Luckily, again, bc of that port G doesnt know the difference. It all just gets sent into that IV w no awareness it is even happening. The nurses even had their own tricks up their sleeves on days he was crabby. Days he figured out that when someone walked in w something in their hands they would be near him, disturbing him oneway or another. So, they just moved his IV tubes ("tubies") over to the side of his hip and covered up their actions w a blanket. Out of sight out of mind.
We ordered up some breakfast and then some lunch and waited for our assignments and discharge papers. A neverending list of DO's and DONT's for our return home. We would be back on Tuesday for more treatment. But as we became used to this form of "treatment" what did outside treatment look like, feel like, mean for our schedule? Everyone around us made it sound so simple. You come into clinic, and depending on the plan of treatment for the day you are here a couple of hours or all day. But be prepared that if labs are not to our liking you may be here overnite. And def expect to be here overnite if he ever has a fever bc we dont take that lightly and he needs to get antibiotics and be monitored overnite. So many what ifs, more than what I was used to in life that's for sure.
Once the transfusion was over we were ready to walk out of there.
They removed the bandages off of his port. This removal took us a bit by surprise. Originally it was described to us that the access point (part that looks like a button) would be about the size of a quarter and about that thick under his skin. This one def protruded much further than the depth of a quarter. But we didnt take into consideration in our visualization how tiny G's chest is. Had it been the chest of preschooler or adult it would not stick out so. But overall it is better than some tube hanging outside of his skin/chest near his collarbone.
The snake like S you see above his nipples is bruising but the tube leading up to his jugular artery lies right there. The red dot you see on the button/circle part is where the needle gets inserted each time he needs fluids or meds. That disc/button is made of metal but the center where you see the red dot (a scab over his puncture hole) is a soft rubbery material with direct access to the tube behind it. It can be punctured for years to come before it wears down. The bluish-black linear mark below the button is the incision scar on his skin that they needed to make to slide the metal disk/button under his skin. The bruising has gone down by now but is taking awhile bc he is prone to bruising and clotting due to his platelet levels.
I sent daddy home bc I realized I had no outfit for him to go home in! Remember, I had to remove that "arrival" outfit from our bag bc I just couldnt look at it anymore?
Once we started packing up our room (which took so long after living there a week) I started feeling anxious again. It started in my stomach and crept to my throat and before I knew it I was crying. It was an overwhelming feeling. A flooding feeling. We were leaving the care of so many people to try and figure this out on our own for a couple of days. I was happy to leave, be home again, with all 5 of us, but at the same time terrified. What if we couldnt do this? What if we made him worst in a matter of days? The nurse walked in on me and calmed me down. She went over phone numbers again. She reminded me no question was stupid and to call with anything that was on our minds. They were used to it. Okay, so I was officially given permission to be that mom that called constantly and everyone would know by name, right? Okay, as long as she said so.
This whole week in the hospital G went from his usual self to days of quiet and small appetites and then goofy self again. He consistently sprinkled us with his humor and quirks. He ALWAYS used his manners, even at his lowest energy day or when being asked to take part in something he hated. Some stranger would come in to examine him, G would cry and then as they left he would mumble thru tears, "Bye OR see you later OR thank you". You see how he won them over?!
He never once mentioned home. I suppose as long as family faces were a constant what was there to worry about in that baby mind of his. Often he would page thru pics of us on daddy's Ipad. Somehow he navigated that thing better than I and found photo albums of all sorts. His fav pic was one of T blowing the camera a kiss. G would say, "Tis Tis (Triston) give kiss kiss" and laugh. It was adorable. Then we would lean over and kiss us.
So, when we pulled out his clothes and shoes we were taken back by the excitement his body immediately expressed. It was unbelievable. He knew something was up. It was like something clicked inside him. An I'm Outta Here attitude. I am done wearin' a green gown! We hadnt even mentioned home, yet. We just lied his clothes out on the couch. He asked to get out of bed and walked over to them. He started to put them on. No one could knock the enormous smile off my face at that moment. He told me "Mommy, I stuck"and needed "help". We asked if he wanted go home and see T and C. A ginormous smile came across those tiny lips and he said YES! Now I started to get teary-eyed. He really didnt see what this all meant to us. Or maybe he did. Once he was dressed there was no stopping him. He couldnt wait to get out into the halls. He noticed I didnt have my shoes on. He grabbed them, brought them to me and said, "Here, Mommy. Shoes on, please." He was actually rushing us to get out of there!
Then as Charito took a couple of trips down to the van G kept telling me "Come on, Mommy. Go outside now". I told him we were waiting for daddy to walk with us. When Charito returned we were ready. We stepped out into the hallway. Nurses began to wave and smile their bye byes to him. He just smiled back and said byes back. It was like he was some celebrity parading down the hall. So many faces we became accustomed to taking their time to say bye and " see you next week." It was unforgettable.
G was just glowing with attention. Part of me is convinced he was just so damn proud of us-mommy n daddy. All to himself. Headed to a place he wanted to be. I will never forget that image of us. He insisted on holding both our hands. There we were-Daddy on his left, me on his right and I was holding the hand of the huge Elmo balloon on my right. The four of us toting down the hall. I was crying softly to myself all the way down the hall. Happy tears. Proud mommy tears that we were WALKING out of here. Several days ago I didnt know how and when we would be leaving. I heard nurses whispering to each other-look at him walk right out of here. Did most kids get carried or wheel-chaired out of here due to lethargy? It made me feel grateful. Grateful for Grayson's spirit and smile and spunk. That day I believed (and continue to believe) it is those reasons will keep he and daddy and I in check. Always giving us that walk down the hall to HOME each and every time we visit that place again.
Didn't daddy pick the best going home shirt?!
I took that pic above as we waited for daddy to pull the van up. It was a little tricky figuring out his car seat buckles with his port occupying the space between his nipples where the clips are supposed to rest. I just placed them below his port and hoped for the best. I didnt want him to be uncomfy. I knew it was still sensitive.
That drive home was so surreal. Just over a week ago Charito and I were taking the same drive w one son in the car just like this gorgeous Saturday. The day we brought Caden home. Now we had one son w us again and it was our G-man. It is always wierd to me when I dont have all my kids in one place. I will NEVER get used to that.
We pulled up to the house around 7 pm (it took us such a long time to get home w traffic and stopping by the pharmacy to get all his meds) and G immediately noticed Bryley in the window. He shouted her name. He was in such a good mood. Like we hadnt been thru the rollercoaster at all. He gingerly walked up the stairs and into the house. He lit up when he saw Triston. They gravitated to the trains just as they always had. Gramma and Grandpa were there bc they had brought T n C back to the city. They stayed a bit but then gave us our space.
We ordered pizza and made it a family movie nite. Everyone ate well and we eventually headed off to bed by midnite after C's last feeding. Everyone slept in the "big bed" (our bed) that nite (and have most nites since...I dont feel comfy leaving G out of my sight just yet).
I quietly cried myself to sleep that nite. It was mixed emotions. Sheer exhaustion and god knows what else. I just knew I was home and had 2 days of us. Just us before we went back to that place. I dreaded the word Tuesday for the next 48 hours.
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