Thursday, February 3, 2011

Good As New

Today was an amazingly productive day at the hospital for Jacob.  KC headed over to the hospital this morning and took the 'day shift' which is filled with doctors' visits, tests, etc.  While there, they took out Jacob's chest tubes, which were used to drain fluid and blood from his heart during the healing process.  We had both thought that the tubes in his tiny chest would be about 6 inches long, but KC said that they were closer to 15 inches long.  Holy smokes! Where did they put them? Did they thread them up to his brain, down to his heart and into his intestines while they were at it?!?  It was a painful process for Jacob, but it made an incredible difference in his recovery efforts, and also enabled KC to begin holding him rather than standing helplessly by his bed.

They also removed Jacob's central line, which is basically tapped into a major artery, his internal jugular line - which is a pick line, removed all but 1 IV drug, and all but 1 bag of fluids.  When I walked in, they were only monitoring 3 vitals, and KC was just getting ready to feed Jacob by mouth (Yes! by mouth!!!!) another bottle.  Apparently, his reflux and  most of his gagging is completely gone!!! 

Today was a day full of small (and not-so-small) miracles.  KC had an incredibly emotionally draining day as he had to endure the cries and looks of pain by Jacob as they removed the lines, drugs, chords, and tubes.  But he also got to hold his son, and see him progress by leaps and bounds in a matter of a few short hours.  I, on the other hand, just waltzed right in, they immediately placed my little baby into my arms and I got to snuggle with him as he drank (and didn't gag a single time!!) his bottle! 

I held him as he ate, slept, and ate again.  I talked with the nurses and discovered that he is already off of almost everything, and that his recovery is considered remarkable. I looked down at my little boy and noticed that his coloring was normal (not balmy and pale), and that he looked like the strong little boy I remembered before his heart failure and subsequent medicines were prescribed to him.  After 4 hours of holding his sleeping body in my arms, I had to reluctantly admit that Jacob didn't need me tonight for comfort and care like I anticipated.  The events of today had exhausted him physically as much as it has drained KC emotionally.  It was obvious that Jacob had every intention of sleeping the whole night through! So, I placed him in the arms of our ever-vigilant nurse and said my good-byes knowing that my sweet child would be in good hands as he slept.

The more I thought about it, the more it became very evident that Jacob is now beginning down a path where he will begin growing by leaps and bounds, he will have the energy to strengthen his muscles and progress physically like any normal child, and that his energy levels will be equal to that of any other child.  In essence, Jacob has a new lease on life and I have a feeling that he will be living this new life to the fullest!

I am forever grateful to everyone who has said prayer after prayer for us.  For all of the words of encouragement and support we have heard, the acts of service and kindness we've received and the well-wishes of those with whom we come in contact.  What could have been an emotionally devastating experience has in all actuality been a truly humbling and uplifting experience that has forever changed our family and our lives for the good.  I guess all the wonderful moments we have with Jacob from here on out are just icing on the cake!

Wednesday, February 2, 2011

Making Progress

Day 2 of Jacob's post operation procedure was filled with progress.  We showed up this morning to the hustle and bustle of two nurses just finishing up the extraction of his ventilation tube from his mouth.  Jacob was not happy, although I can't imagine that I would be either if I had a tube stuck down my throat and couldn't talk, cry, or breath on my own.  His temp was 102.6 and his CO2 levels were a bit on the high side.  So, they took blood and sent it down to check for infections which would cause the spike in temperature. 

However, by the end of the hour Jacob's temperature had dropped from the 102.6 to a fabulous 99.4 degrees F.  It seems that he had just been working hard to get that darned tube out of his mouth and his temperature had risen in the process.  Once the tube was out, all of his statistics stabilized, he calmed down, assumed the position (back slightly arched, and head tilted back as far as it can go) and fell back to sleep.  Occasionally he would wake up and they'd give him a small dose of pain killers, but they couldn't put him on an IV drip because every time they gave him a drip he'd fall into a deep sleep. His heart rate would dip into the 70's (it's usually hovering around 100 - 110), and his oxygen levels would drop into the 80's (usually around 90 - 95%) because he'd breath so shallow when asleep. Luckily, during the 8+ hours I was there I only saw them need to administer drugs 3 times. Other not-so-exciting, but still nice-to-see events included unhooking him from the temporary pacemaker, removing the sensors from his back and his forehead that monitored blood flow in his organs and brain, removing his internal thermometer, and weening him from 3 different medications.  We also saw the removal of one of his monitors, noticed he's down to 5 IV bags, and 7 pumps.

 The kicker was that by dinner time, Jacob began to wake up. What was really neat was that he acted as if nothing had happened.  His eyes were open, he was looking around, sucking on his lip (another trademark of his), and watching his mobile.  After another 30 minutes, he was asleep again without the help of medications and without a single peep or grimace from his face.  It was absolutely wonderful to see the calm back on his face and no sign of pain.

I talked with the nurse and she said that his tubes were draining almost nothing from his chest any more so the doctors were hoping to remove them tomorrow, as well as possibly the central line, plus they will be rooming him with another child which means he isn't quite to critical now that he needs his very own nurse all day long.

All in all, it was a good day full of progress. We didn't get to hold him as hoped, but that disappointment was far outweighed by the fact that it appears that our son is healing quickly and isn't experiencing much of the pain we had been so concerned about.  There is still much healing to do, and I've heard that removing the tubes will be painful, but we are seeing significant progress and that's truly what matters now. 


Monday, January 31, 2011

Operation Day!!!

Wow! It's been a long, emotional day for our family.  KC and I got up at around 4:00 a.m. and got ourselves and Jacob ready to go so that we would be at the hospital by our 5:30 a.m. check in time.  We made sure to dress him in his "Fix Me" onsie that his darling big sister, Elisha made for him:
Needless to say, it was an absolute HIT! The heart staff loved it! 

It was an often surreal moment for us as we finally got to meat with the nurses, go through all of our paperwork AGAIN and remind the doctors that, yes, we did want him tested for hyper coagulation (he tested within normal parameters) and yes, we wanted to make sure that he would be VERY sedated after surgery.  
We joked over the size of his file (now well over 5 inches thick - impressive by even the hospital's standards, especially for a 3-month old!), held Jacob for a few more minutes, and kissed our patiently wide-eyed infant son good bye as the hospital staff wheeled him away to be anestesized. 

Then we were done.

Our arms were empty, our hearts, full of anticipation and hope, and minds racing with all of life's 'what if's' imaginable.  All we could do was wait.  And wait. and wait. 

Finally, 4 phone calls and nearly 5 hours later, we were met with by both the cardiologist and the heart surgeon.  Both said that the operation went smoothly, his holes were patched, and his valves weren't leaking.  All they needed to do was get him situated in PICU and we could see him in a 1/2 hour.

Now, the cardiologist, the surgeon, and various other doctors and nurses all described what we would see in the hospital room when we showed up.  I had been a rock all day, but I wasn't sure if I could keep it together when I saw my baby hooked up to everything.  When we walked into PICU there were 5 people in his room all busily working around his bed hooking him up to monitors, bags, pumps, reading charts, organizing medicines, giving directions, etc.  It was like a carefully choreographed dance with steps and props all intertwined amongst one another.  It was actually quite impressive. 

In the middle of it all was our 11 1/2 lb, 22 1/2 inch 3-month-old Jacob so drugged up he didn't know what planted he was on.  And considering all that he'd been through.  That was a GOOD thing. 

I counted.  Jacob was attached to 5 different bags, 12 different pumps, and 3 different monitors.  There was no way to count the number of tubes coming in and out of his body - it was just one big rat's nest of tubes.
I don't know how I did it, but I didn't shed a tear.  I think the knowledge that he won't remember this when he's older helped. 

Everyone said that he was doing amazingly well considering everything and discussed the idea of possibly taking his breathing tube out later tonight.  The doctors would like to remove one thing per day - i.e. the breathing tube, the central line within the next 24-48 hours, the tubes in his stomach, etc. 

We were told that possibly as soon as tomorrow we will be able hold him, and if all goes well and he continues to progress as he has, he may go home as early as this weekend or possibly the first part of next.

Here's to hoping!!!