Back to Baseline

Well, it happened. It had been almost seven years since the last shunt revision, so I guess we were due. We did have that trip to WI back in June, but we'll circle back to that. Tuesday, was a virtual day, I had to wake up Bub, and his exact words were "My brain hurts". After most of his classes, he spent the rest of the day sleeping or trying to sleep and rest in the chair. Wednesday, I got the call to come get him. Vomiting, headache, no fever...so we went to the ER. I knew I just needed pictures to confirm no hydrocephalus. The CT "was clear", but no shunt series was done. We left the ER with Ayden literally screaming, "I don't like large!" It did not settle, but I am not a doctor. Frustrated, I did some school work, but then I looked up the CT discussion on My Chart to find the they compared and discussed the similarity in size of the ventricles to June of 2023, the CT from the last middle of the night trip to Milwaukee because of suspected hydro. When I found it I talked with Justin and tried calling Childrens, but the office was on call service at that point. Bub was sitting at the counter when Justin saw a visual sign we needed to head back to the ER, his shunt tubing that runs down his neck has an obvious bulge/bump on it. This time they did a shunt series, and it showed there was "problem". We were told it was serious enough that Milwaukee was too far away. We had to choose one of the Indy hospitals, yes I asked about CC or Cincy, but we had to choose between Indy due to the severity of the issue the need to get it fixed quickly. That was around 8:30 PM... Justin went home around 10 PM to pack bags and came back...and we waited no vitals were taken past 11, an IV was put in, but no fluids started. Just Bub sitting in a bed...finally at 2 AM we asked what was going on because we thought he was going to get transported. The nurse came back awhile later to tell us we were ETA of 7:30 AM departure for Indy... Frustration, and a good knowledge of his patient rights led us to get him discharged so we could get him to Milwaukee before he would have even left for Indy. 

When we arrived in Milwaukee they didn't even take time to redo the imaging, we came with our CD, they did one quick shot of a particular angle they wanted, and put us on the OR schedule. He went into surgery within hours and was recovering on the 7th floor by mid-afternoon.  Verdict: shunt tubing broke in a few places from calcification, but also noted the anti-siphon device was not working properly. All of it was replaced that needed to be, but fortunately nothing was needed done deep in cranial cavity. 

1. We need to find a neurosurgeon that is willing to take on Bub's case because Milwaukee IS too far in an emergency.  Not that we haven't tried before, but we were already working on this just a few weeks ago and are hopeful for an appt. in March with a possibility.

2. We WILL ALWAYS do what is needed, even if it means getting chastised by a neurosurgeon for putting his life in danger. It wasn't the first time. Yes, we of all people know "he could have died". 

3. I think the mystery of last summer was the anti-siphon not working efficiently. So that little question is answered.

We made it home at 1 AM Sat., and rested all weekend. Ayden got up this morning but stayed home for another day. Jen stopped in to take him out for bit of rec therapy this afternoon, and I think it was good for him to get out. Tomorrow, we hope to be back to normal, well our normal anyways. The smile you see in the picture from this evening helps me to believe we are back to baseline.

It is his last basketball practice/scrimmage. He probably won't be really active but he can see all his friends. 

Thank you for all of the prayer warriors that kept us going over these past few days.  Answered prayers for sure. I am hoping that it is for a bit, we need to focus on a camp application, bowling season, and track soon too! 

Thank you to everyone who follows and supports our Bubba. 

The Hoffmans