Surgery tomorrow - updating via blog

[Phyllis]

Here is an update from last night. The updates are quite extensive and I truly suggest that you keep up with them by going to the blog quoted in Shannon's first post: http://echobaby.blogspot.com/

Was the surgery a success?
Yes, it was a success BUT it was not an unqualified repair. As we expected, this less invasive option did not make it possible to get all of the stenosis in the valve. Basically, the aortic valve IS too small and although Dr Hanley opened the leaflets a bit by cutting some attachment at the base of the leaflet AND shaved the leaflets where they had thickened a mild-moderate gradient remains.

In my previous post I said that Dr H would leave the repair if the gradient was <35. Well, it was 34. He says that it may come down a bit post-op but it will go up again over time as scarring develops. He hopes to make it till Wren is 7 or 8 when he should be able to fit a large enough valve to last till adulthood. His view is that you want a Kono to be the final valve replacement if at all possible - taking down konos is risky and complex.

So, we are relieved he has his valve and has a chance to do very well for years BUT of course we are anxious about the progression of gradient from mild-mod to MODERATE to SEVERE. Before surgery Wren's gradient was 75+ and classed as severe.

The other interesting comment was that while the patch above the valve was very straightforward, the sub-aortic tissue was very complex. It was dense, fibrous, scarred and extremely tight. It extended to the mitral valve and was attached to it.

Dr Hanley had to remove quite a lot of tissue in the resection to get at the obstruction.

However, he was pleased to see that both valves work well even though they are not normal anatomy. His mitral valve is only mildly parachute and his aortic valve is good for a bicuspid. He went so far as to say that IF the subaortic obstruction recurs in 2-3 years he would recommend a repeat opening of the valve and LVOT - perhaps being more aggressive in treatment of the AV.

This time, he achieved satisfactory improvement without regurg. He explained that when you work on a valve you have to balance leakage and constriction. If you do too much work to address constriction, you get leakage. If you have too much leakage you have to constrict the valve. In this case, there was no leakage immediately post-op.

 

[Phyllis]

Wren has come off the vent- good news!

am typing this on the diminuitive keyboard of Josh's google-phone. The words are like pin-heads.

NEWS - Wren was extubated around 7.30am. He was stable overnight and I got a lot of infoat rounds.

They are watching his left arm pressure which was a bit high overnight indicating his mitral valve was
or rather is, stenotic. Now they have come down after he relaxed.

Extubation was rough but he is on only 40% O2 cpap now aftr he desatted a bit rolling & crying. He can talk
& has a very quiet husky voice. More later.

 

[zipper2]

Hooray,off the vent and praying he continues his recovery

smoothly.........Thanks Phyllis so much again for update.

zipper2 (DEB)

 

[Phyllis]

It is so hard our hearts go out to Wren and his Mom and Dad;

Bumpy Day
I am home for a nap and a sandwich with tomatoes from the garden. It has been a hard day so far. The team is trying to balance pain and agitation without too much sedation. Sedation makes it harder for Wren to breathe and since it has been only a bit over 3 hours since he was extubated they are still watching respiration closely. However, if he wakes up too much his pressures go up because (even with pain management) he becomes aware of his discomfit and situation and wants to pull out lines, remove hand splints and just get up and go home.

For example, shortly before I left Wren woke up and was speaking in his hoarse little voice. He wanted more milk now. I asked for a binky with some sugar water to dip and Wren became very alert and calm taking the binky and dipping it in the sugar water then sucking it carefully. He did this for 15 minutes, talking a bit and being serious but very much himself.

Suddenly, he had a tantrum. He started kicking wires, I hadn't given him sugar water fast enough and he wanted to move and turn over but was prevented by supports and chest tube. His pressures started going up and up, his heartrate and resp alarmed and his left arm line occluded. It was chaos.

So, then he received doses of morphine, versed and is going to get chlorox. They just want him to rest more than he is able today.

Concerns
Wren's chest sounds rattly because he isn't coughing much. He has stridor and strains to breathe when he is asleep and stressed. When he is fully asleep it is much better.

His left eyelid is droopy. While this could be an effect of drugs we hope it wears off and is not a sign of a stroke. Wren is talking and moving normally so we are hopeful it is nothing serious but the nurse also noticed it and is monitoring it.

Left arm pressure. This continues to spike up to 29 when Wren is agitated. We hope it settles as he settles! It remains around 15 most of the time.

Good signs
Wren is extubated, moving around, talking and alert between doses. He is having a good recovery according to docs at rounds. More for my own records than everyone's interest - I will post some of the comments from Rounds later. As I said earlier, I learned a lot.

Got to nap now.

 

[Phyllis]

This evening's update:

Shannon and I have now settled into a Wren-monitoring rotation. We eat breakfast and lunch together, but otherwise one is in the CVICU with him while the other naps or otherwise relaxes. We'll leave him at the shift change at 7 when we have to leave the room anyway and he'll hopefully keep close to his normal sleep schedule and be willing to stay asleep for the night. He certainly slept much better this afternoon around his normal nap time.



The nursing staff is all great and well qualified to take care of him, but there's definitely a difference when we're there. We're more immediately responsive (since we're about a foot away from him in a chair) when he stirs or cries out, and we're more available to feed him sugarwater or read books to him for long stretches when he's conscious. It makes enough of a difference that we're trying to be there as much as possible during the day.



Concerns
Wren's left atrial pressure is still high. It was expected to be high and will likely always be high for him because of his condition. Normal is apparently something below 10, but Dr Hanley wants Wren's to stay somewhere in the 16-20 range. Through last night and this morning his pressure was comfortably in the mid teens, spiking up above 20 only when he got very agitated (unforunately frequent). But lowering pressure is a side effect of one of his drugs (I forget whether it was the Versed or the Ativan) and once the drug was wearing off he was hovering at 20 even when fast asleep, so he's been redosed. According to the nurse, the increased pressure could be a temporary side effect of swelling and inflammation in the heart after surgery, so hopefully it will drop down on its own. I don't know what the next step is if it doesn't.


Wren still has a dopey left eyelid, and we're still worried about the possibility that he had a stroke. The staff doesn't seem too worried about it and he doesn't seem to have any other symptoms, so it may just be idle worrying.


Wren's still full of tubes, and he hates each and every one of them. If they're not itching him then they're getting caught on his feet, or they're sore, or he's rolling over and occluding them. I measure progress in the number of lines that get pulled out of him, and so far the only progress on that front has been the breathing and NG tubes.



Progress
Through the morning, he was getting increasingly demanding for 'numnums' when he woke up, which was a binky dipped in sugar-water. Feeding a near-2-year-old on drips off a binky is painstaking and unsatisfying work. But around 5 hours after the tubes were pulled he was okay for clear liquids. I asked the nurse if this included apple juice, and although she wasn't too excited (it's a little acidic), Wren was awake at the time and started chanting 'apple juice apple juice', so that was decided. He guzzled half a can in a few seconds and naturally threw it back up shortly thereafter. So he was limited to sips of water subsequently.


He's also becoming more familiar with the nurses and they're having an easier time settling him down, which might mean Shannon and I can be a little more relaxed when we're away from him for dinner.

Posted by Sidereal at 5:10 PM

 

[Phyllis]

Sounds like things are going fine:

Sunday, November 9, 2008
An Excellent Night
I arrived just as Wren was waking up and had been calling "Mama". He was decannulated and had drunk breastmilk through a straw overnight after refusing a bottle.

While I was there, the fellow came around and ordered his only medication (by drip) - Milrinone (sp) - turned off. His LAPs were low overnight - around 17 but down to 15 in the morning.

When I came in, Wren was very upset and demanding "milk". This is his usual habit at home and so I got out the straw and offered him a glass of expressed breast-milk which he usually gets fresh from the 'mommy-cow' in the morning. He pushed it away, splashing all over.

So, as his alarms were wringing and the nurse was busy with her other patient, I shifted him towards me and let him nurse at the side of the bed while standing on tippy toes. The nurse said she had never seen that before but it worked!

His LAPs went down to 12 and he was very very content. After nursing BOTH sides we watched some TV, read a few books, blew bubbles and played with elephant and hedgehog puppet.

After an hour he became agitated and I suggested he nap. It took only singing and patting and he fell asleep. I need to get back soon for rounds. Its shift change and we have a nurse named Dawn.

 

[Phyllis]

Latest on Wren:

Sunday, November 9, 2008
Bumps but doing OK
Everything is still good but, after a soothing early morning, we have had trouble keeping Wren calm. He is okay for a while after waking, particularly if he gets what he wants (Thomas on TV, nursing, a lollipop, a popsicle or a syringe of water to pay with) but after about 30-45 minutes he gets tired and agitated and wants to get up. His pressures spike, lines get occluded, we all rush into overdrive to soothe-disentangle-adjust-distract him and if we don't manage with that - to medicate him.

Josh has gone to sit with him now. He says his plan is to watch his fantasy football roster lose on the little g-phone screen. Wren is sleeping after a dose of Ativan and some Torodol.

Morning Rounds
We had morning rounds with Dr Fletcher (?) attending and Dr Colvin (ICU Fellow) as well as the usual team. The summary was that "he is doing well."

Discussion focused on the LAPs and what to do about them. Also, his overnight X-ray showed some pulmonary edema, described as "some fluff on the right side." The nurse assured me that they are not very concerned at this point. They decided to do a volume challenge - increasing Lasix (not Epi!) and trying to get off more fluid.

Part of the discussion was explaining to residents about the relationship between diastolic pressures and the LAPs. I didn't follow it all but it seems that if the Diastolic is up as well as the LAPS there is less concern at loss of coronary perfusion pressure - all over my head! Anyway, Wren's were going in the right direction.

His chest tube is still putting out a lot - 150 mls in 24 hours - so that is staying in a while. It is now more less bloody but still bright.

His IVs are Torodol, Zantac, Lasix and PRNs are morphine, versed, tylenol, benedryl and Chloryl hydrate. Lasix is now 6 hourly.

Platelets 183
Albumen 3.4
INR 1.2

Milestones
After morning rounds Wren had his Foley catheter removed (traumatic all that tape) and left foot IV which was occluded (lots more tape).

He nursed a few more times. At a lollipop. Ate some cheerios (about 8) and spoke a lot. He is still glum and wants to get up and go home.

The LAP line is still in, at least until tomorrow.

Feedback!
Thank you all for the emails and comments. Since there is no internet connection at the hospital I don't have much time to respond individually. We are not encouraging visits until Wren is a bit happier but please let me know if you ARE in the hospital. We are in the CVICU and I'd be happy to meet for a short while. We just grab breaks from time to time and I sometimes sleep a bit in the parent day room or the sleep lounge.

 

[Phyllis]

A small part of today's blog:

Monday, November 10, 2008
Big Fears and Small Setbacks
LAP Line and other Progress
The LAP line is out. The cardiologist who did it said there was no bleeding but since Wren's platelets and hemacrit were low he ordered a blood transfusion. I think he is getting 150 ml.

The EKG is pending and the echo was brief. It did not confirm or deny the location of the LA line tip but they are looking on another screen to see if they can visualize it.

One of the residents came by to do an exam. His chest tube has been allowing air to gather under Wren's skin. If you touch his belly around the tube and quite far down, you feel a strange crunching of bubbles. Its called crepitation or subcutaneous emphysema. They redressed and packed gauze around the tube to try and slow it down. The chest tube is still putting out more than 50CC per 24 hours and won't come out just yet.

The Plan
Next line for withdrawal will be the arterial line in his right hand. I hope that will come out later or tomorrow.

They may talk about the "move to the floor" tomorrow.

 

[Phyllis]

It's a good morning:

Tuesday, November 11, 2008
Quick morning check in
Wren has had a great morning so far. He woke at 5.30am just after I arrived and was happy to find me able to give "muk". We watched the Wiggles and danced the Monkey (waving his hands over his head).

Wren loves the new monkey (a Curious George stuffie he was given by Child Life yesterday). He also has a new blanket.

I am sure that many of you heart families will share my gratitude to those nameless and faceless women who knit blankets and sew quilts for children in hospital. I have a beautiful collection of little quilts from Wren's various hospitalizations. This one is yellow (the quilt) but the snuggly blanket he was given the first night is also beautiful. I remember being so surprised that the first blanket was OURS and we could TAKE IT HOME!!

Anyway, I became McGyver and created a rope from folded Micropore hospital tape and stuck monkey to it and looped it through some medical hardware on the ceiling. If we tug one end of the line monkey goes UP and if you let go he falls DOWN. Monkey can also swing and hoot and be kicked.

I bet this is good/bad for chest tube output but it was certainly fun.

I left for shift change and returned to find Wren napping.

How is he looking?
He has received no medication overnight and is in a good mood today. His swollen belly is a little less distended and his left IV is not leaking much. He is very happy and moves easily despite no pain medication. He also seems more relaxed with the nurses.

Hopes for Today
We hope to have the arterial line removed. It is in his right hand and we refer to it as one of "the big bandaids."

We also want to see chest tube output down significantly. It was still 120 CC over 24 hours but most of that was in the first 12 hours. It was much less (30CC??) overnight.

Blood gases were great, platelets up to 218 (from 183 yesterday) and his hemacrit was in the 40s (was 30 yesterday) after his blood transfusion.

I wait to hear how the X-ray looked. I would like to make it back for Rounding around 9.30am so I should head in soon.

 

[Phyllis]

Great Report- talking about going home on Monday!!

Tuesday, November 11, 2008
Improvements in Mood & Wren
I returned in time for rounding at Wren's bedside. Here are the highlights:

1) Arterial line & central lines can come out. [Was TAKEN out at 11am]
2) Chest tube needs to be watched another day. Output was 40CC in 24 hours, none in past 12 hours.
3) X-ray looks good.
4) Echo looked good (peak flow was 40, mean was 24). Suboartic repair looked clear but there was a very small flap of tissue. No obstruction.
5) Aortic valve showed no regurgitation.
6) Mitral valve looks stable. Still has about 9mm gradient as it was pre-operatively.
7) Wren is cleared to go to the floor TODAY but probably won't move today due to backups on the ward.
8) In the BEST case scenario Wren could be discharged on Thursday! Yes, you read it right - 7 days after surgery.

This is all speculation, of course. It may take longer and on hospital time it usually does. The earliest we would fly home is Monday morning but it is still very encouraging to think that things could move that fast.

Joshua is keen to take Wren on a roll in the red wagon but we would still have to take the IV pole with us for a little while. They still have him on a drip and IV lasix.

The only negative is that the chest tube crepitition (whatever the spelling) is still there, if a bit reduced. It is tender around the chest tube site and still crunchy. We are still weighing diapers and estimating how much juice he sucks or how much chocolate milk he gets with his cheerios. Yes, chocolate milk - I forgot to order the regular milk with his breakfast and there was only chocolate milk in the nourishment room fridge.

I am having early lunch (after shopping at the local Safeway which is awfully pricey) and will go back to see Wren shortly.

Love you all and thanks so much for the messages and support. I could not start to think of all the people I need to reply to.

 

[Phyllis]

All Good News Tonight!!!

Tuesday, November 11, 2008
3-West!
Wren has been prepared for transfer to 3-West. I left at 2pm to change shifts with Joshua and we received word that he will be transferred at 2.30pm. They are moving a patient from the critical-care hub of the CVICU into our spot and a new post-operative patient is coming into the unit.

Our room has already changed a lot today. The two older kids with pulmonary valve replacements were discharged. Not just to the floor, but home! Wren was third in line for the Ward but because they were discharged he got to go early.

We are very excited but now have to take a greater responsibility for his moment-to-moment care and will sleep in the room with him.

While I was there over lunch he had his central line removed and his dressing changed. The incision looks excellent. He now has only his chest tube, left arm IV and the pacer wires which stick out of his chest in an alarming way. Frost's friend Dylan would find it fascinating because they look just like wires to plug into something (which they are, kind of). They are there for "an emergency" and will be one of the last things to be removed.

 

[Phyllis]

Today's update:

Wednesday, November 12, 2008
A day on the floor
Josh called me in the late morning to say there had been a big glitch. I felt my adrenaline start running until he explained that Wren had been woken after a 20 minute by the Nurse Practitioner doing her exam. Argh. I explained that was an inconvenience not a glitch!

Progress after Rounds
We had rounds a short while ago. They were uneventful. Basically, we measure how Wren is doing on two levels. The first is how is he doing in his recovery from surgery? He is doing very very well. His chest tube will be removed as soon as Hansen Quan is available and his last IV soon afterwards. Then he can take trips in the red wagon and will be on track for his Friday discharge.

The second level is "how is Wren's repair?" For me, that means how is his LV performing - what are the gradients, how is his EKG and how long will this last. The end part will have to wait but for now everyone seems pleased but still asking questions. The main question is the variability in Wren's EKG. Post-operatively it looked better than pre-op but still showed some "ST Elevations". These were reduced the next day and the Fellow commented that she was pleased it improved but concerned that the improvement meant that the previous day was not his baseline. Todays' EKG looked like the first - spurring talk of a repeat EKG on the 14th and concern about what is the cause. For those like me who have to google "ST elevation" - the most common cause is not getting enough blood to a region of the heart, as in a heart attack. So, its bad. But nobody is talking to us about it so I am seeking answers.

 

[Phyllis]

Best News Yet

We are home! We have been playing in the garden. Unbelievable.