Progress is Progress - Jacob's diagnosed with sepsis, e-coli, and possible meningitis

No doubt about it, yesterday was a TOUGH day.  But it's amazing what 12 hours can do to help your perspective.  That and the fact that when we came in to see Jacob this morning he was peacefully sleeping like a little angel.

 His coloring was less dusky, and he looked like he wasn't in any pain (yay!)  We met with the doctors and nurses and discovered the following:

Jacob's platelets had fallen last night to 17,000 and at one point his white blood cells were as low as 5,000 - neither of which are good numbers AT ALL.  They discovered that he has Sepsis ( http://en.wikipedia.org/wiki/Sepsis and http://en.wikipedia.org/wiki/Neonatal_sepsis ) which is a blood infection.  This means that they have put Jacob on 3 IV antibiotics.  They did not end up doing a platelet transfusion because when they checked his numbers again later in the evening they were rising on their own.  And since they did not do the transfusion, they did not do the lumbar poke (spinal tap) because they need the platelets to be higher to help combat infection and to 'plug' up the hole that his created when they take the spinal fluid from his back.  However, once the platelet counts are up, they still want to check the spinal fluid because they need to find out if the sepsis has spread to Jacob's brain.  If it has spread to his brain then the antibiotics will have to be administered for another week. Right now, the antibiotic regimen will be a 3 week process.  If the sepsis has spread to his brain, they will have him on IV antibiotics for 4 weeks.  This pretty much means that Jacob will be in the hospital for at least 3, and possibly 4 more weeks (sigh). 

However, I can't help but feel blessed that they found the sepsis so quickly.  I had anticipated 3-day cultures and not having any answers until Wednesday.  The fact that they found the Sepsis so quickly means that they can treat it quicker, and were (hopefully) able to ward off any of the major side effects (or death) from it. And, from what I've read about Sepsis, this is not something you want to mess around with.  It's serious stuff, and darned near impossible to diagnosis in infants until you're at the major organ failure stage.  How blessed we were to already be in the hospital around all of the medical care he needed when he tanked last night. 

We also discovered later in the day that Jacob has e coli in his urine, but that issue should be resolved with the antibiotics he's already on.  They took another echo cardiogram this morning and told us that no damage was noted to the heart from his 'episode', so what that means is that once the antibiotics have run their course, the cardiologist will continue with Jacob's 3 new heart medicines which he will be taking until he has his heart surgery.

I'm getting the impression that waiting 6 months until his surgery is fairly unattainable - we're looking closer to the 3 month mark.  But I guess miracles can happen, so I'm choosing to hold out hope until someone sits me down and gives me a surgery date for Jacob. :\

Other than all of the new information to digest, today was pretty uneventful.  They let Jacob begin to feed again, so I got to bottle feed him today and cuddle with him (I think that was more for my benefit than his!) for a while.  And it was nice to hold him and know that today was a relatively pain free day for him.

At the end of the day, although we are faced with the fact that Jacob will be in the hospital another month, he is in good hands and he is making progress.

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When it Rains it Pours

Today (Sunday) KC and I went to the hospital with the assumption that we would be discharging Jacob from the Hospital.  He had responded well to the Lasiks and they were going to put him on two more medications for his heart.  We showed up at the hospital with a new outfit in hand and walked in to see our 3-week-old baby boy swaddled in his blanket in the bed sleeping so peacefully.  It was so nice to see him there so calm after such a hard weekend. 

Bucklee, our nurse, came in and introduced himself. He let us know that they had just given Jacob his latest dose of meds and tried to feed him, but he only took 1 ounce, so if we wanted to hold and feed Jacob that should be fine.  I, of course, immediately gathered my baby into my arms for a little bit o' lovin' and cuddled with him for a while.  I tried to offer him his bottle, but he just would have nothing to do with it.  Pretty soon, his heart monitor began spiking.  His heart rate would peak to the 190's (normal for Jacob is the 130's), setting off his alarm, then would go back down.  It did this several times over the next 1/2 hour, and I began to feel Jacob getting warmer and warmer. 

By the time Bucklee came back in to check on us, the monitor had alarmed almost 10 times and Jacob was beginning to look a bit listless and pale. The nurse took one look at him, broke out his stethoscope and began his inspection.  He suggested I put Jacob on the bed so that he could inspect him more.  Just as I began to lift him up to put him on his bed, Jacob began vomiting large amounts of formula.  Bucklee got him onto the bed and began calling for backup.  The alarms began sounding off, the cardiologist was paged repeatedly, and a frenzy of medical workers began working on our baby boy right before our eyes.

One person was trying to suction the milk from Jacob's mouth, nose, face, etc.  Another was putting a tube down his nose to suction any milk from his lungs, etc. Another was monitoring the heart rate and calling for an EKG. Another was checking his temperature (102.5 F), another was calling the cardiologist, another couple were trying to draw blood (to no avail - that boy just doesn't bleed!!!), and another was giving directions and making sure that all the bases were covered, etc.  It was chaos.  Finally, they got him stabilized and immediately took him back to Pediatric ICU.  Obviously our baby was NOT going home today.

After thing settled down a little, they took his EKG, took more X-Rays, Tylenol was given to bring down his temperature, and they were finally able to draw blood for almost 1/2 dozen different tests, it was determined that he most likely had the onset of some sort of infection and they needed to find out what it was and put him on antibiotics.

All KC and I could think about was how lucky we were to still be in the hospital when he 'tanked' like that.  Imagine the catastrophe it would have been if Jacob was home and that happened.  Yes, what happened was HORRIBLE.  I wouldn't wish it on my worst enemy, but it occurreded in the one place where it could be managed and stabilized by knowledgeable people quickly before any real harm or damage occurred. 

Eventually, KC and I quit hyperventilating, began talking to the doctors to assess what the 'episode' meant and where to go from there.  We let the nurses do their thing, and we tried to gather as much information about Jacob as possible.  Eventually, they put a tube into his stomach to help with the distention of his stomach, put Jacob on IV fluids and began feeding him through IV's until they were sure that he wouldn't throw up and inhale any fluids into his lungs.  They told us that as long as the IV was in, Jacob would be fed all the nutrients he needed, but he's still be hungry and would want to eat. 

So, when he began to cry, I picked him up to try to comfort him with a Binky.  That worked for a few minutes, until Jacob realized that it was me who was holding him and he decided he wanted to be fed NOW!!!  He began rooting around for food and getting madder and madder.  He was twisting as far around as he could, arching his back, stiffening up, etc.  Then, all of the sudden, his heart rate spiked again,  he stopped moving, his eyes rolled back, he immediately went limp in my arms and then became unresponsive.

KC immediately called the nurse, we put him on the bed and the nurses began again working on him to get him to wake up.  The doctors were called again, more assessments were made, more blood tests were taken, and we spent much of the rest of the evening shell-shocked.  The nurses came in to do more blood draws and I "took a walk" because I didn't think I could handle listening to another 1/2 hour of his screaming while they tried to draw blood from his little body.  KC stayed and rubbed his head to calm him while I wandered the halls for a while. 

When I came back, he told me that Jacob 'passed out' at least twice more while I was gone and was so lifeless during the blood draw he didn't even wiggle or cry.

We eventually found out that his platelets had fallen to below 17,000 (they had been 72,000 earlier in the day) which meant that they wanted to give him a platelet transfusion.  They still thought he had an infection, but didn't know what it was. They sent several blood tests out to for cultures, which would take about 3 days before we could get results, and they wanted to do a lumbar penetration, which basically meant that they wanted to take some spinal fluid from him in order to rule out meningitis. 

We met with a hematologist (blood doctor) and he explained to us the issues with his extra thick blood and their planned course of action (of course he ordered a couple of blood tests as well).  We talked to the cardiologist a few times and they decided to take Jacob off of two of his three medicines until he was stabilized.  And we had several nurses constantly coming in and out of his room over the course of the rest of the evening.

By the time we went home at 7:00 PM this evening KC and I were emotionally and physically spent.  Jacob was absolutely exhausted beyond belief as well.  But, to their credit, the hospital staff seemed to get Jacob to the point where he was turning a corner and beginning to get a little bit better.  We left that evening knowing that he was in good hands and counting down the minutes until we could see him again in the morning. 
 

Hopefully today will bring us much better news and a much healthier baby...

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Why you should write all your doctors, medicines, and appointments down and keep them with you.

"What's the Name of your Pediatrician?"

"Valley Young Peoples' Clinic."

"Who is your doctor there?"


"Um, I'm not sure.  It's a conglomerate of doctors.  I know she's the newest doctor from Texas."

"OK......? Who's your cardiologist?"

"I'm not sure. He's one of the hospital doctors.  We're seeing him on Friday, but I don't know his name."

"You don't know his name? Do you know what he looks like?"

"No." I shrug my shoulders in exasperation "In the last 2 weeks I've had so many doctors come in and out that I can't keep them all straight. When I left NICU they gave me a list on a sheet of paper and told me I needed to show up to all the appointments."

 At this point in the evening I was pretty much overwhelmed and realized I REALLY need to be better organized about my baby's life and medical issues.  I'm way out of my league here.

Jacob had been slightly congested for the last 2 days, but being a mother of 3 other children, I thought nothing much of it.  There was no runny nose, no coughing, just a little raspiness that came and went throughout the day.  Then KC noticed last night that Jacob was acting a little 'unsettled'.

Basically, a normal day with baby Jacob entails waking up, feeding him, letting him sleep for 4 hours and repeating the process.  All he does is eat and sleep.  And he sleeps through EVERYTHING.  Courtney could be screaming like a banshee and Jacob would sleep right through it.  Last night, though, he seemed a little bit 'wiggly'.  He woke up easily, and squirmed a lot, so I cuddled with him and we fell asleep in the recliner, where we stayed the entire night.  He'd wake up every so often and wiggle a little bit, I'd rock him for a minute or two, he'd calm down and we'd go back to sleep.  Nothing monumental.  Just out of the norm for Jacob.

Finally, today around 3 PM KC decided that we really should call the doctor "just in case" (I was leaning towards just waiting it out over the weekend because I already had a scheduled appointment for Monday Morning - he could make it, right?) But after my doctor's "He has no threshold" talk last week, I agreed to call and give them his symptoms and let THEM decide if we needed to come in.  I called and gave the nurse his symptoms and she had us come in 45 minutes later to see the doctor.

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2 hours later the doctor told us that although his lungs sounded clear she didn't like the way that Jacob was laboring to breath and that she wanted us to go to the Sacred Heart Emergency Room for an echo cardiogram just to be sure.  She informed us that it wasn't serious enough to send him in an ambulance, but strongly advised against stopping at a McDonalds on our way to the hospital. 

Um, OK.  I guess we're not going to stop at home to pick up his diaper bag which we'd so intelligently forgotten in our haste to get to the doctor in the first place.

So, off to the Emergency Room we drove.  30 minutes later, I walked in, the nurses surrounded me in the waiting room (the doctor had called to let them know we were coming) and we were whisked off to a room before I could even finish the 4 line triage sign-in sheet.

Jacob's little toes while in the hospital

They checked Jacob out and decided he needed an IV.  Oh boy.  In ICU he'd been poked and prodded so many times he'd run out of veins and they put one in his head!  We warned the nurses and they were confident in their abilities so they began to prep Jacob for his IV.  2 hours, 4 nurses, 10 pokes/digs/failed attempts, and countless agonizing minutes of listening to my 18-day-old baby scream in agony as they tortured his little body just to put in an IV, the nurse cried "Uncle". She told us that they were going to leave the IV to the PICU nurses on the 3rd floor, and that we were going to have to admit Jacob to PICU. 

KC asked why he wasn't going back to NICU and they told us he was already too old for NICU!!  Gone for 8 days and the little boy is already too old!

So up to PICU we went with Jacob in my arms, exhausted from his screams of pain. They began the process of trying to install an IV again.  This time I couldn't handle it.  KC graciously volunteered to stay with Jacob while I wandered the halls for 20-30 minutes.  It wasn't so much the crying, as it was the fact that I've been where that little boy was at that moment in his life.  I've felt the doctors poke and dig, re-poke, stretch, pinch, warm, cut off circulation, etc.  For a grown woman who is prepared for the pain (IV's have been an ongoing problem for me since Elisha was born 15 years ago), having an IV in has always been one of the most painful parts of giving birth.  And to know that my 18-day-old baby boy had to endure the pain not knowing WHY he was being hurt just broke my heart. 

FINALLY when he had his IV in and things got settled, we discovered that his potassium levels were extremely high, which could cause damage to his heart, there was fluid around his lungs and heart, and that his heart had enlarged.  They put him on oxygen therapy and fluids to help bring down his potassium levels and "Lasiks" to get rid of the fluid around his heart and lungs.  So, this was the heart failure the NICU cardiologist had told us to prepare for, it's just that I wasn't expecting it to happen so FAST after being released and with so little warning or symptoms.  Jacob will remain on "Lasics" after he leaves the hospital, whenever that may be.  We're not quite sure yet.  But we're hoping they can get things managed so that he can leave on Sunday.  A lot depends on what the tests tell us tomorrow.  They will re-test his potassium levels at 4 a.m. and he has another (his 3rd since being born) echo cardiogram scheduled for the morning. 

Jacob with his Aunt Tonya visiting from Utah

The nurse asked me when we were planning on doing his surgery and I told her we were aiming for Spring after cold and flu season.  She reminded me that that was merely a goal, not a for sure thing.  I agreed and told her I understood that our Spring date was merely a goal and that anything could happen between now and then.  I wonder if that was her round about way of saying, "Don't count on it". 

Maybe I should become a little bit more prepared.  It's time to learn names, get them in my speed dial, and have everything ready "just in case" an emergency like this one comes along again....