Thursday, December 30, 2010

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.

 Down Right Living: Help us to help others with Down syndromeAfter 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.

 Down Right Living:  Jacob remains happy while fighting reflux and heart failure.  Heart surgery is soon!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!!! ;)

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Tuesday, December 28, 2010

No News is Good News

Christmas was wonderfully uneventful at the Allred home this year!

 Down Right Living: Courtney loved opening presents on Christmas. Jacob laid on my chest as we watched our children and family open presents. Particularly fun was watching Courtney, our 19-month-old, open presents. Last year SHE was the baby in my arms as presents were being opened. But this year she discovered Christmas in full force!  The entire time we opened presents she was squealing with delight and we'd hear a chorus of, "Oh my goodness!", "Awesome!!!", "So Pretty!", and so much more!  I wish I'd had enough forethought to break out the camcorder for the event.  That little girl was in her element!  And it seems that each and every present she opened was received with the most enthusiastic squeals.  I don't think there was a single present she received that she didn't absolutely adore. Watching Courtney open presents with all of her enthusiasm was absolutely precious!

As for the rest of the day, it was wonderfully low-key.  I had spent much of the few days prior to Christmas secretly holding my breath that Jacob wouldn't suddenly find himself in the hospital again. So when Christmas came and went, I was able to sigh with relief and silently give thanks to Heavenly Father for the little miracles in our life.  Especially since December 26th, I came down with the crud.

 Down Right Living: Jacob broke 10 lbs! He is now heavy enough for heart surgery.So, Monday I dutifully called our pediatrician to have her check on Jacob (with the sheer amount of time I've been holding him, there was NO WAY that little boy was not going to get what I seemed to have caught). In deed, Jacob did have a small cold, but so far there is nothing to worry about and we just needed to break out a humidifier and keep an eye on him. Yesssss!!  I'll take "relatively healthy" any day!

Oh, and he BROKE 10 LBS!!!! :)

Our little boy is now 10 lbs 2 1/2 oz.


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Wednesday, December 22, 2010

Miles of Smiles

When all is said and done, today can be considered one of those good days.

Down Right Living: Our child has Down syndrome

Last night I pulled an all-nighter (Yep! Not a wink of sleep!) trying to finish Christmas presents, working on GAINs (assessments) for my sister, taking care of Jacob, and even trying to squeeze in a little bit of house cleaning along the way.  But today was the day we got to spend with the cardiologist going over Jacob's progress and discussing his heart surgery.  This was supposed to be a Dr. appointment that would last at least 2 hours long, so if I was going to get anything done it had to be while the family was sleeping. 

Our appointment with the cardiologist had been set weeks ago and we had even received a packet in the mail reminding us of our appointment, which I diligently filled out in anticipation of our visit. I started getting Jacob ready for the appointment at around 6:30 a.m. - bath, re-dressed his ND tube, got him dressed, packing his diaper bag, etc.  When we showed up at 8:30 a.m. the first thing out of the receptionist's mouth was, "We have you scheduled for 11:30 a.m.".  I looked at her and said, "No.  You have us scheduled for 8:30" and tossed her the paperwork, complete with the scheduled time on the front page, to her.  She looked at it and said, "Oh.  Hmmm".  Apparently they had 'lost' our appointment.  So, they had to scramble to find a way to fit us into their day.  We were told, "You're lucky! The doctor's next appointment is running late so we can squeeze you in!"  Um, no.  Apparently these ladies had no idea what kind of bullet they had just dodged.  I had not slept the night before, I had not eaten yet, and I was on my period.  Strike 3.  You're out!  Out of patience, that is.  With those three factors in play I was in noooo mood to play nice this morning and those ladies were darned lucky they didn't try to make us go home (which is a 30 minute drive, by the way) and have us come back in a few hours. 

So, we sat down and waited to have Jacob's name called......and waited....and wait...and waited.  45 minutes later, they finally called us. We got to weigh Jacob and he was up to 9 lbs 13 oz!!!  Just a few more ounces to go until he reached his 10 lb goal! The nurse did an EKG, which took longer to put all of the stickers and monitors on than it did to do the actual test!, took his blood pressure, measured his oxygen levels, and asked about his medicines.  Then we waited....and waited.....and waited some more for our doctor. FINALLY, he came into our room and sat down to talk to us about Jacob.

He asked us about his medical history and hospital visits, problems with feedings, whether he was getting the RSV shot, etc.  He asked us what our expectations were with the heart surgery, etc. He explained to us that he believed that Jacob's feeding issues were not going to go away any time soon and that lots of people usually have a surgery to close off the esophagus and put a feeding tube in through his stomach before they do the heart surgery, which is a much more permanent solution to his reflux.  I told him that I'd been told that Jacob would grow out of his feeding issues eventually and that I was prepared to wait it out rather than do a surgery to put a tube through his abdomen into his stomach permanently.  He was not too keen on this idea stating that he is an impatient man and that he doesn't like to wait for things that take too long and said that we could probably wait 6-8 weeks and if he isn't improving by then we should get the surgery done.  I still was not sold on the idea of creating a permanent solution to something that may resolve its self in time - especially a solution that resulted in feeding Jacob through his stomach for the rest of his life.  So, I'm opting to be very very patient with his feedings.

After much discussion, the doctor convinced us that it would be in Jacob's best interest to wait another 4 weeks before he gets his heart surgery.  So, we are tentatively scheduled for his heart surgery the 3rd or 4th week of January to do Jacob's heart surgery.  We will be going back to see a cardiologist in 2 weeks to choose a hard date and meet with a surgeon.  And the guesstimate that Jacob will be back in the hospital for about 2 weeks for recovery.

He warned us that this heart surgery would not make Jacob any less fragile and would probably not fix any of his issues. It was only going to fix his heart.  Hmmm.  That's not what he said at our initial visit.  I guess at this point nothing should surprise me and I should take everything with a grain of salt.  So, that's what I'm going to do.  Whether it fixes Jacob's other issues or not, this surgery is still a necessary part of his development and an essential step to his progress. So we will go forward with it.  If it helps with his other issues then BONUS! If not, we'll address each issue after he recovers from his surgery.  After our 20 minute conversation, he changed Jacob's prescription by increasing his Lasiks to .5 mg 2 times per day and sent him down to get an X-ray to make sure his heart hadn't grown too much.  By this time we'd been at the doctor's office for more than 3 hours and had a total of 30 minutes face time with the doctor and his staff.  Ugh.

On the up side, while we were waiting at the cardiologist's KC and I got to watch Jacob laugh in his sleep. It was sooo cute!

Then, later this evening we were having our nightly 'interaction' time where I'd smile, talk, and sing to Jacob to help him interact and begin working on mimicking the facial expressions he sees from me.  Lo and behold, I was grinning and talking to Jacob and he began to give me half-smiles right back at me!  Not just one random gassy smile, but several deliberate half smiles that just melted my heart! I wish I'd had my camera with me!

So, even though my day had a rocky start, I can definitely say that it ended with miles of smiles that makes all the other crud just melt away to the back of my mind.  It's the moments like that which remind me of why it is that I chose motherhood over the military and why I don't regret a single minute of that decision!
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Monday, December 20, 2010

Baby Steps - We'll take em'!

I think we've hit a record....2 days and still no emergency room! Woo hoo!!!! ;)

OK, maybe not a record, but it's been a nice, quiet couple of days filled with baby steps of improvement. I'm sure that this is in no small part due to the fact that our dear friend Melissa (who, by the way has 6 children of her own!) took all 4 of my kids during they emergency room visit (yes! She had 10 children at once!)  and proceeded to keep three of them for 2 days! That left us at home alone with Jacob in a nice, quiet, stress-free house for 2+ days.  I have to say it was nice.  And I think the lack of the usual chaos that usually ensues in  our home seemed to make a difference on baby Jake as well.
Jacob Allred: Down Right Living, after his open heart surgery
Jacob is not only taking 26 ml an hour on his ND tube, but he's taking 1 oz. of formula every three hours (without puking!!!), and even nurses occasionally (also without puking!!).  And to top things off, his gagging has gone down considerably the last couple of days. Now, if we can just get him to hold on a few more days!

We go in to see the cardiologist on Tuesday at 8:30 a.m. to (hopefully) get a concrete date on when his heart surgery will occur.  And, if he has gained as much weight as I think he has the last few days, he will show up at this appointment at 10 lbs +, which is our goal weight for surgery.  Then, after the 2-hour cardiologist visit, we'll spend some time with the Pediatrician regurgitating what the cardiologist told us and coming up with a plan of attack that will address all of Jacob's issues, who will take care of them, the sort of progress we are hoping to see, and what we need to do to see that progress.  I have a feeling that we will be rattling more than a couple of cages on Tuesday.

All in all, I'm excited for Tuesday.  Jake is beginning to improve physically, I think he's met his weight goal in spite of the feeding set backs, and he's even beginning to sleep on his own (i.e. not on my chest 24/7) for a few hours at a time.  It is sooooooo nice!   :)

Baby steps.....we'll take em!

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Saturday, December 18, 2010

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 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.

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

Thursday, December 9, 2010

Re-Defining Normal. Adding an NG Tube to Combat Reflux and Failure to Thrive.

Today I went to the hospital optimistic that today would be the day that Jacob would get to come home (again) to us.  Even though he had been throwing up for the nurses, I had not had the same experience since we'd been in the hospital and I was using the speech therapist's 37-step (OK, slight exaggeration..but only slight) feeding process for Jake.  It was my goal to show the doctor that, even though Jake has been throwing up for the nurses, he has not been throwing up for me because I have the time to devote to holding him for the hour he needs after his feeding to keep his food down. 

All went well up until 5 minutes before the doctor came in (seriously, we were only 5 minutes away from redemption!).  Then, 30 minutes after his afternoon feeding, I moved slightly, putting Jake on his back slightly and causing him to begin spewing all of his formula all over the room.  In his defense, I HAD moved him in the wrong direction.  And, from an entertainment perspective, it was AMAZING to see all of that formula spewing out of his mouth - I think he projected about 3 feet a couple of times.  From a concerned mother point-of-view, I couldn't help but deny that 1)  I didn't have the magic touch after all and 2) His vomiting is actually getting worse instead of better.

I sat down with the doctor for about 30 minutes and reviewed the options for Jacob.

1) We can insert a tube down Jacob's nose, down his throat, past his stomach and into his intestines.  This tube would give him the nutrients and the food he needs to gain the weight necessary to have his surgery, which she estimated would be about 2 months away if we use the feeding tube.  A few of the up sides included that there would be no cutting: they insert the tube through normal channels and would use a flexible tube that would not be uncomfortable for Jacob, but because it's easy to insert it is also easy to remove, so we'd have to keep a close eye on him to make sure he doesn't pull the tube out of his nose.  It also means that the reflux will not be an issue because they will be bypassing the stomach all together and going straight to the intestines.  So the throwing up will not be an issue while the tube is in. On the down side, it requires a constant drip, which means we can't just feed him a dose and be done for a couple of hours.  He's being fed all the time and may even forget how to suck if we don't continue to feed him little bits via the bottle.  But it would also mean that he might be able to come home as soon as tomorrow afternoon if he proves that he can tolerate the tube.

2) We could put him on ANOTHER medicine.  Dr. Moon explained that the medicine would help the stomach drain quicker, but it wouldn't completely alleviate the reflux issues.  She also informed us that the medicine they had in mind was recently black-boxed with a warning that it may cause permanent brain damage in some children. Because I STILL believe that 80% of this current problem is a result of his heart medications, I'm not comfortable with introducing yet another medicine into his cocktail of drugs - complete with interactions, side effects, and who knows what other effects it could have on him.

Jake with his NG Tube, FINALLY sleeping soundly

3) The third option she presented is that we could stay in the hospital and continue to try to get Jacob to increase his endurance until he can consume enough of the formula and keep it down on his own.  However, that means that we have to stay at the hospital for an unknown amount of time until he reaches the goals that the hospital has for him.  All I could think about was my dear friend, Marla, who was having feeding issues with her son in the NICU at the very beginning and how it took them 1 month before  her baby was consuming enough consistently enough that she could leave the hospital. 

KC and I talked about it and it was pretty apparent to both of us that the feeding tube was the lesser of the three evils for us. So, we're  hoping that tomorrow morning, Jacob will have the tube inserted and that he will be able to come home to us in the evening complete with his very own feeding tube and (I'm sure) many more instructions regarding his care, etc.

This, of course means that we will have to redefine what is normal for our family for a while.  We'll be looking at home health-care workers coming in to change and care for his feeding tube and food, more doctors visits, and being hyper vigilant to make sure that neither Jacob, or his dear sweet sister Courtney pulls the tube out of his nose.  Rather than bringing Jacob home to begin his life in our family, we will be bringing him home to focus on preparation for his heart surgery.  There will be no time to relax and just enjoy him. 

I guess now we hunker down, try our best to get him out of the hospital and STAY out of the hospital, and begin the count down until he can get his heart surgery sometime this winter.

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Monday, December 6, 2010

Failure to Thrive and NG Tube. A day in the life of a baby with Down syndrome

I'm beginning to wonder if my baby has a tendency to leave the hospital worse off than when he arrived.

This morning after researching all of the heart meds Jacob was on, I discovered that there were some drug interactions that were not being followed. However, because Nathan (11 year old) and Courtney (18 month old) were up last night and this morning puking, I was unable to run down to the hospital before they gave Jake his next dose of Digoxin. I did call the nurse up and expressed my concern and just about got into a rumble when she dismissed my concerns and told me that she'd forward the information onto the doctor after I pressed the subject further. Not one to be patronized and swept aside, I called our local pharmacist and talked to him about the medications and possible interactions to be considered and found out...the nurse was right.  I was overreacting. Although the Digoxin is not supposed to be taken with an antacid (he's on a form of zantac), Jake's particular medicine did not register in the pharmacist's computer as a potential risk with the digoxin, and therefore should be safe to use.  DARN IT!  I hate it when the nurses are right. 

So, I went down to the hospital and talked the nurse, apologized, and we had a good heart-to-heart about what I'm looking for and needing from the care of Jacob and all of the information they are providing me as a parent regarding his care.  And to her credit, Erin DID talk to the doctor after our phone call about my concerns and had his zantac changed to a different medicine that they were sure would not interact poorly with Jake's medicine. Darn it again!  I may just have to like this spite of my irrational need to be mad at everyone right now.

I got to spend another 4 hours waiting to talk to the doctor. While waiting, I discovered that Jake threw up another 3 times while I was gone the night before, and did not gain any weight overnight.  He'd done some pretty BIG vomits too, so he'd gone through every article of clothing as well as his sling and they had jimmy-rigged something that would have to do until the sling was laundered. 

I finally got to talk to the doctor around 3 PM, talked about the drug interactions and cleared the air with her as well. We discussed my need for a medical 'cheet sheet' and she asked why we weren't enrolled in the Sunflower Program - I guess if I talk to enough people about the program SOMEONE will get us signed up! lol We discussed his feeding and the spitting up, the results of yesterday's tests, and the tests that she wanted to do tomorrow. Again, she reiterated that his problems were due to reflux.  I again explained that there was no question that he had reflux.  I just needed to know if Jake just happened to have really bad timing and the reflux kicked in at the same time he took his medications, or if the medications were the reason he was having reflux. 

 Jacob with his NG tube due to failure to thrive and refluxDr. Starr said that they were going to do a 90 minute test tomorrow that would track how Jacob digests his liquids and how quickly his stomach drains the liquids into his intestines.  She said that if there was a problem with draining they would have to give him a medicine that would help him metabolize his food faster.  But, if there is nothing wrong, and he continues to throw up his foods, they would have to take a tube, place it down his throat, past his stomach and place it directly into his intestines so that they can avoid the reflux and get food into Jake's body so he can begin to gain some weight. Then, as soon as he breaks the 10 lb barrier they will make arrangements to have his heart surgery done.  Hmmmm that heart surgery seems to be screaming to reality much faster than I had anticipated. We've gone from Spring (April-May), to Jan-Feb, and now maybe as soon as the end of this month.  Wow.  I need to wrap my mind around that one.

The one thing I have noticed though through this whole 'reflux' thing is that when I hold him in my arms for feedings and after feedings he almost NEVER throws up.  So, in an effort to avoid a feeding tube, I've decided that it's time to go back to all-nighters in the hospital - holding Jacob in my arms all night long - so that he can sleep without vomiting and (hopefully) get a clean bill of health here in the next couple of days.  However, that also means that I'll pretty much be committing to holding him (or having him held) all day long until his surgery in order to keep his food down (sigh), but  at least he'll be sleeping, not puking, and we'll be able to move that much faster in the direction of surgery and (hopefully) a much healthier baby Jacob.
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4 Things Things to Be Happy About When My Child is Fighting For His Life in the Hospital

There's a long-standing joke in my family that one must NEVER EVER EVER pray for patience.  Because when they pray for patience, God decides the best way for us to learn patience is to give us some massive trial in our lives that we have no control over until we're beaten down enough to realize that the only thing we can do is PATIENTLY endure. 

Hmmmm.  Apparently I've been talking in my sleep again. 

I apologize for last night's ranting.  I should never blog at 4 in the morning.  What was I thinking?!

Yes, a few hours under my belt DID do me some good.  I was able to get about 3 1/2 hours of sleep before heading back to the hospital and relieving KC of his all-night shift with Jacob.  And when Jacob was in my arms, it only took seconds for me to realize that ultimately, all was right with the world again when we were together - regardless of where we were.  Having him snuggle up to me and contentedly sigh and fall asleep has a way of sapping all of the anger and frustration away.  We spent the entire day just sleeping and snuggling with the occasional interruption of those pesky medical workers earnestly trying to find out what was wrong with my baby boy.

We met with Ultrasound, where they strapped Jacob to a board, had him drink barium - laced sugar water (which he LOVED by the way - he had a fit when they took it away from him before he finished!) as they watched the flow of the barium down his digestive track to make sure that all of his anatomy was in tact, not twisted, and working properly.  Clean bill of health!

We then met with Radiology where they laid him on a table and gave him more liquids to check for reflux and to see if the liquids were coming out the "other end" in a timely manner.  Anatomically, Jacob looked fine, but the radiologist said that Jake had reflux all the way up to his mouth.  Soooo, to add to baby Jake's list of ailments we now have reflux.  But I'll take reflux ANY DAY over something like a twisted colon, or misplaced intestinal tracts, etc. 

With a diagnosis of reflux in hand, we met with a speech therapist (yep! the infant got to meet with the speech therapist!) who sat down with me during several of his feedings during the day to assess his current feeding habits and then to show me a modified feeding regimen will help inhibit all of Jacob's reflux so that he can keep his food (and medicines) down and his weight up.  The result? We now have Jacob on a prescription formula (who know that they even had prescription baby formula!) with a page-long description of how we are supposed to feed Jacob (How to mix the formula, position to feed him in, position for burping, when to change his diaper, position he's supposed to sleep in  and so much more!) They brought in a wedge and sling for his bed (If I can ever figure out how to download pics from my cell phone I'll download the picture of him in his sling - he looks like he's in a straight jacket!!) for sleeping. So, it looks like rather than waiting till Christmas to kick Courtney out of her Crib (she's getting a "big girl bed" on Christmas) - we'll have to kick her out early because the wedge and sling definitely won't fit in his cradle. 

Through it all though, I just try to remind myself that this visit isn't really life-and-death.  It's a little hiccup that can be quickly addressed, managed, and we'll be back on our merry way in no time.  In fact, once we'd met with the speech therapist the next two feedings were spit-up free!  That is until the night shift nurse came in, listened to us give her the run-down of what we were doing to manage his vomit, then ignored us and gave him his full dosage of Dijoksin and Zantac rather than giving him mini-doses to help him digest better.  Who'dve guessed that he'd throw up EVERYTHING 30 seconds after she squirted it into his mouth all at once? (sigh)  Luckily that will be the only dose she gives him before the next shift change. Hopefully we can get someone who will listen to us, what we are doing to deal with the vomiting, and try to work with us rather than doing it their way and having Jacob reap the consequences.  Plus, we now know what's wrong, and have the tools necessary to manage this problem at home.  Its just a matter of him gaining enough weight and keeping enough formula down to get him out of the hospital so we can begin doing what we know works for him rather than having to fight all of the various medical personnel at each shift change.

OK, so I REFUSE to end ANOTHER blog on a negative note, so it's important for me to say that yes, life right now is hard.  Yes, Jacob is going through a rough patch.  Yes, this has been an incredibly emotional experience.  But I've got to look on the bright side too.

  1. I've got an incredibly supportive husband who has done nothing but take care of our family, advocated for Jacob time and time again, and gone above and beyond the call of duty when it comes to taking care of me, our children, our home, and everything else that's been in upheaval the last 6 weeks.  I'm so blessed to have him as my rock right now. 
  2. KC's work has been such a tremendous blessing. He's had the ability to take almost a month off of work to help out  and be there for Jacob while he was in NICU and PICU.  Where else could a person do that and know that he will still have a job when he comes back?  We've been so blessed to have Avista, the support of their employees, as well as the incredible insurance that we will be making very good use of in the upcoming months and years. 
  3. I'm so blessed to have the family that I have - both on my side and on KC's side.  What a huge support system we have - both physically, emotionally and spiritually.  I am speechless at the outpouring of love and help that I've received from my family through prayers, babysitting, transporting, helping out around our home, meals, phone calls, blessings, e-mails and so much more!  The support we have received from our family has been unparallelled.  We've been so blessed!
  4. Where the family left off, my ward and our friends kicked in.  All I can say is "Wow!".  The meals, the phone calls, the rides for the children, the help around the house, gifts, friendship, shoulders to cry on, prayers, cards, and so much more.  I'm speechless. 
I've had more than my share of opportunities to see the other parents in the hospital visiting their children.  How lucky I am to be able to care for my child and not worry about the other three at home, or my home, or my husband, or any other responsibilities.  We have such a massive support system that we can rely on when necessary.  And so many people have little or nothing to rely on in their times of need.  I feel almost guilty for being blessed with so much by so many.  For all of you I am abundantly thankful.

Sunday, December 5, 2010

The Frustration of Being out of the Hospital only ONE day

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


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

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

Down Right Living: Failure to thrivePlease 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.

Down Right Living: Help us to help others with Down syndrome
Help us to help others with Down syndrome

Thursday, December 2, 2010

So Close to Discharging from the Hospital We Can Taste It!!

Here it is 11:36 PM on Wednesday evening and I'm sitting in the Pediatric unit of the hospital  counting down the hours until we can take Jacob home with us - FINALLY!

I just need to hold out until Saturday afternoon and our sweet little boy is ours!  No more pokes, no more chords or cables.  No more waking him up to get his stats every hour, weighing his diaper, measuring his formula intake, or charting his every movement. 

Jacob With his feeding tube.  Down Right LivingI came into the hospital today after being away for waaaaay too long and met with the shift nurse for the evening.  There was Jacob, laying wide-eyed and annoyed at having to STILL lay in his little metal crib.  It was the first time I'd actually ever seen him annoyed.  My little boy actually has an opinion!  lol

So I got permission to 'unplug' him from the monitors and just walk the halls with him for a while.  We were stopped several times by passer-byers as they ooh'd and aah'd over how cute he was, we gave updates to some of his previous nurses about his discharge status, and he got to take in all of the new sights and sounds that he'd missed out on by being confined to within 2 feet of his crib for the last 3 weeks.  Even as he began to nod off, he struggled to keep his eyes open so that he could see the new colors around him and look in the direction of all the new sounds.  Finally, the exhaustion got the better of him, and he fell asleep in my arms.  And I finally got to feel like a normal mother, walking the halls with her sleeping baby in her arms.  It's the little things that make one's day (or in this case, evening).

Jacob is doing GREAT!  He still has an IV in his arm which they are hoping and praying will hold out just a couple more days.  Gone are the heart monitors, and cables monitoring his respiration rates and heart beats.  No more beeping from the monitors sounding every time his vitals dipped even 1 beat or 1 percent from the desired levels.  His room is bigger, more secluded, and I can finally bring Courtney to come visit without risking getting asked to leave because she's too little to visit her baby brother. 

Down Right Living: Jacob with his dad
I sat down with one of our doctors before we left PICU and discussed the future, and what had been accomplished so far.  On Wednesday they did the final test on Jacob, inserting dye in through a catheter and checking his major organs, specifically his kidneys to see if anything was wrong and if the valves of his kidney were working.  The results said that everything was fine, so surgery on his kidneys is not necessary. 

My concern then became that the faulty valve was their original reasoning behind the ecoli.  So, if the valve wasn't the issue, what was?  Dr. Fry explained that Jacob had a urinary tract infection which is what resulted in the sepsis and the ecoli.  I asked her why, since he had been on antibiotics from the day he was born, the original antibiotics didn't kill all of these infections the first time around.  She explained that the infections could have occurred during the week that he was home because of the urinary tract infection.  She also said that it was likely that the original antibiotics just weren't sensitive to the existing infections, so a new type of antibiotic was needed to treat those new infections.  I asked her what we needed to do to prevent this from happening again and she said that there was nothing we could really do.  Hmmmm.  Not very comforting.  Go in for a stuffy nose. Spend 3 weeks in ICU.  No way to prevent it.  Great.
Down Right Living: Jacob Allred with his feeding tube
I talked to her about the clotting issues I'd originally talked to Dr. Mueller about and asked if any information had been dug up about whether Jacob had been tested for the coagulation issues. She said she didn't know anything about it, but said that that sort of testing wasn't normally done unless clotting issues were in the family history.  I explained to her that Jacob's uncle had been diagnoses with hyper coagulation, my father had a stroke, I had 1 sister who had a clot from birth control, and another sister who had a clot from a sprained ankle.  So, obviously, clotting issues are a definite possibility with Jacob because of his family history.  She said that she'd make sure to note it in his chart (that binder is like 3 inches thick with a rubber band around it to keep papers from falling out!!!) and gave me a list of questions to ask Les' doctor about his hyper coagulation and instructed me to request the test before each of his operations so that it can be addressed with his surgery and they can treat him for the possibility of clots. 

All in all though, I'm fairly confident that we're bring Jacob home as healthy as we can get him, and that we have the house as prepared for him as possible.  I'm holding my breath and crossing my fingers that all will go well for the next couple of months until his surgery.  Until then, I have this sinking feeling I'll become the ubber paranoid mother who is going to freak out about every sigh, every cough, and every sneeze that occurs in our house.  Just a few more months, right?

 Help us to help others with Down Syndome

The next phase? Jacob gets tested on the 15th by the physical therapist to assess his level of functioning and the amount of care and therapy he will need in the upcoming months and years to help him reach his milestones in a timely manner.  Hmm. This could be a very interesting assessment.

Sunday, November 28, 2010

7 More Days to Discharge...?

Well, that's what the doctors are telling us at this point.  I'm trying to be hopeful, but I'm not holding my breath.  Although we have had no new developments in the last couple of days, I'm not foolish enough to think we're completely out of the water yet either.

7 more days til discharge and how my baby's laughter rocked my world.
I got to finally sit down with Dr. Mueller tonight and pelt him with questions about Jacob.  He was a good sport and very patient with me as I asked question after question, looking for clarification about all of the different information I'd heard from so many different sources over the last few weeks. 

We discussed Jacob's IV and what will happen when (not if) it fails and they have to take it out.  He explained that a lot has to do with how long the IV is able to work.  He's hoping that it will continue to work for another 3-4 days (I'm thinking we'll be lucky if we get another 24 hours - Jacob's already crying when they try to flush the line).  Once they have to pull the IV out, he will then get together with the doctor from the Center for Infectious Disease and find out what the chances of a rebound infection would be if they stopped antibiotics early.  If the doctor determines that the chances are still too high for baby Jacob then Dr. Mueller would have to weigh the physical pain it would cause Jacob to try to give him another IV (several pokes and likely an hour or more of digging and crying) versus the pain of 1 shot per day into his muscle for the duration of his antibiotic treatment.  He said that if the IV came out and they determined that there were just too many shots, he would personally go in and install a line using a local anesthetic.  He just didn't want to put him under general anesthetic a third time because it was affecting his feeding, which could ultimately affect the amount of time it took for him to leave the hospital. 

We discussed his blood and the clotting issues.  I asked a few more questions than he could answer (the problem with having so many doctors looking at so many aspects of Jacob.  The Hematologist just hadn't conveyed to him whether he had done testing on Jacob and what those results were).  So, I'm expecting a few more answers in the next couple of days once he's researched Jacob's file and has been able to get together with the blood doctor.  We discussed the fact that there is a history of clotting issues in our families.  My father had a stroke, one of my sisters had clots from her birth control pills, another sister had clots from a sprained ankle, and my brother - in - law has had several issues with clots after surgeries.  The question for us is whether that family history justifies the amount of blood that they may need to draw from Jacob in order to do the specialized testing needed to check for a blood disorder.  It's my guestimate that right now, because of his condition and the sheer amount of blood needed (we're not talking a few drops - more like viles of blood) to do the testing, they will just modify how they treat him following his surgeries taking into consideration his family history.  And if clotting continues to be a factor, THEN we'll re-address the clotting. 

Monday Jacob has yet another test, although I think this is the last major test they will be doing on him before discharge (knock on wood!)
 They will be injecting die into him through a catheter and checking all of his major organs to make sure that they are all functioning correctly and that there are no other issues that need to be addressed (See? Not holding my breath. There is STILL possibility for catastrophe).  I think they're wanting to double check the kidneys and look at the faulty valve further as well as see if there were any other issues that were accidentally missed. But if all goes well, it should be smooth sailing from there. 

I was talking to Cathy, one of Jacob's nurses and she was examining the area from Jacob's last pick line.  She noted that the suture was right on his jaw line, which she stated meant that every time he moved his head while he was sleeping, crying, being moved, re-positioned, etc it would cause tension on that line and that was most likely what had caused the line to come out the second time - bad placement of the sutures on a place where there would be lots of movement. 

All I can say at this point is "what's done is done".  Let's move on and quit focusing on what has happened, and focus on what we're going to do to fix the issue we have at hand - how are we going to get all of Jacobs administered to him in the least amount of pain.

AND ON A BRIGHTER NOTE:  I was holding Jacob today after a feeding and the little boy LAUGHED in his sleep!  This was not a gas bubble, or a little stutter from breathing issues, etc.  It was an all-out giggle (something I didn't experience with Courtney until she was well over 5 or 6 months old!).  I remember thinking to myself that I couldn't remember anything his short little life that he could draw from to make him so happy he'd want to giggle, but for the next 15-20 minutes, I'd see little glimpses of smiles on his face as he continued to dream.  It totally made my night.  I wished I'd been able to take a picture!

It was then that I decided that this little boy will bring nothing but smiles, laughter, and joy to our family when he finally gets to come home.  He will bring a whole new perspective of love and happiness that we have been unable to have on our own without him.  I'm looking forward to life at home with Jacob.  I'm looking forward to lots of smiling and oodles upon oodles of laughter and giggling.  For that, I am holding my breath and trying to wait patiently for that day to come. 

Hurry home Jacob! We're ready to start our lives with you!!

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Friday, November 26, 2010

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 

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 a kidney stone!

Saturday, November 20, 2010

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????

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Thursday, November 18, 2010

Difficulty with Jake's Pic Line and Balancing life with other children

Jake has Trisomy 21 and is in the hospital.  They have difficulty inserting his pic line and we have difficulty balancing attention between his other siblingsTuesday KC got to spend the day with Jacob while I spent my time with Courtney.  It seems that she is beginning to feel the affects of her parents being gone all the time, so she needed to have some 'normal' time with her mother. 

So, as I was being mom to Courtney, KC got to hold down the fort at the hospital.  He got to be there as they started his pick line - although they didn't finish it.  They tried around 10PM while I was in the hospital but his veins were "slippery" so they weren't able to complete the process and will try again in the morning. His poor little leg looks horrible, but what are you going to do?  If they can't do it, they can't do it.  The problem lies in the fact though that when they attempted to complete the pick line, they damaged the vein making it unusable, and therefore giving the nurses no way of being able to administer Jacob's antibiotic cocktail to him.  No antibiotics means he keeps getting sicker, and with the infections he has, that means death.  So, obviously administering no antibiotics was NOT an option.  This meant that the nurses had to put in a new IV....AGAIN.  And the odds weren't in Jacob's favor. 

Yep, you guessed it...another 1.5 hours of picks, prods, and digging at every available vein on his feet, arms, legs, head, back to his arms, back to his legs, and finally getting a vein to bleed and work in his wrist.  It's just so odd that a little boy who's platelet counts are dangerously low would have such a difficult time with clotting blood.  Hopefully the doctors will be able to come up with an explanation here VERY soon. Until then, we were just focusing on the need for a peripheral pick line into Jacob so that he doesn't have to go through the torture of IV pokes every night.

I wound up staying up with Jacob all night long and finally left around 4 a.m.  He just wasn't comfortable and had tried to throw up at around 1 a.m. so I opted to hold him on my chest all night long and make sure that he didn't throw up.

On Wednesday, we were promised that Jacob would get his pick line first thing in the morning, so KC made sure to be here right at 9 a.m. But by 6 p, when I got there, Jacob still didn't have his line in.  Luckily, the charge nurse went to bat with us and called the internal radiation dept. and go them to agree to do the pick line at 7:30 PM.  I followed Jacob down, met with the 5 people that would be working on Jacob and left my baby in the hands of a very experienced group of professionals.  I went upstairs and waited...and waited...and waited.  Finally, at nearly 10 PM they wheeled Jacob back into the room.  The anesthesiologist informed me that Jacob was "unpickable" and so they opted to put an IJ (interior jugular) pick line into him, which means that it was a bit more aggressive approach to a pick line but had a higher risk of infection as well (Great! Just what we need.  Another possible infection!). But at least he had his pick line which meant no more IV torture! I also discovered that even though he has clotting issues, he really has a problem with lack of clotting - ????  At the location where they had put the pick line in his internal jugular, they had sutured the skin to keep the IV from coming out and put some gauze over the area.  However, 5 minutes after they had left, the area had oozed blood so much that it was seeping out from under the tape and gauze and dripping down his arm.  So the nurses had to remove the original dressings and put a new dressing of gauze on his chest to help absorb the blood.   They had put Jacob on general anesthesia and put a breathing tube on him.  However, the tube really irritated his throat which left him hoarse and with a really raspy sound whenever he breathed. So, again, I spent the night with Jacob in my arms resting on my chest and taking care of him every time he wiggled, whined, or cried. Didn't leave until 5 a.m. so that I'd be home in time to take Elisha to early morning seminary.  Lo and behold, it was snowing as I left the hospital.

I took Elisha to seminary and stayed up to do the dishes, tidy up the house a bit, and take care of Courtney while KC got up, got ready to go see Jacob and take Nate to school. KC spent the afternoon at the hospital with Jacob and was told that Jacob is experiencing some modeling, which means that his skin looks kind of blotchy or like marble.  They seemed to think this was due to poor blood flow and possibly from fighting another infection. They said that they'd be keeping an eye on it. The guy from the Center for Infectious Disease also came in and told KC that they HAD to get the lumbar poke done on Friday to check for meningitis.  KC told him that we were being told that his platelets were too low to do the spinal tap.  The doctor told him that yes, the platelet counts were low, but they were high enough to do the tap, and that basically the benefits outweighed the risks. They needed to find out if he had meningitis because the antibiotics that Jacob is taking now would not fight meningitis and they needed to get him on the antibiotics quickly if did have it.  No pressure.  Jacob continues to breath VERY raspy breaths. They've been going in and suctioning fluid from his throat, but it still sounds pretty bad. Soooo, I'm in for another long night. Luckily, the Allreds are in town and have offered to take Courtney for a couple of hours in the morning so that I can get a few hours of shut-eye.  I can do all nighters. I'm no stranger to them because of my work at AC Bouquet making candy bouquets.  But 3 of them in a row is a bit excessive even for me.  Thank heavens for family!!!! They really are lifesavers! :)