Although Caroline was released by the surgeon 23 hours after her surgery, we ended up staying another 2 nights. Caroline wasn't eating well and had a lot of congestion. We found out on Saturday afternoon that the blood panels from the biopsy showed that she had rhinovirus, a cold. This explained her congestion and lack of appetite. Caroline received IV fluids for another 12 hours and then she began eating well again. We were released Sunday afternoon to come home.
Caroline is still tender around her incision sites but overall she is doing very well. She gave her grandad (Jimmy) her cold, but she is recovering from that pretty well too. We are thankful that she has not developed a fever and the cold has not really worsened her existing condition.
The pulmonologist called today with the preliminary pathology reports. Because the pathologist is not a lung pathologist and interstitial lung diseases, especially those we are looking at, are so rare, he does not feel comfortable making a certain diagnosis. He told our pulmonologist that it does look like NeHI to him (there are too many neuroendecrine cells in the interstitium, the pathway from the air sacs to the red blood cells) based on the control he has. He does not have an exact age match to compare her lung with so he is sending the slides to the expert pathologist in Denver to make the final call. In short, it looks like NeHI, and nothing else, but she won't have the official diagnosis (or not) until later this week.
There are only 500 current cases of NeHI worldwide. In all the cases diagnosed so far, no treatment for the rapid breathing symptoms has proven helpful. Oxygen support is required variably for each case but they all "outgrow" the symptoms by age 5. This disease was just characterized and named in 2005 so long term effects are not fully known, but current case studies show zero long term effects.
All in all, we feel relieved. If the expert pathologist confirms that Caroline does have NeHI, we can rest assured knowing what is going on and that she will out grow it. We will have to be diligent to not let Caroline get sick but she will be eligible for RSV vaccinations in addition to the normal immunizations.
We are still on a journey with God and grateful to be through this part of the wilderness. We know for certain God has taught us so much through this and we are different because of His work and His goodness. We are truly blessed that the disease Caroline seems to have really is manageable and all talks including words and phrases like, "progressive," "life expectancy," and "lung transplant" are now off the table. We are fully aware that many of the families we met at the hospital and through other blogs cannot say this. We do not pretend to have words for them, but instead we commit to pray for them. We know God has the whole world in His hands, even the little bitty babies.
We sing this song with new meaning:
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Copyright Matt Redman, lyrics to "Never Once"
Stay positive, your strength is so refreshing!
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