A scare and a revelation - LONG update

Poor Cooper has had a really rough day and night. He is still suffering from frequent bouts of diarrhea (I mean, at least a little bit nearly every hour). The probiotics seem to be improving the quality of the poop and he seems to be getting cleaned out, for lack of a better/appropriate description. Unfortunately, the constant pooping and clean up process has left him with a small but not so nice diaper rash that I know is hurting him because if I hold him a certain way he screams but if I shift the position of my hand under his bottom he calms down after whimpering a bit. Seriously, how unfair to this poor child who has just been through the wringer! So, to aid in the healing of the rash I'm applying very generous amounts of the aquaphor ointment which should clear it up really quickly.

By the way, we've had to elevate one end of his diaper changing pad so that he is not laying flat during diaper changes just in case he throws up or refluxes because being flat on his back increases the risk of another aspiration (which could lead to recurrent pneumonia, choking, etc.).

Fast forward to about 8:45 pm, Cooper is on the changing table while I delicately treat his little bottom and put on a fresh diaper. In spite of the pain down there, he is always so happy to have a dirty diaper removed and he engages in lots of smiling, laughing and "talking" during these diaper changes. So he's "talking" away and suddenly he stops, his eyes get wide and his mouth opens but no sound is coming out and he looks panicked and he starts to choke! I quickly flipped him onto his side and start firmly patting his back which scares him and he gasped and started to scream so I picked him up and put him over my shoulder and resumed the firm patting on his back and out comes a teaspoon sized amount of globular formula (yes, GLOBULAR!)! Once it was out he immediately calmed down, threw his arms around my neck and started "talking" again. I sat down with him in my arms and sobbed for about 30 minutes. Cooper fell asleep.

I put him in the swing and I sat and looked over my "Cooper log" (you know, the one that Dr.E told me to stop doing grrrr) and I realized something. On September 29th Dr.E recommended that we switch him onto a formula with a thickening agent in it - the idea was that thickened formula would reduce the # of times he refluxes and by getting that under control we'd be ready to begin tapering him off of the Prevacid since he'd have fewer episodes that he'd need to cope with. It took about 4 days to switch him over (we did part old, part new for a few days to ease into the change) and then it was about a week later that Cooper's cough started accelerating. This cough is what led us to have him checked out and discovered the pneumonia from aspirating fluids/formula. So, the aspiration occurred after Cooper was completely transitioned onto the new formula that thickens once it hits the stomach. Then I noticed that since coming home from the hospital, he has vomited once every night and each time it was chunky and he sort of worked at getting it out - each time he cried and threw his head back like he was struggling and then out it came. I would have NEVER remembered any of this if I wasn't jotting notes down whenever something happened.

When Bob called tonight to check in on us I told him what happened and explained my hypothesis and he immediately agreed that we need to get him off this formula immediately. We decided to stop using the Enfamil Lipil AR (which has a thickening agent in it) and start using the Enfamil Lipil which we have a stockpile of since that was the first formula Cooper was on. We stopped using it when Cooper was 4 weeks old because he started vomiting/spitting up a lot - the first symptom of his reflux - but at the time we suspected an intolerance for lactose so we switched him to a lactose free formula and later to a hypoallergenic formula for babies with milk protein allergies (which we now know he does not have). After I hung up the phone with Bob, I pulled all the prepared bottles with the AR formula out of the fridge and poured them out so I wouldn't forget and accidentally use it in my zombie-like sleep deprived state. Instead, I'll be using the 3-oz individual "nursette" jars of the Enfamil Lipil since we have 3 cases of that on hand (Bob had ordered a big inventory of it from the manufacturer to make my life easier when we came home from the hospital since we had to supplement feed with formula due to my difficulties getting enough breastmilk produced and Cooper's preemie status and size. But I digress...

Anyway, you might recall that I spoke with Dr.E (GI specialist) on Monday (and before speaking with him I spoke with his secretary that warned he was upset that he wasn't notified while Cooper was in the hospital) and that he said he couldn't see Cooper until next week but couldn't give us an appointment day/time yet and we'd have to wait for a cancellation. Well, I was so exhausted that it didn't occur to me right then how absurd that was - I realized yesterday we still had not heard from his office with an appointment day and time. Babies that aspirate usually do it repeatedly and he should know that yet he's not making it a priority to get him in for tests!? I mentioned this to Dr.Mike (one of the pediatricians) yesterday when I was asking him some questions about Cooper's treatments and he couldn't believe that Dr.E was making us wait because he wanted to see Cooper when he could very easily put through an order for some very common tests for when this happens (such as a barium swallow study to determine when and how often Cooper refluxes and which thickness of fluid affects him the most).

Here I have an almost 4 month old baby that has aspiration pneumonia - meaning he is ingesting formula into his lungs due to his reflux and this guy, Dr.E, is supposed to be his specialist for the reflux condition and he's pushing us off by over a week! Thankfully Dr.Mike helped me to see how crazy that was and he recommended two different GI specialists to call and try to get in to see one asap. So today I got an appointment for next Wednesday with Dr.Beverly Hills (she's a Dr.E too so I have to use a new name and that's where her office is so that's her new name :)).

I ended up talking to Dr.Mary Ellen today to ask her if I should still have Cooper get the 4 month shots on Monday (they often opt to delay the shots if the baby is sick) - she's the pediatrician that talked us through that crazy fever and ER run a month ago and she's the one that was smart enough to order the chest x-ray this time which found the pneumonia. She's awesome - very thorough and super attentive - called us several times while we were at the hospital to explain what the attending physician had relayed to her and to see how we were doing. Anyway, of course she asked how Cooper was doing and what the GI's game plan was for him and I told her about Dr.E and how we're booked to see Dr.Beverly Hills next week. She was so mad at Dr.E and she said that they hear so many complaints about him that they put him at the bottom of the list of GI docs and they warn patients about his jerky attitude (they did sort of warn me about him - said he had a very cranky disposition but knew his stuff). She said that the attending doctor at the hospital specifically told Dr.Mary Ellen that Dr.E was notified. So, either the attending forgot to do it (which I doubt), or Dr.E is bluffing b/c it was a Friday night when all of this went down - maybe he thinks he can claim he wasn't notified as an excuse for why he didn't show up. The reason we chose to go with him initially was he is in our network and is not as long of a drive as the others, plus I saw a recommendation for him on an online infant reflux support board. Dr.Mary Ellen told me that Dr.Beverly Hills is awesome - very friendly, thorough and is a mom with little kids and is pregnant so she can relate to the sheer terror of situations like this (compared to Dr.E who is a crotchety old man with no sense of urgency LOL). We didn't discuss the formula as a possible culprit to Cooper's aspiration as it hadn't occurred to me until tonight, but I'll be calling her in the morning to let her know that's what I think and that I've decided to stop giving him that formula immediately.

If and when Dr.E's office calls us back with an appointment I'm going to decline it and let them know why - I want a doctor that is going to promptly order tests and/or see him quickly to determine a game plan to prevent recurrent aspiration which has dire consequences (repeated incidents can lead to long-term lung damage, choking, apnea, even death) and since Dr.E put us off for over a week I don't feel he is the right physician for my son. Initially I was going to just have Dr.Beverly Hills serve as a 2nd opinion but after tonight I realize that I don't want Dr.E treating Cooper since he hasn't shown adequate concern or urgency, know what I mean? Even Dr.Mary Ellen suggested dropping Dr.E entirely.

If we need a true second opinion to compare what Dr.Beverly Hills recommends, there is another doctor that Dr.Mike and Dr.M really like that we can turn to - he's out of network but we'd be willing to pay for a consult for a 2nd opinion if the recommendations turn out to be invasive.

I hope all of this made sense. I'm so exhausted so I can't tell but I needed to get it all out, "off my chest", so I can breathe a bit easier the rest of this morning as I sort of 'stand guard' over Cooper while that thickened formula is still in his system. I'm so afraid he'll choke again so I'm keeping him right next to me and I'm trying to stay awake because I'm afraid I'll be unconscious if something happens.

My dear sweet friend and neighbor stopped by today and offered to watch Cooper for a couple hours in the next day or so on one of her days off, so that I can take a nap - I am going to take her up on the offer - I'll probably need it more than ever.

Bob gets back home on Saturday night and will be home til Thursday, thankfully, so he can come with us to Cooper's 4 month check-up on Monday, and the new GI specialist on Wednesday. I'm going to need him there to help communicate what's going on b/c I'm certain I'll break down and cry. The waterworks are definitely flowing freely now!