GI Update

So I was really hoping that Justin would be discharged from the GI clinic after his last appointment.  Well, not so much.  The Dr. was not happy with his weight gain, which really surprised me seeing as he gained 3 lbs in a year and according to Dr. Hirsch that's better than the average weight gain for a child that age.  Even after we told the Dr. how well he's eating and chewing food she wants us to resume occupational therapy because she's concerned with J not being able to process his food, resulting in the poor weight gain  The Dr. also wanted us to talk with the nutritionist which was a total waste of time because what she recommended we're already doing.   

Anyway, similar to my decision to wean J off of the Prevacid I made the executive decision to forgo therapy because he definitely doesn't need it.  I still wanted confirmation of my decision though, so after the appointment I immediately called Dr. Hirsch and she 100% agreed with me.  I love her! Not only because she agreed with me, lol, but because she tells it like it is.  She sees the big picture, where the GI Dr. seems to be looking at where a 3 year old should be and not taking into consideration his history. 

GI Appointment

Not much to report; this appointment was very uneventful and almost a waste of time. We did a lot of waiting just to be told that there's not much more the Dr. can do at this point. J's gaining weight, although at the very bottom of the growth chart, he is following his own curve; his stools are normal and regular; and his reflux, for the most part, is pretty controlled with medicine and usually only rears its ugly head when he's sick. He rarely throws up just out of the blue, but nonetheless he'll continue to get Prevacid once a day.

One good thing is that we were given the OK to make the complete switch from Pediasure to Carnation Instant Breakfast. Other than that the nutritionist said to just continue on with what we're doing.

So, we go back in 4 months for a follow up. I wonder if that point we can start weaning him completely from the Prevacid, transition to whole milk and get discharged. I'm keeping my fingers crossed.

Running on E

That's how I feel after getting about only 6 hours of sleep this past weekend. Nathan was up every hour on the hour Saturday night and last night J threw up 4 times. I tried rocking him in the glider, walking with him, laying him down in his crib and rubbing his back but he was pretty inconsolable. After changing his clothes and sheets twice I brought him to bed with me thinking that might help calm him down but he tossed and turned. Needless to say I was feeling pretty depleted when he did finally settle down and I was able to get in bed. But of course Nathan woke up as soon as I laid down.

J hasn't thrown up out of the blue in quite some time but he wasn't warm to touch and didn't have a fever so of course I feared that his reflux was rearing its ugly head; just as I thought we were finally turning a corner. He threw up 3 times this morning but was able to keep down the Pedialyte Carlene gave him just before his nap. He also kept down his milk after his nap and was back to his usual happy self and snacked away on Goldfish. He had no problems eating his soup for dinner and even wanted the sweet potatoes I was feeding Nathan. So now I'm pretty positive that it was something he ate yesterday that didn't agree with him and just needed to work it's way out of his system. Here's hoping tonight's a lot better than last night.

Medical Updates

Yesterday was a busy day for Justin as he had an eye appointment in the morning and then a GI appointment in the afternoon.

J's eye doctor was very happy with his progress and said that the improvement since his last appointment 6 months ago was much better. He mentioned that he may be developing a slight case of near sightedness but there's no need for glasses at this point. So he'll see him again in 6 months to continue to follow his progress.

J's GI doctor was also happy with his progress. He's gained a few lbs since his last appointment (YAY) but Carl didn't ask what his weight was (BOO). Since he's making progress the doctor wants him to continue with the Prevacid 2x daily. But Carl didn't mention to her that we started weaning him down to once a day after his last appointment since he'd been doing so well with no vomiting episodes and no gagging. Things had been going pretty well up until the last few weeks when he started having daily vomiting incidents. BUT, I really think it was a combination of him not feeling too well and the weather. It's been so hot and he gets himself so worked up and unfortunately he isn't doing too well with his juice/water intake.

So overall it was a good day with great news. He has an appointment next Friday with Dr. Hirsch so I'll make sure Carl gets his weight then.

The good, the bad & the ugly

The Good
J finally broke 20 lbs; he weighed in at 20lbs, 2 ozs at his GI appointment last week. The Dr. was very happy with his progress and told us to keep doing what we're doing. If things continue to progress well we can start weaning him from the Prevacid after his next appointment in 3 months.

The Bad
I thought all of my test results came back normal after my seizures. But as it turns out there was a small abnormality in my MRI so the neurologist is ordering another one. My systolic blood pressure was slightly elevated, but honestly, I think I may have white coat syndrome because it's always fine at home.

The Ugly
I still can't drive; 4 more months, ugh!!!

Dr's, we don't need no stinking Dr's

If only that were true. Justin's GI Dr. called today to discuss his blood work and ultrasound results. She's concerned with the abnormal IGA levels, as well as the small size of his kidneys, so she wants Justin to see Dr's in the immunology and nephrology clinics.

Since Dr. Hirsch went over the ultrasound results with me yesterday I wasn't caught off guard when GI referred us to nephrology. Dr. Hirsch plans to discuss J's results with the kidney specialist in her building when he's back in the office next week. She also wants to speak with someone in the immunology clinic to discuss his history and make sure whether or not they really need to see J. I definitely appreciate the second opinions, all this is a lot to take in right now.

Failure to Thrive

That's the official diagnosis by GI. Hearing that really hurt; failure to thrive has such a negative connotation to it and it makes me feel as if I've somehow failed Justin. Oddly enough I find out this information, not from GI, but from the occupational therapist who just called to schedule sessions for Justin.

Justin was being seen by an occupational therapist at Children's Hospital, but our insurance only covers 20 visits so J's last session was last September. I wasn't concerned because he started receiving occupational therapy through Early Intervention around the same time. And although their focus is not on feeding, the OT has been very helpful and given me lots of advice/tricks/tips on getting J to eat.

Impromptu Dr's visit

Nathan's had a yellow discharge from his left eye for the past few days so I took him to the Dr. to get it checked out. As soon as Dr. Hirsch saw his eye she immediately knew he had a blocked tear duct so she prescribed antibiotic eye drops and recommended I start massaging the tear duct. Massaging the tear duct applies pressure on the fluid backed up within the ducts and eventually pops open the membrane and clears the ducts.

Mr. Nathan weighed 7lbs 5 ozs, although that was with a shirt on, which the nurse said probably weighed 2 -3 ozs. But even still, Nathan is well on his way to surpassing his big brother.

I think I've said it before, but I really love Justin and Nathan's pediatrician. I mentioned Justin's GI appointment to Dr. Hirsch so she pulled up the results from his blood work and went over them with me. They checked his hemoglobin levels, tested for Celiac disease, food allergies and a number of other things which I can't recall. The most notable results were that J appears to be allergic to eggs and his IGA levels were slightly abnormal. Dr. Hirsch wasn't too concerned with the IGA levels (an indicator of respiratory issues) since J hasn't really had any recent issues with his lungs or pneumonia. I'm sure I'll get a better understanding of these results at the GI follow up appointment.

I expressed my concerns about the other procedures GI prescribed and Dr. Hirsch said that if they had suggested these months ago she would've questioned them. But at this point they want to ensure there aren't any huge underlying issues affecting his lack of weight gain. She said I can call after he has his ultrasound and she'll go over the results with me.

GI Appointment

As expected the GI doctor was not happy with Justin's lack of weight gain so he has to undergo a series of procedures which I don't 100% understand the reasons why since Carl took J to this appointment. But J had to have blood drawn, which I guess is pretty standard, he's scheduled for an abdominal ultrasound on March 9th, and he has to have an EGD (Esophagogastroduodenoscopy).

I'm not sure what they're looking for in the ultrasound but the Dr. is concerned about the shape of J's stomach. Now I've never noticed anything unusual about his stomach and Dr. Hirsch has never mentioned anything either, but an ultrasound is pretty painless so I'm not too worried about it. But I got emotional when reading the pamphlet they provided on the EGD.

• An EGD allows us to find the cause of problems such as belly pain, throwing up, bleeding, slow weight gain, or trouble swallowing. EGD's are done in the operating room. Your child will sleep through the procedure. A small rubber tube will be placed in your child's mouth. The tube will then be passed down the throat through the stomach, and into the small bowel. Small pinches of tissue will be taken during the test. You should plan on being at the hospital for 4 - 5 hours total.

Just hearing that he'll have to be put under for this procedure sent me back to our NICU days. Obviously I want what's best for J but part of me wonders if all these procedures are really necessary. I know he hasn't experienced his catch up growth, but he is growing, just slowly. So at what point do they just attribute his small size to genetics. And I know things could be a lot worse, but I just wish things were more normal for him. At any rate, I am going to ask Dr. Hirsch about these procedures at his next appointment and get her take on them.

GI appointment

Weight: 18 lbs, 3 ozs
Length: 28 3/4 inches

Good news is Justin IS growing. His body proportions fall in the average range, meaning he's not malnourished, just small for his age. Bad news is his growth has slowed down and we've yet to see his "catch up" growth.

For the most part Justin's reflux seems to be under control as he only tends to throw up after working himself up into a fit or gagging on newly introduced table food. So at today's GI clinic they made some minor adjustments to his medications. He'll continue with the Prevacid 15mg Solutabs once a day, but they upped his Lactulose from 2.5 ml to 5 ml, which should help him become more regular. I asked about discontinuing the Prevacid but they want to keep him on it until his weight gain picks up some.

For now we'll continue with what we're doing feeding wise (3-4 bottles of Pediasure + 3 meals of solids). But if his weight gain hasn't picked up by our next appointment we'll work with the dietitian on ways to increase his caloric intake.

GI Clinic

Justin had a follow up appointment with GI today which in my opinion was really a waste of time. We met with the nurse practitioner who seemed like she knew nothing about Justin's history and didn't provide any new information. I already knew the results from the UGI series but I had to ask about his blood results from the last appointment. Since I hadn't heard anything I assumed that there was nothing unusual and she was able to confirm that his labs were normal.

He weighs 15.2 lbs and is 24 1/4 inches long. On paper he seems to be shrinking, lol, but I realized it's because everyone measures the length differently. And initially I was concerned about the weight, but considering he had surgery a few weeks ago and wasn't eating well the weight loss seems reasonable. Going forward they'd like to see him gain 1 lb per month so that's what we're aiming for.

UGI

We got good & bad news from the UGI series Justin had on Friday. Justin was officially diagnosed with reflux but the good news is that there are no serious issues with his stomach, intestines, or a hiatal hernia. Bad news is that we'll have to wait for him to outgrow this reflux.

I told Carl that after this procedure I am on strike from taking Justin to any more invasive procedures and/or tests. The first few x-rays they took weren't that bad but the second part of the test where they did the barium swallow study was tough on me. They strapped Justin into this contraption (I have no idea what it's called but it looked like a chicken rotisserie) with his hands above his head and of course he didn't like it one bit. He cried the entire time, which was about 15 minutes, even though I was holding his hands and talking to him. It took a while because of course, Justin wouldn't drink the barium. They kept having to rotate him to see if the little barium he did drink would work it's way through his system.

GI Appointment

Justin had his first appointment with GI, Dr. Macha, last Friday. Even though Dr. Hirsch consulted with Children's GI before prescribing any reflux medication Dr. Macha would like to discontinue the Prevacid solutabs. She feels that the dosage is too high for his weight, so she'd like to try Justin on Axid. If it doesn't work we'll switch back to the Prevacid since it is helping.

Dr. Macha also feels that we should continue giving Justin Neosure and not switch to Pediasure. But I forgot to ask how long she feels we should continue with Neosure.

Since Justin never had any formal testing in the NICU he was scheduled for a UGI this Friday to see if there is anything serious going on. She also ordered a series of blood tests. If you thought it was tough seeing your child get shots, let me tell you, watching them get their blood drawn is 10 times worse. I felt completely helpless, especially since they had to stick him twice. First he started crying, followed by shaking, lip quivering, and then he started yelling dadada, almost as if he was telling on me. It took a good 10 minutes just to calm him down, but once I did he kept staring at his hand trying to figure out what was on it.

2 steps forward, 1 step back - continued

Justin has finally started drinking 5 ozs per feeding and has been for about a month. So on a good day he's taking in about 25 ozs daily. He still has his moments, so more often it's closer to 20 ozs, which is still pretty good for him. But with this increase in volume came an increase in the amount he's throwing up, which is now 3-4 times a day. Before he was only throwing up periodically and right after a feeding, he never seemed affected by it and would be smiling right after. Now he's throwing up out of the blue, hours after a feeding and it appears to be painful. It's so hard seeing him arching his back, crying uncontrollably and flailing his arms.

Dr. Hirsch upped his Prevacid dosage a few weeks ago, but things are getting bad so today I asked her for a referral to GI. Unfortunately the first available appointment isn't until June 5th, but I will be calling periodically to see if there are any cancellations so we can get in sooner. Dr. Hirsch is going to speak with them on Monday to discuss starting a new medication, Reglan, but I'm a little hesitant to start something new without them seeing him and running some tests.

Wardrobe changes

We've had a lot of them this past week. Earlier this week we were sitting in the glider in the nursery and Justin threw up all over me. Not once, but 4 times. It was so much that it totally soaked my clothes, underwear and the glider. Thursday he threw up 5 times but it came out of no where. Usually I can tell when he's getting ready to throw up but not Thursday night. I was sitting in the bed, Justin was in my lap and I was on the computer and all of a sudden he throws up. Luckily it missed the laptop, but not the sheets that I HAD just changed. I yell downstairs to Carl that Justin's throwing up and its projectile and he starts laughing and goes into the basement to put some sheets in the washer since we had no more clean sheets. Last night Justin threw up 4 times. Fortunately this time I knew it was coming so we avoided having to change the sheets again.

But needless to say I don't think the Prevacid is working. Justin's throwing up so much and his desire to eat is still pretty much hit or miss. Dr. Hirsch mentioned that Justin may have an oral aversion and that could be a reason why he doesn't seem to want to eat. We discussed this concern with Early On yesterday so that should be another area they focus on when Justin starts therapy. But on a whim I decided to introduce a sippy cup the other day, just to see how he took to it and it went pretty well. It's a lot more messy, but he actually does much better taking his formula from the sippy cup than the bottle.