Day 54: Staples Are Removed!

Duplicated from our CaringBridge site for permanent record here.

January 10, 2021, written by Mama

Quotations of the Day

Thomas remained quiet and withdrawn for long stretches . . . except when the cobwebs would visibly clear from his mind and he would start speaking in delightful, full sentences.

Thomas let me make this video greeting for his little brother, who saw it and replied, "I want to play with Pomas all day."

 

During morning Rounds, Thomas saw me standing to talk to doctors and told me, "Get a chair and sit down!" I thought he meant he wanted me to leave Rounds in order to sit next to his bed, but he clarified he just wanted me sitting down near the doctors.

Later he got very upset because he could see a full garbage can in our room. He was so distressed at the mess and he was not assuaged by hearing that our lovely cleaning woman would take away the trash soon. I ended up switching the two garbage bins so he could see only the still-empty one.

During Daddy's visit, the two of them made artwork and projected it on the ceiling. Daddy was drawing stars for Thomas until he kept expressing anger with grunts. Finally, he couldn't bear it any longer and said, "I want to do it!" He colored inside the center (green squiggles) as well as colored in a few stars.

Medical Updates

The surprising and fabulous news of the day is that Thomas's pleural effusions improved! Yesterday he was actually scheduled to receive a new left chest tube because the fluid was increasing. However, over the course of the day, the Medical Director of the PICU kept studying his daily X rays and even his CT scan and decided we could hold off on installing a chest tube and instead address it each day. Still, most folks on the team thought Thomas would need a left chest tube by Sunday. However, the Sunday morning X ray showed "much clearer angles" on the right, a normal cardiac silhouette, and only "some" effusion remaining on the left. "He is doing so great, we are so glad we held off on a chest tube yesterday!"

I take copious notes daily on Thomas's medical information, including all the nitty gritty numbers, but share only highlights here. I want to share that his labs are looking so good for many days in a row now. 

• Liver health: His liver labs are only slightly elevated. His direct bilirubin is about 10x normal (but not 70x normal like it was a couple of weeks ago!), and his total bilirubin is 3.5x normal (again, so much lower than it had been!). These numbers are improving so well.
• Kidney health: Creatinine levels have been perfect and stable for perhaps two weeks. He is creating and voiding his own urine: a normal healthy ratio should be 1.0 (1 mL per kg weight per hour) and his ratio was 2.6 in the last 24 hours, meaning he is voiding off all his fluid, even so much extra he receives because he is in the hospital. His kidneys are doing everything they need to do!
• Pancreas health: Lipase is somewhat elevated, and higher than yesterday, but not indicative of pancreatitis. It is probably reflecting the pocket of likely infected fluid behind the pancreas.
• Blood health: Hemoglobin is only slightly low and very stable.  Platelets are normal. Coags are good.
• Infection markers: White blood count is only slightly elevated, but nearly normal and trending downward. C-Reactive Protein (shows inflammation) is within normal range now and down-trending. All the cultures from Thomas's various lines keep showing up negative to date, so the only suspected infection is the pocket of fluid behind his pancreas.

Given how near death Thomas has been and how seriously damaged were his internal organs, this feels like a near miracle.

Thomas's WATTs scores are still 5-6 (instead of below 3), marked particularly right now by retching. Because of his reconstruction, he is not successfully vomiting out what needs to come out, so we are having to suction often, including Mama doing it when I'm alone with him. I don't even leave this boy for me to use the restroom unless a nurse commits to staying inside the room (not the hallway), lest he vomit and choke. Thomas continues having low grade fevers for a week now, but as we continually rule out infection, the team thinks it is due to withdrawals.

The hugely symbolic news of the day is that today Thomas had all 19 of his staples removed from his abdominal incision! Had everything gone well, he probably would have had his sutures (which they would have been) removed around November 28. Instead, Thomas experienced not one but ten surgeries . . . and only now have we passed 14 days and even more beyond his last surgery. No more surgical emergencies have occurred, his incision is healing beautifully, and it was time to be done.

Surgical Staple Remover, also known as a "Silver Band-Aid Holder"

The Child Life therapist came bearing a stuffed puppy dog with "silver Band-aids" (staples) in his stomach. She let Thomas touch them and she described the silver Band-aids as smooth, silky, and cold. (Note the lack of words like sharp or hard.) She then showed the tool that is a "silver Band-aid holder" which has "arms" that gently close on the silver Band-aid and "hold" (not remove) them, turning them into little M shapes. She removed some of the staples and then I learned how to do it: even Mama can do it, it is so easy! Thomas was entirely calm during the event, so much so that he drifted off for another nap in the middle of it all.

Speech Therapy worked with Thomas again today and took the time to tell me about the future. Right now, he may sip water off a sponge, chew a few ice chips, and receive some drips from a straw pipette. He will need a swallow study conducted before he can safely put anything interesting in his mouth. In order to even do the swallow study, he will have to work greatly with Physical Therapy in order to be much stronger and more able to sit in a chair, right now starting even with sitting in the reclined hospital bed all the way up at 45 degrees. For the study, he will be sitting in a special chair (with some support) while actively swallowing while being filmed. Thomas needs to grow so much stronger before he can even undergo this study. After the study, he might be able to try something like a puree. I'm starting to understand why it is conceivable that Thomas might be discharged home still receiving the great majority of his nutrition through his J tube . . . not because his new reconstruction does not work but because he will need so many weeks and months of therapy to learn how to eat orally again.

The team has an exciting goal for Thomas on Monday!

Taking a Nature Walk

I left the hospital from 2:00 to 7:00 in order to take our other children on a nature walk. It was intended to be an outright hike at the Whitewater Center, but we arrived to find the trails through the woods closed due to mud. Therefore, we walked around the waterway on a wide path for perhaps a mile and a half. We were able to give very wide berth to stay far away from any other folks there, and never go inside a building.

I want to praise our 14-year-old son who is an accomplished ice skater (and ice hockey player) for handling a major disappointment today with great grace. We already told him we are not signing him up for his ice hockey team during the winter quarter because we are avoiding group settings (germ exposure) while Thomas is still in PICU. John lives for ice skating, so this is very painful. Then, knowing we were going to the Whitewater Center today, John desperately wanted to go ice skating on their outdoor rink, but there were about 100 people skating, so we firmly said no. He remained gracious. To top it off, on our drive home, John found out that his very best guy friends were ice skating at the Whitewater Center while we were there. He hasn't seen any friends in a couple of months. It was such a disappointment that I wanted to cry, but he handled it like a champ. This period of tragedy for our family is so hard every day, but I do see glimmers and glimpses of the positive character formation that can be emerging from it.

Delirium

When I got back to the hospital, delirium raised its ugly head again. The stretches when Thomas knows me are getting longer and longer, but then I am startled anew when he doesn't know me. I showed him the above picture and he did not know who I was, although he could name all his siblings. I then asked him if he knew who I am (live and in person in front of him), to which he shook his head no and looked distressed. I told him I was Mama, his Mama who takes care of him, and then I'd ask who I was and he still would not know. We went through this a few rounds before I stopped asking and prayed that God would allow me to be content with just holding my boy's hand while he fell asleep.