he will need to go in for a Sutureless Repair in hopes of fixing his PVS. So now we let him grow & get stronger for another 6-8 weeks. Thank goodness for Dr. DelNido AGAIN!! :)
10/2/2012-
The plan was to extubate today, however we have decided to give Ryker a new Broviac line so we can get rid of his old PICC line that he has had for way too long & we are going to change his G-Tube to a GJ-Tube. So we got all this done & now he is resting, the plan is to extubate tomorrow!!!
10/3/2012-
After exactly 4 weeks & 2 days my Baby boy is FINALLY extubated!! Yay buddy! I CANNOT WAIT to hold my baby boy again! :)
10/18/2012-
After having almost 3 uneventful WONDERFUL weeks with my sweet baby boy & holding him almost constantly :) We decided that he needed his first haircut! He looks SO cute!! :)
10/19/2012-
Ryker was having a wonderful day, smiling & playing with his new toys! I even had talked to a few people about how great it has been to see him look & obviously feel so good....Then around 3pm he spiked a fever of 39.3 & then within only about 7 hours his blood cultures from his new Broviac line came back positive! My poor baby!!!
10/23/2012-
After days of dealing with this horrible line infection & it thankfully not getting into his blood stream, the Infectious Disease Team feel that the infection is on its way out & that we will not have to pull the line...Yay!
10/26/2012-
Over the last 24 hours Ryker's infection has suddenly gone from stable & almost gone to severe! His white blood cell count & CRP have shot up higher than they ever have....I am so scared! Our only choice right now is to intubate Ryker so he can have the support he needs to get through this infection. Once they intubated Ryker they pulled his Broviac line that was infected & after trying for hours to put in a new line, they chose to send him to the Cath Lab (for the 5th time now) so he could get a new temporary line placed there. Thanks be to God that he is such a tough boy & handled it all like a Champ! So proud of my Miracle Baby!
10/27/2012-
Today the blood culture they took from his new line came back positive...:( showing that the infection got into his blood stream :( I am PRAYING he can fight this off!!
11/3/2012-
For the last week Ryker has had a lot of green intestinal bile coming from his Gtube as well as little to no stools. I feel like it has something to do with his Jtube being in, that it is causing problems because of how complex his anatomy is. So I had them pull the GJtube & put in only a Gtube. Instantly I he seemed to feel better & stooled 3 times just this day! No more GJtube for him :)
