Ian Update- 8/10/24

It feels good to sit down and write again. Well, type.

Life has been extremely crazy busy, and I definitely needed every and any free moment I had and used it to just exist. To just take up space. Do nothing. And heal.

Now that some time has passed, I feel ready to share the latest on Ian. Something that gets frequently brought up in my therapy sessions is that I feel like I’m always just waiting for the next bad thing to happen. Because I know things won’t stay stable for long. And so here we are. Those bad moments that I dread creeping into our lives once more. But also again, and something I can’t dismiss, is the fact that once again Ian was surrounded by the right people, things, and circumstances all at the right time. As bad as things can get, Ian has always come home. And I’m forever grateful we still have him.

After Ian’s tumor hemorrhaged in September 2022, his usual 3-month scans have shown his ventricles were slowly increasing in size. The last couple appeared to have been stable, as in stopped getting bigger, but each scan there was a reminder to be on the lookout for signs of hydrocephalus (build-up of fluid in the brain). There was still about 5% of the tumor left from the hemorrhage, and because it’s located in between his ventricles, they poked a hole through it to allow the cerebral spinal fluid somewhere to go. I think the idea is that the hole calcified, which is common after surgery, and the hole eventually started to close. But until the pressure was affecting Ian’s quality of life (AKA, until he was showing symptoms), they didn’t want to do surgery because any surgery poses it’s own risks.

July 22nd started like any other day. After we got off work and my sister-in-law brought the kids back home, Ian was noticeably tired. This wasn’t completely out of the ordinary for Ian to take a nap, especially after a fun day with auntie. We let him nap for a bit until it was time for dinner. We had a hard time getting him to wake up, and when we finally did, he only took two bites of food, which is very odd for Ian. Shortly after, Ian threw up. And after we got him bathed and all cleaned up, he wanted to go back to sleep. It’s always a balancing act of deciding if something is very wrong with Ian or is this something like eating too much ice cream or a simple stomach bug. We decided if he threw up again, we would go down to the hospital.

Well, come midnight, Ian woke up from his sleep and threw up again. So, off to the hospital we went in the middle of the night.

As busy as the ER was that night, I’m thankful they took our concerns seriously and got us back right away. But that also means something could be very wrong with Ian that they are getting us into a room so quickly. We explained his history and what his past MRI’s have shown, and they decided to get what’s called a quick MRI to see if there’s any changes. A quick MRI means Ian is just in there for about 5 minutes getting quick pictures of his brain. Normally, Ian gets sedated for his MRI’s so that they can get good, clear pictures of all of his tumors. Ian moved a little during the quick MRI, but from what they could see, it did appear the ventricles were larger compared to our scan in May. They then got a CT to get a little bit of a clearer picture of what was going on (clearer compared to the 5-minute MRI, quicker than to do a full MRI with sedation). The CT confirmed no bleed, but that his ventricles were enlarged, and Ian was experiencing immense pressure on his brain. Once confirmed, the neurosurgery attending came in to talk to us, but he quickly noticed that Ian’s heartrate was low, and his blood pressure was high. He said this is a sign that Ian’s heart is trying to pump more blood to the brain and is a sign that things are going to start going downhill. And with that, Ian was rushed into emergency surgery to have a shunt placed to help his body relieve the pressure in his brain by rerouting the cerebral spinal fluid.

The surgery took a couple hours, but everything went well. Ian was tired, but he did just have brain surgery, so we didn’t think much of it. When he was awake, he was okay. A little slower to respond but seemed to get better as time passed. We brought this up to neurosurgery who seemed to not be overly concerned about it. They said to definitely keep an eye on it, but since it seemed like he was improving, that was a good sign. So, we got to go home the next day. (Surgery was early Tuesday morning, went home Wednesday afternoon.)

Thursday, Ian slept most of the day, but we didn’t give him his ADHD medicine so that he could rest from the surgery. Any time we don’t give this to him, he gets very sleepy as his body adjusts to not having it. When he was awake, he was more or less the same as he was in the hospital. That evening, he was awake, alert, and playing with his toy remote truck. All of a sudden, Ian began complaining of a headache. The unfortunate thing about hydrocephalus is it causes headaches. The fix was a shunt, but brain surgery can also make your head hurt. We gave Ian his pain medicine, and then he asked to go to bed. Right before we got Ian into bed, he threw up. Headaches and throwing up are the first two signs of hydrocephalus. Lethargic is the third, which Ian began experiencing immediately after. We were told shunt failure is most common in the first couple days after surgery, so we immediately thought Ian’s shunt was failing. We started getting things ready for the hospital, but I began to worry that a 40+ minute drive to Children’s would take far too long if Ian’s shunt was actually failing. I called 911 to have the ambulance take him. But after talking with EMS, they agreed Ian seemed off, given his history and the circumstances, they decided life flight would be the better option to get him there quickly.

After getting to the hospital, one of the first things done was another scan to confirm if the shunt was failing. Turns out, it wasn’t. Ian’s ventricles actually looked better than they had in a while.

The ER staff was ready to send us home, until neurosurgery had another thought: what if Ian was having seizures from the surgery? This is always a risk for Ian when he gets brain surgery. So, we were admitted for a second time to monitor seizure activity.

Ironically, Ian was actually more himself then we’ve seen him after we had gotten down to the hospital. We spent the night for observations, and the next morning, Ian was placed on EEG to see if they could catch any seizure activity. They ended up having us stay another night to do an all-night EEG, and on Saturday morning, we found out nothing was caught. It was at that point decided that Ian was most likely having seizures, but his body was able to readjust itself without changing any of his medications. So, we went home, and we’ve been home ever since!

I dreaded Ian getting the shunt and hoped he would never have needed it. I just hated the idea of something else on our plate. Another thing to worry about with Ian’s health. But knowing it’s there to increase his quality of life makes it feel worth it.

The only words I really have for all this are gratitude, thankfulness, and blessed. We are so lucky to have the support system we do- we couldn’t do this without them. Our family stepping in to help with Gabby and Bamy, our friends who checked in on us, our pastor visiting us in the hospital. We are so lucky to have the medical team we do who always take such great care of Ian. Without them and the advancements made in the medical field, none of this would be possible. Ian gets to have a chance at life because of them. Grateful we are home. Grateful we are together. Grateful Ian is okay.