I honestly think optimism and pessimism are hardwired. I feel very lucky to, for whatever reason, almost always have a filter of seeing what is good in any situation. I am so grateful for that ability, especially now. I also think part of why my marriage to Laura works so well is that she has the same philosophy.
We realized that there are 2 silver linings to this most recent development. First, we are SO lucky that this infection presented before we went home. Everyone here has said that it's inevitable for a Broviac to get infected at some point, and that usually kids that go home with one end up presenting in the ER with a raging infection because it takes a few days for parents to notice something is wrong. So we caught this early. Also, even though it will be sort of crappy for Shimmy to have regular blood draws the old fashioned way, it's way better for us to have the Broviac removed than risking it getting infected again. So, Shimmy will go home with no IVs!
The second silver lining is so great. They have been holding Simon's feeds since last night because they want his gut to have a chance to chill out. Today he started getting really fussy and Laura stuck her finger in his mouth. He immediately chomped on it and started sucking. Laura asked for some Sweeties (sugar water) and he went crazy for it. One of the cardiologists was nearby and Laura's sister, Jen, asked her if we could try a bottle. They normally would have wanted to hold all his feeds because he's going to have his Broviac removed soon but she said we could try Pedialite. The kid sucked down 40 mLs! He has had a really major oral aversion for the last 8-9 weeks and the one thing we were pretty worried about in terms of going home was his lack of interest in eating orally (he has a tube that feeds him right now). He's been sucking on a pacifier all afternoon which is so crazy because he abruptly weaned himself a long time ago.
So, when we go home, we'll have an almost totally wireless kid and an eater!
They will put in a Subclavian central IV line tomorrow but for right now he has a good IV in his arm that they can use for his meds. Infectious Disease docs want them to wait as long as possible to reduce the chance of the infection not being totally killed and recolonizing the new central line.
Update: just had a great Celebration of Life dinner celebrating Laura's 12th anniversary of her near fatal motorcycle accident. We had 2 of our hospital friends plus 10 of our "Framily" come which was very sweet.
Simon had his Broviac removed without incident.
Also, my Mom had an incredible conversation/session with her friend Louisa Teisch who is a priestess of Oshun in the Yoruba tradition. Teisch said a lot of incredible things and clearly was "talking" to Simon. She really thinks he's going to make it and she is a very powerful oracle, so I'm going to go with that. She also said we all need to tell him, in our own ways, "We want you to live, we want you to live, we want you be here with us, please decide to stay.” It looks like he has, but he keeps clearly having to decide so let him know we want him to stay.
Simon and the ocean evidently have a connection, so if you have a chance, go to the ocean and send your blessings and requests for him. She also said 7 dimes are something important for him, so if you come, feel free to bring 7 dimes. Really, we're not trying to get our medical bills paid! She also said he is Yemaya's child.
He's on his 3rd bottle of Pedialite right now. Each one is 40 mLs and Laura joked that he's drinking a "40". We're pretty much always able to have a laugh over here, which is quite a blessing.
All seems well in bed 7 and hopefully this setback is actually going to end up being a boost in some way.
Over and out.