We met with Dr. Stewart today. He is our new cardiothoracic surgeon.
The meeting went well, although it didn't go as well for the kids. The plan was to have child life take the kids during the meeting. They were going to take the kids on a little tour and have a little "pre-surgery" talk with Ethan (and Callie). We were really looking forward to this since this will be the first big surgery Ethan's had since he was 6 months old! He's only had heart caths during the past 4 1/2 years. Unfortunately child life never showed up and did anything with the kids so they came into the meeting with us. Oh well. Ethan still enjoyed checking out Dr. Stewart's office and watching him draw "broken heart" diagrams on his whiteboard.
Well, the plan is pretty much the same as my previous explanation. Dr. Stewart plans on going in through the left side of Ethan's chest. They will separate Ethan's ribs. That will give them access to his lungs and veins. The plan is to deflate his left lung, go in through that lung to access his good arteries that are in the bottom left portion. They are pretty much not getting much use currently because his homograft keeps clotting off and the stenosis in his veins don't allow much blood flow down to this area of his lung. They will connect the new shunt to an artery in this portion of the lung and attach it to his aorta/carotid artery. This will allow a great blood supply to feed into his lung. The hope is that if everything goes perfectly with this surgery it will increase his oxygen saturations by about 10%! That will put him up in the 70s and perhaps near 80%! That would be such a blessing!
Dr. Stewart commented that Ethan certainly has "spit and spunk" but his color matched his shorts today. He was wearing his bright blue shorts. Lol. He definitely thinks that is something that needs to be addressed immediately, and hopefully this will do the job.
He did agree that if this helps him out a lot that we can do the other side to help out bloodflow to the right lung. He wasn't agreeing with the plan to connect the pulmonary arteries, but that'll be something to look at later down the road. This isn't a long-term fix, but it should definitely help now and for a while. It will still give us enough time to try and come up with a more permanent solution for him.
And this is a fairly safe alternative. Dr. Stewart didn't want to do anything too radical on him becuase he is so difficult. A lot of really complex plans were presented at the surgical conferences, but apparently he wants to take a slow and safe process. This is fine with us right now since we're still looking at making improvements. If this does not work (like the new shunt lets in too much bloodflow and clots, or gets stenosed and clots) then we're basically right back where we are now. He said this won't damage his lung anymore than it already is. It also won't stop us from being able to do anything different in the future (like changing bloodflow for transplant, separation, etc).
The plan right now is to have Ethan go in for his cath June 18th. We'll do the cath and hopefully everything will be smooth and safe there. The 20th will be the day for surgery. He's expecting it to take pretty much all day. Hopefully it could be shorter since there's not much scar tissue where he'll be working, but Ethan never tends to have quick procedures. Ever. Even his caths take 9 hours! He expects to have a week or two in hospital for recovery. We just pray for a really quick and easy recovery! He'll have a huge horizontal incision (around 4 inches). Dr. Stewart said we'll just add it to the collection there. *sigh* Poor boy.
Please continue to keep us all in your prayers. We have a lot to do to get ready for this and still have to figure out how/how much/and what exactly to tell Ethan to prepare him for this.
I'll post up another blog post in the next day or two about our end of school and zoo trip. :)
Thursday, June 7, 2012
Sunday, June 3, 2012
Hospital stay
Ethan had another hospital stay this past week.
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. :)
A church group made these little craft bags for the kids in the playroom. Such a nice thing to do for these kids. Ethan loved making a picture for himself, then made one for Callie. :) He missed having her there to visit and play with him!
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!
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!
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