End of Day Monday Report... 3 weeks old! - John

Monday Report

Day of life 21…

21!!! 3 weeks old officially, today!

Kyle had a good day today, in spite of developing an infection last night. Most of the day was waiting, and watching. There was an echocardiogram follow up test this morning. They were looking at Kyle’s blood clot and PDA valve.
We waited for a long time, and sometime around the 6:00 hour, Kelly (the NP)
(nurse practitioner) came in with a smile and said, “it didn’t even say marginally,… it just said SMALLER.” HUGE PRAISE! The blood clot in Kyle’s heart is smaller!
What a great thing God is doing.
All day, Brandi (his primary nurse) worked with Kyle and his vent. Kyle was doing great at about 35% oxygen. His blood gases were looking pretty good all day, and he pooped twice! YAY! There we go with that excitement over poop thing…. I feel like jr high ministry all over again… His urination also improved a little today (which is what led to suspicion of infection when he stopped going #1…
He even did the typical little boy thing … when you take off the diaper,… there he goes. He managed to mess up his bed that way, and we didn’t get a good measurement of his pee. Not very nice for poor Brandi who had to change that bed. : )


Our main concerns right now are as follows:

PDA valve still open a little – interesting dilemma here because he has had 2 rounds of the medicine that should close that valve. (it is, from what I read, the equivalent of an aspirin - in small dosage of course)… The next step would be surgery to close it.
This sounds scary, and it is, … but, they say around the NICU that it is a common procedure. Our problem is Kyle is too small for the surgery. Dr. Lopez, (who is great and we really like her care for Kyle) is not comfortable with the surgery on Kyle till he is a little bigger. If this PDA would close for good, this could help some of Kyle’s respiratory issues… speaking of that…

BPD – this is dealing with Kyle’s chronic lung disease that we know he suffers from.
This also deals with his ventilator. One problem here is we need the vent. Right now, it is really helping Kyle, but it also hurts him. It scars his lung tissue, damaging it, further irritating and causing worse BPD. (I think this stands for Bronchial Pulmonary Displaysia) don’t hold me to that long word.) The other big issue is the tube for the vent that is going down Kyle’s throat. It is leaking, causing a need sometimes for higher oxygen numbers than necessary for Kyle. The tube that is providing respiration for Kyle right now is too small for Kyle’s growing esophagus, but the tube that is the next size up is too big for his small esophagus – so we have to wait and deal with the tube size as is LEAK and all… this isn’t great… in the course of an hour, he can have as little as a 20% leak, and as high as a 90% leak… YIKES. This means higher O2 to help keep Kyle saturated (or oxygenated) appropriately. Higher O2 for long periods of time are necessary, but also damaging. It can cause a disease called ROP dealing with the Retina of his eyes. This can lead to vision problems, even blindness. The other thing we have to watch is Kyle’s saturation (oxygenation)… if he doesn’t get the oxygen he needs to his body (brain) this can be just as damaging to his development and his brain as the bleeds in his head.
Infections: This is no good for any baby, much less a baby born 17 weeks before he should have been weighing in at a beefy 1 pound… We continue to pray protection for Kyle against infections.

IVH Brain Bleeds: We think this is behind us now barring some unforeseen, unusual circumstances. We landed at a bilateral grade 3 on both sides. Could be better, could be worse. The Doctors both don’t think Kyle has developed PVL from these bleeds. (I have no idea what this acronym stands for… I just know we don’t want it.) This is a good thing that they don’t see PVL. The blood appears to have organized and is on it’s way to being re absorbed back into Kyle’s blood stream. We have to continue to pray that as it reabsorbs, that it doesn’t obstruct any spinal fluid flow. We pray that all blood and spinal fluid would have free flow to do what it is they need to do in Kyle’s body.

All in all, today was good. We are here. Kyle is 21 days older than they expected, and God is doing a great work. I meet new families everyday. My heart hurts for them and the struggles their little guys and girls are going through.
As you pray for Kyle,… please also pray for:

Tyler and Marshall.

These two little guys are in need of God’s supernatural touch as well.
Pray for Tom and Borra, and Phil and Jeanna. These are the parents of these little guys.

We keep praying for God’s healing touch on Kyle’s little body, …
His heart, his lungs, his kidneys, his stomach, his brain… his whole body.

Thank you for journeying with us. It is a marathon. I know…
It is so great to read your encouraging comments, emails, … hearing your voicemails, prayers,… and seeing you at the hospital. Thank you for all of that. It means a lot to Kelly and me.

More later.