Lori Kietzke Oehlhof uploaded a new video.
Feng Yu is rocking his physical therapy. He is such a social guy and loves getting out of the room and playing with other toys and of course the therapists! Last night the family visited and we all played bingo and had dinner together in the cafeteria!
Today he had the pic line removed and more freedom with approval to leave the picu with just mom! And no machines! Earlier in the day we just roamed the floor but this afternoon we ventured to p5 playroom!!! All by ourselves!! Love the nurses but sometimes it's just nice to be alone with your children.
The action plan is for discharge soon! He needs to keep chest X-ray clear. Eat a little more. 2/3 of his calories have been coming through Iv but as of tonight he's on his own. Pray for his appetite to rebound. Pray for his body to be stabilized on all his oral medications. Can you believe this miracle???? How awesome is our God we serve???
Feng Yu is rocking his physical therapy. He is such a social guy and loves getting out of the room and playing with other toys and of course the therapists! Last night the family visited and we all played bingo and had dinner together in the cafeteria!
Today he had the pic line removed and more freedom with approval to leave the picu with just mom! And no machines! Earlier in the day we just roamed the floor but this afternoon we ventured to p5 playroom!!! All by ourselves!! Love the nurses but sometimes it's just nice to be alone with your children.
The action plan is for discharge soon! He needs to keep chest X-ray clear. Eat a little more. 2/3 of his calories have been coming through Iv but as of tonight he's on his own. Pray for his appetite to rebound. Pray for his body to be stabilized on all his oral medications. Can you believe this miracle???? How awesome is our God we serve???
Lori Kietzke Oehlhof at Sutter's Ridge Family Farm
Day 28 update! Making great progress towards busting out of here. Joseph's chest xray looked really good this morning. They will do a more complete x ray in the morning with his standing. We are reducing his IV meds and transferring to oral heart meds. All his lasix are oral at this point. His oxygen was removed today and he is holding around 95-96. He will never be at 100% due to his leaky mitral value that has some mild regrugitation that mixes blue/red blood. He is considered a 1 1/2 ventricle repair, which is as good as it gets for him. A perfect heart for him! He is getting a bit antsy and irritated with being in the hospital (so am I) Pray for him as we get through these last few days. Pray that he will continue to improve so we may go home within the next few days!!! Nobody has officially mentioned it, but pray it's close so these kiddos can get back to "normal" life!
Never know what might they might try to do to me! Joseph has prepared himself for battle! In true Situs inversus fashion he is sporting his new shirt backwards. It's the best way he knows how to do things.---flipped, inside out, rotated, twisted, opposite just a few adjectives to name his anatomy. And as his shirt say "Jesus loves the little children of the world , they are precious in His sight". He was created perfect in His sight. We are so fortunate to be named his parents. What a joy and blessing!
Lori Kietzke Oehlhof added 3 new photos — with Ryan Oehlhof.
Chest tubes are gone!!!! Pray pray pray we do not have them return. The plan for the next few mornings is to watch for reaccumulation of fluid and reinsert if necessary. Pray his body continues to absorb the fluid and his lymphatic system evens out. The surgery on Friday at this point looks to be successful! Ryan and I were treated to a date courtesy of the hospital last night. Tickets to the Overture Center. First time for us! What a treat! Thanks to grandpa who picked up the other five kiddos from the hospital, took them home and put them to bed. And we will never forget the fine nurses who take diligent care of Joseph. He seems to get extra attention if I'm out of the room.
All done! Things went well. A few good things to report. His cardiac pressures are better than expected. His nerve in the diaphragm that was damaged has been restored! Amen!!! The placation surgery two weeks ago allowed him to breath these two weeks without support and now the nerve has regenerated! So wonderful! Now the infamous chest tube drainage.... They clamp the tube during surgery to allow a pocket of fluid to form. Then they place the new tube in that pocket of fluid. During the five hours no substantial fluid formed. Therefore no drain tube could be placed. The old tube was removed and now the hope is he will continue to absorb the fluid through his lymphatic system rather than leak out into the plural space. If this procedure works we may be onto a great solution!!!!! Pray this is the case and there are no complications from today's procedure. The picture is from our special visitors last night.
Update: They started a little before 10 am. A catheterization was added to the plan this morning, which I was in agreement. Confirmation that his anatomy is doing well puts me at ease! His caridac pressures (15) were better than expected (20's) but still higher than prior to surgery (7-8). Good news for him! FYI a normal child would be around 3. Feng Yu is still in procedure for the thoracic duct embolization. The dye has made it's way upward and they are plugging the hole (s). The needle goes straight through the abdomen (with ultrasound guidance) and the hole is sealed with basically medical super glue. His cardiac surgeon was even in awe of this technical work! What a gift to be afforded this delicate medical treatment. Thank you Lord for all these hands working on Joseph! He should be back in the room within a couple hours.
The days continue to mount as we reside in our new home away from home. Today is day 24. Not that I'm counting! We do have a new plan of action. I like action better than waiting. I am not a sit around kind of person. The plan at the beginning of the week was to let his chest tubes drain on their own and hopefully dry up. We were giving them another week. But over the last two days he has gone in the wrong direction with drainage output actually increasing out of the left side! Today the plan was to change his tube out that is getting irritated and infected looking. They were prepared for the procedure this morning but the placement and fluid area was too risky between the lungs. So onto plan B for the radiology interventionists to attempt placement tomorrow. In addition they are going to do a procedure called thoracic duct embolization to help decrease the amount of fluid draining. Procedures are set for 9 am.
Feng Yu got a little spruced up in the hospital today. Tomorrow at 7:30 am he will have one of his chest tubes changed under sedation. Dr A will be doing it. The current tubes have been in for 23 days and the one is getting sore and irritated. Drainage was at 430 for the last 24 hours. Slowly making our way there! Eating is marginal- consuming less than 10 grams of fat a day for a diet is really boring! He continues to have a good attitude and enjoys getting out of our room for walks or rides. Pray for successful and uneventful procedure in the morning.
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