Things are not going well.
Actually, things are getting bad pretty fast.
I've known for about a month now that this time wasn't one of the times that my little man was just going to "bounce back." He's too sick... sicker than he's ever been. For about 2 months now, he has been laying in the same position, and not doing much of anything. He has had major anxiety issues (which I think we FINALLY have under control, thank you God). And in the past 3 days, he has spiraled downhill even more so.
He has started to swell... (hands, feet, head, scrotum, lips, eyes... you name it). He has WELL over 4+ pitting edema in his hands, feet and head. His poor little swollen hand can't even hold his Elmo anymore (I'd rather you cut off my legs than my baby not be able to hold his best friend, Elmo). The swelling is not a good sign. It's called "third spacing." This means that water is leaking from his blood vessels and collecting in the tissue areas between his cells. This is usually caused by an electrolyte imbalance or the inability of the organs to function properly (which we think he could have both, or it could be from something else, we have no idea). Dr. Defusco came to the house yesterday. She spent about 6 hours with us. She was there through his entire bath and then stayed after to discuss things and just talk. She's so amazing- I can't say enough great things about her. Seriously, I wish every doctor cared about their patients like she does Tripp. It's very admirable.
Dr. D doesn't think Tripp has much longer to be with us. And seeing after seeing what he looked like yesterday and today, I have to agree with her. His poor, sweet body is so tired. The swelling is new- he's never been swollen like this before, ever. He can barely even muster a smile to tell us "yes" or "no." It's so sad. I'm so sad. I knew keeping him at home would be hard, and it is. But I also know that it's a decision that I will never regret.
He's throwing up with anything I put in his stomach- so she also wants me to slow down on his feeds. She thinks that at this point his little body doesn't even feel hungry. But as a Mommy, I can't make myself just stop feeding him... unless I'm doing more harm than good (which it's coming down to now). That will be a decision that I will take literally minute by minute. We ask him if he's hungry or thirsty very often... and he is still somewhat able to tell us yes or no with a little smile or a head shake.
He is SUCH a fighter... sometimes I wish he didn't think he had to fight so hard.
He's so incredibly strong.
He is also having trouble regulating his body temperature (which is a sign of the electrolyte imbalance, perhaps an overwhelming infection, and/or his immune system just shutting down). His little extremities are so cold. And his temperature has gotten as low as 93.7 degrees. That's a huge and fast change from the fevers he has been running in the past few months.
Within the past three days, I think we have finally found a pain/anxiety medicine regimen that is working for him. I can finally say that I think he is as "comfortable" as he's going to get. He is sedated enough not to constantly cry due to anxiety but is still able to hear us and know what is going on. Yesterday after his bath was the most comfortable he's looked in months. Even during bath was better considering how bad he looks and is feeling. I'm so grateful. He's been sleeping well at night and I'm not having to suction him as much because his breathing is shallow, but very easy and comfortable right now. That is specifically what I've been praying to God for every night- peace in whatever form He can give it. Now I'm not saying that it won't get worse, because I'm almost positive that it will. I don't know how long he can hold on like this. I just pray that we can keep him this comfortable until it is time for him to go to Heaven- whether that be days or weeks. And I pray for him to be able to pass as peacefully as possible- at home- in his comfort zone- with the people who love him- where he belongs.
Thank you all so much for your continued support and prayers. Please keep the prayers coming, as we need them now more than ever. If you like to pray for something specific, please pray for PEACE... for Tripp to have peace from everything causing him discomfort.
I am so thankful for my faith at this time.
I often think about moms who have lost children (or anyone who has lost anyone for that matter) who don't believe in God or in Heaven. Do they wonder where their children are? That must be the worst, most awful feeling. I'm so grateful that I am certain Tripp's soul will be in Heaven and that one day I will see him again.
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away.”
What a promise, right? No pain, no mourning... just me and my baby boy- EB free. I can't wait until that day. I have been reassuring him that it's okay for him to go home to Heaven.
I tell him that Mommy loves him so much and that I am so, SO proud of him.
I tell him that in Heaven, he will never hurt again and he will be able to run, talk, and play like a normal little boy.
I tell him that there will never be a day that goes by that I won't miss him with every fiber of my being.
I tell him how many people (like you guys) love him and that he has done such great things just by being alive.
I tell him that I promise him that I will be the very best person I can be so that I can meet him in Heaven when it is time and give him the biggest, tightest hug he has ever had.
I tell him that he has made me a better person for the rest of my life.
I tell him that he is the strongest boy I'll ever know.