We still take life day by day. Planning for anything is almost impossible, because we have learned those plans are easily foiled. Drake can go from having coarse lungs to clear lungs in no time flat; however, it can flip the other direction from clear to coarse in a snap as well. Out of the blue last week, he began battling tummy issues...This was definitely a new challenge! He took a drastic change from his usual constipation to loose bowels. I stayed in close contact with his pediatrician throughout the week as we tried to determine the cause of his issue. He never acted like anything was wrong, but the problem continued. I took him into see the doctor on Friday where she ran a full panel of tests, bloodwork, and cultures. Everything came back normal. “In Normal Ranges”...How is this possible? She switched him to soy feeds and we decided to lengthen the time he receives his feeds over an hour. I actually had to go out to the garage to get his kangaroo feeding pump because it has been so long since we have used it, and it required quite a bit of cleaning! So far he seems to be tolerating this change very nicely. Even Brian was pleasantly surprised when we arrived back from the pediatrician and it was not going to involve another hospital stay.
Just the thought of another unknown issue was enough to make me feel uneasy. On my drive back from the grocery store after another Pedialyte run, I drove just past our house down to the lake. I was only down there for a few minutes, but it was a few minutes of me time that I needed. I prayed for healing. I prayed for answers. I prayed for the health of our little boy.
We traveled to Dallas today for Vent Clinic! Drake received an outstanding report...kind of a “What were you so worried about, mama?” His lung x-rays looked the best I have ever seen! We are going to be increasing his time off of the vent, as long as he tolerates it well. Also, they will be scheduling him soon for a sleep study to ensure that he does not have any sleep apnea. He has been approved for a Passy Muir Valve, which will allow him to start making noises (hopefully) and it will bring back his sense of smell! This valve can only be used while he is off of the vent and his trach cuff is deflated. I’m sure that I will have more to report about this in the near future!
Brian and I took Kennedy to a family reunion over the weekend with Brian’s grandmother’s side of the family. All of the needed elements for a successful family reunion were in place...Food, Family & Fun! I always enjoy seeing the friendly smiles and familiar faces at every reunion! They have all made me feel like family since day one. Kennedy absolutely LOVED all of the other children who were there! After the reunion, Kennedy even found a chair fit for a little kid at Great-Grandma & Great-Grandpa’s house! She found lots of other things within reach that were not for toddlers, too!