Being home is so amazingly wonderful. Jeff and I have worked very hard for home to be a great place, a fun place, a loving place, a soft place to fall and a place to be your best. We have (since being married) never been apart for so long. Life definitely was out of balance and at times felt completely out of control. In the two days that I have been home we have worked at getting the groove back into our lives. It will take some time and there are yet more adjustments that need to be made, but we are all just happy to be together. Jeff and I were hugging in the family room and Jeffrey came and got between us. "Squeeze me really hard," he said, and we did. "Now, THAT is what I'm talkin about!" he exclaimed. We couldn't agree more.
Andrew caught a cold two weeks ago and it seemed to hit his chest pretty hard. One day he was coughing and the next he was wheezing hard, starting to run a fever, and "pulling" to breathe. (When he pulls, you see his ribs he is working so hard.) Since he is little, this wins a direct admit to the hospital. We started aggressively treating the breathing problems, and he was responding well. We all thought we would be there 24-48 hours and then home. This was Tuesday the 29th. He was progressing and his virus screens came back negative, so we were not dealing with RSV. His chest xray showed bronchiolitis (sp?) - which is basically a chest cold, but no pneumonia.
Trouble started when Thursday night he spiked a fever of 103.8. He looked awful, his color was bad, his breathing was labored, and he was generally miserable. He was hooked to a monitor and oxygen. The fever would come down with medicine (tylenol and motrin) but would spike every 6 hours. You could almost set the clock by him. This went on for 5 additional days. This is when tons of specialists got involved. His blood work was fine which indicated it was viral, but all agreed that his symptoms seemed more bacterial, so the hunt was on for the source of an infection that may or may not be there.
His fever finally broke Monday night. We had not found an infection source, and his blood work remained good. His chest xray had not improved, but had not gotten worse either. At this point we all agreed it was viral. The problem was now he was a week worse, not holding down his feedings anymore and was continuing to lose weight. The breathing medicines that he was taking gave him temors and he was not able to rest without being held. He was exhausted.
We ran the GI (gastrointestinal) tests to make sure that the virus had not uncovered an underlying anatomical defect due to the Downs and to make sure he was not having reflux that was ending up in his lungs. Another lung xray showed some improvement. We backed off the breathing medicines, and the tremors stopped. He was starting to rest and finally starting to heal. Now we just needed time.
13 days later we came home. He lost over a pound of weight. He is tolerating his feedings, but is still very tired. His color looks better and his sweet smile has returned. We saw the doctor today who is pleased with his progress. We are keeping him on oxygen because (1) he needs it and (2) it might help him heal faster. We check in with the pulmonologist next week (the lung doctor) and see our pediatrician the week after that.
So, those are the facts that we have been dealing with for the past two weeks. We have delt with the facts, but the emotional toll is now starting to show. Blake and Brantley have been terrors today, and the doctor said to expect more of that before it gets better. Jeffrey seems to be a champ, and is obviously pleased to have us all under the same roof. Jeff and I are still reeling from it all. We feel a bit like war survivors - me in the hospital war - Jeff battling for sanity at work and the home-front. So, we are all resting, and all healing, one day at a time.
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