Hello Friends!
The last post that was made was all about us gearing up for Oakes’ first birthday. His birthday came and went, March 10th, and what an eventful birthday it was!
To start, we did not host a big party for him or our family and friends. We did have some family in town and wanted to keep the weekend pretty low key. However some of our amazing friends at the hospital thought a party for Oakes on the floor was definitely in order, so Oakes did have quite a bash on the 7th floor of Children’s on Friday the 9th. It was an open house kind of event for the staff, there was cake and goodies and the staff popped in when they had a few free minutes. We even had nurses and staff members come in on their days off to join the celebration. We dressed Oakes, put him in our stroller and brought him to the party for a short visit. He slept through most of it, and in hindsight it was probably a little too much stimulation for him. Because of the special event we got permission to have cousins at the party and our dear friends the Moriartys came with their two children. It was a great gathering, a little chaotic, but probably like most one-year-old birthday parties in that regard. So normal in the chaos, but with some not so normal attention on Oakes’ big day. On Friday we were blessed to have a professional photographer there with us, Mrs. Heidi Drexler. She joined us and captured the event for us. What an amazing gift. We also were approached by the hospital’s PR group, who thought that Oakes’ story was so touching and unique they wanted to alert the local media about his birthday party, so Channel 2 joined the event and put together a news piece. Yvonne, one of our nurse besties also wrote a piece about Oakes and our family that was posted on the hospital’s blog. Yvonne’s post is here. The news clip is here. Just an amazing celebration! And I hope Isla never asks to see the news footage from her first birthday!
Here are some of Heidi’s amazing images from the day.
Getting dressed for the party!
Yvonne stealing a smooch!
Making our way to the party!
Aunt Shani, Pappa and the birthday boy
One of our amazing pulmonologist, Dr. Michelson
Talk to Dr. Eghtesady ouside of the party
So, the party was a hit. Yvonne and Tammy, Dr. Lee and everyone that helped plan the party spoiled us. We didn’t do a thing; we just showed up and ate cake. The party was truly a gift. Oakes’ birthday felt like an extra special milestone. When we were all crowded into the conference room singing Happy Birthday I knew that everyone in the room deeply loved my son, and my family. I knew that everyone present appreciated how monumental it was for Oakes to make it to his first birthday. For many months I have know and felt comforted that the staff at Children’s absolutely loves my little Oakes. And they love Isla. There are probably 50something nurses that rotate in and out of the CICU during the week and truly I believe that Oakes has 50something aunts and uncles loving on him and taking just the best possible care of him daily. They have collectively changed more of his diapers than Greg and I. They have comforted him when we were not there, they have held him, rocked him to sleep, read him books, tickled him, giggled with him, fed him, and given him life saving support for months. They encourage him, cheer him on and they given him stern talks when he has misbehaved. The staff in the CICU is family, so it was so appropriate to celebrate Oakes’ big day with them. Like I mentioned, for some time I have know that my Oakes is loved, but it wasn’t until just recently that Connie, a chaplain that has visited Oakes and our family since he was born shared with me how inspiration Oakes is to the staff. Connie used to work with families in the CICU but has moved to the NICU now. She is plenty busy down there, and we are not her “assignment” anymore, but she still comes to visit us often. Connie recently told me that when she is having a rough day, she loves to come and visit Oakes. She shared that Oakes room is warm and cozy. She loves the photos and artwork on the walls. But even more, Connie loves to visit Oakes himself. For Connie, and she believed for others too, Oakes is just this living, breathing, smiling, sucky thumb, thriving reminder that their hard work makes a difference, that science works and miracles happen too. I had not considered Connie’s perspective, or thought that Oakes actually inspires the staff, but it was so very touching to hear.
For some time, the staff has joked with me about being half way through nursing school just by being at Oakes bedside for so long, about needing to get me on the payroll, wearing scrubs, stuff along those lines, and I have always said that I come to the hospital everyday because Oakes is there. But I cannot imagine going in to work day after day and working so hard like these men and women do if it wasn’t my own child. I just don’t get that. I have a degree in Furniture Design. I am a Creative. I always have been. I NEVER considered becoming a medical profession; it is just not where my strengths lie nor my interests. To become a nurse, or therapist or doctor that works with children takes a very special person. And I believe, to willing choose to work in an intensive care unit takes an even more special person. You have to be brilliant, you have to thrive under pressure, stay calm under pressure, you have to have patience and have an inner strength that is exceptional. You have to be able to communicate with emotional parents, who are sometimes happy, but usually scared, sad and just devastated. You have to be amazing, and really, from my perspective you have to be a wee bit crazy. Crazy enough to walk into that unit, day after day, week after week, month after month and year after year. There are nurses on that floor that have been there for 20+ years. I have no idea how they do it! No idea. I have thought more than once that the ICU staff is like Marines or Navy SEALs or just the bravest soldiers you can imagine …they are brave like I have never even imagined existed, they are strong, and they have dedicated their lives to helping others, to helping the most helpless babies and the most scared families. And really, the truth is that they don’t help babies and their families, they save babies and their families. At least that is what they are trying to do. They electively sign up for maybe the most stressful unit in the hospital and work with ease, grace and smiles on their faces. So the idea that my Oakes could inspire this group of exception people is beyond humbling.
All of that to say that we LOVE the staff that has helped to raise our Oakes over this past year. They have taken exceptional care of him. They have also pampered Isla like I never imagined that they would. We are blessed, truly blessed to have made all of the 50something friends that we have made this year. Greg and I have received so much support from the staff. They have taught us all that we know about our little heart baby, they have listened to us and respected us; they have always taken our suggestions and hunches into consideration. They have advocated for us and our family, they have counseled us, they have cried with us, hoped with us, prayed with us and for us, they have showered all of us with gifts and for some time they have been smiling and laughing with us. So, celebrating Oakes’ first year with us was just the perfect way to spend the day.
Thank you Yvonne, Tammy, and Dr. Lee for planning and hosting the party. Thank you for the amazing scrapbook! Thank you to all of the staff in the Heart Center for doing your job. You have all made an enormous difference in our lives. Not only by taking such amazing care of Oakes, but a year that could have been 100% miserable for Greg, Isla and I has been so much better beacuse of you. WE LOVE YOU.
So the party was a hit. Family was in town, and a much-anticipated weekend was ahead of us. Oakes was not quite himself at Friday’s party, he was sleepy, he was a little warm, and he was just off a bit. I think everyone assumed it was the extra noise, the extra stimulation, and the extra excitement. So, I was shocked when I got a call at 2am on Saturday saying that Oakes had left 7West and was headed back to the Annex with a fever of 42.8 C. Temperatures are measured using Celsius on the floor. There is a chart in the room with conversions, so from memory I knew that 38 is a considerable fever, I don’t think Oakes has ever been over 39…. so when I heard 42.8, I was horrified. His temperature was about 109.4 F. The fellow that I spoke with was on top of everything, she was great. She knows Oakes and I felt comfortable knowing that she was there with him. At the time they literally had ice packs around him and they had just hooked him up a machine called Arctic Sun. It is like a heating pad, but cold. It is this long narrow plastic sleeve that ran from the top of his head down his spine, and then there was a second sleeve that wrapped entirely around his waist like a belt would. Both sleeves have adhesive on one side and the sleeves were literally taped to Oakes to assure that it doesn’t move around. In order to bring Oakes’ temperature down, the Fellow set the temperature on the machine and the machine continuously circulated cold water through the sleeves and then would measure the temperature of the water that is circulating out of the sleeve and back to the machine to calculate Oakes’ temperature and auto regulate itself. This was all new to us, since Oakes had never need the Arctic sun before. After the Fellow explained how Oakes had gotten to this point she explained that they were watching him closely to see if he would seize. I know this doctor well enough to pick up on the fear in her calm delivery of this news. She told me she would call me back with an update if anything else happened. I assured her my shoes were on and I would see her in 10 minutes. She said, “Ok, good, I think that is a good idea.”
When I got to the hospital Oakes temp had already come down a couple degrees, but he looked awful. His coloring was bad, his eyes were rolling back in his head but otherwise he was not moving, and to the touch he was freezing. I sat with him for some time and explained that this was inappropriate behavior for a birthday. Oh, Oakes! Overnight, his temp kept dropping. He was sleepy and out of it, I was sick to my stomach with fear but it was a fairly boring evening - no seizures.
The American Lung Association, Flight for Air was happening that day. I was supposed to be at the Metropolitan building around 7am. In hindsight, I should have skipped the event, but I didn’t. I hadn’t slept, and was a wreck wondering if Oakes would be OK, or if the fever had done damage to his brain that we would discover later, but knowing that Oakes was stable that morning, I felt strongly that I needed to go and climb those damn stairs.
When I got there our team was already together. Everyone had their Mighty Oakes Heart Foundation shirts on, they were sleepy but smiling. There were about 1200 people that climbed that day, but we were one of the first teams that hit the stairs. We were lined up and ready to go. Andy led our team. He is one of Oakes’ amazing nurses and he is cancer survivor. This was Andy’s first athletic event that he participated in since his recovery over a year ago. To see him standing in the doorway to the stairs jumping back and forth shanking his arms around excitedly brought tears to my eyes. Our team started cheering and clapping which echoed through the lobby of the Met. The lobby became very quiet, all eyes were on the MOHF team and when Andy got the signal he ran through the doorway. Every 10 seconds another team member was sent up. There were 16 of us, and we all finished in less than 15 minutes. Some moved faster than others, Andy finished the 40 flights in a little over 7 minutes (amazing!), but single file we were steadily moving straight up, step by step, sweating, taking deep breaths for Oakes. It was powerful. Andy started us off, my sweet Mom climbed in a Zen like state, slowly but steadily. Greg’s sister Shani climbed, her friend Katie our team organizer climbed too. Chrissy, the mother of our sweet Angel Elizabeth climbed with us. My sister in Washington DC, climbed remotely. She hit the steps of the Washington Memorial with her MOHF shirt for twenty minutes and her fiancé who is deployed in the middle east got on the treadmill and did 40 flights for Oakes, as well as many other devoted, passionate, and fit friends of Oakes. I had tears streaming down my cheeks for the first 6 flights when I talked myself out of that. I was just emotional beyond words. I finished in about 12 minutes, and met up with Greg, Isla and the team afterwards. I think everyone felt good and proud, and excited to do it again next year. When thanking everyone Katie mentioned, Oakes should be with us next year, and certainly, if we can make that happen, he will be there next year wearing his own MOHF shirt smiling, climbing a few stairs of his own, cheering as we head up! (March 21, 2013 in St. Louis - mark your calendar! (Lots of other cities have their own climbs if you want to participate in your hometown)
Thank you Katie, and our MOHF team! And thank you to everyone that donated to our team and helped up raise money for the American Lung Association!
After the climb, I was one of several speakers that spoke outside during a little street party that was part of the after event to the climb. I had been asked to speak since Oakes was being honored as a Lung Hero. At this point I was completely emotional and overwhelmed, but I felt proud and honored to speak. Oakes was the only child that was being honored and one of only a few Lung Heroes that is living.
After speaking, Greg and Isla and I returned to the hospital. Oakes had remained stable while we were gone, but everyone that was on for the day shift seemed concerned by the dramatic change that took place overnight. Even though we had not witnessed a seizure, the staff agreed that having a CT scan of his head and getting a Neurology consult was the next step. Oakes could have had a little brain bleed and he still could have had a seizure so of course we wanted to move forward with that plan. The CT came back normal, and Neurology gave him the thumbs up. When he was awake he was behaving appropriately, his eyes looked good, he responded to sound, would track movement, all promising, but even with the promising news I was hitting a wall in a way that I hadn’t for so long. For so long, Oakes has been moving uphill, he has been making progress and hitting little milestones. I just wasn’t prepared for a 2am call, a 109+ fever and the scare that Oakes may now after all of this, on his birthday have a brain injury. Everything about the last year seemed to just hit me. It felt awful considering we had been there for a year and we were still getting scary news. I was so sad, I was frustrated, I was pretty pissed but mostly I was tired. The doctors reassured us that they thought Oakes condition was under control but that he may not be himself for a week or more due to the fever, we would just wait and watch closely. Upon hearing this, my amazing Mom sternly sent me home and ordered me to go to bed, which I did.
That week after Oakes’ birthday we did just what his doctors had ordered, we waited and watched. Oakes was seen daily by Neurology, and by Infectious disease. The doctors had several ideas as to what caused the fever. 1. It could have been an infection or bug of some type. Oakes had every possible swab taken, and every possible lab run. Everything came back negative – normal. No detectable bugs on board. The second possibility was withdrawal, but no one thought that likely because typically a child would not get such a high fever if they were just going through withdrawal. However, Oakes had been getting his meds weaned on Wednesday and he was having mild fevers on Fridays. Nothing even close to 109, but low grade fevers. There was a pattern there, but no one thought that was the issue. The third theory was that some of his medications could be reacting to each other, so a suspect antibiotic that he had been on for 25 days, and still had 2 days left was turned off. We would wait and see if that made a difference. Sunday and Monday were quiet. Lots of sleeping. Then on Tuesday I got a little tiny smile from Oakes, then he went right back to sleep. I held him, read him books, and played all kinds of music for him. I was always watching and hoping that he was still in there, beautiful brain and all, knowing that we were with him just loving him to pieces. Later in the week he was more awake, but when he was awake he was MAD. He was inconsolable, a little sweaty, fidgety and he seemed miserable. I mentioned to the attending more than once that I thought Oakes was going through withdrawal. Maybe he had an infection AND was withdrawing, I didn’t know, but when I listened to what he was saying it was pretty much, “I am freaking miserable, don’t touch me, don’t change my diaper, go away and leave me alone.” Then after he started frantically chewing on his right thumb to the point that it was bleeding, I became more concerned and more vocal. At that point Oakes wasn’t talking to me, he was just giving me the finger, and I got it. I asked that they didn’t wean his narcotics, that they give him a break on the wean schedule. The attending did that; he even gave Oakes a one-time bolus (or dose) of the narcotic Dilauded that they are weaning and Oakes seemed more himself. As test results from the Infection Disease group all came back negative, and a bolas of Dilauded was given when he was super irritated and that successfully brought him back to his baseline, everyone got on board with the theory that this was all withdrawal. Of course, a normal kid wouldn’t spike a fever of 109 if they were going through withdrawal, but Oakes would! So, everyone agreed, withdrawal. What a relief. I mean really how horrible, a baby going through withdrawal is disgusting and heart breaking, but we were so happy that there wasn’t some crazy infection somewhere that would set us back for months or even be fatal. Dr. Duncan is the one that got everyone on board that this was withdrawal and she sat down with a few other doctors and came up with a new wean schedule. The new schedule added several weeks to the total number of weeks that we were originally told it would take, but whatever! We were fine with that. Gladly. The new schedule started last Monday, and since then Oakes has been great. He has been a tad more sleepy than usual, but when he is awake, he is happy, his is alert, he has been eating and participating in all of his therapies. Our sweet little Oakes is back and everyone believes that his brain is still perfect. Happy birthday and Amen!
So March 10th was Oakes first birthday, and then March 22nd was the anniversary of his first open heart and slide tracheoplasty surgery, the 22nd was also my birthday. Last year my entire family was focused on Oakes on the 22nd, as was I. I could have cared less that it was my birthday; I did not need or what a celebration, all I needed and wanted was good news post-op and that is what we got. This year, with lots of persuading from Greg, my family and the staff at Children’s I agreed to leave town on my birthday. Greg and I went to Florida for a few days and we LOVED it. I have never appreciated a vacation like I appreciated this one. I spent my days mindlessly hanging out on the beach, one night I had 3 whole glasses of wine and then slept in until 10am….things that I would never let myself do at home. Not only did I get several updates from our family that took taking care of Isla, and the nurses that were showering Oakes with extra special tender loving care, but I had a small list of friends and family that visited Oakes for me. I had peace that even though my little family was not all together, we are all in great hands and we were all being spoiled.
The very latest: Oakes went back to 7West as soon as we got back in town and he has been doing great. This new wean schedule seems to agree with him as does life in 7West. The entire goal of 7West is to help transition kids back into home life and the real world, so for Oakes we are trying to stimulate him more than ever. He is taking three trips a week to the rooftop garden in our stroller. He is receiving Music therapy in addition to the Physical and Speech therapy that he has had forever. We have bumped up his caloric intake. We took away his telemetry – all of the leads stuck to his chest giving us his vital signs. Gone. He doesn’t get daily X-rays of his chest. They are just ordered on a need-be basis, which hasn’t happened since we have been on the West side. We are weaning his oxygen. He has been on 1 Liter forever, and he is rocking out at .5 Liters right now. Oakes has been on 2 IV diuretics since transplant. We can’t go home with those in IVs so one has successfully been transitioned to an oral dose and the second one is slowly be weaned off. I am holding my breath on that one. Today the rate on Oakes vent went down from 20 (where he has been sitting since the New Year), to 18 and so far so good. We will continue to wean that slowly. Oakes home vent has been ordered and the process to set up home nursing has begun. (Oakes will go home on the vent and likely have the vent and trach for at least another year, so we will have home nurses with us for a year!) Oakes has had his first bath in a tub. The first one he had he did not enjoy, but later ones have been lots of fun. He is also wearing shoes and clothes daily. He is full of smiles and is working hard to win over a few more hearts now that we are in 7West. If Oakes stays on his current wean schedule then we have a date of April 22nd for Oakes’ last dose of Dilauded. Technically we could go home then. But we will likely hang out for a bit to make sure that he is stable once that happens. I was told today that a realistic discharge date would be May 1st, Isla’s Birthday!
What Oakes is telling me now: “I am so happy you guys are finally turning these drugs off! Don’t get me wrong I LOVE my drugs, but life if good, I feel great and being awake and playing with my aunties and uncles and my Isla are AWESOME! Can’t you tell by my smile? Please tell my pretty Speech therapist that I hate peas but I love pears. Ceiling tiles are ugly. Mom, why are you welling up with tears again, I told you a long time ago that I could do this, geez you’re embarrassing me! Can we go to the garden right now? Will you read me that Thomas the Train book that makes all of the sounds? Where is Isla? I love my thumb. Is that my girlfriend in the hall that I hear? Oh, man, I love to have a good old explosive poop while the nurses are changing my diaper, it makes my day! Momma, lets get out of this place, I’m ready to come home."
And here are a gazillion pictures that I have taken since the last post:
Getting dressed for the party!
Making our way to the party!
Aunt Shani, Pappa and the birthday boy
One of our amazing pulmonologist, Dr. Michelson
Talk to Dr. Eghtesady ouside of the party 
Oakes decorated blood pressure cuff. Picture by Isla.
Hanging out on the floor. Picture by Isla.
Isla's own little play time. 
And snuggle time. 
Our move to 7 West. Yvonne was our nurse that day which was perfect!
Yvonne carrying Oakes into his new room. 
Oakes wrapped in the Arctic Sun. 
Hanging out in a fire truck after the climb.
Oakes' Lung Hero posters
Ena and Grandpa Dale
Tia Tina in DC
And Tio Sante far away!
We took a break from passing out goodies to see what was blooming in the garden. 
Oh, you better believe it, mustaches for everyone!
We rode the Mertolink into town which gave us lots of time to snuggle on the way back, we were all pooped!
Watching a little Dora. "Swipper no swipping!"
Sitting up on his own in the bath tub
Resting in his Superman shirt after his first big bath!
Our view West turns green....
Isla checking on Oakes as we walk out of his room headed to the garden
