Today was a GREAT day for our little family! We just got the results from Owen’s big adventure to the bone scan and the trip was worth it! The results are NEGATIVE!!! We have one more test on Thursday to get a better idea of the type of mass and that it is in fact only in the abdomen! They are doing all they can to diagnose the mass with minimally invasive tests to avoid him going under anesthesia and go through surgery. His next test is one week from today. It feels so good to have a positive outcome from this test today. This is the first time in a while that he has “passed” a test. Jeff and I weren’t really sure how to take the news when we first heard it. I think we were both waiting for the all too familiar “but” that follows any good news.
So I guess I will share the “but” of the day. Unfortunately, his lungs are hazy again and they do not believe that it continues to be related to his fluid balance. He has expelled almost all of the excess fluid and he is back down to his birth weight. He looks so tiny. The doctors believe he may have chylous. Chylous is a build up of lymphatic secretions in the lungs. It is passed through the blood stream during digestion. They are testing to see if this is what it is by putting him solely on a high protein low fat formula and seeing if that clears up his lungs. They will be discontinuing all breast milk. If it does appear to be chyle, he will have to be on that formula for atleast 6 to 8 weeks. it will either work itself out on its own or it could require a chest tube to drain the fluid in the lungs. Part of us hopes that it is chylous so we have a diagnosis that can be treated. It’s so hard to sit back with so many questions. Each day we have been given more and more questions related to Owen’s condition. It would be so refreshing to get some concrete answers so he can be cured and we can all go home. Today is a month since I have been in LA and we are unsure when the light at the end of our CHLA tunnel will be.
In regards to his noggin, they did a cranial ultrasound earlier this week and the ventricles in his brain are moderately enlarged. They will be doing another head ultrasound next week to see if the ventricles have retained additional fluid. Neurology would like to do an MRI but his CTICU doctor does not believe he is stable enough for the scan. The swelling does not appear critical at this time and is secondary to Owen’s current status. They will continue to monitor it closely and will be prepared with the proper intervention should the need arise. We will be meeting with the heads of all departments in a week or so to best determine how to proceed with Owen’s care. They are just awaiting the results of the last few tests.
Lastly, big win for Daddy today! He changed his FIRST of many diapers! It’s so hard to help with all the wires and iv lines but he got in like a champ and even helped the nurse change his blanket!
We have been so blessed by the amazing staff at CHLA and feel so much comfort knowing that he is in the best of care. We are falling asleep peacefully tonight because of all of them!
Matthew 11:28 “Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.”