I can not even start this without expressing my overwhelming gratitude for all the love, support, and prayers that have come Lily's way. This has been hard . . . maybe harder even than I thought it would be, but it could have been so much worse because we could have had to endure it all without the love of all of you and of Him! So thank you! We love you! Lily loves each and every one of you THIS much :-)
I apologize for not being able to update Lily's blog and appreciate so much that Shely was able to keep everyone updated when I was physically, emotionally, and mentally unable. I know you were all worried sick. I have so many little notes that I have made of things that I want to share with Lily fans, so bear with me this may be a really long blog entry!
April 29th GETTING THERE:
You all know that we have been preparing for this surgery pretty much Lily's entire life. I have been doing my best to focus on planning and arranging this Little Rock "adventure" I drove myself and everyone around me crazy trying to plan every last detail of our move to Little Rock and Lily's surgery. I had to plan because all of this is so far out of my control that "planning" was the only way that I was able to exert some control and keep from losing it completely. . . I planned and I planned and I planned, but I must have simply forgotten that this is PRINCESS Lily that we are talking about and where Princess Lily is concerned nothing ever goes according to plan! LOL The trip to Little Rock was relatively uneventful. Kristal had the van loaded down with the bare essentials that we were taking with us and I was following behind her in the car with the two girls. Had they decided to nap at the same time we may have made it to Little Rock a lot quicker! As it was we had a fun road trip with lots of dancing and singing and lots of the girls telling me how big of a dork I am! Part of my planning was to try and make this the least traumatizing to both of the littles as possible. We were all going to be completely out of our element but I wanted to make it like a fun adventure for the girls, and they were excited. We pulled into Little Rock at about 7pm Friday night. We passed the landlord as we were pulling into the driveway of the little house that we were renting and he said it was unlocked go on in and he would be right back. I had PLANNED to meet him that Friday evening, but I either forgot to let him in on the plan or he forgot the plan because he and the house were not ready for us! After unloading all of our things and letting the girls go wild for a bit we were back in the car. Off to the nearest Walmart to gather cleaning supplies, window coverings (because there wasn't a single curtain or blind in the whole house and this is in the middle of Little Rock!), and whatever else we needed to get set up and settled. Kristal and I spent the next three days working like dogs and getting very little sleep, but it was imperative to me that I had the house set up and ready so that I would not have to worry about Mia or Kristal or my parents or anyone who came to visit us because they would have a nice clean place to stay. I scrubbed and bleached that house until my lungs were raw! Come Monday night when my parents and my sister and her boyfriend Josh were to arrive for Lily's surgery the next day the house was spotless and germ free! ALMOST! LOL Have I mentioned the fact that we arrived in Little Rock during the flood of the century and that this little house that we are renting was built in 1910?!?!? About 20 minutes before everyone arrived we had a few plumbing problems, and by a few problems I mean that that night there were 6 adults and 2 toddlers in that house with no working bathroom! The toilet had overflowed and the bathtub was backed up. It was still raining cats and dogs outside as it had been every single minute since we arrived and there was nothing that could be done but wait. So that night the 6 adults took turns using the bushes outside as the facilities because there were no other options. I couldn't even be upset about that because it was just so par for the course for us!
May 3 SURGERY DAY:
After all the planning and the endless weeks of anticipation surgery day seemed to arrive out of nowhere and catch me unprepared. It felt like my very last vestiges of control were long gone and I was just scared and worried. I woke up with a lump in my throat that morning and as I sit writing this now I can still feel that lump. The day itself was beautiful, and in my opinion made just for Lily! The sun was shining and it wasn't raining. Although I was scared it honestly felt like a magical day - something life changing was happening and we could all feel it! While the adults felt it like a boulder in the pits of our stomachs, Miss Princess Lily herself was just stinking excited. She of course had a brand new fancy dress just for the occasion and she was all princessed out and so excited! She was clapping her hands and laughing and just so ready to get this show on the road. It was so incredible to watch her excitement and be able to see that she just knew that her life was about to change so much. We arrived at Arkansas Children's Hospital at 8:00 am. It wasn't anytime at all until Grand J and I were back in the preop area with Lily. She was still being so funny and so Lily that morning. She was talking up a storm and entertaining all the staff and giggling.
Like I said, she was so ready, but I was not. I wanted to call the whole thing off and go home! What if this was the wrong decision? What could I have possibly been thinking deciding to put Lily through all this??? An all day major surgery with a complex and long recovery? Had I lost my freaking mind? I was scared to the point where I was afraid if I opened my mouth to voice my concerns that I would either vomit everywhere or burst into hysterics. Every protective instinct I have was screaming at me to grab my baby and run! Just get the hell out of there and never look back. I was trying to be rational and tell myself that this was what was best for Lily and that I needed to suck it up and be strong but all rationality was out the window at that point and all I could think of were all the things that could go wrong. I had made up my mind that I was going to bolt for the door like I was running from the feds right about the time they came to get Lily for surgery. It was so hard to put her down on that gurney. It was even harder for them to wheel her off down the hall. In all the things we have been through with Lily I don't think I have ever felt that sick. Just as I was about to melt into a blubbering puddle of fear and nerves right there in the middle of the hallway Lily gave me the reassurance I needed. As they were wheeling her away she was blowing kisses to me and waving and just before they disappeared around the corner Lily said "Love ya" From there the Lord must have picked mom and me up and carried us into the waiting room where Pops, Kristal, Nikki, Josh, and baby Mia were waiting because neither of us was capable of moving at that terrifying point in time. At 10:47 the OR nurse called out to the waiting room to let us know that they were starting Lily's surgery and the true agony began. That was the longest day I think I have ever endured. I'm not sure what all happened during that agonizingly long day. I know that Mia was the best 20 month old ever! While I was just going through the motions that day living from one update from the OR to the next Mia was an absolute angel. I don't know too many 20 month olds that could spend a whole day in a hospital waiting room. I was and am very proud of her, of both my girls!
Dr Richter and the OR staff were great about calling out to the waiting room just about hourly to update us, but no mother can derive very much comfort from "they're still working on her everything is going fine" We had originally been told that the surgery could take from 4-6 hours so around the 5 hour mark I was losing my mind. I found that all of a sudden I was overly concerned with whether or not Dr Richter had had a good nights sleep. If he had had a chance to eat something. Who was in there with him? Was he getting breaks? Did he really really really have to pee? I was marching around that waiting room too nervous to just be still and plagued with thoughts like these when there was another call from the OR. This time the waiting room attendant didn't simply call out the update, he called me over to the phone. I was barely able to croak out a sound to let whoever was on the other end of that line know that I was there when in a rushed voice I heard, "Ms. Johnson? Just wanted to inform you there have been some complications, but that Lily is fine and the surgery will take longer than expected" then the phone went dead. . . . REALLY?!?!?! What were the complications? Was Lily really fine? How much longer was the surgery going to take? At 7:07 pm they called from the OR to say that the reconstruction was complete and that they were "closing." At 8:13 when we were the last family waiting in the surgery center, the attendant long gone, and every single one of us completely on edge just needing SOME word about what was going on Dr. Richter finally emerged. He was grinning as he reported that the surgery was complete and that Lily had done well. Then he sat down and looked me square in the eye and with a look that I can only describe as self amazement told me that Lily's airway was the worst he had ever seen and the most complex repair that he had ever done. Through describing Lily's airway and the repairs that he made the "complications" that had previously scared the life out of us were revealed. Instead of having to use the rib cartilage to graft one area of Lily's trachea as anticipated there were actually multiple areas that required grafting with one particular area that was so narrow the normal grafting would not correct the airway and Dr Richter had to improvise on the fly to figure out a way to keep her airway open. This is the area that is still of great concern as to whether or not her airway will remain open and whether or not she is going to have to be re-trached and require more surgery. After finishing with all the technical details of the surgery Dr. Richter went on to try and lecture me about how I should use Lily's time in the PICU to take a break (Lol I still hear hysterical laughter in my head just typing that) He also tried to tell me that he does not recommend that the parents be present when he got ready to extubate . . . . OH PUHLEASE! I could no longer hear anything that he was saying I just wanted to see Lily, to lay eyes on her myself, and to kiss her warm little chubby cheek. So with as much tact as I could muster at the end of this horrific day I told him he was wasting his breath and that I appreciated his suggestions, but that I would be at Lily's bedside for every second of her recovery INCLUDING her extubation, and that unless he had something else he needed to tell me that I would like to see Lily now please. After picking his chin up off the floor Dr. Richter pointed me toward the PICU waiting room. It was almost 10pm when they had Lily settled in the PICU for the night and I was finally able to see her. I was struck by the strange irony of the fact that the only thing that was getting me through this day was the thought of finally seeing Lily with no tubes! No trach, nothing sticking out of her neck. It was ironic because when she was just 3 months old and was having the surgery to have her trach placed the only thing that got me through that day was knowing that for the first time in her life I would be able to see her whole face with no tape or tubes. To keep from inviting gawkers and exploiting Lily I'm not going to post a pic of her immediately post op, but believe me when I say that when I walked in that room and saw her intubated and sedated with NO TRACH I was amazed. It was a startling sight to someone who had not been through what we have been through, but to me Lily looked amazing! She looked so great that I even noticed the meticulous care that was taken to close her trach and the other incision that had to be made on her neck. The sutures were so tiny you could barely see them. By the time Lily is healed the scars will be nearly imperceptible! So there she laid, peacefully resting intubated, sedated, stable. Just how I had expected her to be and I was ready to settle in for the long lonely week of Lily being completely out to heal and recover so we could take her back to the OR and see how things were healing and if the surgery had been successful. I kissed and hugged my exhausted Mia as much as she would let me and sent her home with Kristal to rest while mom and I set up camp at Lily's bedside.
May 4 THE BUBBLE BURSTS
Starting immediately the first day post op the honeymoon period of just being stable and resting and recovering from this surgery was well and truly over. I had been prepared for Lily to spike a temp, but that didn't happen. I had not been prepared for Lily to be so unstable. I had not been prepared for the nurses and residents to have to work constantly just to maintain Lily and keep her vitals "compatible with life" It has been insane! Her heart rate, blood pressure, and oxygen saturations have been all over the place. The first night she got into some pretty severe respiratory distress and had to be bagged and that was the night that Lily had Pneumothorax #1. After getting the chest tube placed and placing a central line so that she could be more closely monitored and have access in case of emergency Lily seemed to be somewhat stable for a few hours, then we started again. Her sats would drop and there would seem to be nothing that would work to make her better and bring her sats up. Then her heart rate would drop, and her baby blood pressure just stayed in the toilet. It felt like we were in this crazy vicious cycle that was never going to end. We would work and pray and struggle to get the sats >90%, the heart rate > 70, and the systolic blood pressure > 50 then you would sit back and sigh and pray and hope that she would just stay there at safe values and be somewhat stable for a minute, but inevitably she would not. Besides having extremely labile vitals I was also watching Lily literally grow before my eyes. She wasn't being able to pee so she was getting into bad fluid overload. She was so puffy she was not even recognizable. Just having all that fluid made it more difficult for her to breathe, which made her vitals even more unstable, which made our vicious cycle even worse. I was living in a state of sheer terror! Lily was so bad and was having complication after complication that was above and beyond the normal course of recovery from this surgery. She was paralyzed and sedated so she couldn't talk to me and tell me if she was ok or in pain. I hadn't heard her say momma or been able to pick her up in days and I just MISSED HER!!! I think it was somewhere around Thursday afternoon that the guilt set in and I thought I was going to lose my mind. It may have had something to do with the fact that I had not slept since the night before her surgery :-) but suddenly the realization that *I* had done this hit me like a ton of bricks! Had I not voluntarily chosen this path for Lily we would at that moment be at home safe and sound with Mia and Kristal, the whole family together in our element, dancing to Lily's favorite songs and giggling at Mia and just FINE! Had I not made the decision to put Lily through this I would not now be sitting here trying to breathe, scared to death, and wondering if I would ever again hear Lily say Momma or giggle or play or be Lily. Then the bad got worse. That was the night of the second pneumothorax with the placement of the bigger chest tube and the night that Lily had a pulmonary embolism. I can't talk about that night. Let me just say that that one night was worse than all of our NICU days and every scary medical moment Lily has ever had all rolled into one. Lily was dying and there was nothing that could be done to help her or get her back. Well, nothing that we mere mortals could do anyway except pray, and I know that all of you were. I also know that God had Lily in his arms and was hearing every single prayer. I don't know if there is any such database in existence anywhere, but I would like to see the statistics of TWO YEAR OLDS who have PE's!!!! How many 2 year olds have ever had to have q12 lovenox injections or wear SCD's? APPARENTLY not many because here at the CHILDREN's hospital they did not have SCD's small enough and the damn things nearly came up to her head! LOL
I really thought that it would be cathartic to write all this down. I wanted to use this blog to share our experiences with all of Lily's supporters and keep everyone who is loving and worrying and praying for Lily updated. I also wanted to keep a record of everything so that Lily can look back at it one day and know just what a miracle she is. . . . but right now I just can't. There is so much more to share tearful moments and funny moments. Joyous triumphant moments that HAVE to be written down! However, for right now 20 days after Lily's surgery as we are still in the hospital the best I
can do right now is to say that Lily is doing remarkably well! She has come so far, she has no trach and is breathing on her own, she is still struggling daily and having complications right and left because that is what Lily does, but she is ok and things are getting better!! Thank you all again for your love and support. Please keep up the prayers! I'm going to slap a big fat TO BE CONTINUED in here with a promise that I WILL finish Lily's story. I've made notes - these are things that must be told! Good night for now and God Bless!
