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William was able to come home from the hospital Monday evening.

sick days:

He is doing well, active and playful, but still has significant wheezing and rattling in his chest. CF test came back negative, so that's a plus! We still have a few other tests to complete in the next few weeks.

feeling better:

Thanks for all of the prayers and concern for our little William. He's such a great little guy! I am thankful that he is held, safe and secure, in the Lord's hands and that there is nothing that happens that is not only in His control, but in His purpose and plan. Though I am surprised and caught unaware when things like this happen, He never is.

"Many, O LORD my God, are thy wonderful works which thou hast done, and thy thoughts which are to usward: they cannot be reckoned up in order unto thee: if I would declare and speak of them, they are more than can be numbered." Psalm 40:5

Update

William is looking very well! I only have a sec to update so I'll just give the low-down.

To look at him, you can't even tell he is sick. However, his lungs sound gross and his x-ray looks terrible! The doctor and the nurse were both very surprised when they saw the x-ray. It is hard to believe it is that bad when you see this happy-go-lucky child. The respiratory therapist was amazed at how good natured he is and how he just takes it all in. Anyway, here's what we know:
Cardiac size is normal. Both lungs are hyperinflated. Pneumonia appears in the right mid lobe, along with what appears to be old pneumonia scarring throughout. Opacity (dark spot) in the right lobe which they believe represents chronic atelectasis. The crude explanation of this is that it is a blockage in the bronchioles which prevents air from getting down to the alveoli, which causes the alveoli to collapse. He also has a chronic post obstructive change.
William is responding well to treatment. I believe the IV fluids are a great benefit to him right now. He is also on an antibiotic and steriod through IV and another antibiotic orally. Unfortunately the two conditions do not respond to the same types of antibiotics. They will remove the IV around 2am and begin the 2nd antibiotic orally. If he continues to thrive off of the IV, they will possibly let him come home tomorrow. They are also going to try to run the sweat chloride test tomorrow instead of Tuesday. We will have some other testing later on if that comes back negative. Apparently there are a few issues that could result in these types of symptoms. So I guess the testing is back on...

"This is what the LORD says— your Redeemer, the Holy One of Israel: 'I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go.'" Isaiah 48:17

Admitted

They decided to admit him as he has a pretty serious pneumonia (again). Fortunately, I think we caught it very early. He just had an x-ray on Tuesday and there was no pneumonia. The x-ray tonight (last night - I don't know anymore) showed a significant, yucky case. We'll see what tomorrow holds.

ER

Unfortunately, the breathing issues did not stop with the Vest like I had hoped. William is panting and his ribs are pulling in when he breathes. Michael has him at the ER now so we are just waiting to see what happens. Appreciate the prayers.

Patience is a Virtue

Take a good, hard look at this face. This is the face of a real trooper. Tuesday morning started off like most: we completed all of our morning tasks preparing William for PT and we were off. We met with one of his PTs and an orthotist to discuss some different bracing options. Together they determined that we would need an x-ray of William's hips before we proceeded with more bracing. Then we headed to the pulmonologist, without lunch, for our 11:30am appointment. I'll just say that after spending 3 and 1/2 hours there, grabbing a very late lunch, then waiting another 1 and 1/2 hours for the lab/x-rays, William was a much happier camper than I was. Anyway, we did learn some valuable information.

William's lungs are much worse off than even I suspected. We have now changed some treatments as follows:

Old therapy

Well days - VEST 2x daily, 20 minutes each

Sick days - VEST 4x daily, 20 minutes each and nebulize each time

New therapy

Well days - VEST 4x daily, 30 minutes each and nebulize each time (before breakfast, before lunch, before dinner, before bed)

Sick days - VEST 6-8x daily, 30 minutes each and nebulize each time, possibly with a second medication in the nebulizer each time (medications can't be combined in the nebulizer, so this will be additional nebulizing time) and a third oral medication

It was stressed that we must protect his lungs. There are several things to start with, some of them we are already doing, but some that we will have to incorporate.

Since we were already doing the lung x-rays, we called the doctor to go ahead and complete the hip x-rays as well. I tried to take a picture of one of them, but it is through the door and you can see the backyard in the back. I think it is still clear enough to see that there is a definite issue. I don't know much about that yet, but should be learning more in the days to come.

As frustrated as I can get sometimes, here is what it takes to make my sweet little boy happy:

Simply waltzing with Mommy while singing, "I could have danced all night..." He loves it! It reminds me of how Jesus told His disciples that whoever did not receive the kingdom as a child would not enter in. He wasn't saying that we had to come to know Him when we where children, but that when we come to Him it must be with a pure heart, trusting and loving, just as a little child trusts and loves his parents faithfully. I pray that God will take my heart of stone and make it as trusting and pure as that of my little boy's.

"Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein." Mark 10:15