Stupid Shunt

Agnes was home for one week then on Monday morning early she was up to her old tricks. The overnight nurse did something like change a diaper or reposition Agnes, and she got mad. Her O2 saturations dropped and they wouldn’t come back up. We tried a bunch of stuff. She puked. We called in and they told us to go to the Emergency Department. We arrived and prompted a flurry of exciting, critically urgent care. They rescued Agnes with aggressive treatment. Agnes was admitted to the PICU. X-Ray and CT films were taken, cultures sent away to check for infections, heavy-duty hospital ventilator was fired up and Agnes got snuggled in for a inpatient stay.

We were hoping all her outpatient follow ups we had scheduled for this week would have satisfied her longing for hospital life, but she missed her favorite PICU staff. She must have heard that her favorite intensive care doctor was attending on Monday morning or something.

Anyway, to make a long story short it ended up being a shunt malfunction at the root of her distress this time. Plus a bit of an upper respiratory infection (read: a “cold”) thrown in for fun because why go halvsies when you can go all the way?

The neurosurgeon repaired Agnes’ shunt yesterday by replacing the valve and flushing out the two sides of the shunt tubing, but today it appears the problem is not solved. The brand new valve works great! The shunt is still not draining out her brain juices, though. So the neurosurgeons have three more things to try:

1. flush the distal side of the shunt tubing (the end that goes to Agnes’ heart) with an anti-blood clotting solution to break up any clots, if there are any. It is possible there is a small clot in the catheter that is preventing flow. They will try this tomorrow (Thursday) morning.

2. go to surgery to reposition the distal side of the shunt tubing deeper in Agnes’ heart so that the high pressures in her heart can not push the tubing out of place. They will try this Friday.

3. if those two solutions fail to produce a working shunt, the last thing to try is placing the shunt to Agnes’ gall bladder. This is very uncommon and has an iffy rate of success in even the more favorable patients. The neurosurgeon said he hasn’t done one of these in years. Also the risk of infection is much higher because…gall bladder. They will try this if/when the VA shunt proves a failure.

And that’s the end of the line. If Agnes burns through that short list of options we are done. There is nothing left to try on the cure-focused path and we switch by necessity to the path where we keep her comfy and manage her symptoms until she dies. We did start the conversation about hospice options today, just to start gathering information.

Jeremy and I are both very sad. Given Agnes’ history with her shunts, there is only a slim chance any of the final three options will work. There is still opportunity for a miracle, but I’m not counting on it.

Of course we remain grateful for your prayers. We are counting on them at this point. We don’t necessarily want prayers for healing; that is not realistic. Prayers for strength and discernment of God’s will would be lovely. Prayers for the doctors and medical staff who will be talking with us in the coming days and weeks. Prayers that we will always choose the course of action that will be best for Agnes. Prayers that we will feel peace about the decisions we make. Prayers that we will know it if the time comes when we must let go of Agnes’ earthly life.

Four Months, Baby

Hi everyone, sorry I haven’t given a thorough Agnes update in a while. We’ve been at the hospital every day morning to afternoon, then I have been going back for a bit after Stephen is in bed. I used to write my blog after Stephen went to bed, but now I’m visiting Agnes during that time! Well, tonight she has been very stable for the past day or two, so I don’t feel bad staying home for a change. I’m pretty sure nothing will happen tonight that would require my presence at her bedside (knock on wood?). Anyway, they will call me if they need me.

So. Agnes is four months old today! Yay! It’s hard to believe she has been around in person for four months already. I guess all the days when she is in the hospital blend together for me. I figured out that she has spent 12 of her 16 weeks alive in the hospital; that’s 3/4 of her entire life! Holy Moly.

For this latest stay, she’s been pretty dramatic. Last week after the shunt placement surgery, she aspirated some “spit up” (gross) and she is still recovering from that event. Clinically they called it acute respiratory failure, and she has been on a ventilator ever since they transferred her to the Pediatric ICU (PICU). A couple attempts to wean the settings down failed, as did a trial run on the CPAP machine. Agnes needs the ventilator for now. The docs have even started warming us up to the possibility that Agnes will need to be on the ventilator at home, too. They don’t want that to happen, and we don’t want that to happen, but at the same time, we all recognize that Agnes needs what she needs whether it’s what we want for her or not.

Agnes has improved a lot in the past three days; on Monday she was still pretty much a mess, but yesterday and today she has been comfortable, sleeping, maintaining oxygen saturations, and overall being less “touchy.” When she came to the PICU, they started dosing her with a sedative since she was so irritated and touchy about everything, and the past few days have seen that medicine gradually reduced to the point where it may stop tomorrow, or become available just on an as-she-needs-it basis. Tomorrow they will also try again to reduce the ventilator settings. They will take very small steps, and carefully watch Agnes for cues that she doesn’t like something. Caution and carefulness will be the keys.

So we’re looking at another two weeks in the hospital, at least. Since we need to go so slowly with Agnes, it will be a while before we know whether or not she will need the ventilator at home. If she does end up needing the vent, that will add at least two more weeks to hospital stay since that’s how long it takes to transfer Agnes to the home vent and get the settings just right. Plus Jeremy and I will have to be trained on the vent, and we’ll have to line up additional hours of private-duty nursing, and we’ll have to complete a 24-hour care session at the hospital. Unfortunately, the 12-hour care we did for Agnes to come home with a trach won’t count toward this new requirement. Nuts.

But none of that is even a strong possibility yet! Not even one of her doctors is willing to say, “yes, she will probably need a vent at home.” They truly do not know what Agnes will do. It’s a mystery for everyone! Now would be a good time to pray that Agnes does well with the vent weaning so she won’t need a machine at home!

The tests that will help us determine her status during the next week or two are

• a follow up x-ray tomorrow morning to look at her lungs: are they clear and open? has she totally recovered from aspiration pneumonia?
• a follow up echo of her heart, on Monday: is her pulmonary hypertension improved or the same as last week? are there indications for the one available medication for this condition? this medicine is not technically approved for use in children, so the docs have to be sure Agnes really really needs it…
• continued attempts to wean the settings down on the ventilator, and assessment of how Agnes tolerates these attempts.

Me: “Stephen keeps standing in front of Agnes.” Stephen: “Stand in front of Agnes?”

SHUNT–Update

Agnes had her shunt placement surgery this morning and everything went well. The neurosurgeon said there were no problems with her surgery, and the procedure took exactly as much time as they told us it would when we got briefed in pre-op.

Yesterday when a pre-op nurse called with some instructions, I told her that Agnes had come down with a wet cough and needed more frequent suctioning. The nurse told me to take Agnes to the pediatrician because surgery was a no-go if she has an infection. So I did and it was not fun taking Agnes and Stephen to the doctor’s office by myself, but we did it. It was good that I went because the doctor gave Agnes a green light for surgery, provided she did not become any sicker overnight. She didn’t and we went to the hospital.

After the surgery went ahead, I felt pretty relaxed. The neurosurgeon’s confident remarks about how “easy” a shunt placement is encouraged me.

Agnes went up to the same hospital floor she was on before, so we recognized a bunch of the nurses. They all remembered Agnes from before. Agnes has been rather touchy all day, crying off and on and having borderline O2 sats. This is partly because her pulse-oximeter probe keeps lying about Agnes’ numbers, but this is usual behavior for a pulse-oximeter probe. The lying sons-of-guns. Agnes tolerated pedialyte and half-strength feeds over the afternoon, but when the nurse started full-strength feeds, Agnes started puking a lot.

Apparently this is not unexpected. Since Agnes has been used to high pressure in her head, now that the shunt is draining out the fluid and the pressure is normalizing, she is suffering “low pressure headaches.” She needs to get used to the new pressure levels in her head, which will take a couple days. In the meantime she will get half-strength feeds and anti-nausea meds. Of course it doesn’t help that she has to lay absolutely flat for the first 24 hours after surgery so the shunt doesn’t drain too much too quickly. Agnes suffers from reflux and we always keep the head of her bed elevated, so she is not used to being flat. I’m sure that bugs her too, in addition to all the pokes and wires and tubes she acquired for her stay.

I’m hopeful that she will start to improve tomorrow.

Oh, and the sutures on her head are really ugly! I know they are fresh, but holy cow. A huge 3-D black line of ick with metal staples that look just like the kind you buy at the office supply store. There is a suture in her abdomen too from where they went in to poke the shunt end into her belly. On the plus side, the line of catheter under her skin is hardly noticeable. I can’t even see it, or feel it when I lightly touch. The scars will heal up, and once Agnes gets hair on that side of her head, you will hardly be able to tell she has a shunt.

I expect her to stay in the hospital for a couple nights. Here’s hoping this doesn’t turn into another long visit!

7 Quick Takes: September 6

Linking up with Jen at Conversion Diary.

Sleeping like a baby.

1. First thing’s first: I have some news about Agnes. Yesterday morning we met a representative from Aeratech, the medical supply company that will be providing all our equipment in the home. While she was showing us the gear, Stephen became antsy, so Jeremy picked him up and helped him turn on the mobile that hangs on Agnes’ crib. When the Aeratech rep left about 5 minutes later, I went to Agnes to stroke her hair and talk baby to her, and I noticed that the hose that supplies warm mist and oxygen to her trach was disconnected. That means she was not getting any oxygen apart from what is in plain room air. I was shocked. I looked at Agnes; she looked great. I looked at the monitor; it showed she was at 98% oxygen saturation. I decided not to reconnect the tube and I went to get her nurse. I showed her nurse what had happened and she was shocked. Only the day before, Agnes had clearly needed the extra oxygen. Her sats would drop mere moments after being disconnected. The doctor agreed to wean down the oxygen she is receiving, and this time it looks like it is going to stick. We were able to wean her down further this afternoon. She is getting 1/4 liter, which doesn’t mean too much to me aside from I know it is less than what she was getting yesterday: 2 liters. Maybe she won’t need oxygen at home after all. Praying. Praying.

2. Stephen is starting to tell us what he wants using actual words. It’s cute. He picked up his flashcards and said, “Cards. Cards.” Then he gave the cards to me, pointed at the sofa and said, “Couch.” Then he climbed up on the couch, clearly waiting for me to sit down with him and play flashcards. Also, I do believe he was asking for a diaper change this evening. And earlier this week when we sat down to have a morning cup of milk, he asked for a blanket. When I got one out of the storage ottoman and threw it over our laps, he pulled it up and said, “feel better.” Aww, doesn’t that make you go “awww?”

3. Another cute Stephen story, because who doesn’t like cute stories about toddlers? Today I was on the computer and Stephen was doing who knows what, but he wandered into the office with a cat puppet on each hand, holding his sippy cup. “Empty,” he said, and tried to suck out some juice. The cats. They were holding his sippy cup. One on each hand. Oh my word.

4. I have been going to the gym several times a week, first thing in the morning before anyone else is awake. But I tell you what, the past two days when my alarm rings at 5:50am, I turned it off and rolled over. I’m way too exhausted to support an early morning gym habit. Too bad that’s the only time I can realistically go. We go to the hospital in the morning, then Jeremy works in the evening, then I don’t want to exercise right before bed, plus my parent’s have been going to the hospital in the evening to train which means I have to stay home with Stephen. Will it be easier to go to the gym when Agnes comes home? Probably not, but we’ll see. Jeremy will start school in a couple weeks plus work on the side to bring in the moolah, so I’ll be at home with the kiddos most of the time.

5. Speaking of the gym, I haven’t seen many tangible results of my new exercise regime. Hahaha! “Regime.” whew, that’s a good one. Anyway, pretty much the main result I’ve noticed is a workout of a similar intensity is easier for me to do than it was when I first started. That’s good. I haven’t really lost any weight, and my mood improvement is hard to notice most days, but I can tell my cardiovascular system and main muscle groups are the tiniest bit fitter. So that’s a start.

6. Have you ever tried oat groats? Also known as oat berries? They are the whole grain of oat with only the outermost husk removed. This is what oats look like before you chop them up (steel cut oats), or run them through roller presses (rolled oats). Whole grains = better for you! I bought some at the farmers’ market a while ago and made crock pot oatmeal a couple times. It’s good. I don’t remember how I did it the first time. Last night’s recipe is superior anyway. I mixed 1 1/2 cup oat groats with 6 1/2 cup liquids (water and/or milk), plus 1/2 cup brown sugar, a dribble of vanilla extract, and a few hefty dashes of cinnamon. Cook overnight on low. Makes at least 6 servings. This morning the oats were a lot softer than when I made it the first time. I liked it better today, and Stephen liked it today as well. He didn’t like it when I made the oatmeal a couple months ago with a different recipe. I recommend. I bet this oatmeal would also be delicious with some raisins or other chopped fruit stirred in at the end.

7. Have you ever seen the movie Hot Fuzz? Oh my gosh, it is the best. It’s basically a parody of an action buddy cop flick, but with really good acting, dialogue, compelling characters and plot, and a surprise twist or two that are actually surprising. I can’t even tell you how much I laughed the other night when we watched it. There is some bloody violence (hey, it’s a murder mystery) and coarse language, but I wouldn’t say the language is gratuitous. Plus, Bill Nighy has a minor supporting role!