We have been home for a week now and life is ... busy.
Basically Thursday and Friday were about doing some normal family bonding time things. We spent the days opening presents people had sent, reading the cards, playing the new Wii games, etc.
Saturday, Manny had a fever. It came and went over a few hours. Sunday afternoon, the fever was back. But this time it stuck around. No other symptoms and I know this is a bad sign. I decide to wait 24 hours and see if it gets worse/better. No change.
Monday we headed to the ER. After numerous hours there, Dr. Cartaya (the Hospitalist I mention over and over) wanted us admitted and started on IV antibiotics. He told the ER doc that and then went home for the evening. But by the time the staff could see us, it was a new ER doc who had not gotten that message. He reviewed the initial labs and sent us home saying it was likely a cold or flu or viral thing. (Does that sound familiar? If so, it's what the hospital told us on Dec 1 before calling us back in on Dec 2 with a positive blood culture.)
But I wasn't going to argue. I went home and slept in my bed. And nervously awaited the results.
By Tuesday morning, he had some new symptoms. This assured me that (likely) he did have something viral and was not septic (again). Late wednesday night, one of my friends from the hospital looked up his blood culture and called me saying it was still negative! Yippee. (phew) Strange to feel soooo happy to "just" have the flu.
The next problem was that Tuesday and Wednesday, we were struggling to keep this cold from becoming pneumonia. He's on meds, etc. But his muscles are just so weak that it's difficult for him to clear his secretions/cough. It just kinda hangs out and can fester. We have tons of machines and meds to help with that. So far, so good. I know the signs of respiratory distress and even have machines to monitor it. And he's managing.
Thursday, went to the Primary and she agreed, no need to go to the hospital unless he gets worse. (phew!) I can tell you, I literally had my bag still packed for the hospital and in the trunk. Tonight, I got it out! (Still packed, but in the house now... that's improvement.)
And where do we stand with his feeding? For now, he is still eating via the PICC line ... the vein in his arm. The plan is to keep him on that line until the line stops working. At that point, we will go into the hospital, have it removed, do a blood culture. Wait 3 days and then do the Broviac (the more permanent line in the chest). The 3 days of waiting is to make SURE there is no line infection this time when we put in the more stable line. So we know there will be a hospital stay and surgery in the near future, we just don't know when. Some PICC lines work for weeks, some for months. It's just a wait and see so we can spare as many veins as we can for him.
And I've contacted Shands in Gainesville's GI team again. They are still stumped with no new ideas about tests to do, etc. for getting him back to enteral feedings. Ugh.
Meanwhile, during this week, I'm having a personal health challenge. (And no, I still haven't gotten to the dentist ... working on it.) Because it's of a "personal" nature, I'll just leave it vague and ask for prayers. I could use a healing from the complications and the pain. I do not have health insurance and really do not like the options of the medical way of treating it. But I do need to be able to be healthy enough for my family. They are counting on me.
And the last piece of news for this blog ... while at the doctor's office today for Manny, I asked the primary about Kaley's blood tests. You see, she has a policy of running some basic labs for the 12 year old check up. (Incidentally, that's how we got Jacob's diagnosis last year at his 12 year old check up.) I figured she would have called me if anything was wrong ... but it turned out, there was something wrong with the bloodwork, it just wasn't an emergency and the doc figured a few weeks wouldn't change her outcome.
So ... we're not exactly sure what is going on yet but there were some concerning labs. She gave me the script for more specific tests and we'll be doing those over the next few weeks. I hesitate to share the thoughts at this point until we have more info. But suffice to say, she needs prayers too!
And that brings me to my emotional state. I'm in over my head. You know the stages of grief and loss? Well, I vascilate between denial and anger. I'm so stinking upset. I believe in a God who is full of healings and physical manifestations of that still occurring today. I've SEEEEN it! So what is this? I'm not the paranoid type, yet it seems like an attack on our family. I'ts nuts. And I don't like it. I'm not angry at God, exactly. I'm angry at the whole situation and the "here we go again" feeling.
Sure ... you could tell me that we knew this. Or we signed up for this. Uh, no we didn't. When we adopted Jacob, we knew he was on the autistic spectrum. We knew he'd been exposed to drugs. We had no clue that 12 years later, his kidneys would start to fail. etc etc . And it's no different that a person who births a child, raises them for say 17 years and then finds out they are a drug addict or has some kind of brain tumor. They didn't know that either.
Being a parent (whether it's via birth or adoption) is hard. We sign a blank check. We deal with what comes. And I'm just saying ... that in my life right now, it's all coming at me pretty quickly and I'm getting knocked over by the waves. I still know God is good and God is in charge. I would just like to be able to stand up and catch a breath before the next wave hits. (But that's not happening.)
So ... if you're wondering how we're doing ... we can still use all the prayers you've got.