24 crazy hospital nights! Somebody bust us out of here!

 

I feel like I’ve been on a roller coaster of happy and sad today. Happiness came in the form of our dear friend and Tricia’s sister, Sarah, getting a nursing job at Mayo. Soooo proud of you Sar! It also came in the form of my beautiful cousin, Shannon, getting a full ride to USD. She is about to embark on the greatest journey of her young life. Happiness came in my Ronan and his beautiful spirits and smiles. Not even being cooped up in a hospital for over 3 weeks now can keep him down. Sadness came in many forms as well. Hearing about somebody from my home town having his sister murdered last night. I don’t know them well, but my heart still aches for them. Sadness is undeniable in the hospital. I gave my biggest smile to a teenaged girl who was walking the halls with her bald head and her newly amputated leg. She told me how cute Ronan was as she passed us on her crutches. I told her she was beautiful. Sadness also came in seeing my friend, Ellen today and the look on her face after her visit to Sloan this morning. Phoebe is still in a lot of pain and is going to have to have surgery on her leg again this Thursday. I’m sick to my stomach for them. It’s nothing too major, but my heart breaks for Phoebe who just wants to be a normal girl. My heart breaks for Ellen as a mama because I know what it’s like to see your child in pain and to feel so helpless. I am praying that this surgery will help to lessen Phoebe’s pain and she can just get on living her life already. She deserves a break.

I spent the entire day playing with Ronan. He has a lot of energy and this leaves me thinking that somebody is messing with us. How can his ANC still possibly be 0?? Ronan ran circles around me the entire day and was so happy. He is not the picture of a little boy who has 0 immunity. It’s beyond frustrating. Every morning at 4 a.m. they draw his CBC’s…. his blood counts. Every morning I wait for them to come in and tell me today is the day, his ANC is rising. No such luck yet. Every time they tell me they are at 0, my heart sinks. I will just keep hoping and praying that they come up this week. I want Ronan to be out of the hospital and to spend some time with Liam and Quinn. I want my baby to be able to go outside and breathe in the fresh air. I want him to have some kind of normal….. you know how I really feel???? I want to take him home. Home seems so far away. So far away that I cannot even picture getting to go back there anytime soon. I know we are in for the long haul here and I am fully capable of handling that. But when you have been stuck in the hospital for over 3 weeks now…. it makes the homesickness kick in extra hard. I don’t tell Ronan this though. I just keep putting on my bravest face for him and telling him we are working extra hard to get him better. He asks a lot of questions, like why we have to be at a hospital in New York. He wants to know why he can’t have his old doctors back and be in Phoenix. I just tell him because this New York is a magical city that is going to get him better. He usually just smiles and says he just wants Liam and Quinn here with him. It takes everything I have keep the smile on my face for him and to keep his mind occupied so we can focus on the happy things. I may be sad and sometimes I can’t hide it from Ro. But I try my hardest to control it if I can.

Ronan fell asleep not too long ago. I don’t think he’ll stay asleep for the entire night. If I know my little guy, he’ll wake up soon and be ready to play. Last night we didn’t fall asleep until 2 a.m. He kept telling me he wasn’t’ going to sleep because it was party time and he was too busy shaking his booty. He cracks me up like no other. Every morning we are bombarded by “The Team,” of doctors. It’s one doctor and about 10 residents. It is a little weird. It makes me feel like we are zoo animals on display. Ronan gets so pissed and overwhelmed by all the people staring at him, that he usually ends up screaming and hiding under his blanket. The doctor usually goes over what the plan is for the day and asks if I have any questions or concerns. Ronan won’t let the floor doctor (the one I wanted to kick in the balls) exam him. Good instincts, kid. He has become very fond of a girl resident though. After ” The Team,” leaves, she stays behind to exam him and talk to him. He actually answers her questions. She is young, pretty, and very gentle with Ronan. Today, when she was listening to his heart I looked at her and I said, “He really likes you.” I saw her eyes tear up and she goes, “I feel the same way.” She is going to be a very good doctor someday. Ronan already knows this too. It’s the reason that he is so receptive to her as she treats him like a normal little boy.

Ronan only slept for about an hour. He woke up and we were off for our next adventure. We spent a lot of time out of our room. We walked the halls for hours, played in the playroom and avoided the hot lava that was underneath our feet. As soon as we returned back to our room, a nurse came in to tell me that they wanted us to switch rooms. Our roommate had left earlier in the day and 2 girl patients were begin admitted and they needed the girls in the same room. I hesitated as we have already moved once and it was a total pain in the ass. I had to move all our stuff by myself while Ronan waited on the floor in the hall for me. I asked if I could see the room we were moving into first. The lady told me the number and I went to check it out. Good thing I did, because there was no way in hell I was moving into that room. It was the size of a shoebox, the boy and his parents had the heat turned up to about 90 degrees. FUCK THAT SHIT. I came back to our room, which is huge by the way, and told our nurse, Alex, that I didn’t mean to be a pain…. but there is no way I could move into that room without going crazy. I pleaded with her and told her we have been here for 24 days now… could she please she what she could do so we didn’t have to switch rooms. Alex came back a few minutes later and just said they would move the boy that was in that room, into our bigger room. Thank the lord. A tiny 90 degree room is something that would have totally thrown me over the edge. So no moving for us. We are staying put where we are.

It is 1 a.m. here and Ro is just now laying down to watch a movie. We are so excited for Woody and the boys’ to arrive tomorrow night. Cannot wait to see them and wrap my arms around them all. Being here alone is fine… it’s just hard because I am stuck in a hospital and cannot leave to go anywhere. Ronan wanted pizza from a place down the street today and thankfully, they delivered. He refuses to eat the hospital food so he has been living off of peanut butter and jelly sandwiches that I make him. The hospital food is actually pretty good… for hospital food. But there is something about the smell of it that ruins the appeal. Hospital food smells makes me gag. Ronan too. No clue where he gets that from 🙂

Time to get some shut eye. Maybe. Depending on if my little man says it’s time to go to sleep. He runs the roost around here for the most part. I’m o.k. with that. The more time I get to spend with him, the better. He is more mature than most grown adults and I’m happy to follow his lead. He’s going to be a great boyfriend to some lucky girl someday. A man that knows exactly what he wants. Kind of like his Daddy:)

I love you all so very much. G’nite to all of you lovely souls out there. Miss all of you back home so much. Kiss your babies and hug them extra tight for me tonight. Thank you for checking in with us. Sweet dreams.

xoxo

What else do you have for us, world???

I’ve done so well these past few days. Enjoying Ronan feeling better, enjoying Quinn, enjoying Woody, just living life being so thankful for what we have in the here and now…. trying not to worry about the future or what tomorrow may hold. Living in the present, in the moment, and nowhere else. It’s days like today that I am overcome with sadness. It’s days like today where the tears won’t stop. Some days, it’s too much for me to watch Ronan hurt. His screams and tears become unbearable. His suffering rips my heart out to the core. Yesterday, while our nurse, Julia, was flushing one of Ronan’s Broviac lines, it broke. Which means it has become too weak from too much wear and tear, which is not uncommon. She quickly clamped it off and called in another nurse to call the “Green Team,” which is the code name for Dr. La Quaglia and his helpers. He came to see us and decided that Ronan needed a new access system put in. They decided to put in a temporary line for now and in a few weeks Ro will either get another Broviac or a Mediport. Regardless, Ronan had to be put under anesthesia today and Dr. La Quaglia took out the Broviac on the right side of his chest and put in a new, temporary line in the left side of his chest. Ronan woke up pissed…. more so than normal. We went back to our room and soon an escort came to take us downstairs to floor 2 for an x-ray to make sure his line was properly placed. I could not get Ronan calmed down. The new temporary line was all bloody and he kept trying to rip it out. He screamed and cried for a good hour while I held him and let him hit me and listened to him tell me he hates me. He was screaming that his new port hurt and he wanted it out. There was nothing I could do but sit, hold him, and try my best to calm him down. I had Woody call a doctor and nurse down to come and  look at his new line, as the blood was worrying me. Soon they took us back for his X-ray and I sat him on the table while he was still screaming and saying it burned. The technician let me stay in the room and somehow I actually managed to get him to hold still for the picture. I was bawling the entire time. After his x-rays, a doctor and a couple of nurses came in to make sure there was nothing out of the ordinary going on. The blood had stopped and they changed the dressing and cleaned him up. I asked the doctor all the usual questions…. if this was normal, why is there so much blood, why is he is so much pain, etc. They explained everything to me and ended up making me feel better. By this time, Ronan was exhausted and as they wheeled us back up to the 9th floor, he had finally calmed down and he gave in and let his little limp body rest on me. I held him tight, rubbed his back as we were wheeled into an elevator full of people. An elevator full of people whose eyes were on us the entire time as I sat and let the tears pour down my cheeks because I don’t care and I cannot stop them today. Today, has not been a good day. Watching Ronan and all he is having to go through becomes unbearable at times…. no matter how strong I am trying to be. We are not getting out of here anytime soon. Woody thinks maybe Monday. This chemo has done a number on his ANC counts and has wiped him out. I’m sad for Quinn who only wants to be with Ronan and vise versa. The main reason for keeping Quinn here was to spend time with Ro and that has hardly happened. He asks me 10 times a day when Ronan can be released from the hospital. I am going to be heartbroken if it is not until Monday and Quinn has to go back to Phoenix without spending much time with Ro. So not fair.

Ronan is sleeping now and they have him hooked up to a morphine drip to help with the pain of his new line. I hope he wakes up not so upset about the new foreign object in his body. He has every right to be upset, mad, scared, confused. None of this makes any sense to him and I don’t blame him for being angry at the world. I am trying my hardest to be so very strong for him and to explain all of this to him in a way that makes a little sense to his young mind. It is all I can do today to not crawl up in a corner somewhere as I feel so tired and sad. I miss my support system back at home so much. They give me so much strength and love and not being surrounded by our dear friends and family has been harder than I expected.

Alright my sweethearts. This is all the update I can muster up the energy for today. Lots of love to you always. Thanks for checking on us and also a big thank you for all the people who have responded to donating blood and platelets. Means the WORLD to me. THANK YOU THANK YOU THANK YOU. I love you all so very much.

xoxo