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It all started with a Headache. Back in April 2022 Rob had a headache that wouldn't go away with medications, rest, ect- nothing was working. This headache began to get worse over time and, after about a week, he was unable to sit up without getting sick and dizzy. Cue trip to his primary MD and, later the same day, to the ER.
Not knowing what was going on (migraines? just a bad headache?) Rob headed to the ER solo while Kristine took care of the kiddos and headed to dance class. The kids were rewarded with a 5-10 min stop was made at the play area on their way home (this is important later) due to doing awesome at dance even with papa at the hospital. After the kids went to bed Rob called Kristine with the news that he either has a brain tumor or an abscess. Rob was admitted to the hospital to await further tests and arrangements were made so they kids had care the next day (huge thanks and hugs to my mom for coming at the drop of a hat - without question she said "I'm on my way and I'll be there for as long as you need me.")
Kristine remembers waking up the next day thinking that this could very well be the beginning of one of the worst days of her life (not how we recommend starting a day.) Rob hadn't eaten in well over 24 hours at this point and wouldn't eat for another 12 or so because they got him into surgery to complete a biopsy asap. The mass ended up being an abscess (or "pocket of puss, a puss pocket" as an infectious disease resident kept saying.) Rob underwent the "neuro games" 5,000 x while in the hospital because no one could understand how he could not be experiencing any other symptoms besides headaches. The residents really enjoyed having him as their patient because he was anything but a "normal" case as, at the time, they thought he had no cause for the abscess. We were told it was a "lighting strike" situation where there was no cause, it just happened - lucky him! The bacteria ended up coming back as oral and upper airway so they later said "lightening strike likely due to a routine dental cleaning." That evening Kristine attempted to talk to the neurologist but was unable to track him down. She figured She’d just talk with him in the morning...
The next day Kristine finally got a chance to have a serious conversation with the neurologist and asked about Rob's prognosis. His answer? "It's good, I'd say 90% at this point. Had you asked me yesterday, I would have said 50%." (Rob later found out from a coworker in the ER that the MD/nurses were predicting a much worse prognosis at that time). Day 2-4 in the hospital revolved around a ton of testing and strong IV antibiotics. One test they completed was a TTE (transthorasic echocardiogram - basically, they look at the heart through the chest). This test was to see if the infection came from the heart. They did not find infection in his heart but they did find other abnormalities so he was scheduled for a TEE (transesophogeal echocardiogram - to get a better look at his heart through his esophagus). Here they found that he has a couple of congenital heart defects and a dialated aorta (the blood vessel that shoots blood into your body from your heart). The right side of his heart is larger than it should be due to the excess flow from his defects (PAPVR and PFO for you medical folks) so he was scheduled for....more tests!
When Rob came home he had a PICC line for his antibiotics. At this time Lucas began to run a slight fever so we kept them apart a bit. Remember that short trip to the play area? There was a really nice boy that was also there who shared his ball with Jacob and Lucas. We now refer to that ball as the "COVID ball" because all of us (except Rob) came down with COVID fast. Kristine continued to care for Rob while using her N95 but eventually he had it as well - which was totally expected but no fun.
Fast forwarding a bit since then he has had 5(?) brain MRI's, CT's, countless MD visits, IV antibiotics for 4 months, weekly (+) blood work, genetic testing, etc etc etc ETC. Some MRI's showed good news some showed scary news - we never knew what we'd be in for when the results came back. The lastest MRI (as of 8/30) shows what are either subacute infarcts (basically small strokes) or septic emboli (infection) but they can't figure out why he keeps getting new spots. Rob got his PICC removed last week due to the fear of side effects from the long-term use of IV antibiotics and is now on oral antibiotics until his heart surgery (more on that in a sec.) This brain stuff is exhausting and every doctor we speak with says "it's a complicated case so we can't be sure what's happening." Rob has zero symptoms so that's good but also really strange. As this is being written, Rob is in his second TEE to see if there are new findings in his heart. He has an ultrasound scheduled to check for DVTs in his legs in a few days (We’re not thinking this one will find anything but the doctors said it is important to check anyway).
October 26th is his big day for open heart surgery. Rob will have his PFO patched (hole between the top two chambers of the heart), a wardens procedure to fix his PAPVR (blood vessels from the lungs are attached to the wrong side of the heart so they are putting blood that doesn't have oxygen in a place that should have blood with oxygen and stressing out that part of the heart.) Both the PFO and the PAPVR are flowing to his right atrium so it is getting pretty angry about all the extra company - we need to fix this so it doesn't decide to stop working. During this surgery they will also graft his enlarged aorta and potentially insert a mechanical aortic valve due to a connective tissues disease they are thinking he has.
ALL of that being said - at this point we are working hard and fast to fix the brain problems so that his heart can be fixed. The cardiovascular surgeon will not touch him without the infection 100% gone and the cause of the (possible) strokes determined.
************ For the medical folks: Rob has right sided diastolic heart failure due to his PAPVR and substantial PFO. He also has an ascending aortic aneurysm. Tricuspid valve regurgitation was noted as well. A Warden's procedure was performed with a bovine patch, an aortic graft and tricuspid valve repair.
Rob is home and doing well! The surgeon said that his shoulder was “remarkably unstable” so I’m glad they got it fixed when they did! The left side is actually worse than the right so when that is done and healed he will be a whole new man!
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