Bang! Bang! You've Been Shot! - RSV shots and immunizations

Why is it that everything seems to take four times longer than it used to 2 years ago? 

2 Years ago, I was working out 3 1/2 hours a day, lost 75 lbs, my business was on tap to break six figures in sales and I could fill most of the orders in 3-4 hours a day, I was in the Young Women's Presidency, carting  Nathan and Elisha to all of their various activities, and a full-time mom.  Now, 2 years (and 2 more children) later, there are days when I'm lucky to get changed out of my PJ's before KC comes home from work in the evening.

Today was one of those days - and I had KC home helping me out!  It was shot day for Courtney and Jacob.  Courtney came first.  Because of Jacob's birth in October, we missed Courtney's 18 month visit (and shots) with the pediatrician.  When things finally calmed down, it became very apparent that I couldn't put off immunizations forever and a date was set.  When we pulled into the doctor's parking lot this afternoon, Courtney assumed it was another "Jacob visit".  When I told her that this visit was just for her - today was "Courtney Day" she squealed with delight!!!  I didn't have the heart to tell her she'd hate me by the end of the visit. 

When we unstrapped her from her car seat, she quickly ran to the front of the office building where they have large buttons for persons with disabilities to push in order to have the front doors automatically open.  Pushing the buttons and watching the doors open is one of Courtney's favorite things to do at the doctor's office.  So, she immediately ran to the doors, pushed the button, ran through the first set of doors, pushed the second button and ran through the second set of doors.  Then, she ran to the other end of the lobby where the other children were playing and cozied up to one of the kids like they had been friends for decades.  It was the cutest thing!  We let her play in blissful ignorance until the nurse called her name and Courtney proudly ran to the nurse to present herself to be whisked off to her room.

Once there, she new the procedure.  We undressed her and took her to the scale to be weighed (nearly 30 lbs), she laid down to be measured (35 1/2 inches), and then we brought her back to her room to wait for the doctor.  As we were waiting, I made the mistake of telling Courtney that Daddy and I had had our shots yesterday and I showed her the hard, red bump on my upper arm from the flu shot.  One look at my arm and you could immediately tell from Courtney's face that she knew EXACTLY why she was there.  Her face changed to shock and horror, she grabbed her thighs (where past needles have been inserted for other immunizations) and ran screaming to the other side of the room.  It was all down hill from there and she didn't even attempt to be sweet for the rest of the visit. 

She took the 4 shots to her thighs like a trooper and screamed for only a few seconds, which was quickly stopped by letting her know of the Allred family tradition:  She who gets shots also gets ice cream!!! 

She quickly got dressed after that revelation, we stopped off at another office for Jacob's first Synergis (RSV) shot - 1 shot in each thigh (ouch), once a month for up to 5 months - picked up Nathan from school, then stopped at the local Dairy Queen for Courtney's much anticipated ice cream - Chocolate extreme blizzard!! 

Once she had some ice cream in her belly, those nasty ol' shots were a long lost memory and she was onto bigger and better things like, say, playing in the melting snow!!! :)  By the time we'd made our 3 stops, it was already nearly 5PM and our day had slipped away.  Hmmmm.  I guess I'll try to be productive again tomorrow.

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At least he won't get pregnant. Problems with Feedings, and Medication Mix-ups.

I apologize for not posting sooner.  Life around here has been crazy busy...as usual.  So, here's the update to let you know what's gone on the last several days.

The hospital wound up putting a feeding tube into Jacob and he finally got to go home on Saturday the 11th. It became very apparent very quickly that the feeding tube was not all the doctor had made it out to be.  Jacob can, indeed, feel the tube and spends a lot of time gagging, sneezing, coughing, etc.  In spite of what the doctor said, he still ends up gagging until he vomits at least once a day.  This gagging and vomiting continued to get worse and (even without the presence of food in his stomach) caused us to return yet again to the emergency room earlier this week to see if his ND tube had become dislodged.  Luckily the tube was still in place, but the emergency room doctor had a talk with the cardiologist and then sat us down to give us a little friendly advice.

The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us).  However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred.  He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux.  Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first.  However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem.  Thus, creating a bit of a catch 22

for Jacob.  The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better.  He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation.  Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems.  This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide.  KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.

The next day, I called her office to discuss the fact that Jacob had been completely removed from oral feedings because he couldn't keep the oral feedings down.  The only problem is that it took 2 hours for a nurse to call me back and when she did call me back I was informed that my doctor was not in that day and that she would forward the information onto the doctor the next morning.  What?!  I was supposed to let my 8 lb baby STARVE because my doctor wasn't in????  Nope.  I don't think so.  So KC and I worked the numbers as best we could, upped Jacob's ND feedings per hour to reflect the lost calories from the oral feedings and crossed our fingers that we weren't hurting out baby by messing with his feedings.



I finally got to talk to my doctor around 2PM the next day.  Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor.  I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients.  We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.

So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature.  Soooooo off to the emergency room we went again.  I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc.  He even got a lumbar poke to check for meningitis like Jacob did.  It was a bit surreal.  Somewhat eerie.  And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.

While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.

When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications.  As they were packing, I noticed that she had a purple box of pills in the diaper bag.  I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening.  She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah".  I looked at both of them and said, "Well, at least we know he won't be getting pregnant!"  Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)

What a perfect ending to another wonderful day!  But at least THAT is one boo boo we can laugh about!  :)

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.

 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.

She 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. 

I 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!!!