-Cath Lab-

On Monday May 7th (Ryker's 2 month Bday) They decided that the only way to really get a good look at his heart & the pressures of the blood going through it was to do a full catheterization. So around noon they begun to prep him. Once again all the anesthesiologists & surgical team members (by now they are all my pretty good acquaintances whom I know most of them by name) came in to get the consent forms signed. I thought it would be easy this time, because "its just a cath" as I kept telling myself.... But it was just as hard as it was the very first time around! As they went over the "what if's" & what COULD happen I was sick all over again! The pit in my stomach was back & I was fighting back the tears all over again!

Before they took him away they let me, my mom & my girls go into Ryker's room (usually you can only have 2 people in the room at a time) so we could spend a little time with him before he had to leave to the cath lab. It was perfect! My girls were so cute with him. Kept kissing his head & telling him over & over how much they love him & how tough of a baby they think he is. :) They are the best sisters in the whole world!!

The team came & took him away by about 12:45 & once again I had to kiss my sweet baby boy & tell him goodbye praying that God would watch over him when he is away from my arms! After 5 long hours of him being gone (thank goodness this time around I got to keep my mind occupied by my sweet girls instead of pacing back & forth in the waiting room) I got the call that I could head up to the CICU room.

Walking into Ryker's room is still so surreal to think about....so much kayos & confusion from the 10+ people trying to get him situated, so many people around that I couldn't even get to or see my sweet baby. As soon as I saw him my whole stomach begun to twist in knots. Once again my sweet boy was intubated, completely sedated & ghost white. My heart was pounding & the enormous pressure in my chest was rushing back.

As I was trying to get to Ryker one of the nurses in passing mentioned to me that Ryker wouldn't be getting his sedated echo done like they had originally planned for right after his cath until tomorrow morning. I instantly was overwhelmed by this because they had told me that while he was sedated after his cath they would do a thorough sedated echo to cover every base before making any big decisions. So I asked why & said "they are really going to sedate him AGAIN in the morning, rather than just doing it now when he is already sedated?" She snapped back & started saying something like "based on the results of his echo...." Then the Attending Doctor stopped her in her tracks & said in a stern voice "Mom does not know the results of the cath yet...we need to talk NOW!" The nurse then followed him out of the room wear he lecture her for a bit. My heart was pounding...what did that mean "Mom does not know the results of the cath yet?" What are the results??? & do I want to hear it? Am I going to be able to handle it?

The Attending Doctor came back in the room & said "Mom, can we talk in another room please, I would like to show you some things" As I begun to walk down the hall with him the pressure in my chest was building uncontrollably & I could barely breath! Could I handle hearing the results of the cath all on my own without Jason here? I begun to panic, I needed Jason here by my side, I didn't know if I could handle it all on my own & even if I could, would I be able to relay it back to Jason in a way he could understand it without sobbing uncontrollably?

As we walked in a little office we met up with the Doctor that did Ryker's cath. As he introduced himself to me I knew it was not good. After Ryker's other cath I never met the cath Doctor....what was going on?? The Doctors turned off the lights & put up some images of Ryker's chest on the screen & told me that Ryker's results were a little hard to explain & that the best way to explain them were to show me the cath pictures & video.

After being in the room for about 20 minutes & being walked through all the images of Ryker's cath, the Doctors told me that Ryker has something called Pulmonary Vein Stinosis. All I could think was "Oh God...please no, not PVS...not my baby!!" I didn't know if I could fight back the tears any more! The Attending Doctor asked me if I knew anything about PVS & as I started to answer I begun bawling uncontrollably...I buried my face in my hands & tried so hard to breath & to stop crying, but with the amount of pressure I had on my chest I knew that if I even tried to speak again all that would come out was tears. So I apologized & walked out of the room for a moment....

After being out in the hallway sobbing to myself for a moment, I was able to pull myself back together enough to go back in the office. I apologized to the Doctors & said "I don't know much about PVS, but what I have read is that it is basically a death sentence for Heterotaxy babies" At that point the Cath Doctor excused himself & the Attending Doctor said "Well, I am not going to lie to you & say that you are wrong, but I will say that every case is different" That was not what I wanted to hear! I wanted so badly for him to tell me that I was wrong & that what I had read wasn't the case....but he didn't.

After speaking with him for sometime I walked back to Ryker's room in tears, just wanting to get back to my baby & be by his side. As I walked up to my beautiful boy I placed my hand on his head & I was shocked! His soft spot on the top of his head was so sunken in that it actually pulled a indent down the center of his forehead. I panicked & called the nurse in, she said that she had noticed it as well & that ultrasound was headed up to do an ultrasound on his head to make sure everything was okay. She explained that after a 5 hour cath babies can end up extremely dehydrated & this is a result of dehydration. Ahhhhh!!!.....not that my sweet boy didn't already have enough to deal with, but now he may have something wrong with his head because of extreme dehydration!?!? My poor baby!

Just then Dr. Marx came in & he didn't look good. He said "Mom, I'm sure you have already heard the results but I wanted to go over everything with you myself. But let me start by saying I am so sorry!!" He explained that Ryker's PVS was in his two left Pulmonary veins & that the top one was considered mild PVS & the lower one was considered moderate PVS. He said that as of now the PVS is under control because of being ballooned during the cath, but no one can say weather or not it is coming back & there are only so many times they can cath it to fix it. He said "I am not going to deceive you & say that this isn't something you need to worry about, because it is! PVS is a major thing! But I also don't want to get your hopes up by telling you that about 5-10% of kids don't ever have it come back after the ballooning & Ryker may or may not be in that 5-10%." He also said that he is concerned because although this is a huge thing to find, it has nothing to do with the pain that Ryker has been having, so there is still a big problem that they need to find the source of. After speaking with Dr. Marx about this all for a while he put his hand on my shoulder & said "You know, when you & Ryker came here from Utah & we saw the extreme complexity of Ryker's heart we had very high hopes, but sometimes there is only so much we can do."

I went over to my sweet sleeping baby, laid my head by his chest & lost it!! I felt like I was slowly losing him! How is this all happening?? Just a week ago we were on the recovery floor talking about discharge & now we are here...I was losing my mind, I didn't know what to think anymore. I just knew I had to do everything possible to make sure my sweet boy made it through all this! He has come too far to have anything stop him now...he is my little miracle baby & will continue to amaze people through all of this, I am sure of it!!!

I sent my Mom home with the girls & called Jason (who was back at the hotel with the boys) & asked him to come to the hospital as soon as he could. I needed him here with me so badly! I just wanted to lay in his arms & cry myself to sleep!!

As soon as Jason got here Dr. Del Nido walked in the room. I was SO relieved to see his face, I had so many questions for him that I knew only he could answer. He went over everything with both of us. He had a sense of hope in his voice that I hadn't heard from any of the other Doctors I had talked to that night. It was the biggest sense of relief for me! He said that he is not worried about the PVS unless it presents itself again & that Dr. Marx will do a full sedated echo tomorrow (so keep him sedated & intubated through the night) & hopefully be able to adjust a few things with the pacemaker so that whatever is causing his tummy issue will be found & fixed & if they can't fix it he will operate again on Ryker within the next week or so to get him back on the road to recovery. Although surgery was not the word I wanted to hear again, it was a potential answer to a problem & if that is the only way to get my baby out of pain & back on the road to recovery that was all I cared about!! I was just so happy to have answers!

I was SO grateful he came in & spoke with us! I had been through hell with all the other Doctors & nurses feelings & comments of hopelessness & then Dr. Del Nido came in & helped my level of sanity more than I can even begin to say!

I stayed in Ryker's room all night & didn't leave his side. It was one of those nights that I just wanted to watch my sweet baby sleep. He is so beautiful & so perfect! & such a tough little miracle boy! I am so blessed to be his Mommy!! 

Over the next week they did the sedated echo along with many other tests & adjusting of his pacemaker. I did speak with Dr. Marx again & he apologized for making me feel hopeless, he said he just did not in anyway want to get my hopes up. He told me about two of his own patients that have had PVS in pretty close to the same form as Ryker that they are now 2 & 3 years old & their PVS has never returned....:) So lets just pray that Ryker is going to be in that small percentile!! He has defied the odds so many times before that are WAY bigger odds than this one & I mean he is a baby that is literally 1 in a MILLION so it should be easy for him to fit in that 5-10% of babies that the PVS does not come back & that is all I can focus on right now! & be SO grateful for every single second that I have with this sweet boy!

Today is Monday the 14th & as of now they have not decided weather or not to operate. I spoke with Ryker's cardiology team this morning & discussed a few things along with the feeding issue (they have not fed him since last Thursday because it was continuing to cause him so much pain to do so) They have just had him on IV nutrition for 5 days now & he is gaining about 12 grams a day on that so they are going to up it in hopes that he will gain between 20-25 grams per day. Right now Ryker weighs 7lbs 2oz at 2 months old. He needs some meat on his skinny bones! But they are not planning on starting his feeds again until they know weather or not they will operate this week. Their plan is to discuss Ryker at the Cardiology Conference tomorrow morning, which is the entire board of Cardiologists, so that Ryker has as many brains on his situation as possible to make sure that the perfect decision is made just for him. I am so grateful that we are in a hospital that they will make sure that every single base is covered to make sure my baby boy gets the absolute best care possible! Thank you God for leading us here!!!