The Start of a FABULOUS New Year!

Call me naive. Call me an eternal optimist. Call me down-right stupid.  I don't particularly care.  But I've decided that 2011 is going to be a FABULOUS New Year!

2010 was not my favorite of years by any stretch of the imagination.  I am 3 hours into this new year and I've decided that I am NOT going to have a repeat of last year.  Nope. Not me.  Not gonna happen. Nuh huh.

As I took stock of 2010 and began forming the goals for this upcoming year I realized that I had sacrificed last year by doing all the  nasty, icky, hard-to-do framework that will be necessary to make this year a good one.

Sure, in 2010 we spent about 6 weeks in the hospital, and numerous other days talking to doctors and specialists.  But in 2011 we will FINALLY be getting our heart surgery, and progressing down that road of recovery which will include a much happier, healthier, and more active little Jacob in our lives. Yay!

Yes, 2011 will have it's ups and downs but the experiences from the last 2 months have taught us to be better prepared both emotionally, and physically for what the next several months will bring.

Plus, I've never been the sort of person who lays back and lets life 'happen' to me.  I seem to have a tendency to run after it, catch it, and mercilessly beat it into submission until it bends to my every whim and desire.  KC often refers to me as a charging bull. 

Either way you look at it, I CHOOSE not to freak out this year.  I CHOOSE to make this year a FABULOUS one filled with joy, excitement and a sense of awe and wonder at each and every one of the blessings Heavenly Father sends our way. 

Thank you everyone for the love, support, words of encouragement, and numerous acts of service you have sent our way in 2010. In spite of it all, we have been truly blessed by each of you  and are privileged to call you family and friends. 

I hope that 2011 is just as fabulous for all of you as I'm SURE it will be for us!

HAPPY NEW YEAR!!!

Heart Failure and Reflux are Progressing, Jacob Has Discovered his Daddy!

Just 24 hours after visiting our doctor and being told that Jacob is in excellent health, we were back in her office watching her intently listening to his chest through her stethoscope.

After about an hour of her on the phone with various different specialists they finally concluded that Jacob needed to have his Lasiks increased to 3 times per day (instead of twice) and added another medication, Captopril, to his cocktail of drugs 3 times per day as well.  I'm not sure whether to be happy to stay out of the hospital again, or to be frustrated that he has yet another drug to add to his list of medications.  Plus, I soon discovered after leaving the doctor's office that the drug was so unique (she wants it in liquid form), our pharmacist doesn't even make it and it's a drug that insurance won't pay for so we'll be paying for this drug out of pocket.


This, coupled with the fact that he is now officially unable to handle ANY form of substance orally without gagging or vomiting it up.  This includes his own mucus from his cold, or the .2 ml used to attempt to get his Prevacet down twice a day. It's a frustrating feeling to know that he's getting worse and there is nothing we can do but sit and watch this train wreck happen.  Luckily, we have 1 more week to go until we meet with the cardiologist to set a hard date for surgery.  I'm hoping we can hold out until then.

On the brighter point, it's been so much fun watching Jacob grow physically stronger.  He's holding his head up although he's still not able to keep it from wobbling (baby steps!) and he's beginning to take control of his hands - he spends lots of time swiping at me as I try to give him his medicines.  He's become much more alert as well.  Last night he spent the evening in KC's arms as I tried to get my to-do list done.  All evening he would crane his neck upward and just stare at KC and make the funniest faces as he watched KC talk and go about his tasks.  You could tell that Jake was just loving spending the time in his daddy's arms, playing with his glasses, and playing with his beard.  His personality is finally beginning to emerge and it looks like he will be a VERY busy little boy full of smiles, mischief, and oodles upon oodles of curious energy.  Heaven help us!!! ;)

The Frustration of Being out of the Hospital only ONE day

So, we have good news....and we have bad news.

Good news is, JACOB CAME HOME A DAY EARLY YESTERDAY!!!!!!!!!!

Bad news is......he was re-admitted again today (Saturday) evening.

@!#$ @#$%^$%^ $%&^^#%$^ %&*(&)*(&^%*%!!!!!!!!!!!!!!!!!!!!!

Please excuse my mental rant as I stomp up and down, kick scream, throw things and punch holes into my walls....all in my head of course....the kids are sleeping.  I wouldn't want to wake them.  (P.S. - today would NOT be a good day to call me and see how I'm doing - just let it be.
)

It's 4 a.m. and I've just found my way home from the emergency room AGAIN.  One day after bringing Jacob home from the hospital.

He lost his IV again on Friday morning and the Dr's didn't want to have to put another one in him because it was so hard to get in and they only had two more dosages of the antibiotic, plus we're right smack in the middle of cold and flu season and he told me that Jacob would be safer at home than in pediatrics with all the sicks kids.  So, he set up to have us go see our pediatrician for our final dose of antibiotics via deep-muscle shots. 

So Friday I scrambled around, spent 3 hours to get him discharged and brought him home.  He'd been having problems with his feeding for the last 3 weeks, which we assumed was a result of his new medicines - lasiks, digoksin, Vitamin D and Zantac.  The nurses had been 'tweeking' his route of administration - when, how soon before/after feedings, etc of the medicines because he seemed to keep throwing up all of his formula and the only factor that had changed before admission was his medicines.  Before admission he never even spit up. So, we were sent home with suggestions on how we might better be able to keep Jacob's food down at home.  Other than that, he had a clean bill of health.

His first night home, was uneventful albeit restless.  He wound up sleeping on my chest as I rocked him and patted his back in the rocking recliner all night long.  He just couldn't get into a restful sleep so I'd pat him till he fell asleep.  And when I'd fall asleep and quit patting him, he's wake up and start to wiggle again. Thus was my evening.

During the day, it was again uneventful, yet restless, marred by several bouts of vomit.  Finally around 8:00 p.m. KC was feeding Jacob about 2 oz (he used to drink 4 oz at a time, but now he can only stomach 2 if we're lucky) of formula and he threw it all up.  The thing is, he hadn't had any medicines since 5p.m.  there was no reason for him to be sick.  This, plus the fact that he couldn't keep his regular formula down had us worried because now we couldn't blame the meds and now we didn't think he was getting enough formula to stay down to sustain him for very long - he was just constantly hungry.

So, KC called the hospital who told us to call the pediatrician who told us to go back into the emergency room.  They did an ultrasound on his stomach and did X-Rays.  All of them came out clear.  But the doctor decided to admit us anyway because Jacob had only gained 3 oz in the 3 weeks since he'd originally been admitted.

OK, Riddle me this, Batman????  If his weight was such an issues, how the HELL did they discharge us the day before????  They weighed him when he was admitted and they weighed him just before they left.  Why was this weight issue not caught and addressed?  Here we are BACK in the hospital full of sick children, trying to figure out how long THIS visit will be.  And why, oh why, did I have to give all of the doctors and nurses all of Jacob's medical history, medicines, dosages, etc. AGAIN,  and then have to give an explanation of why I was adamantly REFUSING to let them try to put an IV in his little body this morning when I'd just been there for 3 weeks and only left 24 hours before? Why is there such a breakdown of communication?

Grrrrrrrrrrrrrrr.  I've got to get some sleep. I'm just getting madder and madder by the second.  Maybe a couple hours under my belt will do me some good.  Maybe, oh maybe, I'll be able to get through the day without punching something or someone over this whole debacle.

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Losing Pick Lines and Navigating the Mass of Doctors Working on Jacob

Its been a few days since I've taken the time to post anything new in the Allred Home.  This last week has been Thanksgiving week which means we've been blessed to be surrounded by our friends, family and loved ones all week long. We have been so incredibly blessed to be surrounded by so many loving and supportive people in the last several weeks.  So much so that our 'cups runneth over'.  My house is sparkling clean from top to bottom, I have had more sleep in the last week than I have had in the last 2, I haven't cooked a meal in weeks, and everywhere I turn, someone else has been showing acts of kindness and love to our family.  We have been truly blessed by all of our friends, family, and members of our church. All I can say is "wow" - and try REALLY HARD not to choke up with emotion and gratitude from the overwhelming sense of love we have felt from you all.  Thank you.

At times it can be difficult to spend so much time with Jacob at the hospital when all the rest of our family is here from out of town.  Luckily, everyone has been very understanding with the circumstances, and have even taken shifts with Jacob so that I can get more than my customary 3-4 hours of sleep per night and try to pretend to have a semblance of a life.  Courtney has begun to show the effects of me being gone so much, but the Aunties and the grandparents have stepped in and spoiled her rotten this week.  She has taken to the whole group and asks for them whenever we are not around. 

For the most part, little Jake has been an absolute trooper.  They finally got an internal jugular pick line into his little body at the beginning of the week, only to have it "fall out" when they changed the dressing 2 days later.  How something embedded into the body 6 inches via surgery by specialists just "falls out" on its own is beyond me, but I try to give them the benefit of the doubt.  To their credit, the nurses were able to get an IV into Jacob in less than a 1/2 hour (MUCH better considering the norm is about 1 1/2 hours of screaming on his part!) and were able to get a new IJ pick line in about 6 hours later after he'd waited the customary amount of time after his feeding to go under anesthesia. 

To his credit, the doctor came in and talked to KC and apologized profusely and promised that something like that would NOT happen again.

We thought all was taken care of and we were well on the road to recovery (they were talking 10 more days of antibiotics then home!) when we got a phone call this morning from Dr. Mueller again.  The nurses had been cleaning Jacob's pick line again because there was fluid build up and pulled it out again!!  Needless to say, I nearly came unglued.  No one has talked to me about it yet (they keep seeming to want to talk to KC - I think they're trying to avoid the emotionally crazed mom) but this is beginning to get ridiculous.  Whenever I DO get to talk to someone about Jacob, his infections, the estimated time he may or may not be in the hospital, etc.  I seem to get a different variation of the same story. 

There are so many people working on Jacob and everyone seems to have their own area of expertise.  So, there seems to be little communication among one another about what is going on, the official diagnosis, and how we are going to proceed.  For instance, Dr. Mueller told KC today that they will not be putting in another pick line into Jacob again for fear that it will just come out again.  They want to keep his existing IV in for as long as they possibly can (they're hoping for 4 or 5 days).  However, that still means another 4 or 5 days that he needs antibiotics, but will have no means of administration because all of his little veins are completely exhausted and unable to maintain an IV - this is pretty much the last IV they can put in him.  Soooo what do you do when your baby can't hold and IV, he can't hold a pick line, and he NEEDs to have his antibiotics in order to leave the hospital? Shots. lots and lots of them.  They'll give him shots right into his legs filled with the antibiotics several times a day.  Great.   HOWEVER, as we were leaving the hospital today, one of the nurses stopped KC and was talking to him about the pick line and seemed to indicate that she'd be talking to the doctor and see if there was another pick line alternative.  I heard mention of putting a line into his femoral artery??  Who knows.  We'll see what tomorrow's doctor says about it all.

It's kind of like the duration of our stay here at the hospital.  If you talk to one person, we'll be here for 4 weeks.  If you talk to another it is 3.  If you talk to another we have about 10 days, etc.  I think the duration of our stay will all depend on who is in charge on which day, and what kind of mood they are in at the time...lol. 

To say the least, I am mastering the art of patience and how to bite my tongue.  It does me no good if I start yelling at the nurses and become the 'mother from Hell', does it?  Although I must say, my patience is only going to last so long.  I only have a few drops of it left.

...This too shall pass.....like a kidney stone!

Family visits and taking time for myself while Jake is in the Hospital

Friday was a relatively good day.  Jacob's platelet counts are up to 71,000 which means that he is 29,000 away from the 100,000 goal that we need before the doctor will do his spinal tap for meningitis.  He is still modeling (splotchy look to his skin), but he is doing sooo much better this evening than he was last night.


KC came in bright and early this morning around 6 a.m. and took the day-shift for me.  He mentioned that he met with the Urologist who explained that his kidney issues needed to be addressed, but we needed to take care of the infections first.  So, they just wanted to put him on antibiotics until his surgery. 

Jacob spent most of the morning eating small quantities of milk in the morning, but the amount grew as the day wore on.  At one point he was up to 4 oz. again, but wound up throwing it ALL up again.  It's still kind of disconcerting that he's throwing things up, but I'm thrilled to see the progress (and lack of new developments) over the last 24 hours. 

I took the night shift again and had KC's family come visit.  Aunt Karen, Aunt Tonya and Grandma Allred all came and visited Jacob, held him and gave me some much needed 'adult' time.  Grandma Allred really seems to have the touch because she was the last to hold Jacob before they left and that little boy had some solid hard-core sleep time for a few hours after she left.  It was soo nice to have him sleeping so soundly and not waking up every 15 minutes because he was uncomfortable.

I even got to go home early - I left around 3:30 a.m. confident that he wouldn't be choking on his own phlegm or throwing up in his sleep and got to have 5 hours of my own hard-core sleep.  It was nice to wake up knowing I could face the world today.  :)

I came into the hospital room and saw Jacob sleeping like a baby.  Yay!  And aside from the occasional doctors visits and nurses checking on vitals, he's continued to sleep deeply for the last hour - thus my quick(ish) blog!!

They did another platelet count and said that his counts are up to 81, 000 (only 19,000 to go!), There is no longer ecoli in his urine and there are no new bad developments.  Dr. Mueller even mentioned we might get moved back to Pediatrics in the next day or two but said that they were in no hurry to kick us out ;)

Sooo, today is starting out to be a good day.  Hopefully, I won't have reason to get on this blog and write again today. No news is good news, right????

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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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!!!