Saturday, April 28, 2007

Sleep update

Wren is now off iron and back on Zantac. He slept very well on the first night post-iron and acceptably on the second. The third night he couldn't stay asleep or even get to sleep which is very unusual for him. He kept waking suddenly and we heart him gulping and making wheezy noises in his throat.

I put him back on Zantac 24 hours ago and he slept much better last night (4 hrs, 3 hrs, 1 hr). It is still not long enough but I think once we iron out any underlying problems we can work with setting up a better sleep routine and associations.

I am still reluctant to put him to bed at 8pm until he sleeps reliably for 4 hours at a time. Otherwise I miss out on his long sleep and last week was becoming completely completely unhinged. Some nights I wouldn't get more than 90 minutes at a stretch and started getting insomnia between his night-naps. This wasn't working.

So, we are back to a later bedtime with a routine, zantac, no iron and need lots of good luck.

Friday appointment update

On Friday I took Wren to Children's Hospital for an ultrasound study of his leg veins. They were looking to see whether there was any reason for his still swollen left leg.

It turns out that the culprit is his ileac vein. After the cath we were told that it was blocked and had collaterals thus preventing access for the cath procedure. Somehow, this fact didn't make it to file and so the ultrasound people were concerned when they saw this occlusion. After reviewing the file they said that the vein is completely blocked and the collateral is probably providing some resistance so the leg does not drain as well as before. He is likely to have a slightly larger left leg all his life.

This is a common complication when veins collapse after a procedure. In Wren's case it was probably caused by one of the lines used during his first surgery when he was a newborn.

They said they also see babies with swollen legs after vaccinations "all the time" and guessed that since the swelling became noticable after a vaccination that the swelling was exaccerbated by this new assault.

In future all shots should be in the right leg... or rather NOT in the left leg.

I am waiting to talk to Dr Lewin about possible remediating treatments. He mentioned elevating the leg but I am not sure how to do that in practice.

I feel a bit sad for Wren. Unlike his heart, this is something that his body got right but it was damaged in hospital. I hope it becomes less severe over time or we can do something to improve it.

Thursday, April 26, 2007

Another night

Last night Wren slept better than before iron but not as well as the night before. He slept 3.5 hours then another 3 hours before subsiding into his light sleep and liking to nurse routine. What is that about?

Meanwhile, Wren is being very clever with his hands thesedays. He occasionally passes an object from hand to hand - he did this with a spoon yesterday - and loves to grab anything in range. He often grasps onto my hair, my shirt or his own clothes. At dinner, I had him on my lap and he reached out and grabbed some lettuce from my plate and brought it to his mouth. Frost thought this was hysterical and kept trying to repeat the act by putting more lettuce within range.

At times i worry that I am not providing Wren with enough entertainment. At this stage Frost was still very noisy and unwilling to be set down. Wren is happy to sit in his bumbo and watch what I am doing so I set him down much more than I did with Frost. He always smiles when I make eye contact and smile at him and he gets very excited if you talk to him and make raspberry noises. Josh manages to have conversations with Wren in which they both make the bttththtththt noiss for a while and Frost is the champion of these spittle sessions with Wren.

Today we went to Fauntenroy Creek in West Seattle to release the salmon that KapKa have been raising from eggs. Wren was in the sling and Frost was very solemn and excited to release a salmon from a little plastic cup into the shallow stream. He asked and was given a second salmon cup to release and his cup had TWO salmon in it which led to complaints of inequity from his friends who also wanted another go.

I released a salmon too and wished it well. Perhaps one of our salmon will make it back to the creek to spawn in a few years.

Tonight we gave Wren a bedtime routine for the first time. It included PJ's, Darkened room, Goodnight Moon, Nursing adn then swaddling and setting him into bed. He was not impressed. After 5 minutes of waiting for us to do something interesting he started shouting and complaining. Josh rocked him to sleep while I did Frost's bedtime. Wren's bedtime was 8.00pm. We shall see how this works out in future. Wish me luck on this nights sleep (mis)adventure.

Wednesday, April 25, 2007

Evil, evil, evil iron

At the clinic visit yesterday Dr Lewin suggested we stop the prescribed Iron Sulfate because it is often irritating to the stomach. He thought that might help Wren sleep. Clutching at straws we gave Wren no iron yesterday.

Last night he slept for EIGHT AND A HALF HOURS WITHOUT WAKING AT ALL!!!!!!!! (I am enjoying those exclammation points.) He slept 9pm till 5.30am then nursed and napped a few times till 7am when we got up. He is now very hungry today but wakes from naps cooing not yelling.

I bet if they took his blood pressure again it would be lower today. Of course, this may be a fluke and he could start waking all night again this evening but I suspect not. It all makes sense.

The really bad sleep started after the last pediatrician appointment when he had all the shots and still had a cold. We chalked it up to shots and cough. However, instead of improving sleep has gone downhill. Before that appointment I had tapered off his iron and he had been sleeping well. Because it was still low that day (29.1) Dr Levitt suggested we keep iron up a bit longer. She proposed Tri-vi-sol with iron or using the rest of the prescription we had. I just used the prescription since I already have tri-vi-sol without iron.

I feel so bad for Wren who must have been feeling bad for a while now with an upset or sore stomach.

Well, the experiment will continue tonight but these are my joyous initial results.

We found out yesterday that Dr Lewin is acting Director of Cardiology. The current director has stepped down to concentrate on research. That means Dr Lewin is not working as Director of Echocardiography at the moment.

Tuesday, April 24, 2007

Clinic visit summary

Wren's cardiac clinic visit was a success. We managed to get the echo done without too much insanity, little crying and only one whizz through the Baby Einstein video. The high point was a little light-up spinner toy Henry (the tech) gave us. He intespersed the echo with news from his road trip from the midwest a few weeks ago.

The echo showed Wren's heart to be stable - coarc has turbulence around it but the arch is "wide open". The LVOT area still has turbulence but the velocities were similar to last time and the valve is doing well - no leakage or additional problems. There is still a bit of thickening of the LV wall but no increase from previous studies.

Dr Lewin said this suggested Wren was in the "chronic stage of this condition". As Josh said "we would prefer he was in the resolved stage of this condition" but chronic is better than acute, right?

His blood pressures were a bit high(er) than normal but no-one seemed to concerned as he was very agitated while they were taken.

He weighs 8.21 kg or 17 lbs 15oz.

No EKG was done.

Dr Lewin and the nurse feel that the iron supplement could be contributing to his bad sleep. Dr L said we should discontinue it as it can be very irritating to the stomach. I was giving it to Wren at night and it may have given him a sore stomach. Nurse Jenny said she was sure he was teething.

We go back in 3 months and are okayed for the road trip to California this summer IF the leg issue is resolved and it should be in time.

Meanwhile, Dr Lewin is concerned about the leg. He says it may be simple vein compression but it could be that the cath created a pathway between the vein and artery in his groin. This could reduce circulation to his leg. He wants us to have a doppler ultrasound study of his leg to see what is going on. We have one scheduled for Friday afternoon at 2pm.

Meanwhile, Wren is to lie flat more often and try to sleep flat too - not in the wedge. We should avoid positions that put extra pressure on the back of his thigh like extended carseat rides and sleeping in that position, at least until it is diagnosed and resolved.

A great treat on our visit was to run into Wyndi, Izzy and Stephen (after a vascular clinic visit) and Christopher, Kenia and baby Sophia (just back from Sophia's arterial switch surgery at LPCH in Stanford). I feel very happy to have met Sophia. She has a delicate sweet face and was managing to sleep through many distractions. She makes Wren look like a complete thug with his size. I hope their clinic visit was as uneventful as ours and we get to catch up with them at a support group meeting in the months ahead.

Monday, April 23, 2007

Clinic today

Wren has his first cardiac clinic in 2 months. He will have an echo, ekg, usual routine evaluation and a consult with our cardiologist. We hope to run into Izzy and Wyndi after their vascular clinic if things go on schedule.

Last night I said to Josh "at least after a really bad night I know the next one won't be as bad. He never sleeps so badly two nights in a row".


Wren had his worst non-hospital night ever. Despite dosing him with Zantac and then infant tylenol (in case its teething) he woke: 8.30pm, 9.30pm, 11.45pm, 1.45am, 3am, 3.20am, 4.20am, 5am, 6am and was up at 6.30am. He went to nap again at 8am.

Other than saying "something is wrong" I can't understand it and am really at my wits end. He nursed to sleep easily 3 times (bedtime, 3am and 5am), went to sleep by being held twice, and once went to sleep sucking the binky with me holding it in place. That took 30 minutes.

Josh helped a lot and was awake most of those wakings, as was I. Neither of us feels too frisky this morning and we had a fight at 6.20am which began like this:

Me [angrily after 20 minutes of holding the binky for Wren to fuss on]: Well DON'T take the binky then. (throwing the binky across the room)
Josh: [wakes up groggily]
Wren starts to cry loudly.
Me: [crossly] Okay, okay, I'll get up then.
Josh: Isn't that why you went to bed early? This is when you get up anyway?
Me: [very upset and angry with the universe] Not 6.30. Not when I've had no sleep. If I get him back to sleep he'll sleep another hour. At least YOU get 3 hours more sleep.

[I scoop up Wren and stalk out the room and plonk him in the swinging chair in the living room where he sits happily chewing his hand and looking around. I go out the back door and sit on the back steps feeling hateful. This lasts about 5 minutes until I notice its a beautiful morning with birds and sunrise and a vegetable garden and I wake up fully and go back inside to make coffee. At this point Joshua gets up. he is cross and feels the "at least you get 3 hours sleep" comment means I am angry he is sleeping. I tell him to go back to bed and then we fight about that for a while. It takes 15 minutes before everyone is not-upset and not-half-asleep. Josh sits wrapped in a blanket blowing bubbles at Wren who is very proud to be blowing bubbles back.]

It seems that this is taking a toll on everyone except Wren but as I said to Josh, there is really no solution I can see. Tonight I am going to sleep in the spare room until 1.30am so I should have one stretch of 3 hours to give me more good humour for the hourly treadmill therafter.

I checked Wren's mouth a number of times in desperate hope of finding a tooth but there is no sign that I can interpret.

I hope the clinic goes well.

Plan B not working yet

The past 2 nights have been bad. Wren has slept for 4 hours, been rocked to sleep and slept a couple more hours and then woken hourly till 6-7am. Today was a bit better since we made it till 7.30am (8.30pm-7.30am. He woke 5 times between 10.30pm and morning). Since he is going to bed earlier thesedays my sleep hasn't overlapped enough with the long sleep and I am getting no more than one 2 hour stretch before the wipeout of napping and crying or nursing begins.

Josh suggested we start the Zantac again because he has woken screaming a couple of times and seemed to be gulping a bit. This is not the usual pattern but we shall try it in hope that it helps. I gave him Tylenol last night around 4am but it made no appreciable difference to his sleep. As before when he did this around 2 months old, he really doesn't seem to wake fully - he is in a state of crying in half sleep but unable to put himself back to sleep. The only difference is that thesedays picking him up and rocking him can exaccerbate the situation - waking him a bit more into a fit of screaming and wriggling and flopping his heavy head. The only foolproof solution is nursing which puts him to sleep in about 10-15 minutes 90% of the time. In the early morning it isn't as effective and he wants to remain latched on which makes for no sleep for me.

I am going to try going to bed around 9.30 in hope of sharing his deep sleep period. Oh, in other not-so-interesting-news for everyone else, Wren seems to be trying to have a longer nap in the daytime. For the past 2 days he has had shorter morning naps and is consolidating a longer nap or a series of naps back to back for 2-3 hours.

Sorry this topic is so boring, overdone, etc. I am too tired to explore more interesting terrain. However, during the day I cope okay and the weather is warming up into a slightly sunny spring.

Today I have plans to do the grocery shopping with Wren in tow.