After a phone call from the hospital on Thursday letting us know that our appointment was changing from Thursday to early Friday (to allow for the Echo they needed to make sure Liam's heart was strong enough for the chemo) we modified are plans and got ready for Friday. Natalie woke up Friday morning and her and Liam headed to Primary's at about 5:30am so they could get to the hospital early and get him in to do the Echo. Once they arrived, the Nurse practitioner in the children's procedural unit was looking at Liam's port and due to how it looked, she didn't feel comfortable accessing it and ordered an IV. Knowing he would need to be accessed for chemo, Natalie asked what the plan was with that and the NP didn't know but just didn't feel comfortable doing it. Luckily, the Child Life specialist noticed the order and came down to talk through it with Natalie. After discussing it together, Natalie decided that she needed to be Liam's greatest advocate and asked if the ICS staff could asses the port situation. The NP said she was fine having them look at it and suggested that ICS access the port while they were looking at it. Feeling comfortable with that plan, Natalie headed upstairs to ICS. ICS looked at his port and felt like everything looked fine and accessed it. After working through that ordeal, they finally got Liam situated and placed him under anesthesia and performed the echo at about 9am.
During the echo, Natalie got checked in and admitted. After a little more confusion, they finally got a room lined up just as Liam was coming out of his echo. While Natalie was dealing with Liam and the hospital, I stayed home to help get the girls up and ready for the day. Grandpa Kerry came down to help watch the girls during the day and Grandma
Joy would come after school to help as well. After getting the older girls to school and Em ready, I headed to Salt Lake. I got to the hospital at about 10:30 and headed up to the room. This time, we were on K-Pod! When we were at Primary's the first time, we were told that the kids with great levels typically stay in K-Pod since they aren't at as big of risk for infection so hearing we were in K-Pod was a great sign.
Before they could start the chemo, they had to do a specific gravity test (urine test) to make sure certain levels were where they needed to be. While we were waiting the doctors came in and we went over a few questions, asked about the biopsies (that still aren't back yet) and discussed upcoming treatments. Nothing crazy but the staff was still very optimistic about his prognosis. The results of the specific gravity test came back where they needed to and at about 3ish they started the chemo process. This round he would be getting 3 different drugs, 1 that he had last time for an hour and two other drugs (one for an hour and the other just 15 min). During the Chemo, Liam did really well, but never really napped due to the Dexamethazone they gave him to help with nausea.
Between the chemo and the IV fluids before the chemo, we were worried that Liam's bladder would get backed up and we would have the same issue we had last time, but he ended up leaking through his diaper during the first Chemo drug which meant he was doing a really good job of urinating (which is hopefully a sign the tumor is shrinking and no longer impeding his urinary tract). That would be the first of 4 outfits that he would leak through overnight!
After finishing chemo, Natalie put Liam in the tub to see if we could calm him down and get him settled and to bed.
We could tell Liam was tired as he fought sleeping, seemed easily agitated, and didn't really want anything to do with me (which is very unusual). We thought initially it was exhaustion but as the night continued we started to think it was his reaction to one of the drugs. The nurse told us that the med he took early to help with nausea can impact kids his age like this. As the night went on, he seemed to get worse. After fighting sleep, he finally gave in around 11pm and fell asleep. The nurses came in at Midnight to give him some drugs and then after 1 they came back in to change his bum in hopes the drugs would help keep him settled but it didn't seem to help. After being woke up several times due to meds, bum changes, and leaking through clothes, at 5 he finally fell asleep deep enough to sleep through a bum change. Due to several of his outfits being soaked (with chemo fluids) they needed to be washed and the nurse we had (Chelsea) was super nice and re-washed, dried, and folded the laundry that Natalie had started so Natalie could sleep. Since Liam didn't want anything to do with me, I tried to get some sleep (as much as you can on a 3" thick mattress), and Natalie helped where she could. Overall she probably only got 3 hours of sleep, though nothing of great quality.
As morning came, Liam seemed to do a little better, but was still agitated from the drug from the day before and probably facing the effects of exhaustion (we all were). Not long after waking up, Liam finished his IV flush and we asked if he could be taken off of his IV so he could run around. The team approved the request and Liam seemed to be much happier being able to run around the room more freely. While we waited for discharge orders, Natalie updated our families and I took Liam on a walk through the halls in the Radio Flyer wagons the hospital has for patients to use. We went down several of the wings and he seemed to be much happier after getting out of the room. When I got back to the room, the Nurse said we were almost good to go home! The Attending and NP had to check in on things and give us the final approval to head home, which they did. We'd be back to do it again in 3 weeks!
After getting home, we relieved Grandma (Grandpa had a meeting in SLC. Thanks Mom and Dad!!) and focused on getting Liam back on track. He ate well but it took him a little bit to get him down for a nap. At almost exactly 24hrs after getting that one drug, he started to act like himself again and by bed time he was more than ready to go to bed. Before getting him to sleep we gave him his pain meds and started his regimen of giving him his daily Neupogen shot (for 10 days) to help his body's white blood cell count stay up. After last round, we went back to Primary's where they gave him a slow release shot of Neulasta. The Neupogen is the same thing, it just has a shorter release period which requires a daily shot where the Neulasta was a 1-time deal. There are pro's and con's to both drugs but we thought we would try this one (especially after the battle we had with the insurance company to approve it). We gave him a bottle and he went right to sleep.
Although this round was only 1-night, it was a challenging night and not something we would want to repeat again. Our hope is that next time we can avoid that one drug that impacted him negatively and see if the other pain/nausea medications will do well enough to help him through the treatments. Getting good sleep will help him (and Mom and Dad) stay happy and strong through the process.
Thanks again to all of our friends and family who have brought meals, watched the kids, sent well wishes, and said prayers on our behalf. We can feel the love and prayers of
#LiamsArmy and have seen the blessings from our Heavenly Father! Thank you!
