If you know much about Brinkley, you know he is stubborn and quite determined to do things his own way in his own time. (Anyone follow the apology standoff a couple of months ago?) This hospital admission has been no different.
We checked in dark and early Monday morning for his heart cath and we've been here ever since. The cath went well and they ballooned his right pulmonary artery. We were admitted for observation overnight. In the process, we found out that there were some issues that had arisen with the OR and surgeon's schedule so we were on standby for surgery. It worked out that we were able to get an OR and have the surgery on Wednesday (the original plan was Thursday). Surgery went well and as planned. He spent the night in the PCICU (Pediatric Cardiac Intensive Care Unit). He had some episodes where he would scream out with pain and squirm around like he was trying to get relief from the pain. This happened periodically over the next few days with most of the episodes being through the night. (Very little sleep was had by anyone.)
We determined that these seemed to be related to the fact that he had not pooped since Monday. The gut may have already been irritated and full when he went into surgery. The fact that he is so small and the GI tract is so close to the area where they were working made it feasible that he was having severe gas pain. Add that pain to the pain from the incision (C-section moms you know what I'm talking about) and it was a recipe for disaster. At the same time, his incision started draining (clear fluid not puss). The thought was that the pressure from the gas pains may be causing the drainage.
We started a protocol to remedy the poop standoff. Apparently, Brink's GI tract is just as stubborn as he is and things have not moved very quickly even with interventions. Yesterday we finally got a little poop and we've been more than 24 hours without a pain episode. However, the drainage has not stopped. It does appear to have drained less in the last 24 hours, but it hasn't stopped.
The head of cardiology and the attending pediatrician are both pleased with his progress on the general side of things and are ready to send him home. At this point, we are waiting on the surgeon to feel the same. Our surgeon is not on duty this weekend so we've been seeing his partner this weekend. We should see him tomorrow and hopefully get a better idea of what to expect.
For now, we will continue to wait for some more poop action and the drainage to stop. In the meantime, big brother is enjoying the beach. Brink's a little jealous (mom too)!
Sunday, April 9, 2017
This morning I came across a video that I have seen posted several times on Facebook. This time I actually took the time to stop and watch it and read the accompanying article. It was so timely for both myself and the friend that had posted it. Take a minute and check it out:
This is me. This is so many of the wonderful women that I have met over the last four and a half years. You may think you know what I deal with on a daily basis and you may think you understand how I feel. Unless you have walked this journey you have no idea. Until you've stood before a medical team and made literal life and death decisions about your child and spent weeks and months in the hospital you can't possibly understand the burden that we bear. Even as a hospital mom or a medically complex mom, we've all traveled different roads. We may not know the intricacies of each diagnosis but we have an undeniable bond that others will never understand.
No matter the decisions that we face and the endless doctor visits, hospital stays, surgeries, and medical procedures I would dare say that most of us agree that we have been incredibly blessed. I know that sounds ludicrous to most people. How can all of this be a blessing? First and foremost, look at the incredible miracle that we get to love and hold in our arms each and every day!
Second, as Christ followers, we get to see God's hand in tangible ways that others may never experience (or pay attention to). God reveals Himself to us in ways that we would not have understood were we in any other situation. So many times we walk in Abraham's footprints and lay our children down trusting that the Lord is faithful and will do what he has said. We wait for our ram and we see miracles happen for us and/or in the families around us.
Third, we have each other! I wish I had the words to explain to you the incredible blessing that it is to look at another mom and see it. You don't even have to say a word. You can see it in her eyes. She gets you! She gets it! Our stories may be different but our hearts are the same. Her child may be primarily dealing with neurology while I'm dealing with cardiology, but we get it! I have met some incredible women over the last few years. They get me, inspire me, and challenge me! Some of them I've met at the hospital or through other parents. Many of them I've met at our therapy center. While our kids are getting their physical, occupational, and speech therapy we get a little therapy of our own. I look forward to those days each week knowing that, even if for just a short time, I can just be me! If no other time, for those couple of hours that day someone truly understands and gets me. I love my support system and look forward to those days all week. You ladies know who you are and I love you and am blessed and proud to call you friend!