She explained that they couldn't detect the flow I the vein and they needed to make double sure that it was working properly. Because his veins are so tiny, it is very easy for them to collect blood clots... and due to natural swelling from surgery, those tiny veins are even tinnier in the beginning. If the scan didn't show the ope vein, Chandler would need to go back into surgery to have it fixed. Fan. F-ing. Tastic. We roll the kid down the hall, he's screaming for his mom... at this point, I just feel like I am in such "mom mode." My emotions are not on my sleeve, I am cool as a freaking frozen cucumber. Chuck on the other hand, is not. I don't know how he's feeling, but I find out later on. We get to the scanner room and we put him on the table, he's not happy, of course. He won't let me leave him, so they put on a crazy heavy blue and purple patterned cover on me since there's radiation. I joke if I can borrow it because I have a Holiday party to go to (I get real funny when I am stressed out. Or maybe just cheese - whatever.) But, I hold his hand and try to think of as many things to talk about that relate to purple because the tube is bright purple.... "OH! Purple! Does Blippi like purple? No, he likes orange and blue! Neena loves purple! Uncle Josh and Daddy love purple too because of the Ravens! GO RAVENS! uhhhh grapes are purple!!! It's a purple party!" and by the time I am done describing everything in the universe that is purple, it's done. It only took about 30 seconds. I am texting Chuck and he's like "Im coming up there!!" Im in the elevator heading to the room and the nurse said "I dont think I have met anyone as calm as you..." I said..."I try not to get upset about things I can't control. I have been mentally preparing for this experience"... I seem pretty calm, but don't worry, I am still scared too. Before Chuck gets to the room, the doctor comes in with the results. Everything looks good!! No surgery needed! Laaaawd have mercy, thank ya Jesus. They're increasing some hydrating technical doctor-stuff that I don't know... so he's extra hydrated with a blood thinner so that the blood runs easily. He will have more ultrasounds to check, the hope is that the extra fluid will fluff up the vein and it will be easy to see on the sonogram. No other CTs should be needed. Chuck then comes rolling in with tears in his eyes, because it was kind of scary.
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Guys. I took a shower this morning and it was awesome. Chandler got some good rest last night. It's about 10:30 am, little man is snoozing, and I just listened in on the rounds. The AUB levels are 1.3, WIF 8.4, AIO 0.4, and WTF is 100%. Exactly, I had no idea what they were talking about but I got the gist that everything is looking really good!! His liver levels are trending in the right direction, they pulled his oxygen nose thingy, and they are going to pull one of his IVs today. Chandler got some good rest last night! Had a solid 5 hours with no interruption which is a long time considering how much they bug him. They did another sonogram which he slept through. He's doing really well! They took his nose oxygen thing out so he only has a tube that goes to his belly to suction mucus now. A surgeon came in and said his levels look really good. They'll start pulling some IVs out so he will have less wires and I can snuggle with him today 🥰 Chuck should be visiting at some point, whenever he's up for it. :) They decided to wait on placing the PICC line (the IV he will go home with) because he is fighting this cold, and he's congested. He has to be sedated for this procedure and they don't want to risk him not being able to breathe, or mucus blocking his wind pipe. So, whenever he is better form this cold, or doesn't have so much congestion, they will place the PICC line. Since he cant get the PICC line, they have to keep the line in his neck. There is slight more risk of infection and its not very comfortable, so they like to get rid of it and replace with the PICC line in his arm as soon as they can. They both lead to the same place - straight to the heart! <3 2 Big things!
Surprise care packages!Yesterday, Chuck was talking about how he sent me a package, and he was super annoyed because it was supposed to arrive on Tuesday and it hadn't arrived. Well, I just got two packages right before he got to the room, but didn't have time to open because I was sitting down getting ready to hold Chandler and it took a lot of prep work with pillow placements! Well, I finally opened the first box and I was super shocked. A ton of candy. Just kidding, not a ton, but literally 6 lbs!!! A ton of chocolateeeeee candieeees!! You can imagine how excited I was! But wow, I do not need to eat that much candy!! This picture was only the tip of the iceberg, so much more was buried beneath! I could not figure out who it was from (Chuck didn't seem like he sent it when he chatted about the packages arriving) so I thought it may have been from someone else since multiple people have asked for our room number. The note said "You're the best mom, wife, daughter, granddaughter, and friend n the world (that includes all worlds!) Just like a sugar high will soon be over so will these tough times - we love you so much - your fam".... I analyzed the text. The punctuation, wording, subjects (mentioning of multiple universes), so I had a very small group of people I suspected. No one fessed up. Until Chuck responded later! He figured I could share it with the doctors and nurses - such a sweet idea. Kristen also confessed that she sent me a very similar box, haha!! So I am going to have DOUBLE CANDDDDYYY! You can thank the hyper-ness of the staff here in the PICU to Chuck and Kristen's care packages lol.
Huge shout out to all the friends who have sent me little something. You know who you are, and it is VERY MUCH appreciated. It really has made a world of difference experiencing all the love that is accompanying this tough time. Thank you. <3
I would like to add that during the time I have been writing this post, Chandler woke up and we had our first conversation where he wasn't upset!!! He asked me “what’s that?” (Noise)... and he said his belly hurt, and that he wants a cookie and the cookie is in my pocket.... Or that it's over there (on the counter) and that daddy has cookies. I Love this kid.... although he also told me to "get away from [him]." lol I'm smothering him too much. Another little shout out to Blippi. You are saving my sanity and helping this kid relax. Thanks, crazy-dude. He's awake!!! No breathing tube anymore. I know I have been all like "super positive" and like, "oh yay, rainbows and butterflies" so far, but holy shit, this was the hardest part. Let me rewind.
He was super itchy so they gave him some Benadryl and powerful pain medication to help him out. They gave him this little Elmo because he kept pulling at his drain bag thingy ("thingy" is often used as a very serious technical term). You'll start seeing it more often as we continue this journey. It took 3 hours to eventually calm him down. While he was sleeping, they did another sonogram to check the flow of his valves. Since then, he's been pretty calm since his last medication dose. Right now, he is getting another treatment from respiratory so I am taking some time before I forget everything. We are about to give him a sponge bath and clean him up.
The hardest part is finally over, and even though we still have a long recovery, it should only get easier from here. Chandler, YOU ARE SO TOUGH!!!!!!!! I see how hard this is for you. I freaking love you. And here are some pictures of Linky-Linc from my parents that cheered me up today. We miss you, girl.
I am writing this mid morning while Chandler naps. Last night they took an X-ray at 4am (not 12am, which I thought). Woke up, scooted out of the room, checked on the booger boy and went back to sleep. I felt kind of guilty for snoozing, but I know I shouldn't. I woke up around 7:15 and got some updates from the team. The hardest thing is just seeing him have little bursts of pain. He clenches, bares down, and wiggles around. They say he can hear me, so I try talking to him, rubbing his head, hold his little hand but sometimes it stimulates him and he tries to wake up, so I'm keeping it to a minimal because I want him to rest as much as possible! Thank goodness for pain medication. <3 Since Chandler came in with a few viruses, his chest has mucus build up, which they are constantly suctioning. There is a respiratory specialists that comes to check on his lungs and breathing. Their goal today is to slowly decrease the breathing support and remove the breathing tube to wake him up, but their biggest concern is the mucus once they pull the tube. They said waking is the hardest part because he will not be happy. There was also a positive result for some bacteria, so they gave him some antibiotics. The major thing they will start analyzing are his liver levels, because this is when his liver is starting to show its true colors! Prior to today, the levels weren't accurate because its a mix of filtering the transfusion blood he received and whatever else was in the liver when he received it. I heard from Chuck this morning, he said he's in a lot of pain. Doc said this will be the most painful day because anesthesia is wearing off and he has to get up and move around! I was hoping to be with him when he gets up, but between the visiting hour restrictions and juggling the timing of waking up Chandler, I might not be able to go. In Chuck's unit, you can only have 1 visitor a day from 2-6pm, and it has to be the same person. In Chandler's PICU, we can only have 2 visitors on the list for the entire duration of his stay, which includes me and Chuck, so I have been by myself which hasn't been as bad as I thought it would be! I have you lovely people to talk to via this blog. I actually feel kind of guilty because I have my face in the laptop, but really there's not much else for me to do other than give Chandler some love. They probably think I'm some social media addicted millennial, haha. I'm taking a pause for now, I'll update later today. Leah Smith, signing out. StarbucksIt's 12:14 and I am chill-laxin at the Starbucks while they change out Chandler's central line since they need a sterile environment. Their hope was to place his PICC line (the IV that will go home with him, which I will have to maintain so that he has an IV for all of his follow up appointments. This is so they don't have to re-stick him every time with a IV because they take so much blood during his check-ups.) They weren't able to get on the doctor's schedule so it will have to wait until tomorrow. Usually, they like to do this before they wake him, but since there's no availability he will have to wait so they are fixing the central line so we can wake him up and not prolong his recovery. They're going to give me a call when it's okay for me to come up, and then a little later, we will start waking the babe.
Being surrounded by college students here makes me miss college. J.M.U. DUUUUUUUKES. Okay, well that's about it for the update. Signing out. Again. It's been a long day. I am sitting here, stuffed from shoving a cold cheeseburger in my mouth and slurping down some half-melted vanilla ice cream (which was still delicious :-D). I am quietly watching Chandler with his breathing tube, laying silently, and so peacefully.
This morning, I woke up to little Chandler cries around 4:30 when the nurse was checking on him. He wet the bed so it was a whole sha-bang to change the sheets, but I did get some good Chandler snuggles out of it!! I had a hard time falling back asleep so I just rested my eyes and decided to listen to a meditation. I picked a short 5 minute Peloton meditation about courage, and it really helped ground me before the day started. The host had a great message about inhaling courage and exhaling anxiety, and it also made me reflect on a podcast I was listening to before I went to bed. It was a grounding guided meditation, but the host had a message before the meditation about not getting upset about things out of our control and how anxiety does not change the outcome so it's not worth it. It was so appropriate for the day, and I seriously think it really helped me. Because looking back, I am shocked at well I handled everything - totally unexpected. I knew the doctors were coming around 6:30 to pick up Chandler so I made sure to be ready when they arrived. I washed my face, did all the morning things, and was ready to rock the day! To prepare for this transplant, I used an affirmation for the past few days, which is now one of my favorites - "I show up with courage and confidence." I mean - how bad ass is that?? So simple, yet so powerful, it applies to so much in life and I wish I would have heard it earlier. Luckily, Chandler was still asleep when we rolled him out of his room. He woke up as we were going down the hall, but he was still pretty chill. Much to our surprise, we get to the prep room and DADDY IS THERE!!! We got to see Chuck!! Boom. Tears. I was not expecting to see him in the morning, and I am so glad we did. We were all in such great spirits, with tears in our eyes (because its still scary as F.) but we were really excited to be able to do this. I think we were freaking out Chandler because we were smothering him with "We love you! you're so tough! you're going to do great!" so we backed off and gave him some space to watch PJ Masks. I signed release forms, yaddah yaddah, and Chuck's surgeon walked in. He was so nice! Dr. Juan Francisco Guerra. He was so tickled by Chuck's Liver Buddy bear that he took a pic of the two of them to share with is wife. Chuck and I share hugs and kisses and off he goes.The last thing I said to him was "Good luck having your liver baby!" Then, it was Chandler and I for about 5 minutes. They gave him some medicine to help him relax and the tears disappear and here come the giggles!!! He thought everything was just sooooo funny. I was so happy to be able to leave him on that high note. I went up the elevator and met Donna (Chuck's mom). I got a text from her before we met up that said "Pretend you don't know Bud (Chuck's dad) when you see him!" With COVID, the hospital is very strict with visitors, however they were able to sneak him in! Funny story - When Donna came with Chuck in the morning, they asked "Are you the mother".... she said "Yes"... so she got to walk down to the prep room. When another doctor saw her, they said "You're not the mother! You have to go".... her response "I am the mother! HIS mother!" hahaha. She wasn't wrong! Unfortunately, my parents weren't allowed in the hospital at all. We were originally told we could have a certain number of visitors, but we guess the rules had changed since then. Since they couldn't go in, they found a Starbucks right next door in the student area so they weren't far away so we were able to meet up with them to relax during the surgery and just waited for phone call updates. We even got a special surprise visit from Mr. Dan Sekowski, a good family friend! So, that was nice. Time passes and we head back to the waiting room and finally get an update from Chuck's surgeon! Everything went really well, the liver fit perfectly, no complications, and smooth procedure. We waited a bit longer and then Chandler's surgeon, Dr. Thomas Fishbein, popped up to tell us how everything went. Smooth! YES! The only thing that happened was a little blood clot in his liver artery which they had to go back and clear. YAY! The TRANSPLANT WAS COMPLETE and my boys were okay! We went back to the Starbucks to give the good news to my parents, we all hugged and had a happy moment. Long story short, we tried to figure out who/how both Donna and I could see Chuck but Chandler and Chuck both got to their rooms at about the same time so we split up. Donna went to see Chuck, and I went to see Chandman. In my head, I imagined some serious tears, ugly wet boogers sliding down my face, and mumbling but it wasn't like that at all. I was so happy to see him and remained super calm! I had such a strange feeling of Peace when I saw him.... like I just knew everything was okay and he is good. (I am sitting here right now, still feeling really good.) When I got to the room, lots of doctors were checking on him, they were getting him all hooked up to the machines, taking X-rays and sonograms, and it was a little crazy. I am glad we chatted a few weeks prior with another family whose son got a liver transplant about 3 years ago. They warned me about all of the IVs, tubes, and scary things you see your child go through after transplant so I was very mentally prepared. I got the low down front he anesthesiologist on how everything went, what they're doing for him, and how the rest of the night will look. The only concern they had was that Chandler tested positive for a few viruses from a cold he had (we had no idea he had a cold) since it can cause mucus in his chest. His blood is also a little thicker than most children with liver disease so the put him on a special blood thinning medication as well. Other than that, everything was settling nicely, so I was able to go sneak up and see Chuck!! Donna had just left so I played ignorant in regards to the visitor code and broke the rules... ahhh... lol. He was laying peacefully in a dark room with his eye mask on. I didn't want to wake him so I wrote a cute note on his dry erase board... but then I thought, let me just check. So I tapped his shoulder and he was awake! We hung out for about an hour, chatting about the experience, giving him updates from the day, and feeding him cranberry juice and jello. He was feeling good, but a little groggy and in some pain. Hopefully he feels better tomorrow! We cant wait for him to be able to visit Chandler, they said he can come down as soon as he feels up to it. It will be a long night since his body is adjusting to his new liver and there are little moments of pain, but I just so happy that it's finally over with! My mom gave me a reallllly sweet tea towel that I opened up in my room when everything settled down. It has the most perfect saying on it. "Life is amazing. And then it's awful. And then it's amazing again. And in between the amazing & awful, it's ordinary & mundane & routine. Breathe in the amazing. Hold on through the awful. And relax and exhale during the ordinary. That's just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it's breathtakingly beautiful." Thank you to everyone who has reached out today asking about my boys! We can't say it enough, everyone means so much to us <3 ... And now I am off to put on my PJs ("into the night to save the day!" - sorry, I had to), eat some chocolate, put on some crappy Netflix and pass out.... until I have to wake up again at 12am for them to take another X-Ray of Chandler :) I was awaken by little Chandler cries at 4:30 this morning when he got his vitals taken and diaper changed by the nurse. I was surprised to see a long text message from Chuck that was sent at 4:37 am this morning. I told chuck to send me whatever he wanted me to share during his experience <3
Chandler, buddy! It’s the morning of our surgery and I wanted to post something on your blog. I’m not nervous. I’m not scared. I’m ready to do this with you. Your bravery inspires me each and everyday. The only thing that makes me sad is thinking about how scared you’re going to be before, during and after. It breaks my heart I won’t be able to be there with you, to hold you and tel you everything is going to be alright. So this is my way of hugging you now. We’re going to be Liver Buddies soon. I’m going to play that song over and over again soo many times. I love you so much little man! Leah, my ROCK! Thank you so much for being there right by our side. I know you wouldn’t have hesitated donating your liver to Chandler. You’ve been through two C-Sections, that’s all this is, my Liver C-Section. I love you to the moon and back. I can’t wait to see your beautiful face again soon. Lincoln, you doll. It amazes me how such a small young thing can make such a huge positive impact. We seriously couldn’t have done this without you. You’re such a perfect little Angel. I love you! To my family and friends…your love and support had been incredible. It’s in awe how much your thoughts and prayers have already helped us. Thanks for giving us strength and encouragement. We’re so very lucky to have so many powerful positive people supporting us. We love you! It's 11:07 pm and he FINALLLY went to sleep. I'm tired so I'm going to keep this short!
We didn't have to get to the hospital until 4pm, which was great so we could enjoy the day. It was bittersweet to officially make our way to the hospital. We loaded the car (and wow we have too much stuff even though its all very practical), snuggled little baby Lincoln and left her in my dad's care (good luck Snoopy! I am sure she's doing fine. You on the other hand, don't freak out when she cries). We got to the hospital and Chandler knew something was up. He did not want to go! He kept saying "I'm all better!" and it broke our hearts but we distracted him with a mini dance party in the admissions area. We checked in, headed up to the room, and so it began. Nurses are popping in, "Let's check your belly! let's get your vitals! Let's see how tall you are! How much do you weigh?"...He was a trooper up until the dreaded IV... And hated the additional nose swabs that tested for other viruses or colds that he could have lingering. They needed to get a urine sample, and instead of peeing in a cup (which worked before, but not this time), he pooped on the floor, haha <3 (Sorry Chandler, you'll be all grown up and embarrassed by this - maybe - but I had to say it because it was so cute, the nurses thought it was hilarious). After all the craziness, we enjoyed the rest of our evening together with crappy hospital food and tried to get his face out of his tablet and playing with some toys. We took some pictures and enjoyed some laughs, and texted back and forth with some concerned friends. Finally, Chuck had to leave at 9pm and we said goodbye with tears. We aren't sure if they will be able to see each other tomorrow morning. We hope so. I don't know if I'll be able to see him either but, I hope so. Chuck took Chandler's warrior bear, and Chandler has Chuck's Hero bear so they can snuggle with each other. I tried my best to calm Chandler down so he could rest. I was able to sneak the tablet away but we ended up turning on the TV so he was lay down, and we watched 10 minutes of Monsters Inc until he was bored with that, then 5 minutes of Frozen, and then turned on Bumblebee. Later, we FaceTimed with Chuck and he had a special surprise!! Chuck got a song written for Chandler and it is just TOO special!!!! The song is called, Liver Buddy. <3 Liver Buddy (click here to listen) Since the start of your life You’ve been a part of me And more that you’ve shown The best man I can be So I didn’t hesitate To donate 17.1 percent Of my liver to you Yeah, I’d do it all over again I gave you life But I hope you know That you gave me life too I’m so proud of the man And the son that you’ve become We’ll always have a bond No one could break, it’s too strong Now you’ll be more than a son for me You’ll be my liver buddy Resilient, tough, and kind The way you are amazes me You’re always tough and it just Inspires me Our souls have been connected For many lives And now we’ll be as one For this life I gave you life But I hope you know That you gave me life too I’m so proud of the man And the son that you’ve become We’ll always have a bond No one could break, it’s too strong Now you’ll be more than a son for me You’ll be my liver buddy I gave you life But I hope you know That you gave me life too I’m so proud of the man And the son that you’ve become We’ll always have a bond No one could break, it’s too strong Now you’ll be more than a son for me You’ll be my liver buddy
When we got home - BOOM - CHRISTMAS! Originally, I was a little bummed out that Chandler would miss all the Christmas festivities, but I had a great idea, "Let's do speed Christmas before we leave!" So, we did. I busted out a $5 Christmas tree from 5 Below, grabbed some dollar store decorations, hung a few simple decorations, and did all the Christmas festivities in 1 week. We made sugar cookies, decorated a gingerbread house, gazed at the neighborhood lights, colored some Christmas crafts, and watched Christmas movies (Really just Elf on repeat because I wanted to watch Elf on repeat). On Christmas Eve, the kiddos put on their Christmas PJs and put out cookies and milk for Santa. Did you know Santa likes ice in his milk? He's weird. ;) Christmas morning for us was on December 2nd. When Chandler woke up, he was greeted by the festive Christmas Dinosaur! It kind of reminded me of that Friends episode - the one with the Holiday Armadillo. Presents? Great - but he was much more concerned by what happened to the milk and cookies. With the royal Arendelle Castle Yule Log Fire on the TV (If you have a toddler, you know what I'm talking about), and the smell of espresso brewing (yes, we needed strong espresso that day), we proceeded to opening presents and had a lovely morning. Chandler got a super cool chalk board/dry erase easel, a Mr. potato head, some play kitchen food, PJ mask toy, spider man shirt, play sand, baby shark bath toys, and a few other little items. Miss Lincoln got a unicorn pull toy, some bath squirts, a crinkly book, and some sensory balls. She was so excited she couldn't stand it!!! (Just kidding, she's only 4 months, she had no idea what was going on.) I wanted to give Chandler and Chuck something special that they could share. With the help from Addison and Cameron and their cricut, I made them matching teddy bears to snuggle in the hospital, and shirts to wear at discharge. They both have "Liver Buddies for life! December 7, 2021" on the front. On the back, each say 17.1% since that's how much of Chuck's liver is being donated, with #chandmantough... and Chandler's says "Warrior" and Chuck's says "Hero" ... because that's what they are. I hope that these gifts help Chandler realize he's not alone in this process. Finally the day came for us to head out. It only took us about 4,593 hours to pack up our house to move for three months. With an almost 3-year old and a 4 month old - everything takes about 18x longer. We headed out around 3:30pm on December 4th and made it to my uncle's in Lovettesville, VA around 8:30pm. We only had to stop once for a booty change - which is a record for these long trips.
As I write this, Neena and Pops (Chuck's parents) are visiting to spread some Christmas cheer and give Chandler hugs. Later, Pop Pop Snoopy (my dad) is coming and then Mimi (my mom) will be here tomorrow night to watch Lincoln during this process. I am very thankful we could enjoy the Holiday season and for the family of support! "We won't be able to enroll your son in this trial - he needs to have a liver transplant." Crushing words for parents to hear. Deep in our hearts, we had a feeling it would eventually happen, but we hoped for a miracle and it wouldn't be necessary. In September 2021, Chandler was being assessed at Georgetown to see if he would be a good candidate for an FDA trial called Maralixabat. This medication is designed to treat Cholestatic Pruritus in children with Alagille syndrome - basically it helps relieve the severe itchiness associate with increased bile in the blood due to poor liver function. Chandler doesn't have Alagille syndrome, but he has the itchiness symptom. Their hope is that this medication can help eliminate bile and prolong the need for a transplant. We entered the hospital that day thinking, "This is it! This is what he hoped for!" However, we got the opposite news that this medication wouldn't help Chandler and a transplant is the only option.... and it needed to happen now.
Since then, we have been going through the motions. Many visits to Georgetown for Chandler to be assessed by his team of doctors. He was officially listed on UNOS (United Network for Organ Sharing) transplant list. During this time, Chuck was also being assessed by the living donor team to see if he would be a good match. The only way I can describe this process is that it is a roller coaster of emotions. Test after test, more tests to check the test results, and then more tests just to make sure. But finally, Chuck was approved and we celebrated! On December 7th, Chandler will get a new chance at a healthier life, and Chuck will officially become a super hero. It will be the hardest day of our lives, but also the most amazing. I have to give a shout out to the incredible doctors and scientists that have done the hard work to figure out how to make transplants possible. It blows my mind that we can take an organ and put it in someone else's body.... think about that!!! Chuck's liver will grow back, and the little portion they're placing in Chandler will grow with him. Fascinating. While it does sting to hear a transplant is needed, it has changed our perspective on life and we have heard countless stories of the happiest, healthiest children who are thriving post transplant! That gives us the hope and drive that this is a good thing. You think Chandler is a ball of energy now? Wait until his little body is absorbing all of the nutrients. Nothing will hold him back. |
AuthorFrom the eyes of the mom, me, Leah! The first hand experience watching my husband save our son's life by donating 17.1% of his liver. Casually releasing the stress of the day, here. ArchivesCategories |