Smiles to Light up the Room
Greetings to everyone.
Xavier is back on his oxygen for the moment. Rebecca returned the pulse oximeter to Apria today. They will extract the data and send it, along with our log book, to the pediatrician for analysis. We should learn tomorrow whether Xavier can "go native" and ditch the O2 support and all its baggage (baggage quite literally as well as figuratively!)
I will say the smaller tanks are so much easier to carry around, but even easier when no tanks at all!
One of the amazing things Xavier has shown us recently is his smile. He started practicing these a few weeks ago, but they were infrequent and definitely in their "infancy stage" (no pun intended).
Over the last week, we have seen these on a near daily basis. It is wonderful to watch a smile overcome him: His face relaxes, his eyes brighten, something of a "subtle, happy glow" characterizes the full of his face, and then...
...his mouth smiles. More often than not, the widening of his smile brings his mouth to open with what might be described as a prelude to laughter. It's really quite warming! You almost hear his silent, elated giggle as he happily looks up at you.
Thank you all for your prayers and your support.
Air, As God Intended
Greetings to everyone.
Today was Xavier's physical and developmental baseline. The therapists came over and observed Xavier. They said he is doing well, everything is right on track where it should be and they didn't need to see Xavier again for six months.
They spent most of their time focused on Rebecca instead of Xavier, asking her questions. "What is a typical day like?" "What did you do yesterday?" "How did that go?" etc. The line of questions raised the hair on the back of my neck, and it struck at Rebecca's confidence, though I don't think they meant to. We will see if their continued counsel proves useful or a stumbling stone. They are going to see Rebecca again sooner than six months.
Later in the afternoon, Xavier paid a visit to a respiratory therapist for a pulse oximeter study, the "room air" test. Instead of doing the test ("we don't do those tests here" we were told), they gave us an oximeter (we had just returned the one we came home from the hospital with during this same appointment). So, we came away with a new oximeter and and sheet of instructions and a little "log book" so we could do the test. I guess that certifies Rebecca and me as respiratory therapists; have oximeter, will travel :)
As a side note, we did get a supply of new oxygen bottles, much smaller bottles! The lady at Apria said she didn't understand why they gave us the larger tanks to begin with. So, Xavier can now go mobile with O2 tanks half the size as his old ones. That is a step in the right direction; managing the larger tanks was frustrating on many levels.
When Rebecca brought Xavier home, she wasted little time removing the cannula and the adhesive stickers used to hold it in place. For a few hours, and the the first time in his life for so long, Xavier knew total freedom from tubes and wires! We even brought him outside for a few minutes so he could breathe in the fresh air of his new-found (and hopefully permanent) freedom. He got to breathe air as God intended!
It was so wonderful to carry Xavier around the house with us and not have to lug around another ten pounds of awkwardly shaped equipment, always worrying about tripping over the cannula tubing. He got a tour of the house, but he did not seem that impressed. He did seem to be far more happy with not having a cannula attached to his face; he acted more comfortable. It's not hard to imagine why.
Later, we broke out the oximeter and the O2 probe and attached it to Xavier's foot. This was a more difficult process than last time because he has grown so much and his feet are much bigger than four weeks ago. Not daunted by this, Rebecca found a way to make it work!
And so the logging began. The oximeter records all the data. The log we keep will explain what was happening at what times. This will put the data into its proper context. For example, he desatted to 71 at 8:34. That was when he was crying at being awakened to have the pulse ox sensor attached, and he complained about it for several minutes. The saturation level rose to 95 as soon as he settled down, so we noted that in the log. This was our evening late into the night.
We decided to leave the oximeter attached to Xavier all night (we really want to ditch the O2 as soon as possible; if a few hours on the meter in the evening was good, then all night should be better). We kept our eye on him through the night. His O2 saturation levels remained in a good range, generally the low 90s. The oximeter has an alarm set to go off if his saturation levels rose too high or dropped too low. Also, we learned in the NICU how to observe a "blue" tint to the skin, so we knew what to look for if the meter missed it.
Thursday morning, Rebecca will load up the oximeter, connect Xavier to the (smaller) O2 tank and visit Apria again. Apria will download the data collected by the meter and send it, along with our log book, to Xavier's pediatrician. They will analyze the data and let us know if Xavier can go to "room air" (I guess Rebecca and I are not traveling respiratory therapists after all, just meter mules). We think Xavier will pass and graduate to "room air".
Always, thank you for your prayers. God breathed the breath of life into Adam, so He certainly knows how to get Xavier to breath rightly on "Earth's air."
No Biopsy Needed!
Hello to everyone!
In case you did not hear the roar of our praise to God, which may have sounded like thunder to those outside of Colorado, Xavier's liver biopsy has been cancelled! Glory to God. Hallelujah!
Rebecca and I felt strongly Xavier did not need one, and were it not for the pressure of him reaching three months old (which is the age limit surgical correction of bilirubin atresia shows benefit), we would not have consented to having one done. But Father was on the case and took care of it for us. Thank you, Jesus!
Xavier's direct bilirubin count, which rose to 3.17 last week, dropped to 1.5 according to yesterday's blood tests! That is about a 50% drop from last week, and the lowest by far since we started following this metric in very early June.
We cannot contain our joy! PTL! Xavier will continue to be monitored closely via weekly or bi-weekly blood tests, and a diagnosis of the problem is still on-going. But no needle between the ribs and no one-inch by 1/32 inch of liver tissue removed.
Also from the blood tests, Xavier is cleared of a genetic defect called Alpha 1-antitrypsin Deficiency. The A1AT is a protease inhibitor which protects the elastin in the lungs. Problems in A1AT production lead to respiratory complications such as emphysema, or chronic obstructive pulmonary disease, and cirrhosis. This was one of the issues the doctor discussed with us yesterday.
Awesome is our God! Thank you all for your prayers.