When It Rains...

We got home from our stay at the hospital late Friday night and everyone crashed. We did notice by the end of the week that Isaiah's eye deviations have improved dramatically. He went form looking almost exclusively to the right to looking around and even looking directly at us. It comes and goes, but knowing that sometimes he is actually SEEING us is amazing compared to when he was first diagnosed. We also had some awesome friends bring us dinner and just hang out on Saturday night after we got back. To be able to spend time laughing and eating with friends was amazingly refreshing after spending most of the week in the hospital. Late Saturday night when I was changing Isaiah's diaper I noticed a bump on his little hiney. It was raised and hard. I mentioned it to Gabriel but thought I'd wait and see how it looked later.

The next afternoon Dr. Wootton (Infectious Disease) called Gabriel to check in. (Have I mentioned how amazing all of Isaiah's doctors are?) Gabriel told her about the bump and she asked us to send pictures. We emailed her and she forwarded them to Dr. Conlon (pediatrician) and they decided I should go ahead and bring Isaiah into the office on Monday to see if it was an infection. Monday morning came and I took Isaiah to see Dr. Chia (other pediatrician in the same practice) and she told me it was a staph infection and prescribed antibiotics. She told me in any child, but especially Isaiah, that if it wasn't better in two days that we needed to let her know and might have to go to the hospital for IV antibiotics. I called the office back Thursday morning to let them know that it didn't look worse, but it definitely didn't look better. She told me to take some more pictures and email them and then since we were going to be in the building the next day for Isaiah's ophthalmology follow up we could stop by then. A few minutes later I left to go pick Morgan up from his play date at the neighbors. When I got back Gabriel told me Dr. Conlon had called and told me to go ahead and take Isaiah to the ER.

Having learned my lesson the first time I brought enough stuff in the event that we would be admitted and staying over night. I met my aunt who was going to take care of Morgan and headed over to the hospital. They took Isaiah's vitals and put us in a room. Then a nurse came in and looked at his spot. The nurse told me she thought we would have to stay the night since he had already been on oral antibiotics and wasn't showing any obvious signs of getting better. Then the ER doctor came in. She saw the spot and was surprised with how small it was. Apparently, the staph they usually see in the ER is pretty gross. Isaiah's toxoplasmosis medications require that he have weekly blood tests to check his white blood cell count so they went ahead and did that while we were at the ER and would use his levels to decide if we were staying the night or not. Because Isaiah had been stuck so much at the hospital the week before the nurse had a hard time finding a spot to use. She poked him once and only a drop came out. So then she went and got this cool light that lit his hand up so she could see the veins in it. If I wasn't so worried about them finding a good spot I would have thought it was pretty cool. The light helped and she only have to poke him one more time. When they were finished one of the nurses found out I hadn't eaten lunch yet and got me juice, a sandwich, and a pudding cup. We have had some great nurses at Memorial Hermann. When the tests came back Isaiah's levels were great so they said we could go home! Yay!

So I headed over to my aunt's to pick Morgan up. When we got home Gabriel noticed Morgan felt pretty warm so we took his temp. He had a fever of 102.5. SIGH. I gave him some ibuprofen, checked for any spots that looked like Isaiah's and put a call in to the pediatrician's office. I didn't want to take any chances over the weekend. The on call doctor told me to check his temp again while he was asleep and then bring him in the next day (Friday).

Friday morning we had an ophthalmology appointment for Isaiah and Morgan. Dr. Kumar wanted to check Morgan's eyes to make sure everything was ok and to check Isaiah's eyes to make sure the toxo medicines were doing their job and healing an active lesion they found while we were in the hospital. Thankfully, Morgan's eyes are perfect and he did great at the office and Isaiah's lesion is already regressing after less than two weeks of medication! Afterwards we popped into the pediatrician's office and learned that Morgan had strep throat!

So things haven't really slowed down here much. Isaiah and Morgan are both on antibiotics and Gabriel and I are trying to catch our breath. Thankfully, we serve a God who never has to catch his breath and who is always there for us. God has definitely blessed me with a peace in knowing that he gave Isaiah to us for a reason and that we just need to lean into Him. Please continue to pray for peace and that we rely on God in all the decisions we make with Isaiah's care.

Hospital Stay

Holding a sleeping bubba during his EEG

Our Stay At Memorial Hermann

By the time we got to our room it was close to six on Tuesday so we knew we wouldn't be getting into MRI until the next day at the earliest. The first night was rough. They poked poor Isaiah. A lot. Between an inexperienced nurse, an incomplete list of what they needed, and a lab that let his blood sit for too long before testing it (TWICE), Isaiah got poked quite a bit. They actually had to have three nurses to do his I.V because he was moving and bending his arm so much. One thing we do know is Isaiah has great muscle tone. As in, he's already trying to roll over when he does inclined tummy time. Like I said, he's a strong one.

The next morning rolled around and as lunch time came we learned that Isaiah was not going to get into MRI that day. Someone at some point (things are a bit blurry) said something about the whole hospital being full? I'm not sure. But there was nothing we could do about it so we were definitely staying another night.

The blood draw they did came back as elevated for toxoplasmosis. We spoke to doctors from infectious disease, neurology, pediatrics, and ophthalmology. They told us along with the MRI they would be doing a few other tests including a lumbar puncture and EEG to make sure that all bases were covered. One of the doctors from our pediatrician's office came by thinking the MRI would have been done already. When she learned how long we had been waiting she sprinkled her magic MRI dust and got us scheduled for 8:30 the next morning. We knew this wasn't a guarantee but it was a lot better than hoping we would get in at some point. So we spent another night in the hospital (Wednesday night) with people waking us every few hours to check vitals and such. Hospitals are terrible places to sleep.

Thursday morning we walked down with Isaiah (it's a good thing they have a whole unit of transport people because that place is HUGE) to meet the anesthesiologist that would be monitoring him during the MRI, eye exam, and lumbar puncture. He was a blessing. Even though he was a bit eccentric (aren't we all) he got my cell phone number and personally texted me updates as Isaiah went through all his testing. I can't imagine having to sit in the room for the four or so hours it took not knowing anything that was going on. Isaiah did great. No complications. Came back up to the room and ate like a champ.

Not too long after, we spoke to the neurology team about Isaiah's MRI. Isaiah is missing brain tissue and has calcifications in his brain. The amazing thing about a developing brain is that it has the ability to compensate. We just don't know how badly his brain injuries will affect him. He could have some minor developmental delays or he could be mentally handicapped. This is something we are praying over.

The EEG was going to give us a picture of how his brain was handling the deficits so far. It would tell us if there were any extra electrical discharges going on. These extra charges can disrupt his learning, his sleeping, or cause seizures. Then we learned that since they didn't get the EEG scheduled before he went under sedation for the MRI we would have to wait until the next day to make sure the test wasn't skewed. Fortunately, we had an amazing nurse who bent the rules and brought a small crib in our room for Isaiah to sleep in (as opposed to on top of me). I learned I could have them take the vitals when Isaiah was already awake to eat. Instead of him eating, me getting him back to sleep and then 30 minutes later they wake him up to take his temperature. That night Isaiah slept six hours straight. Poor guy was worn out.

After a much better night of sleep for everyone we took Isaiah down for his EEG. He was not a fan. It involves using goop to stick 25 or so electrodes to his head. Once we were able to get things started Isaiah did great. Getting information while they're asleep is the most important and we were able to get Isaiah passed out pretty easily. The results from his EEG indicated two things. Slowing on the right side and extra electrical discharges. We were able to go ahead start some medication that should help with the extra discharges.

We were able to come home Friday evening after our extended stay in the hospital. It was definitely a whirlwind of information and tests. Overall, the prognosis is still up in the air. He's just so young, and the brain is so malleable, that we don't know how affected he'll be from the physical limitations he has. Please continue to pray that we rely on God during our decision making process as we move forward in Isaiah's treatment.
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Toxo Fact: There is actually no correlation between cat ownership and being infected with toxoplasmosis, especially in indoor cats.