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.

Help us to help others with Down syndrome.  Donate to Down Right Living!

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.

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.

Help us to help others with Down syndrome