Two Mondays ago Ethan got some kind of stomach bug. He woke up Monday night with a very high fever of 104.7! We finally got him down to a safer zone and calm around 4am. His oxygen sats were extremely low - 24% so obviously he was put back on oxygen until he recovered from this bug. Tuesday went a little better but still on and off fevers. His vomiting did subside and he started to feel a bit better. Thursday he returned to school and things returned to normal.
Memorial weekend came and we enjoyed a lot of time outside in the beautiful weather. Ethan was able to go to Thomas' Day Out (riding the trains) with Grandma and Grandpa and he had a blast. Monday night (Memorial Day) he started feeling under the weather again. He was very tired and he started getting a bit of a fever again (although nothing compared to the previous week thankfully!). This continued through the week. He'd wake up feeling good, go to preschool, come home and play, then get exhausted and feverish by dinnertime. Wednesday the school called concerned because he fell asleep on the bus and wasn't feeling well. Falling asleep is very unlike him so that really made them worry!
We went in to the pediatrician Thursday and found out Ethan has strep and an impressive case of pneumonia in his right lung. Of course that's his good lung! *sigh*
While leaving the doctor's office we got to see the Life Flight land to pick up a patient. The kids thought that was VERY cool!
Our pediatrician consulted with cardiology and upon reviewing the lung xrays they called and wanted us admitted. So we packed up and headed downtown to the hospital. We started off the night in the pod, but since he could've been contagious and there are children on that floor (cardiac floor) waiting for hearts (like little Charlie across the hall who has been there for almost a year now) they shipped us downstairs to have a private room. I wasn't complaining too much about that. :) By the time we were moved and settled in though it was around 12:30 am! Ethan was so tired and not wanting to deal with anything (like the IVs and everything he had to get). Ethan was actually so overtired that he hardly slept. He kept falling asleep, then would wake up hurting and irritated and cry. The few times he actually fell asleep for a while the nurses would have to come in for vitals or meds. It was a long night.
However, he was feeling a LOT better in the morning. He received two doses of IV antibiotics and constant fluids. His oxygen sats were at 47% upon admission. He spent the day on 2 liters of oxygen and that kept his oxygen sats in the 60% range. He was able to get up and go to the playroom so that made Ethan happy. :)
By afternoon Ethan was feeling good enough to eat! He hadn't had much of an appetite this past week so watching him devour his entire lunch (ham and cheese omelette, hash browns, oreos, chocolate pudding, and chocolate milk) was awesome! That really showed me how much better he felt!
He spent some more time playing around in the room, chatting with doctors, and waiting for news to go home.
During rounds I was able to talk with the doctors about upcoming plans. We have a heart catheterization and bronchoscopy scheduled for June 18th. During this they will check out everything in his heart, balloon open anything that needs to be opened, and really get a good look at the potentially clotted off pulmonary vein. Pulmonology will come in at the end of the cath and do a bronchoscopy. They think his bronchial tubes are collapsing when he breathes. They also think there is a problem with the cilia in his lungs. They don't think they work effectively and therefore don't get the "gunk" out of his lungs. This could be a very big reason that his lungs are always so wet and he is so susceptible to pneumonia. Hopefully we'll get some good answers on his lungs during this procedure.
On June 20th (two days later) the plan is to have heart surgery. They plan on putting a shunt in on the left side of his heart. They will go through his left ribcage, deflate his left lung, go through that lung, and connect a shunt (a fake pulmonary artery) from his left lung to the left side of his heart. This will hopefully increase bloodflow to the left lung (his damaged lung) without increasing the pressure to it.
The cardiothoracic surgeon (Dr. Stewart) has cleared his day for this surgery, but it's not officially set until the cath is done. If the cath shows that his heart won't handle the surgery or if there's another problem that needs to be dealt with differently then the surgery will have to be rescheduled or altered.
We will have a meeting with Dr. Stewart at some point before the surgeries to go over the details of the plans and goals. Apparently this surgery is going to be step one of a three step process. If this works out well, they will do the same process to the right side of his heart/lungs. The final step would be putting some kind of connection in the center of his heart to connect the two new "pulmonary arteries" together. This will allow somewhat correct bloodflow to both lungs! Right now they think this is the best we can hope for since the separation surgery plans were vetoed. During our meeting with the surgeon we'll go over all the specifics and a lot more details. That's just the information I have so far.
So I got a bit off track there with the surgery plans! Since Ethan was doing so much better Friday afternoon, the docs decided to let us go home! Yay! We were surprised but so happy to not have to spend the weekend there! :)
By the time we got home my throat was really irritating me. It had been bugging me a bit during the day, but nothing too terrible. I had a sinking feeling that Ethan had shared his strep with me. The kids and I headed out to the Minute Clinic and sure enough, I have strep too. Lovely. I got my prescription of antibiotics filled and we headed back home. Friday night I felt absolutely awful with fever, sore throat, and nausea. Saturday morning I was a bit better but still could barely swallow. Callie woke up and made me breakfast in bed since I was sick. She is so sweet! I wish I could've eaten it, but I just couldn't manage to get anything but the tea down. She sure did make my heart feel good though!
Thankfully we're both feeling better - still on the mend but doing better. Ethan is on and off of oxygen still. Last night he needed it since his oxygen sats were in the 50s, but today he's been off all day and still in the low 60s tonight. :) He's happy since he hates wearing the oxygen.
Please keep us in your prayers that we can continue to heal and get over this strep and pneumonia. Ethan is going to school tomorrow since it's his last day for the year. He's having a party and concert so I get to go with him. I'm not sure I'd feel as comfortable sending him if I wasn't there. Tuesday is his class trip to the zoo. I get to take him to that as well, so hopefully everything will go smoothly and we'll have a lot of fun! I know he's been looking forward to it for weeks!
I'll let you all know how everything is going and what Dr. Stewart says at our meeting. We also have INR bloodwork for Ethan tomorrow, so hopefully the antibiotics aren't making his INR too high! He started off a little low for him at the hospital. He was 2.5 and his goal range is 3.0-3.5. Hopefully that will give us a little leeway since antibiotics make INRs go up. We definitely don't want a repeat of his sky-high INR from earlier this spring!
Thanks for your continued prayers and I'll keep you all posted!
Hope you all get to feeling better soon! Praying too!
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