Saturday, November 13, 2010

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.

Jacob has Trisomy 21 and heart failure.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.

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 has Trisomy 21 and heart failure.  He's in PICU
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. 
Jacob in NICU with heart failure
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. 

Jacob in the hospital with heart failure. His heart meds created severe reflux and he had to get a tube put into his intestines so that he could keep food down.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 in the hospital with heart failiure
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....

Monday, November 8, 2010

Finding a Great Pediatrician When Your Child has Down Syndrome - What to look for

Jacob has been home a total of 4 days and we had our first doctor's appointment with his Pediatrician. They were recommended by every doctor in NICU as well as a couple of my friends who have children with Downs Syndrome.  So obviously, I had high expectations.  Aside from the the ladies at the front desk, I was really quite impressed by them.
Down Syndrome, Downs syndrome, Trisomy 21, Down Right Living

 I met with my doctor who checked his oxygen levels (good), his weight (he's gained almost 1 lb since birth), his liver and heart (for heart failure), and an assortment of other things.  She was great about answering all of my questions and taking time with me to make sure I knew exactly what I was in store for.

 Down Right Living - the blessings of having a child with Down syndromeShe made sure Courtney got her flu shot so that Jacob would be less likely to be exposed to the flu.  Since virtually EVERYONE in our family has been sick except for Jacob and me, I asked her when I should come in should I begin to see symptoms of a cold or the flu in Jacob.  She informed me that he has no threshold which means that the first sign of sickness I needed to bring him in.

We talked about the signs of heart failure (our cardiologist informed us to expect heart failure in the first month) which includes weight loss, sweating while or after nursing, panting, an enlarged abdomen from his liver, listlessness,etc. She checked him for the signs and said he looked well.

I asked her about when to get him circumcised, and she informed me that she did not recommend circumcision before his heart surgery unless he was already going to have another procedure because it could be too traumatizing for him right now (wow!)

Then she informed me that she wants to see me every week to monitor him and his health.  Plus, she does NOT want him in the waiting room when we come to visit where he'd be exposed to the other sick children, and that she'd make sure I was immediately directed to a room in all subsequent visits. 

 Down Right Living - the blessings of living with a child who has Downs syndromeI left the appointment feeling like I now had a doctor that:
 1) knew what she was doing and had a lot of experience in Jacob's disability.
 2) She cared about my concerns and was happy to spend as much time as I needed to make sure I was fully informed and prepared for upcoming events.
 3) I had been WAY too nonchalant about Jacob's condition and I needed to be much more diligent about his heart defect and keeping him germ free. 

Needless to say, I am hunkering down and preparing to be a hermit for the rest of the winter.  Luckily, the darned boy is so cute I think I could spend a YEAR just cuddling and watching all of his facial expressions!  It's hard to give him up to his dad in the evening so that I can work and get things done. 

He literally eats, then sleeps for 4 hours and repeats.  It doesn't matter how loud it gets around the house, or if I need to take him in the car to drop Nathan off for school. He just sleeps through it all and wakes up just long enough for me to feed him again.  Needless to say, it makes getting things done around the house MUCH easier! :)  How was I so blessed to have such a relatively easy baby? ....OK, aside from all of the doctors appointments I will apparently be having each week!!!