Psalm 27:13-14
On Thursday, July 26, we took Caroline back to Children's Medical Center ER. Caroline had been progressively getting worse requiring more oxygen and night and newly needing it during day time naps. She was also struggling when she was eating (gulping & squealing). Getting back to the ER is a whole other story in itself. We had major issues with the scheduling personnel at the pulmonary clinic for which we were apologized to by hospital administration (and given some mints and free valet tickets)! At the ER we saw Dr. Rodriquez (ER doc) and Travis (Resp Therapist) again. We felt very blessed to see them again because they remembered Caroline and knew her history. Caroline was breathing 108 breaths a minute. I dare you to try to do it - its her unique special trick! She was considered to be in moderate respiratory distress. Dr. Rodriquez almost immediately told me we would be admitted. After four painful IV sticks, Caroline finally got some calories via the IV and we were admitted. She was not allowed to eat almost all day because she was at such high risk for aspiration. Apparently when you breathe 108 times a minute its hard to swallow down the right tube. Caroline was put on 4 L of oxygen support, more than she had ever been given, and after a few hours, her respiratory rate slowed down and her oxygen saturation level stayed where it needed to be. We asked Dr. Rodriquez if he had made a final diagnosis (jokingly). He said he believed we were looking at a primary lung disease. Her chest x-rays could be read as normal but when you look closely and consider everything, she clearly had a primary respiratory problem. Dr. Rodriquez stated that the pulmonologist agreed with him.
Although we were sad that we had progressed from "reflux" to "lung disease" over the course of just a few hours, we also felt as though we were given answers that could provide a clear direction. We also felt the providence of God because Dr. Mann, one of Caroline's pediatricians from her previous hospitalization, saw Caroline's name come up on the admission request, so she requested her to be put back in her care. By 4pm, we were in a room - a bigger one from last time and ready to stay the night.
Dr. Rivera, a pulmonologist, saw Caroline the next morning (Friday). She explained the lung diseases they were considering and told us we could expect to be in the hospital for a few weeks to 1 month. They believe Caroline has a type of childhood interstitial lung disease which is a group of rare lung diseases found in children. Caroline had blood drawn and that blood was sent to an outside lab to be tested for surfactant deficiency. For more information, see: http://www.child-foundation.com/childrens-interstitial-lung-disease/surfactant-mutations.
The pulmonary team is also considering a different type of ChILD, NeHi. For more information, see: http://www.child-foundation.com/education/NEHI.
Both disease are rare. Neither are considered life threatening. Both are treatable.
Since being here, we have learned a lot about both possible diagnoses. The pulmonary team here is consulting with the nation's experts on these types of diseases. They are in Denver, CO. Currently (as of 8/1/2012), Caroline is very comfortable. She no longer needs oxygen support all day - just when shes sleeping. She is still giggly, playful, happy, and stinkin' adorable. Today she had an impedence probe placed in her stomach via a small tube down her noat and into her throat. This probe is looking at her reflux which is a symptom of both diseases and can become worse with oxygen support.
This probe is hooked up to this little machine box that we use to mark when she coughs, eats, sleeps, or has increased respirations. It is quite stressful trying to hit a little button every time she coughs, and she is still struggling to get used to the feeling of having this tube down her throat. She will have this for the next 30 hours, meaning mama has to watch and record her every little movement.
Sometimes I feel pretty alone in this. Caroline has become such a part of me. I am the only one who knows what each little noise means, the differences between her cries, and if she seems to be working harder to breathe. Sometimes I get very frustrated because of this - feeling a lot of weight and pressure. Today I have to remember, I am soooo not alone. I am never alone, just like Caroline is never alone.
The first or second night we were hospitalized during round one, I was having a hard time going to sleep. I started to pray but before any words could even come out, I heard God say, "Brittany, I AM." I imagined Jesus in a physician's coat right by Caroline's bed and everytime I began to worry it was as if He didn't allow those thoughts to process. Instead I heard Him say, "Brittany, I AM."
Thank you God, that You are the Great I Am. You are the creator and sustainer, and all things are from you, through you and to you. When I doubt or am tempted to be overwhelmed with my circumstances, remind me that you are the I Am. The same yesterday, today and forever. The great and mighty One who calls Caroline by name. You care for her far more than the birds or the flowers and they never worry about their next meal or what they will wear.
And again...
"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
Psalm 27:13-14
What an inspiration you are Brittany! When my husband left this Earth, I could not praise God. I walked away for five years, and I have just recently turned around. You are such a strong person to hand everything to God!
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