Afternoon Update (9/17/16)

Job didn't have the post-op recovery nor boring night that we had hoped for.

He came out of surgery breathing on his own on the spontaneous setting on the ventilator. This setting allowed him to do most of the breathing work on his own, even though he was also at 100% oxygen (whereas room air is considered 21%).

Sadly, his sats, never as high as we wanted to begin with (well, specifically after surgery) dropped dramatically into the 50s in the middle of the night, proving he wasn't ready to breathe on his own.

The most acute patients are in rooms directly outside the attending's office. And Job had a steady stream of medical personnel in his room all night.

After his desat, his team decided to take him off of the spontaneous setting on the ventilator and increase his vecuronium (muscle relaxant) significantly, as well as his dilaudid (narcotic).

Job's heart function following surgery was and is still depressed (so he's on milrinone and was on epinephrine to help his "squeeze") and last night he didn't have the ability to work as hard as he needed to in order to maintain his sats. The idea was that if completely muscle relaxed (so his body isn't "wasting" energy), with the ventilator turned on to full capacity, Job could rest and recover a bit more and maybe his sats could recover too. And as of this afternoon it seems to have worked!

You and I only have to get used to switching our circulation once: from fetal to, well, typical. But Job will have to adjust to five different circulations: fetal to typical, typical to Norwood, Norwood to Glenn and someday Glenn to Fontan.

This is a very big adjustment for him and his little body was struggling to keep up with the work of breathing on depressed heart function, as mentioned, in addition to the normal complications of recovering from the trauma of surgery.

One such issue is his positive fluid balance. His little lungs can't function correctly with the excess fluid in them, so he needs help getting rid of that fluid through diuretics, namely lasix (item one). We need Job to have a negative fluid balance (that is, we need him to pee!) before we can move forward.

Job's hematocrit (concentration of red blood cells) was low as of this morning and so he received a transfusion (item two). In very basic terms, this means he received more red blood cells. This helps his capillary leaks heal (which helps his fluid balance) and it gives his hemoglobin a better ability to carry more oxygen around to his tissues. This made a big difference for him as he recovered from rhino a few weeks ago and the mention of it this morning made me hopeful for a similar result. I was afraid to get too excited, because of course recovering from rhino and from surgery are very different animals, but the crit infusion seems have been one of several factors in Job's turn around. SV kids (single ventricle) often respond well to crit infusions. In Job's case, it likely helped him come off of his blood pressure meds (vaso and epi).

As mentioned, in the middle of the night, Job's hard work caught up to him and he needed to do less work. His vecuronium (muscle relaxant) gave him that break, but now that he's a few more hours post-op he will be weened off of his vec so that his body can begin to breathe on his own again (item three).

I mentioned Job's new Glenn circulation and the big change that it is for his body (but I really do need to write out WHAT the Glenn is... Maybe tomorrow's project?) but in contrast to any other cardiac surgery, it is important for Glenn patients to get off the ventilator as quickly as possible. This is because the Glenn now sends passive blood flow to Job's lungs. And his lungs need the negative pressure of his diaphragm (or in his case, only the right side of his diaphragm) pulling his lungs down to better receive his passive flow. The positive pressure of the vent, pushing air into his lungs, makes it too hard for the blood to optimally drain through Glenn (that is, from his SVC to PA). The ventilator, however, provides positive pressure on his lungs and therefore Glenn patients do much better extubated (item four).

And of course, we want Job's blood pressure to remain stable as this is a primary indication of his heart function (item five). Stable blood pressure helps his profusion too, bumping his sats higher.

Surgery Day!! (9/16/16)

Today we send our baby off for his second open heart surgery (the Glenn).

Updates:

7:06 am
Here we go! Last consents and instructions! Goodbye kisses too.

8:36 am
Just got a page (I guess I fell asleep, sitting here in his empty room, waiting patiently-ish). They have now opened up Job's chest.

It will likely take them an hour to open his chest and clear away all the scar tissue from his last surgery before they can begin their heart repair work. Isn't that fascinating? It surprised me!

They no longer give updates throughout the surgery, but they page when they start and when they end, so we don't expect to hear anything else for a few more hours.


5:28pm
Job is out of surgery and recovering in is CICU room! He is stable and it sounds like the surgery itself went well.

It took a few hours longer than they were expecting and he has not been as immediately responsive to his repairs as they were hoping.

These next 24 hours will hopefully be "boring" as he's well sedated, but we expect tomorrow will be a difficult night for him. And then hopefully he'll be able to meet his goals in the coming weeks (it almost certainly will be a longer inpatient stay than we were wishing for).

We are so grateful and relieved that he made it through surgery! And we're glad to now look at this new stage of recovery.

The Day Before Surgery Pt. 2

While Seth worked, I had Ezra and Isaac with me today at the hospital. Job had a really hard day, medic needs-wise, and the boys had a really hard day, obedience-wise, and Seth had a really hard day, work-wise. And I got to try to juggle all of the moving parts. Even merely few hours removed from the most intense stress of the day, I'm wondering how I was able to handle all of that. I suppose the answer is, as always, "but God".

My favorite part of the whole mostly-awful days was when we all squeezed on top of each other in the recliner to watch a movie. A last "last for a while".

Our hour of cuddles notwithstanding, today was one of the most stressful and difficult days we've experienced. I am so glad it's almost over. I'm so glad for the freshness tomorrow brings.

Every aspect of today was just hard, culminating in a very sobering discussion of just how complex Job's aortic arch repair will be with his surgeon, Dr. Nuri. It sounds like Job will also have a longer recovery than we were anticipating because of this complexity.

Snuggles with my three boys!! 

Job was pushed up to first case, which means I'll walk to the OR with him around 6:30am. We are expecting about 7-8 hours for anaesthesia and surgery, so perhaps we will get to see him around 2:30pm.

The Day Before Surgery Pt. 1

Job is having a bit of a hard day. His oxygen needs have increased but he still keeps desatting lower and lower. He got so excited to see his brothers when we first got here that he dropped down to 53% oxygenation!! and struggled to come up, even on 2 lpm of oxygen support. I think he barely avoided a RRT intervention (rapid response team).

Three little boys were very happy to be reunited today! (The red blur is Job's sock-protected IV and board.)

When Job's body works harder (excited, angry, eating) his sats drop. His body can hardly profuse adequately even when he's at rest and he just doesn't have any reserve to work with at present.

I guess I have been surprised by how quickly his shunt function declines each day and even throughout the day. I am so glad he has been here all week! If need be (that is, if he keeps desatting so low and for so long or desats even lower), we will transfer to the CICU to increase his support.

We're no longer counting down the days but the hours until surgery.

23 hours to go.

Inpatient (Again)

Look where we are! The hospital! Again! River six, but a new room! Yay! Job just wanted to extend his tour of every room in the surgical unit and wanted a head start before surgery.

I'm giving up trying to get a good photo this morning...

Job was admitted yesterday with his lowest oxygen saturations yet. Sunday was a pretty rough day, with four episodes of emesis and declining sats. We deliberated about what to do, but he surprised us with an amazing night. We were hopeful he could make it through Monday, but he was satting around 68 (% of blood oxygenation) so Seth took him to the ER. We have been watching his heart function decline. His decreasing sats and increased cyanosis was expected. We just hoped he would make it through this week at home.

Job is, unexpectedly, responding to oxygen support. He needs his Glenn because his Sano shunt (placed as part of his Norwood at five days old) is too small for his now bigger body. What limited blood flow he is getting to his lungs is now being fully oxygenated and he's now satting in the high 70s with his cannula!!

We were supposed to have a 7-8hr pre-op appointment today but we're now doing all of his pre-op inpatient. We expect to meet with his surgeon today as well as a NP and anesthesiologist to give consent for his surgery.

I was really frustrated and disappointed yesterday, but today has been better. I think it will be hard to wait here in the hospital until Friday without the distractions of life at home. Job doesn't like his hospital bed either, but he looks so much better on oxygen that I'm very grateful we have that option. We had been so skeptical he'd make it through the week, but seeing him decline so sharply Sunday and Monday "helps" me be grateful for the opportunity to be here. Again.

It's amazing how quickly I forget to be grateful and instead focus on my discontentment. We have been given so very much, yet I still want more. And perhaps most of all, I want it on my timeline. This long journey with Job will, I'm sure (and I hope), be a very sanctifying one.

Making Memories

I took the boys to the fair today, to make a fun memory of an excursion together before the craziness of this coming week begins.



The boys are posing here, trying to look sad that they're in jail. (The new Pioneer Farm set up was so fun! We got to do so many of the things we've been reading about in Farmer Boy, like milk a cow and shave a shingle and churn butter!)

Seven days. SEVEN DAYS! This was Job's last Friday outside the hospital for a little while. Ahhh! I can't believe how soon his surgery is!!

School Started

School has started! It's going to be a busy year as Ezra and Isaac get used to doing their schoolwork again. Job will continue his pre-med education with, apparently, some tutoring on animals from Isaac prior to his upcoming "internship" at the hospital.

We've been working throughout the month of August with a soft start on our curriculum, but it's always a bit of a shock to get used to the new school year and I'm a bit apprehensive about the transition for Ezra and Isaac in particular.



We're homeschooling for many reasons, but our extracurriculars (like co-op and Sunday School and BSF) start on Monday. It's hard to move to new classrooms and teachers and be held to a regular schedule, but to do so with the added emotional context of your little brother in and (hopefully) recovering from surgery and your parents not totally present?

I know we'll make it through, but I don't anticipate it being easy.

Complicating everything is our roller coaster of emotions. Every morning we wake up and announce how many days are left until the Glenn (only 10!). We wonder, daily, if Job can make it 12 more days, 11 more days, 10 more days...

He needs this surgery so desperately! But taking him in and giving him up to, well, be sliced open, is a difficult task. I know that we have no choice, but it's hard. Really hard some days, some hours.