Liam's Cancer Fight-Chemo #3-Cancelled-Port Removal/PICC Placement

Last Friday (24th) Liam was scheduled to have his CT scan at 9:30a to give us a better understanding of how the tumor is reacting to the chemo and to verify the progress. This meant that we needed to be to Primary's early enough to check in, access his port, and get prepped for the CT scan. But due to some concerns we had with how Liam's port was healing, we wanted to get it looked at before they started anything. Let's back up. Here's why:
When the nurse came the day before to run labs, her accessing Liam's port caused it to bleed. After she was done she covered the port with some gauze to help with the bleeding. That night, Natalie went to get Liam ready to get in the tub and in removing the gauze, the scab stuck to the gauze tearing open the scab. It did not look good. Like, you could see the port and beyond, not good. Definitely not an ideal situation given that Liam is immunocompromised and at a greater risk for infection. It was something that needed to be fixed. Luckily, Nat is an awesome mom/nurse and got him taken care of until we could get to Primary's to have them look at it.

Back to Friday. When we got to the hospital, Natalie took Liam upstairs to the clinic to have them look at his port, and hopefully access it if they felt comfortable with how it was looking. I headed to CPC (procedure center) to get us checked in so we could be first in line for the CT scan so that hopefully we didn't have to spend too much time waiting around (this is what they called "foreshadowing") and could get Liam into CT to get it over with.

After checking in I waited for a few minutes, expecting to hear from Natalie saying she was on her way. I didn't hear anything so I text Nat and asked her how things were going. She said to come up to the clinic. I worked my way upstairs and when I go there she informed me that one of the Nurse Practitioners had looked at it and felt like in the condition it was in that they couldn't access it and more than it would more than likely need to come out. She needed to get with her team to get a 2nd opinion just to make sure. Shortly after I got there, Caitlin (another NP) came in and looked it and had the same opinion. She thought that it might have been infected (locally, though, not systemically due to lack of symptoms) based on how it looked, but Natalie and I didn't think it was. She too wanted to get another opinion but also asked the surgical team to come up to look at it to see if they had an opinion. The thought was that they might have to remove the port and either try to place a new one on Friday, or have us come back the first part of the next week to have them place the new port. But before any decisions were made, they wanted more opinions.

About 9 or 9:30, the surgical team arrived and after a quick look, decided that it would be best to remove the port given the condition it was in.

A little backstory to how the port got so bad. When we first found out Liam had cancer, one of the first things they did was place the port while they did biopsies and bone marrow aspirations. The port placement was done by the IR (interventional radiology) team since they were doing the biopsies. We assumed this was normal since it was Primary's and these guys do this all the time. It wasn't until later on that we discovered that IR rarely, if EVER, places the ports, and that it was a new Dr. that came from St. Jude's that did the work. The issue was he placed the port directly under the incision. This put a lot of stress on the suture/incision area and it was never able to heal, especially since they had to access the port a few times a week. Apparently, this is how he was trained to do it, but it wasn't normal for Primary's to do it this way. But how were we supposed to know that??? (Right?!)

The surgical team was surprisingly aware of our situation and it appeared as though several people were up to speed on the port issue. They wanted to make it better so they were trying to decide what the next step would be. With the concern for the potential infection, they wanted to put Liam on antibiotics, but he would need a way to get the medicine. A suggestion was brought up that maybe in lieu of putting in a port, they could put in a PICC line (which is like an IV line that is stitched to the arm). They wanted to get Oncology's opinion because if Liam was only due to have a couple more rounds of chemo, this might be a good alternative to avoid surgery to place and remove another port. Dr Mace (Oncology) came up and looked it over as well and agreed that based on the MYE (a neuroblastoma differential test) results (confirming that the cancer was intermediate risk and not high-risk), Liam would probably need just 2 more rounds that the PICC line was a great option. Regardless of what they were doing to do, it became pretty obvious that his 3rd round of chemo was not going to happen this weekend. This was unfortunate since Natalie's parents had come up from Vegas to watch the kids all weekend. Pushing it back meant another trip.

There was still the question of the CT scan. Would we be able to perform the scan while Liam was under general anesthesia? It made sense from a timing standpoint, but as we later found out, Liam had to "drink" the contrast dye which for someone his age, they administer via an NG tube which happens after the sedation. We weren't told that the last time he had the CT so we didn't even think about it. The issue was they couldn't give him the contrast dye if he was under general anesthesia, only conscious sedation. The team was trying to coordinate to see if that was an option. The conversation became a mute point since CT wasn't able to fit Liam into the schedule because they were booked until 5:00 anyway. This just meant we would have to wait longer to see if the tumor was shrinking.

By about 11:00 we were notified that the Surgical team would be ready for us around 12:30 and that we could head down to Same Day Surgery and hopefully between 1 and 2, we could get Liam in to have the port removed and the PICC line placed. We hoped it would be 1 or 2, but Natalie said, I bet it's closer to 4. Keep in mind, this whole time, Liam was still NPO and hadn't had anything to eat or drink since 8:00p the night before. Hopefully they could get him in early so we could feed him. As we figured, chemo was going to get pushed back until the following week since they were concerned with an infection and wanted Liam on 7 days of antibiotics just to be safe, even though most of the doctors didn't think it was infected. We can't blame them for playing it safe, especially since the oncology team acted like it was no big deal to push things back, but for our own selfishness, we were anxious to get Liam treated so we could move on and put this stage of life behind us. In all reality, we would do whatever we needed to do to make sure we didn't expose Liam to any unnecessary risk and if that meant waiting a week and dealing with antibiotics, we would do it.

While we waited, Liam took a short nap and Nat asked the team about alternative medicine to make sure the oils we were using didn't negatively impact the chemo. After a few hours of hanging out in the clinic and letting Liam enjoy having lots of room to practice his new walking skills, we headed down to surgery and got checked in. Shortly after, they took us back to a little room, they had us give Liam a wipe bath and put him in a kids scrub set/gown for the procedure. They took his vitals and then we waited…and waited…and waited. They came in and said, it will be about another 45 minutes. So we waited some more. 45 minutes passed and they came in and said, it looks like another hour. So we waited some more. A nice nurse came in and helped keep Liam entertained by blowing bubbles and playing with him, but he was getting hungry and more tired with each passing minute. It was around 3 and they came in and said, it will probably be another hour. Are you freaking kidding me? Don't they know there is a 13 month old kid who is tired and hungry?! What a joke!! But we didn't have much choice so we waited some more. Finally 4 came around and still nothing. By now we had migrated our way to the play room so Liam had something to do. Luckily it was a Friday afternoon so the unit was very quiet and we had the halls and the playroom to ourselves essentially. They said, they got an update and that it would probably be 5:15. At this point, we were so over it that until we were actually headed to the procedure room, we weren't getting our hopes up. Luckily some neighbor friends Amy and Perry Keys stopped by to visit and brought Natalie some gluten free baked snacks so she'd have something to eat. Since Liam hadn't eaten, she wouldn't eat either, despite urges from both the Keys and from me. Mom mode had kicked in and food could wait.

For those of you who don't know Natalie, it isn't uncommon for her to focus so much on others that she forgets to take care of herself. But that's who she is. She wants to make sure everyone else is taken care of no matter what. I've always loved that about her, except when it starts to impact her well being. It shows how much she cares about others and how selfless she is.

When they told us it would be after 5, Natalie asked the nurse if it was possible to fit the CT scan in since earlier they had told us they were booked until 5. They said the could do it but they wouldn't quite be ready for us and it would be closer to 5:45. While we waited for an answer on that, the surgical team decided to start an appendectomy so we lost our slot with surgical. When 5:45 rolled around and we were still waiting for the plan on the CT but there was still the issue of conscious sedation vs general anesthesia. The surgeon came in and said she was done with the appendectomy and was ready for us to at least do the port removal no matter what but they were waiting to clear things up with Imaging. A few minutes later the nurse came in to check things. The only one we were waiting on was the anesthesiologist. Finally at just before 6:00, he showed up informed us that they would be doing the CT scan and were ready to go. We loaded everything up and handed Liam over just outside the surgical area and then we headed to find some food.

Natalie and Amy hung out in the cafeteria while Perry and I headed to find real food (Crownburger pastrami burgers…yummm!!!) and a smoothie from Jamba Juice for Liam when he woke up.

Just before we got back with the food, Natalie got a call from the nurse to let us know that because they couldn't give Liam the oral contrast dye, they actually were NOT going to be able to dot the CT scan and that we would have to do it next week. Whatever…..

We ate our dinner in the waiting room and at about 7:20, just as Natalie finally started to eat, we got a call saying Liam was done and we could head back to post-op. He had done great and everything went well. The port was removed, they cleaned up the port site, and a nurse from the PICC team placed the PICC line in his left arm on the inside near the bicep. He was groggy and hungry but we could FINALLY feed him. They tried to give him apple juice in one of their sippy's but it wasn't until we were there with HIS sippy that he finally started to drink it….and he downed it. We gave him a few minutes to make sure he tolerated the drink and then gave him some smoothie, which he loved!! It has only been 23 hours since he last ate but he was finally getting food. It took about another hour or so after to get care training on the PICC line and go over any questions. They also still had our admit orders on the computer so for a minute they thought we would be staying to do chemo but a quick phone cleared it up and by about 8:30 we were ready to go home. 13 hours later, we were finally headed home. All that for an hour and twenty minute procedure.

As big of a pain in the but that it was, there were some good things that came out of this. We wouldn't have to worry about the port anymore, when his chemo was done, the PICC line would save him 2 surgeries and be much easier to remove than the port, and it meant that we would be able to spend the weekend sleeping in our own bed, and not in the hospital (even though the patient rooms are so comfortable)!