After 19 days at Texas Children’s Hospital, we were released yesterday and brought our precious daughter home. Praise God! The relief at walking through our front door, not having been home since we left for the Emergency Room so many days before, was overwhelming. Campbell took one look at her cats, who greeted us at the door, and yelled “Meow!”.
Campbell came home on one medication for blood pressure, as well as aspirin (short-term) to prevent clotting after her surgery. We will monitor her blood pressure several times a day. We follow-up with the renal doctor in a few days to report the blood pressures (which have been pretty good so far), and will return for a visit at the beginning of next week. I would be lying if I said I was not terrified to have her at home. It hit me last night as we were unpacking her blood pressure monitor and preparing to take her blood pressure for the first time, that we weren’t just home from a long vacation, that something was different. We would continue to ask for prayer as Russ and I learn this new role in parenting Campbell.
While it is obvious she is happy to be home, to see her cats, and to play with her toys, Campbell does show some signs of trauma. She is scared to be left alone, fearful of her bed, her highchair, and just terribly clingy in general. Russ and I are taking things slowly, asking God for guidance, and attempting to get her back to “life as normal”. For the most part, she is as happy as can be. Ironically, as soon as we got home she dug through her toys and pulled out the blood pressure cuff from her doctor kit. She has spent the better part of yesterday evening and today putting that little cuff on everyone and everything (me, Russ, her babies, stuffed animals, the cats, herself, her milk cup…). The counselor in me is fairly certain she is simply acting out what she has been experiencing so frequently for the past few weeks.
As far as Campbell’s long-term treatment, much of that will depend on how controlled her blood pressure remains. She may stay on the medication and dosage she is on forever, the dosage may need to be increased in the near or distant future, or her blood pressure may indicate that her arteries need to be reexamined. As she grows, her arteries may grow with her and her need for medication diminish. Or it might go the other way and she may need additional surgeries to open up the same or other arteries. Through the use of ultrasounds, the arteries can be monitored less invasively if her blood pressure indicates a need.
While nobody imagines anything being wrong with his or her child and while this new lifestyle is definitely something we are having to settle into, as we pulled into our neighborhood yesterday I became overwhelmed with thankfulness that we were bringing her home at all. On that first day, in those hours between the emergency room and the PICU, I kept imagining the heartache of coming home without her and seeing all her toys and books in the living room, all her things all over the house, and her not being there. I will never stop being grateful for where God has brought us.
Thank you to all of you who have walked this journey with us. For the visits, calls, texts, emails, food, cards, packages, and prayers, Russ and I are so thankful. The support of the people around us has been invaluable during these past few weeks and has often kept us going. It is our hope that we would be a blessing to the people around us, as so many have surrounded us and blessed us when we needed it most.
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