Wednesday

Luke had a great day. Weird that even babies in the ICU sometimes just need some Tylenol for teething. Poor guy. Resting now. I'm about to head out. Still on for Monday as the big day!

Tuesday

Luke is on the surgery schedule for Monday! Please pray that we can keep this baby healthy and infection-free until then! PS - he sat up and played for a solid 15 minutes this morning without getting fussy! Love it. And he's getting a PIC line this afternoon.

Thursday

... is excited to see her little boys beautiful eyes and smile today. And has family coming in!

Monday

Luke is movin' and groovin' today. He's having a really great day. The docs are changing lots of little stuff (meds, feeds, vent settings, etc) because he's doing so well. They haven't decided if they will do another heart cath, but they are going to postpone surgery for as long as Luke can tollerate it (3-6 weeks?). Luke won't be able to go home until after surgery, so we're here for the long haul.

Sunday & Monday

Please pray for Luke's kidneys. They haven't been able to rid his blood of the toxins like they need to. We're told that sometimes this happens with kids on the medications Luke has been on. If his numbers aren't better tomorrow, we may be facing dialysis again, only a type more invasive than last time. We need your prayers--it feels crappy to get hit with this so soon.

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Turns out that Luke's doc isn't quite so worried about his kidneys as we thought. We still definitely appreciate your prayers, but it doesn't look like dialysis is on the table at this point. We'll continue to watch his numbers and pray that his kidneys catch up to where they're supposed to be. We're looking at surgery hopefully next week, and maybe another heart cath between now and then.

Saturday

Luke pretty well kicked his infection. Please pray that he can stay infection free until surgery in 1-3 weeks! David and I are settling in for the long hall and praying it won't be as long as the first time. Luke's still sedated and sleeping, though he opens his eyes a tiny slit every once in awhile. I miss holding my little baby.

Friday

Luke even better this morning. They've weaned his oxygen down to 50% (from 100) and is using almost no Nitric Oxide. They've also weaned way down on his blood pressure meds. His sats are low 70%s and HR is 110s. His chest x-ray looked beautiful this morning. He's so much better, that they are going to try allowing him to wake up today. Just a little while longer before I see those baby browns! It's a good day.

Thursday

Luke is substantially better today. A blood transfusion and some extensive suctioning has enabled the docs to wean down his oxygen and nitric oxide and Luke's still satting high 70%s. Heart rate and blood pressure are very acceptable. I think we're on the road to getting better but nobody's making plans for scheduling surgery yet. Luke's still sedated and paralyzed. I miss my baby boy's smiles!

Wednesday

No huge change from yesterday, although Luke's x-ray looks better (pneumonia's slowly clearing) and they have weaned some of his meds. They're keeping him extremely sedated and paralyzed to give him the support he needs to get oxygen to his body. We're waiting on God's timing and resting in His love.

Monday, Part II

Luke had a much better night and is having a good day so far. o2 sats are much better (80%s!). It looks like he's gotten through the worst of the pneumonia-like infection. We don't know when surgery will be rescheduled for, but probably 1-4 weeks away. Please pray that we can stave off any more infection so he can recover his strength for that time. Prayers of thanksgiving for Luke's improvement.

Monday

We've had a much better night. Hopefully this means that Luke is getting over his infection.

Sunday

Luke continues to get worse. Intensivist has him on some pretty hefty doses of heart medicines and antibiotics. Thankfully an ECHO shows that his heart function is still okay, buying us some time to kick this infection. Bad news is if Luke gets sicker, there's no more room to give him more support. We're resting in the Lord, waiting for his timing.

Saturday Night

Luke took a turn for the worse during dinner. o2 sats continue to drop. They put him back on Nitric oxide and are going to give a blood transfusion to try and get as much oxygen as possible out to his body. In another case, they would probably rush him to surgery, but doing so while Luke has an infection could very likely kill him. So we're on God's time, waiting for his answers.

Saturday

Luke had a really bad night last night with fever and bad o2 sats. It looks like he caught an infection. Cultures should come back late today or tomorrow to be sure. They will probably delay surgery about a week if it's bacterial, about 3 if it's viral. Please pray that God's timing reigns in this situation.

Friday

Luke's heart rate jumped from 130s to 170s this morning. Thankfully a big bolis of Amiodarone has slowed it to 150s. Doesn't look like there's an infection, so we're still on track for surgery on Monday. Probably Luke's heart is just starting to work extra hard. He needs this surgery asap.

Thursday

Last night we couldn't Luke's sats above 60%s. We even saw some 30%s and 40%s. Dr. Kao told us to take him to the PICU, so Luke spent the night in the hospital. This morning the intensivist told us that they have put Luke on the surgery schedule for first thing this Monday morning. We're relieved to get this show on the road, but anxious for surgery. Thanks for your prayers.