Originally Posted on | October 8, 2008 Breathing – After a d-sat (de-saturation, i.e., a reduction of the oxygen saturation in the blood) free weekend, John has had several episodes. His saturation should range from 92% to 100%. It falls into the 80s at times, and that is no big deal. But when it start hitting the 60s and below, that…
Lots of Things to Pray For
Originally Posted on | October 10, 2008 We met with the doctors last evening in our care conference. A lot of reality. A lot of uncertainty. But also some clarity in what we need to do, look for, and pray for over the next few weeks. Prayer Requests I have said before, and I will say again, that God’s will will…
Where We Are
Originally Posted on | October 15, 2008 Things get busy, so we don’t write. But then so many things happen, we don’t know where to start when we do try to write. So I’ll start where I am, in the NICU (this is from last night). John is undergoing a 24 hour pulmonary cardiogram (PCG). It is the doctors next attempt—as…
Happy Birthday
Originally Posted on | October 16, 2008 Today is John’s birthday. He is one month old. Happy birthday, John! I’ve loaded three new photos of John in the photo section. One of these shows him without any wires or tubes. It was the first time we’ve seen him since the day he was born without any tube, etc. They took everything off…
The Body of Christ
Originally Posted on | October 20, 2008 I was talking to some friends at church Sunday. Among the topics of conversation was rest: “Thus the heavens and the earth were finished, and all the host of them. And on the seventh day God finished his work that he had done, and he rested on the seventh day from all his work…
A Lot of Love at Seton & Dell
Originally Posted on | October 22, 2008 We moved to Dell Children’s today. Well, I should say that Kelly helped John move today. I haven’t been there yet. But will be tomorrow. I am taking the morning shift while Kelly goes to the Ladies Bible Study at church. It has been a while since she has been able to go. The…
Seizures, Transitions, & Routines
Originally Posted on | October 28, 2008 (This was supposed to be posted Tuesday, but it wasn’t.) John’s heart procedure (the balloon aortoplasty) was scheduled for tomorrow, but now has been delayed until Thursday morning at 9 a.m. The reason is that they need to have a surgeon on standby in case something goes wrong, and no one was available on…
The Gifts of God
Originally Posted on | October 30, 2008 John’s procedures went well. The bronchoscopy revealed no further blockages in his throat, and Dr. Nowlin said he’d outgrow the laryngomalacia. So that is good news. The balloon aortoplasty also had good results. They were able to reduce the gap in the blood pressure on either side of the valve by about 50% with…
A Recurring Pattern
Originally Posted on | November 4, 2008 John recovered well from his procedure last week. But since Saturday morning he has been having problems with seizures and breathing. The two problems are related at times, but it also appears that John is having breathing problems not related to his seizures. But it is hard to sort this all out while the…
The New Normal
Originally Posted on | November 11, 2008 Just a quick note to ask for prayers. The doctors keep upping John’s medications, but the breakthroughs of seizures appear to be increasing—even though he had increased dosages today, he still had three seizure episodes throughout the day. The doctors have told us that this means we may not be able to control them…