Recharging my Batteries - Nap times

I won't lie.  Today was almost completely unproductive.  All those late nights have finally gotten to me and so I got almost nothing done. 

KC and Courtney sleeping April 2009

Once the kids were taken to school, I had one hour to tidy up the house before the dietitian came over to check on Jacob's progress and to see if any changes needed to be made to his diet.  She got to experience first hand his gagging fits and seemed quite disturbed by the whole incident while I sat there with a towel under his chin just trying to catch all the saliva and bile he was throwing up.  She mentioned that she would see if she could put in a good word for us to get the liquid Prevacid rather than the tablet form or see if we can be put onto some other form of medication.  It would be nice, but I'm not holding my breath. 

About an hour after she left, Courtney was kind enough to decide she wanted to take a nap and she went down without incident. Plus, bless her heart, she slept for 3 hours!!!!! I'm lucky if this little girl will stay in her bed for 30 - 45 minutes on most days.  30 minutes after Courtney fell asleep so did Jacob while I was rocking and burping him.  He'd been fitful all day, so I just let him stay on me and the entire house got a 3 hour nap.  It was blissful.  We were awaken by Elisha coming home from school at 3PM and the normal everyday after-school life began.  But it was nice to accomplish nothing but get a nap in today.  It was a great battery re-charger.  I'm hoping that it will have recharged my batteries long enough to get through this weekend. Yay!

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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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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 nurse...in 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. 

Dr. 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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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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