Our First Week at Riley

Oh how things have changed since my last post. One day I'm stressing over being unproductive on my first day home alone with the kid, and the next I'm wondering when we'll even be home again.

On Monday morning we had an appointment with the doctors at Riley Children's Hospital to discuss future steps for Holden's surgery and whatever else needed to be done. We met with a few doctors from a speech team, who watched us feed Holden to assess how long it took him to eat, if he got tired while eating, etc. Then we met with a plastic surgeon, who pretty much confirmed that they'd do the same procedures that the doctor we met with a week ago told us they'd be doing. We really loved all the doctors that we met with and, while I once again had lots of tears, are excited to be moving forward. What we were not expecting was to be admitted immediately.

The doctors all left and we were told we'd be notified once they had a room open for us. Little did we know we'd be sitting in that tiny 8 x 8 ft. room for the next 6 hours. We started making arrangements with family as to who would take care of Aurora, Zoey, and the house. For some reason, still unbeknownst to us, Holden slept that whole 6 hours. Also, while we were waiting, we received an email from Aurora's teacher, saying that Aurora would be receiving an award the following day at school. There was absolutely no way we could've possibly been there. Fortunately, we were able to get some of our family members to go, but it still breaks my heart that we had to miss seeing her get recognized. Especially after the whole forgotten birthday treat incident. Even though we redeemed ourselves, I still felt like it was a little too fresh to be adding to that wound.

Once they took us up to our room, they told us we were waiting to get Holden in for a sleep study. They said we could get lucky and something could open up that evening, or it could be a week before we'd get one. But being inpatient would get us in quite a bit faster than being outpatient. And the sleep study was the first step in figuring out what all needed to be done.

We were so excited when our nurse came in around 10-11 pm and told us they had a cancellation and Holden's sleep study would be that night. We had no clue what all was involved in a sleep study, but one of the nurses told us we'd get a chance to catch up on some sleep since they take him down there and take care of everything during the test. While I didn't want to leave my baby alone, Jose and I were definitely drained and still trying to wrap our minds around the fact that we would likely be there for awhile. We went with the nurse down to the sleep lab, watched the lady get Holden hooked up on approximately 20 probes (mostly on his face and head, but on his chest as well), and then they wrapped his head in bandages and swaddled him up. He screamed most of the time and all I could do was cry. He must've felt so claustrophobic. So trapped. I kept wondering if we really needed to put him through all of this, but I knew it was essential. We mentioned something about where we would sleep and the lady doing the sleep test implied that one of us was to stay. As I mentioned before, our nurse told us we'd come back to the room to sleep, but I actually felt better staying in the room with him. Jose was able to go into the room next door to catch up on sleep. He'd had the last "shift" with Holden at home, so he'd been up the longest and I insisted that he get some rest. I don't really know how else to describe the next 6 hours, other than to say it was literally the worst 6 hours of my life. Holden screamed the entire night and there was nothing I could do. I was able to try to calm him down at times, and feed him and change his diaper, but he was unconsolable. On top of that, I didn't "vibe" with the tech that was doing his sleep study at all. I won't go into detail, but I definitely had major anxiety that night, on top of an already stressful situation. While he was supposed to be prone (on his tummy) for 3 hours and supine (on his back) for the other 3, he had such a difficult time breathing on his back that she turned him over almost immediately. I did agree with her on that. After 6 hours of pure Hell, they finally unwrapped my baby and we were unable to take him back to our room. 

The results of this study determined he needed more oxygen while sleeping, so they gave him a cannula with 1/4 liter of oxygen.

On Tuesday, they did a scope test, where they basically put a little video camera down his nose to check out his nose and throat. I was absolutely wiped from the night before, so Jose went with Holden to this one.

They did a CT scan on Holden on Wednesday, which Jose also went to while I stayed in the room. Wednesday was also Aurora's last day of school. They had a field day that Jose had planned on attending with her but my parents were able to go to instead. Jose's mom brought Aurora down to the hospital to be with us that evening. I know she was bored out of her mind, but we were so happy to finally have her with us. 

Holden had a swallow test on Thursday. For the swallow test, they add Barium to his bottle and X-ray him eating. They were able to see that he was aspirating quite a bit and they decided to give him a feeding tube.

One of my favorite things about being at Riley is how much they cater to the siblings of their patients. A counselor came and talked to Aurora about Holden's surgery and explained, in a way that she'd understand, what would be done and what he would look like afterwords. She gave Aurora a gift basket with a blanket, a pillow case, some sticker books, some markers and a drawing pad, along with a little white doll that had an "oxygen tube" (straw) and an IV that resembled what Holden would have on him. Aurora was able to explain to us what would happen during his surgery and how it would help him. It was probably the cutest thing ever. They also have a Child Life Zone with all sorts of games and activities for kids (both patients and siblings).

On Friday, they did an Echocardiography of his heart which, thankfully, showed that everything was okay.

Aurora was going to be in my friends' wedding on Saturday and the rehearsal dinner was Friday night. Jose's mom drove her back and even attended with her, in spite of not knowing anyone there. My mom had to work the whole week, as she'd just taken 2 weeks off to be with Holden, so they were finally able to drive down Friday evening after she got off work. Jose and I seriously have the best parents in the world. I'm not even kidding.

Saturday was test/procedure-free for Holden. Jose's sis, her boyfriend, and their kiddos came down to visit. And Aurora was in the wedding. I was definitely bummed Jose and I couldn't attend, but I was glad we (Jose's mom) were able to get Aurora there, even though the gorgeous bride called to let us know she totally understood if it didn't work for us. Jose's mom and sister drove back down with Aurora late Saturday evening.