Day +34 and +35: Ringing the Bell & Going Home!

We got to go home today! Woohoo! *Happy dance!*Happy dance!*

Whew! What a doozie of a day. It has been constant craziness since this morning, and I, for one, am exhausted- physically, mentally, and spiritually.

All this morning/early afternoon was filled with meetings with different specialists to set everything up and ready for Kal's discharge. We met with his BMT docs and NP, physical therapy, music therapy, home health coordinator, pharmacy coordinator, pharmacists, and dietician, just to name a few. In between those meetings were moments of pulling everything together and packing up, all while also receiving teaching for discharge.

Almost ready to go! "Look everyone, I'm finally wearing "real" clothes again! Don't I look cute?!"

After we tied up all the loose strings and Kal had been administered a platelet transfusion, we were ready for discharge! The sweet nurses decided to make a last minute sign for Kal. Bless their hearts, though, somewhere in-between our unit and downstairs where they were making the sign, they thought his name was spelled Kael. Hahaha. After learning their mistake, they apologized and made an attempt to wipe out the "e" from the wet paint. It just makes it for a better story down the road! (;

Very lovely painting by the nurses and staff... hehehe.

Then, it was the moment we have been yearning for. The nurses and staff sang Kal well wishes and then- Kal got to ring the bell- signifying the end of this leg of the journey!

The famous going home bell!

I love the poem on the plaque of the bell, especially while thinking of Kal: "Now I am on my way!"

We also let Kayelee ring the bell afterward, because she has also been through a lot of change during this process and deserves to celebrate with us.

We made it- as a family team!

After that, we headed home! It was such a surreal feeling. I knew the route going home very well, but I had to keep reminding myself, "We're all going home. This is it. This is really happening. We're actually going home!" At the same time, though, I actually started feeling carsick because I hadn't ridden in a car in about 6 weeks. Kal was exhausted from the day, so he fell asleep en route. Kayelee was so excited, she was jabbering (and occasionally singing) all the way home.

Wearing a mask for safety (:

This chubby kid can barely fit in his infant carrier anymore!

As we pulled up to our house, we were greeted warmly with cute "Welcome Home" signs stuck on the sides of our house, ribbons tied on the garage door and our bushes, and a balloon tied on by the door. It was the sweetest gift ever, given from the wonderful people in our ward from church. After such a long day so far, that kind, thoughtful surprise put a big smile on all our weary faces.

What a fun surprise to come home to!

 

Later that night, we got our delivery for the medical supplies and the home health nurse came to give us teaching on how to set everything up. Yeah- oh. my. - mind blown! There is so much to learn, it's ridiculous! I don't know how so many parents do this, or even have more and more complicated medical equipment than we have now. He has 2 IV nutrition bags (TPN and lipids) that we must prepare (for the TPN, think taking vitamin injections out of two vials and injecting them into the base liquid). Then we set both of them up to their individual pumps, then set them up and attach them with a Y tubing which then attaches to Kal's broviac (central) line. Also, we need to prepare the formula, fill up his feed bag, set up the pump, and attach the tubing to Kal's feeding tube. On top of that, Kal has 2 IV anti-fungal medicines that need to be attached to him from one more pump and a medicine bag.

Holding hands- Ate and baby brother reunited once again!

Needless to say, Jonald and I were mentally drained after that... more like mentally run over by a truck and then pushed into a river and drowning. You know, people keep joking how we could go into nursing after this and would know most of the stuff already. Yeahhhhh, I don't think so. We haven't even touched the tip of the iceberg there. If we are flabbergasted by these things we've been taught and put in charge of, we have no chance at nursing school. Nurses have even more of all my respect!

Since his IV anti-fungal dose doesn't finish until around 12 a.m., I decided it best to stay up until then rather than going to sleep at 11 p.m. and risk not waking up on time to cap off his tubing and his central line. Right before I got up, though, I heard Kal getting upset. He had thrown up all over himself. Poor guy! :( It was so much, I had to change his clothes, diaper, and blanket. Then he was wide awake until about past 1 a.m.

Jonald was sweet enough to administer Kal's medicine at 6 a.m. when he was up so I could sleep in a little.

At 8 a.m., that's when the party started. Kal woke himself up by throwing up all over himself, again. He was very upset most of the morning. He didn't want to be put down on the ground at all. Otherwise, he'd scream bloody murder. I needed to set up his 2 IV anti-virals, change out his formula NG feeds, give him 6 medicines, then unhook his IV nutrition, then again give him more medicine in his NG tube. I didn't even sit down to eat until past noon. I was so frustrated I wanted to cry... Okay, okay. I did cry. I thought, "How will I ever be able to handle this all? It's just so much. I am completely overwhelmed. I just want to go back [to the hospital]. " What used to be 4 people's jobs at the hospital was all my responsibilty now, at least during the day while Jonald was gone. Luckily, my mom was still here today, so she helped take care of Kayelee, made breakfast, and went out grocery shopping with Kayelee so I could take a nap. That was the biggest help of all!

After having a nap, some of my sanity returned, despite being woken up by Kal screaming and throwing up again. Kal threw up 2 more times today. Luckily, he still has no fevers, but his temp did get up to 99.9 once, so we'll keep an eye on it.

Jonald was so sweet and watched the kids this evening so I could treat my mom to a "thank you" dinner for helping us so much during this process so far. It was great for me to get out of the house, especially after the kind of day we had today. I sure will miss my mom not being around to help. She's going home tomorrow and my father-in-law will be taking her spot here instead. Also, it's Kal's first in-clinic visit tomorrow. Here's on to taking the next leap on our BMT journey!