T's finally home!! C said a lot of nurses waved to T as he was wheeled out. T was grumpy and didn't swallow much barium for his upper GI scan, but I guess it went well enough. He fell asleep on the way home. I'm so thrilled to have his smiling face home!

T continues to do well with the new antibiotic. But he's not coming home today. Coram couldn't send a nurse out to our house today. There's a shortage of pediatric nurses. A nurse has to show us how to administer IV antibiotics. Never mind that C's been handling T's Broviac for months and the nurse showed me how to administer the IV antibiotic today in the hospital. A nurse has to show someone at home. Apparently it was acceptable for a nurse to show me, and then I'd explain it to C even though I wasn't sure that my movement disorder would let me actually do it. It's a crazy system.

But the pump we'll get at home is different than the one at the hospital. The pump has a few buttons and you program it with the dose and the rate. Anyone who has programmed a microwave and can do simple math can operate it. In addition we already have a pump at home a feeding pump that works the same way. The pump was never an issue for me. What was an issue was how I was going to give T IV antibiotics without jerking, spilling or contaminating his Broviac. It seemed impossible. Fortunately I was wrong.

The pharmacy will give us premixed doses of the antibiotics. And I myself pushed saline into his Broviac and hooked up the pump with the antibiotic, and then flushed it with Heparin. The hardest part for me was figuring how to twist the two ends together. At first my jerking hands really couldn't quite get it. They were twisting away and I was worried I'd drop the Broviac cap and have to start sterilizing all over again. Then I realised that if I did drop it, I'd just have to wipe it with alcohol again. No big deal. The second time I also realised connecting a syringe to the Broviac was not a gentle process. You basically shove the connector into the Broviac to open the valve, then you screw it on.

So I'm comfortable going home with T now. However I'm sure our insurance wouldn't cover any of his followup care if we just left the hospital against doctors' orders. So he's staying at another night at the hospital Hilton. Another few hundred dollars billed to the insurance. T's working his way up to be a million dollar baby.

C or I have to be at the hospital tomorrow at 7:30am to get T's final discharge instructions. Then rush over to admitting and get him checked in for an Upper GI Scan at 8:15am. The intern thinks this is possible. We'll see. Then we have to be back by 2pm for the home health nurse.

When I met the intern, she had newbie written all over her face; the deer in headlights, dazed look of someone who's trying to deal with far too much information. The new school year just started and T was one of her first cases. T was a good first case by Saturday when she started working on him. He has a lot of stuff to keep track of. Yet he's no longer seriously ill and the only thing new about him from a doctor's POV was his antibiotics. I knew she'd have to get approval for any changes she made, so I could feel sorry for her. Today she looked more relaxed. She had survived the barrage of T information and had almost managed to get him home.

Torin might be going home tomorrow....again The docs have decided not to send him home with Amikacin the troublesome antibiotic, because they can't get a therapeutic dose after 3 days of trying. So they're switching him to a different antibiotic, Meropenem which doesn't have to be tested for dosage and doesn't need to be combined with another antibiotic. I asked the resident why they hadn't switched him before. She claimed that the Oncology doctor didn't know Meropenem was effective against Enterobacter cloacae, the bacteria that infected his Broviac.

C did a google search on it and the info wasn't good. I took a look now and E-Medicine article's info on mortality and bacteremia(infection of bacteria in the blood stream) was particularly scary. But he's doing great now!

When I was backing out from the garage on Friday, I banged the passenger side mirror into a pole. Normally the mirror bends if you hit the mirror going forward, but as I was backing up, it couldn't and smashed. Is it bad luck to break a car mirror? What do you think? The cover also came off. I was very annoyed, mostly because it has to be repaired within a few days. Just one more thing I have to do. The glass of the mirror (albeit safety glass) has shattered and the electronics to move the mirror are now exposed. The pole also made a large cream coloured scrape on the passenger side door. I won't fix that. It'll be a wonderful souvenir of T's latest hospital stay. And the wonderful garage. The garage with tiny spaces marked "compact" that SUVs park in, because the spaces not marked compact are usually full. And yes, I banged my more-compact-than-an-SUV Passat in a compact space.

Even if Torin gets discharged tomorrow, I'll still visit that garage many more times this week. I have to take Little T for various medical apts on Tuesday, Wednesday and Thursday.
Here's his schedule:
Monday - Renal ultrasound and consult with doctor (probably going to be done in-patient)
Tuesday - Upper GI Scan. No eating for hours = crabby Torin
Wednesday - OT apt
Thursday - GI Clinic

It makes me exhausted just thinking about it. Maybe tomorrow when he's actually home, I'll feel better about it. Or he'll still be inpatient, so I won't have to take him to his Tuesday apts. I'll still have to park in the garage though.

Little T might be going home tomorrow! It depends on if the doctors can establish a therapeutic level of antiobiotics tonight. He gets the antibiotics at 1am and then it takes time for the blood results to come through, so we won't know until tomorrow morning. Knowing how these things go, it could easily get pushed back. When he had RSV, every day we were told he'd go home tomorrow, and a week passed before he went home.

He'll go home on IV antibiotics. That means C has to inject antibiotics into his Broviac. It seems a bit intimidating to me, though C has been taking care of his Broviac for months. When Little T went home from the NICU, the doctors were very adamant that all his drugs be given orally at home, even though he had a Broviac back then too. I guess we've graduated to IV and this means we're veterans now. That makes me feel both pleased and sad. Or maybe they're just desperate for beds.

His new ward is a double ward with two doors that has 4 beds. 3 of the beds house babies including T, and a nurses' station is in the middle, so it's quite noisy. I feel sorry for the lone little girl who's stuck with 3 baby boys, but at least yesterday and today she seemed too sick to care. Little T continues to look great. His blood levels have bounced back, so his white blood cell count and platelets are all normal now.

I've just about finished my piece for Brain, Child. It's grown to 3000 words. As with a lot of my writing, it started out dense and intense at 1500 words and has gradually lightened to something more humorous though still dramatic. It's almost done. I'm happy with it I just need my friend Jenny to read it and comment on it.

I also finally finished a first draft of my children's book. I read it to Special K. She sat on my lap the whole time I read it. That's something, because sometimes she wanders off when I read things on the screen. It flows. I can see illustrations in my mind when I read it. But it still isn't done yet. It doesn't have the life in it that my Brain, Child essay does. I guess I need a bit more distance from this latest hospital round. Though being in the hospital was useful for describing the sounds of the NICU.

Youch I just noticed the time. Good night.

I discovered that T is in Immediate Intensive Care. He's going to be moved yet again to another IICU room. This will make the 6th room he's been in since he was admitted on Tuesday evening. Oh, well he likes the ride. The one he's now is primarily for patients with neurological disorders. I said I could stay there then, except I've never been hospitalized for my myoclonic dystonia. His new room will be for patients with more general issues.

At least he's moving within the same unit, so they won't have to rewrite all his orders. Each time a patient moves to a new unit, they have to get new orders from the doctors who are in charge of that unit. So when T moved from the Hemo ward to the ICU to the ICCU, he had to get new orders and this was all within 24 hours. When orders get rewritten, things get left out like last night, the orders left out 150 cal of his formula. That's 150 cal out of 670 cal.

When my sister Saskia and I got to his room, he was smiling and cooing and kicking his legs. He moves around a lot more now. He does his best to rip off his wires. He generally gives the impression that he doesn't belong in the hospital. It's hard to believe how sick he was 24 hours ago. Though if he can move up that quickly, he can also go downhill fast too. So they're continuing to monitor him closely.

We had to leave all too soon so S could catch the train and our nanny could go to her other job. Unfortunately S probably missed the train. Our nanny wants to visit Little T this weekend. Isn't that sweet?

I worked with S on my piece for Brain, Child. She had some editorial corrections and some really good comments and questions. I'm reaching the point where I'm ready to submit it. I want to show it to a couple more people and then I'm done.

I'm waiting for K to wake up, so we can go visit T again.

When I got to the hospital, C told me that not doing well meant that his fever spiked and he started shivering, and his blood pressure plunged. First his feet started turning blue, then his body turned this mottled color. The resident put a bag mask on him and started puffing. C said she looked overwhelmed. Then she said "I'm going to call a code. And all sorts of people are going to come in. Don't worry." She called the code and some people rushed in. C thought "this isn't that bad." Then more people rushed in and filled the room. They put oxygen in him, and a drug to increase his blood pressure and he stabilized.

Sadly we saw a slightly less severe episode on Tuesday morning. Obviously we didn't know his blood pressure had dropped, but we both knew something was horribly wrong. I was about to call 911 when his colour started to return. I don't think this made it any less traumatic for C since he saw the whole thing again and it was worse. But looking at T lying sleeping peacefully, it made me feel better because he came through that time on his own and worse, because I could imagine it pretty clearly in my mind.

It's funny how I'll say "Oh I think it's a viral infection." or "He just misses his doctor." but then my actions reflect the actual situation i.e. that this is an urgent life-threatening situation. Like I called the Hemo clinic and spoke to his doctor who said to give him ibuprofen and wait an hour. Then called back after he turned blue and left a message. The nurse who heard the message understood what I describing and said "Based on what you said, you need to take him in right now." But his doctor didn't hear the message and said I could take him to the Hemo clinic or his ped. I was very clear that I wanted to take him to Hemo, even though if it was just a viral infection, he should go to his ped.

There's a part of my brain, the mother intuition part that understands exactly what's going on. But it doesn't tell the other parts, because it would make it very hard to remain calm and do what I need to do.

C and I both just read Blink, which describes how people "thin-slice" i.e. make a judgement based on a very small set of initial data. The nurse "thin-sliced" based on my phone message And I definitely "thin-slice" with my kids and act on it even if my more conscious brain is telling me otherwise. I didn't even know that I was deciding whether or not to call 911 until I talked to his hemo doctor yesterday. And if I had dialed 911, I'd have found myself calling with no conscious thought whatsover.

I spent the entire day with him. I didn't get home until almost midnight. He's definitely weaker and more pale, but he kicks his legs a lot more now. He used to just lie there and scream. He slept a lot. I tried to prevent him from playing with his Broviac and his monitor wires. We played some games of peekabo when he was awake and he played with his toy.

The Hemo/Oncology doctor who's responsible for the unit came by and said the words "out of the woods" "life-threatening" and "sepsis". I'm not sure if they wait to use the words "life-threatening" until after the crisis is over, or I just don't hear the words until afterwards. I think it's the former, because it's obvious that if someone's in intensive care that they have a life-threatening condition.

At 11pm he "graduated" to the step-down unit, which still has a 2:1 nurse to patient ratio, and is still intensive care, but not quite as intensive. But first he got transferred to a treatment room, because they ran out of beds. The nurses said it must be the full moon, because they suddenly had 3 unexpected PICU cases.

His minimum stay has been extended to at least a week.

C's at the hospital now and says Little T started smiling again. Of course this is a guy who smiled in the ER when his Kasabach Merritt Syndrome has returned. But still it's a good sign. I'm exhausted and supposed to be resting, because we have learned from hard experience that we have to take care of ourselves when he's in the hospital, or we get sick. But I did want to get this all down first.

When we went in, we found out that the blood they drew from his Broviac was infected with gram negative rod bacteria. His doctor said it typically comes from poop. She ordered a blood sample drawn from his body and they'll culture that as well. If it's negative then just his Broviac is infected, which she says is pretty easily resolved by removing his Broviac. Easily meaning a minimum of 3 days in the hospital, but up to 7-10 days if the bacteria doesn't respond well to antibiotics. If it's positive, then the infection's in his entire blood system. I think that's called sepsis and is life threatening. But I'm not sure. I haven't asked, because I don't want to know right now. For me, "maybe" and "I think" is easier than "yes" and "I know" when it comes to life-threatening. I used to think differently until T was born.

T's a "tough draw". The first lab assistant tried twice and dug around in his foot and then hand as he howled. I've had nurses dig and it really hurts! He's a lot stronger and louder than back in January when they last inserted needles before he got another Broviac. So I rejoice and cringe at how hard he kicks and screams. Then two lab assistants came as a team. After a lot of prep and some digging, they managed to draw only 1 cc of blood, barely enough for 1 culture and they're supposed to do two types: aerobic and anerobic. But the positive for the Broviac was only in one type. I forget which. So they can probably get away with just doing one.

C stayed the night. C and Little T had a rough night. T's blood pressure keeps dropping and he's not doing well, so he's being transferred to the PICU(Pediatric Intensive Care Unit). K's a little sick herself with diarrhea, so we probably shouldn't take her to the PICU. I'm waiting for our nanny to arrive so I can join C at the hospital.

T's angel doctor just called and said "I have bad news. The blood culture taken last night has bacteria." So he's going to be admitted to hospital for the 5th time. They're going to remove his Broviac as well. We're waiting now to hear which ward he'll be admitted to. He just doesn't look that sick. It's so weird. Please pray for him/send healing vibes.

Little T woke up screaming last night with a fever of 102. C had some problems with his Broviac the day before, so he called the hematologist on call who told us to take Little T to the ER. I stayed home, because it was 2am and K was fast asleep. Sadly we've been there a few times, so one of the residents recognised Little T. When they first took his temperature, it was 104. Yet it took them two hours just to draw his blood to see if he had an infection. Fortunately his white blood cell count was normal, so he probably just has a viral infection. Three hours later he was sent home. I'm sure the ER folks did their best. It's not their fault that our health care system is so broken that the ER is the only health care you can get at night.

I had to take him to the Hematology clinic today, so I cancelled K's playdate with one of her preschool friends.

As I drove there, I found myself getting angry at the gods. I had just started to relax about T's medical issues. I'd start to feel he didn't need my vigilance, because he was getting better. I started focusing on other things like his therapy, his feeding and my writing. And like a kick in the gut we have to go to the ER again.

It's not fair, I want to say. But then life isn't fair. I told myself the ways that life isn't fair that favour me. Like the fact that we have good insurance with no lifetime limit. The fact that his hospital is within easy driving distance. And we can afford a house in this area. We have one healthy child. And somehow C and I manage to get through most of this by supporting each other and continuing to build the foundation of our relationship, instead of chipping away at it.

I realise part of my anger stems from the fear that by focusing on my writing I somehow created this problem. Then another voice, a very sardonic voice says "Well, Thida your life has always been busy with a flair for the dramatic." And a thought flits by that perhaps if I created more drama with my writing, say by actually publishing something, it might crowd out T's medical drama. It makes as much sense as my fear. So I'm going with it.

As soon as we got to the clinic, he started looking better. Maybe he just missed his angel doctor. She examined him throughly and even cleaned his ears. She took a throat culture and ordered another blood culture. He screamed throughout then fell asleep and has been sleeping most of the time since. In fact he's sleeping on me now.