TODAY IS CHANDLER'S BIRTHDAY!!!! We now have a 3 year old :) Little Dude is getting SPOILED this year <3 Last night, we blew up balloons to put them in his room while he slept for an exciting morning, hung some dinosaur and Spiderman birthday decorations, and got an ice cream cake for tonight. We are keeping it simple, but he has lots of presents to open later from all the generous people.
In all honesty - it has been really nice to take a break and not blog for a bit. Life outside of the hospital is much busier since we have Lincoln to take care of too, and managing the timing of his medicines. This kid is going to make bank when he gets older because he is a master negotiator - we were up to 2 cookies to bribe him to take his meds, and this morning, it was 4 m&ms and 1 sour patch kid. I need to think of other bribes that aren't food - the Child Life Specialist made us a PJ Masks sticker chart, so I need to give that a try. We have a lot of help from my parents, and aunt and uncle so its easier to manage everything, but I know its only going to get crazier once its just us but I am looking forward to the "us" time! I am going to recap our last day before I forget! It's weird looking back on the entire experience, it's like a huge blur, so I am glad I documented along the way. It was the slowest fastest time.
Day 14, 12.20.21 - See ya later, alligator!
The morning was loonnnngggg in anticipation for our big break out! We had to wait to get the medications all organized, pull his last IV and change his PICC dressing. I am really hoping they can change the PICC dressing at his clinical appointments because it was extremely stressful, it took Chuck and a nurse to hold him down while I changed it. I swear, something happens to your brain as a mom when you have to do stuff like that and it's just GO, commit and ignore all signs of distress!! After the torture, we patiently waited for the discharge instructions and boxes of medication. YAY! It was about 4pm and we were ready to go.
The two boys were decked out in the liver buddies T-shirts and bears that Addison and Cameron made, ready to show off to the world that they both kicked some major ass. Chuck and I were playing catch in the tiny space to kill time, and when we had to do Chandlers PICC dressing change, Chuck's incision started to bleed a bit since he was moving around a lot (hence the red stuff on his shirt in the photos). Don't worry, he's okay. The nurses were so sweet, they made Chandler a super hero cape that they all signed with sweet messages! The Child Life Specialist even brought wrapped Christmas presents for Chandler AND Lincoln! When it was time to go, we piled up all our crap into 2 wagons and a stroller. I got halfway down the hall before I realized we forgot the box of medicines. That would have SUCKED if I didn't remember. When we left the room, the nurses were so sweet and all lined up down the hallway to cheer on Chandler as he was scooted down the hall. Holding back tears, we cheered, waved goodbye and said many thanks along the way!
When we got downstairs, Chandler was so happy to be out. My dad (Snoopy, as Chandler calls him) picked us up and we went on our way. Chandler saw all the Christmas lights along River Road in Potomac MD, which is full of OBNOXIOUS mansions, and said the cutest things on the way to my aunt and uncle's. When we arrived, he was greeted by Mimi, Rachel, Kristen, and Lincoln all safe with face masks (yes, they even put a facemarks on her, she looked so cute, haha). It's weird wearing face masks in the house, but it's necessary for right now. Chandler finally got to snuggle with Lincoln, who he said he missed so many times at the hospital. It is so adorable to see their cute little bond, even though she's still so little. He was holding her hands and rubbing her heard, it was so genuine and lovely. We enjoyed the evening all together and opened some gifts with appreciation from friends that were sent to my uncle's house. Thank you to everyone!! At the end of the night, I had to give him his medicines, shot, and flush his PICC line for the first time. When I went to push the air bubble out of the saline, it was stuck, so it slipped and I squirted saline solution all over the ceiling, ha! Guess you had to be there, but it eased the tension for Chandler. He's getting a little better being in his own environment and having me do all the torturous things, but I still feel bad.
We are happy to be out!!! It taken some time to adjust to life on the outside - I forget how to do this everyday tasks like drive and do laundry... so much has changed in 2 weeks.... ha, jk. Now we gear up to relax for the Holiday season. On Christmas Eve, we will be headed to Chuck's parents for the remainder of our stay in Maryland!
And I've just been thinking about what families go through who have an organ from a deceased donor or anonymous donor - to have a strangers organ in your body, or knowing it is in your child's body - has to be so bizarre. We are lucky and so grateful that Chuck was a match, I think it has made things a little easier, even though I had both of my loves go through this.
Other than that, things are pretty boring which is great! That just means everything is going well.
Thanks to my mom, I just ate a million tacos and I am currently sipping' on marg numero dos at my uncle's, so I'm going to keep it short. Chuck offered to stay 2 nights so I could have a decent break. Also, Chuck wanted to write something so I am going to let him take it away tonight.
But First - we had a Dino-Mite day!! Chuck arrived in his blow up T-Rex outfit because he is the best dad ever. Chandler's laughs echoed through the halls, and it was a breath of fresh air in the PICU. Biggest smiles from the nurses, and other patients I have seen this entire time. Video, below! Viewer discretion, you will see his adorable little belly scar.
Quick updates - looks like Chand Man will be busting out of this joint on Monday. Surgeon said he's ready to be discharged but the doctors don't like discharging transplant patients over the weekend just incase there's a medical emergency, they want the staff available over the week. So, he has to stay until Monday. We also have to study all the medications and practice administering for 24 hours before they will let us go. Which means the 11 or so oral medications, shot in his leg, flushing the PICC line and changing his PICC line dressing. We are in the home stretch!
A letter from dad.
What’s up Liver Buddy? My first post “post” transplant. So I have a lot to update you on. The day of the transplant I was so excited to see you and mommy right before. During our short time together that morning, you and I made eyes and I told you everything was going to be alright. You just kept looking straight into my eyes as if you understood and agreed we were going to be okay.
As soon as I awoke from surgery I asked the doctors how you were doing. These would have been the first words out of my mouth but when the doctors woke me up they said “You did such a good job”, I couldn’t help myself and replied back saying “I worked really hard, Thanks!” You weren't finished with your surgery yet so I didn’t have an update on you for a few hours. But by the time I was admitted into my ICU room, I was told you were admitted before me. You did so well with your surgery that you beat me to the ICU. The doctors said my liver fit like a glove inside of you. You and I were pretty sleepy for a couple days after our surgeries, so we just rested in bed and let the doctors and nurses take care of us.
I was finally able to come up to your room and visit you on Day 3. You and I were pretty sore still so we didn’t hang out together for long, but just seeing your cute little face made my day. On Day 4 when I came back to visit, you were looking a little more like yourself. They were doing an ultrasound of your belly trying to find a tiny vein and making sure it wasn’t clogged. I went back to my room before I found out that they weren't able to find the vein and that you needed to another test called a CT Scan. When I found out that you would need to go back for more surgery if they couldn’t find the vein I got very worried. I was in the process of finally leaving the ICU unit and going to a step down unit. This is where people go to get better before they go home. I asked my nurse to push me in a wheelchair to your room. By the time I got there, you were just getting back. Before I could even get into your room a nurse told me that they found the veins and it looks great. I immediately started crying because I was so happy that you were okay and didn’t need another surgery. I stormed into the room (my nurse wheeled me in) and gave you and mommy the biggest hugs.
I was lucky enough to go “home” the next day. “Home” right now is at your Uncle Mike's and Aunt Kristen’s house. Leaving you and mommy at the hospital was very hard but I needed to rest and recover. As you know, it’s hard to get good sleep in the hospital. Thankfully, your Grandfather “Snoopy” was willing to drive me to come visit you and mommy a few days later. The car rides with Snoopy have been nice and it’s has been such a huge help having a ride to a from the hospital, over an hour drive each way. No other visitors were allowed in to visit you or else your Snoopy (and the rest of your family) would have loved to visit you too.
I was planning on resting at Uncle Mike's on Day 8 but you FaceTimed me from moms phone and asked me to come visit you. How do I say no to that? I could sense that your mom needed a break. She had been through and doing so much to help you for over a week. I needed to muster up the strength to be there with you because I was still in a lot of pain and discomfort (A.K.A. I haven’t pooped yet). But once I got to the room and saw your adorable smiling face, I immediately knew I could do it. You were such a good boy for me. You were still upset when the nurses came into the room and you weren’t interested in taking your oral medications. But eventually I was able to convince (bribe) you to take them. You were so silly too. Every time you took a medicine, you’d smile at me, you were so proud of yourself. Oh! and that reminds me, you wanted the pound cake that they gave me for dinner. You took the entire pound cake and when attempting to take a big bite it broke in half. I laughed so hard it hurt my belly. You got a big kick out of me laughing so hard, so you started laughing hard. This went on for about 5 minutes. Every time you took another bite you laughed hysterically. I swear, I thought our stitches were going to burst from all the laughing. That night you had such bad stomach pains. Strangely, I could relate to those pains cause I was feeling the same pain. The pain killers had slowed down your intestines so you were constipated, which is very uncomfortable. They gave you something to help but it took almost 2 hours to work. Once you felt better you went right to sleep. Every 12 hours the nurse comes into give you your oral medication. They had to wake you up and it took 2 nurses holding you down to get all the oral medication into your mouth. I really hope you aren’t permanently traumatized from this experience. It’s so hard to hear you scream like that and not throw the nurses into the hallway and tell them to leave you alone. But It was for your own good. You were just too young to understand it at the time. Mom came back to the hospital the next morning in enough time for me to make my follow up appointment with my doctors. You were sleeping when I left, so when you woke and didn’t see me here you got mad and asked Mommy where I was. When I got back to your room, you asked me if I was all better now. It was so cute how concerned you were for me. The nurse mentioned that you were in such a good mood and you told her it was because I was there. I have to tell you that made me so happy to hear you say that. It’s like my heart grew bigger.
Mom and switched again and daddy went “home” to get some rest. Another day went by and I’m back hanging with my buddy. Mommy went home to be with Lincoln and the family. She’ll be back in 2 days. That’s when we’ll be taught how to take care of you when you get home. We’ll get a 24 “dry run” the day before we get to take you home. They do it this way so that if we have any questions or challenges they are here to help. Plus, it gives us parents the confidence to know that when our handsome little feller gets home that we can take good care of him.
We can’t wait until we can all be together again. But we’re also very aware that we have a long ways to go. You’re being such a tough boy. Mommy and Daddy have been so so proud of you.
When he woke up, he was very excited to go in the wagon and take a ride. That fantasy was shortly crushed by the realization that something else was about to happen. We got to a very chilly room with a big machine and it kind of freaked him out. Everything freaks him out now, it's just how it goes. The child life specialist is actually a cousin to someone I went to school with, from like Elementary to High School. Like you care. Anyway, I don't know why it's so sad seeing your child go under anesthesia. I was able to hold him as he dozed off, but it was nice to see him in Peace, even if that means all the drugs. I gave him a kiss and off to Starbucks I went for my huge ass highly caffeinated beverage. I ate my sandwich, texted my BFFs about Nick Jonas, and then hunted for some naaaacks for Chandler because he really hates the food here. He needs to show them he can eat so he can get the hell out of here!!!
Went upstairs and shortly after Chandler arrived all drugged up and sleepy. We got him to wake up and the morning was kind of rough. Day 8 at the hospital, AKA Day 8 of torture. They forgot to put in the extra IV he needs, so they had to do that. He pooped everywhere, has to be forced to take his medicines, and it's just chaos everyday, but in-between we do have some cute moments.
I was complaining to Chuck, so my sweetie-pie husband decided to come and visit - he was going to stay home and rest more but felt bad, so he came to help out. And help he sure was! We hung out for a bit, went for a walk around the unit again, waved to a bunch of other kids hanging out in their hospital rooms, and played pretend with the empty fish tanks. We got back to the room and Chandler did another ornament craft. He won't eat, or drink... I just dont think he feels well. He has no control so its really hard trying to get him to do the smallest of things. Thank God for cartoon themed PJs or else he would be naked all day.
And since my husband is the amazing person he is, he offered to stay the night so I could go get some rest, visit my family, see my baby girl, and drink. some. damn. wine. So I am writing this now, about to surprise my chauffeur dad cause he doesn't know that Chuck and I are trading places.
On that note. I am out. PEACE.
Today has been fun. Yesterday was good, today was fun. We are at a stable time where we are just watching Chandler's levels and adjusting medications accordingly. Staying hydrated with extra fluids, keeping a close eye on his blood pressure since it's been a bit high, torturing him with removing band aids and IVs, taking blood samples for labs, ultrasounds to monitor his little vein flows, and continuing with his respiratory therapies. Every time someone walks in, he freaks out because he thinks he's about to be tortured, because he probably is.... but in between the nurse and doctor visits, and when we are up and not down, we are finally having actual fun when we can. He still has his moments of discomfort, but I am happy he's enjoying his time when he can.
On top of the fun, Chandler got to eat REAL food! He can have whatever he wants! So for breakfast, he had his go to classic - pancakes. He also had a few bites of egg. Our nurse went to the Child Life storage and brought a bunch of goodies! Chandler was very excited about the booster seat he got to sit and enjoy breakfast in. I think he finally felt a bit normal, the smile on his face was priceless! We have seen the more smiles today than everyday here combined. We sat on a big play mat and built castles, birthday cakes, and jail cells for his evil "Romeo" PJ Masks Figurine. We colors Paw Patrol coloring books with some markers. He wasn't totally interested in coloring ornaments but maybe we will get to that later. He's finally enjoying some independence and his personality is starting to shine - the entire staff is certainly enjoying his cuteness. Duh, of course they are.
I want to acknowledge the kind people who have donated items to this unit not only for the children, but for the parents. I was offered a Starbucks gift card (they rapidly grabbed it as soon as I mentioned my obsession with coffee - more like addiction but everyone here can relate), there was Panera for for parents for lunch the other day, and there's a plentiful amount of K-Cups so I'm not stuck drinking the pretty terrible hospital coffee that tastes like cardboard since it sits in the little cup for so long before it gets to you. And for Chandler, he's been given a cute little comfort Elmo, some toys, and the Girl Scouts put together these cute little activity kits for the kiddos in partnership with an organization called The Jared Box Project. Being here has really given me a new perspective - I want to start donating blood because it's used more often than I realized, and I'd like to get more involved because I am experiencing how helpful all these little comforts are. And again, thank you to all my friends and family that have helped make this stay more tolerable.
I feel AWFUL!!!!! We were snuggling on the recliner, and when we got up, his drain bag got stuck in the foot rest and it pulled on it and he was in so much pain. We were finally on the upswing where we could really decrease the frequency of the morphine, but he really feels it when it wears off. The poor night nurse is dealing with a screaming toddler, but she's been so patient and really patched up the drain nicely since it started to leak a little more - gross, I know.
What gives me the most anxiety (and him too!!!) is everything that sticks to him! The EKG stickers, the surgical tape, the IV tape, allll the sticky things. And he's traumatized from these damn sticky things, you cant even touch him. He gets so upset anytime anyone comes in the room. Poor kid, I just can't wait for this all to be overrrrrrrrrrrrr.
We were up late last night because of all the craziness and also the typical maintenance with him and all his medications, and cleaning the crib, and diapers, and everything, so it took a little longer. On top of that, when he would sleep, his heart rate was getting sooo slow. They knew he was in a deep sleep, but they did an EKG just to check things, and everything was fine. But that just added to the anxiety when I was already so drained from earlier. They also put him on blood pressure medicine because it's reading a little high. Alrighty, that's all for now.
Goodbye, Chuck! Hello, Lincoln!
Before Chuck's discharge, he came down and hung out with us for a bit. He got to see Chandler walk around and snuggle on the couch. Around 12:30pm, my parents arrived so we put Chandler down for a nap, I gave Chuckles kisses, and went on my way. He went back to his room to sign the discharge papers and wait for the go ahead to... go ahead and go.
I met my parents downstairs and we went to the campus Chick-fil-a. iIt was weird walking through the halls of the hospital on a Saturday, there was no one around!! I got to see Lincoln, and give her squeezes, change her diaper, feed her a bottle, and do all the mom things <3 We enjoyed our Chick-fil-a (duh) and chatted, it was SUCH a nice mental break. I like to think we are halfway through this hospital stay so not too much longer to go, I hope.
When I got back to the room, Chandler was standing in his crib staring at the food tray!! "Im hungry!!!" Omg! okay! let's eat! yes! He scarfed down half of a jello cup and took a few (cringing) bites of his ice pop. My teeth would be shocked if I did that, eeeek, just typing about it makes my teeth feel weird. I then gave him a few little gifts that Addison and Cameron (my nieces) made him! They made little bags for him to open one a day :) I gave him two today since there are 11 bags and hopefully we are not here long enough to only do one a day! He was so excited! Chandler is coming back, yayyyy!! It's soooooo good to see him back to life with a smile on his face, playing pretend, and chatting up a storm.
I am happy that this is a short and sweet blog post, today :)