Always Thankful

It's 9:06 pm on Thanksgiving Eve,  I should be at the movie theater with my sister.  Instead Mike and I are pulling out of the parking garage at the hospital after admitting our little girl once again.  This time due to low blood sugar.

We were discharged from our last admittance a day early on Tuesday (11/18/14).  The attending cardiologist was originally planning to send us home Monday, but a late blood test showed Lucy's potassium was low.  They were not comfortable sending her home so they planned to give her two doses overnight and retest in the morning.  The morning test came back higher and we were good to go home.  One dose of potassium was added to her daily regimen of medication.  The doctors did not change much else aside from dosage on some of Lucy's current medications.

Goofing around....with a diaper helmet

We settled into home life and looked forward to our therapy sessions the following week.  But first we had our followup appointment.  An x-ray to check for effusion and blood work to check her potassium levels were the main focus.  The blood test indicated low blood sugar.  Hers was forty eight.  Just to give you some perspective, the low end of the range they like to see is sixty.  Since this had nvever been an issue before Dr. Husayni ordered another test in two days to make sure this was a one time thing.  Tuesday morning we had our physical therapy session which went great.  We have a couple things to work on, the biggest being tummy time.  Tummy time is becoming increasingly harder now that Lucy has figured out how to roll over.  Oye!  Lucy's speech seession was just as successful.  Our therapist was a little worried that after our hospital stay Lucy would lose ground, but we picked up right where we left off.

Wednesday we went to Elmhurst hospital for Lucy's follow-up blood test.  We got home and I went to the grocery store to get some Thanksgiving food for Mike and I.  We had decided it was too risky to take Lucy to family Thanksgiving during flu season.  After a shower, I checked my phone and saw two missed calls from 708 area code (the hospital) and a voicemail.  Her blood sugar:  thirty six!  When I called Dr. Husayni back, one of the first things he said was 'You're going to hate me'.  I knew exactly what that meant.  We were headed back to the hospital.

I can tell that Lucy has changed me so much:  my outlook, my emotions, my reactions.  I have learned that I need to be strong so she can be weak.  I need to be a comfort so she can rest her head and cry.  I need to hold her hand while she is getting poked and prodded and make sure she knows it  will be okay.  And no matter what I feel, I need to take a breath and smile for Lucy.  She is also teaching me.  With each obstacle we face a chance to grow.  In the worst of days where she is pricked on the heal, in the arm and kept from sleep, she can bounce back a day later and give me some of this:

 To correct her blood sugar issue, we have moved back to regular formula on a complete bolus schedule.  That means no more continuous feeds overnight and we are getting up every three hours.  Somehow it feels like a regression, having to get up in the middle of the night, but I know this is a step forward.  Since the switch on Thursday, her blood sugar has stabilized.  Now we wait to see if the surgery was a success and that no chyle returns.  We have an x-ray scheduled for Sunday and if all looks good we are hopeful for a discharge within a day.

In the spirit of Thanksgiving

  We are thankful for a God who has his hands so tightly wrapped around our little blessing

  We are thankful for our prayer warriors

  We are thankful for each other, family and friends. 

This journey would be unbearable without all. 

Tube out

We do not get to go home.  We will start week three at the hospital on Monday.  It will be okay.

If I could compare being at the hospital to anything, I think it might be highschool.
Our first time was like Freshman year.  You're unsure of yourself, your surrounding and you are trying to learn everything.  You listen to the doctors and take their advice.  At this time, they know Lucy best.  It the longest year and our longest stay.

The second trip;  sophmore year.  You're familiar with the setting,  you know everyone.  There are less questions, but the things you are learning are a little more advanced.  You're skin is tougher and the doctors are relying on you a little more.  The year goes by a little quicker

The third trip;  junior year.  It's barely there.  It's a blip on the screen.  Three days, in and out.
You don't really learn anything...just biding time until senior year

But this trip...it's senior year.  King of the castle.  We now know Lucy best.  I ask things I wouldn't dare ask back in May.  As we moved down to floor two last Tuesday, I said we should probably just take out that left tube.  Doctors said no.  Wednesday morning x-ray showed the tube was nearly falling out and caused pneumothrorax (air in the chest cavity).  I told you so!  We flush her NG tube after feedings.  The nurses ask for our input when considering pain medication.  We are practically graduates.

By the time we are back for her third surgery, it's possible we'll have our masters degree.  Although if we don't have another admittance before then, we'd be okay with it.

Thursday morning we got another x-ray and bad news along with it.  She had reaccumulated fluid on her left side.  Seriously, where does this kid get all the fluid?  I spoke with the cardiolist and we had three options. 

1.  Insert another chest tube - um, no thank you!  It's hard enough to pick her up with one.
2.  Place her on NPO (it means nothing by mouth) and dry her out.  Can we say cranky baby?
3.  Increase diuretics and monitor carefully.  Least invasive, but probably takes the longest.

 

As much as I'd like to leave sooner than later, I was hoping number three was what they would decide.  In any option we weren't leaving this week but minimally invasive always has my vote.  Before they left I asked if they could at least take the IV out of her right hand.  She came out of surgery with IV in the right hand and left foot.  Since she is mobile and very curious they have to put plastic casing over it so she won't pull it out. It's pretty much a club hand and apparently a chew toy.  As we would catch her gnawing on it.  She was happy to have her hand back.  Makes it much easier to play.

After speaking to the surgeons, the team went with option number three.  With more fluid accumulating on the left side there was no chance they were going to pull the right tube out.  Even though it was draining minimally.  We have increased diuretics and the x-ray Friday morning is showing some improvement.  Cardiology came into speak with us after they reviewed the x-ray.  They would wait for no drainage from the right tube before pulling it.  Luckily for us that happened today.  We are officially tube free and possibly looking forward to mid-week discharge.

Sometimes you just have to goof around.  No heads were injured, just playing with band aids.

Tonight, while Lucy is in great hands, we will celebrate her and CHD research at the first annual Red Tie Ball.  It's a much needed night out to make sure we don't forget our first roles: husband and wife.

just a little tired

I'm tired.
I'm tired of commuting to the hospital.
I'm tired of never really knowing what the plan is.
I'm tired of getting into some sort of routine for Lucy only to have it disrupted by a hospital stay.
I'm tired of having to remember if this hour or that hour she gets meds.
I'm tired of having to carry a notebook every time we leave the house with all her medical info.
I'm tired of the strain on my relationships.
I'm tired of crying
But mostly I'm tired for Lucy.  For all that she has had to endure in these nine months. For all that is still to come.

These last two weeks have been trying and yet Lucy has managed to smile through most of it.  I'm amazed everyday at her spirit.  Happy 9 months little girl.

 

 

The catherization on Monday went well considering what they found.  The original plan was to balloon her pulmonary arteries, however, once they were able to view them, the doctor saw that there was no narrowing.  They were just small.  They instead ballooned the coarctation of aorta which was successful.  What we did not expect was the effusion around her lungs which turned out to be chyle and the dreaded chylothroax was back.  What was puzzling is Lucy showed no signs of distress especially after seeing how much drained in the first day (about 300 ML).  The doctor drained the chyle during the procedure and then inserted a pig-tail drain tube on the left side of her chest. He also told us that her left subclavian vein was blocked.  After the cath we met her back in her room in the PICU and it was insanity until we left.  Lucy was a complete mess.  We could not get her to calm down, even with morphine and Tylenol.  An x-ray was ordered and the doctor saw that the chest tube was coiled and sitting on her diaphragm.  Every time she took a breath she could feel it.  They ordered some IV sedation medication and planned to pull the chest tube out about 10 mm.  There are many things I thought I would be doing with Lucy but I can tell you helping a doctor and two nurses pull a chest tube out of her side was one that never even crossed my mind.  We were able to get her to calm down for periods of about 15 minutes on my chest, but that was not sustainable.  Our night nurse came in and took over.  She sent us home at 8:30 pm saying we were no good to Lucy without some sleep.  We found out the next morning she was given toradol around 10 pm and she was able to sleep through the night. 

Tuesday and Wednesday the tube drained more and Dr. Husayni said they would discuss her case in conference Wednesday night.  Then Thursday we found out they decided surgery.  The reason behind the decision was that the thoracic duct drains into the systemic circulation at the subclavian vein, which is blocked.  They felt ligating the thoracic duct could potentially fix the issue of reoccurring chylothorax.  Then the draining stopped and thus started the debate of if surgery was really necessary.
Through the weekend Lucy was a smiley, happy baby.  Our room was right in front of the hallway so she had plenty of people to watch.  Many people would stop and wave (the curse and blessing of glass doors) and Lucy would just smile.  And we just waited for a final decision.
That decision came Monday around 10 am and they expected to take her about noon.  Talk about short notice.  The first case took longer than expected and we ended up sending Lucy off with kisses around 2:30 pm.  Surgery was successful and we were back in her room by 6 pm.  This time we decided not to hold back on pain medication and had morphine and toradol scheduled.  She came out with a second chest tube, on the right side.  We moved down to floor two on Tuesday and were hoping for a discharge soon!  During rounds they said they would watch output overnight and pull both tubes Wednesday morning.  Unfortunately, there was still drainage overnight.  On the morning x-ray it showed the left tube had pretty much fallen out on it's own.  They had to pull it out and would monitor to see if any liquid accumulated.  We wait to see what Lucy's fate will be pending an x-ray.

Some much needed sleep amiss the craziness that is the ICU floor.

#$%!!#$%$#%$

This will be short because I feel completed defeated right now.  What was supposed to be an outpatient procedure with an overnight stay has turned into a two week hospital stay and a surgery.
During her catherization they found chyle accumulating in her chest cavity.  They drained this and placed a pig-tail chest tube to allow excess fluid to drain.  She has had a significant amount of drainage since Monday. 

I might have some of this incorrect as I am overwhelmed, but here is the gist:

The thoracic duct drains chyle into the left subclavian vein
Lucy's left subclavian vein is either non-existent or obstructed
Chyle would continue to leak into her chest cavity.

Dr. Husayni and the team discussed her case at conference and decided to treat this with surgery.  They will go in through the right side of her torso and ligate the duct at the base.  A leak can be very hard to find so they feel doing this at the base gives us the best chance at stopping it.
So we will stay at the hospital until Monday and recover the following week.

I want to scream 'This isn't fair!  Hasn't she been through enough?'  But this is life.  Sometime you are dealt a hand and all you can do is have faith that God's plan is far greater than you can even imagine.


Obviously we ask for prayer for a safe and successful surgery.  But we also ask for some peace and understanding as we deal with this unexpected news.

Cardiac Cath

We have held a lot of roles since Lucy arrived in February and on Friday we assumed a new role,  tooth fairy.  On Friday morning we noticed a tooth popping through her lower gum.  This along with the vaccination on Thursday afternoon made for a slightly crazy evening.  Sunday morning we noticed a second tooth coming through as well.

This past week was good.  Lucy has taken to sitting and can barely stand to sit in her bouncy chair.  It reclines too much (or so I think).  The best part of sitting is it has helped with throwing up.  After daily throw-ups for over three months, we have had four days free and clear.  We also saw the speech therapist and she impressed with how well Lucy was sitting.  We tried some puree foods and did very well.  We continue to try different types of foods to see if we can improve, but progress will be slow.  We are still working on tummy time as well to get her arms and neck stronger, but she has learned to roll over from tummy to back.  The only way we can get Lucy to stay on her stomach for any length of time is with the cat chasing the red pointer right in front of her.  She is mesmerized by the cat and will search for Mully any time she is awake.

Tomorrow morning we are headed back to the hospital for our forth admittance. This one at least was planned. We were able to schedule her cardiac catherization as the first case. The cardiologist (the same one that did her hybrid) will balloon her pulmonary arteries. They keep her overnight for observation as Lucy will be under anesthesia for the procedure. She should be discharged Tuesday morning if everything goes according to plan.  We will see what this means for her oxygen support.

We will update later this week, but ask for prayers for a successful procedure and a good night's rest for Mike and I.