At least according to Kendall. She has decided that 4 hours is quite enough for her thankyouverymuch, and that instead it would be more fun to just scream all nite, throw in random episodes of choking on her own saliva, and in general wreak havoc on our house. So for all of you who see her cherubic smiling little face during daylight hours and tell me “Oh but she looks so good!!!!”, feel free to come on over about 3 am and see how precious it is then!!!
Truly, she is looking better. She is ALMOST back up to her all-time high weight of 10lbs 15 1/2 oz. Her wrists and cheeks are where i see it the most, the little filling out she has been doing this past week or so. She is definitely starting to do a lot more PO (by mouth) feedings, but the tube stays in for nighttime and supplemental feedings and for medicines. She is on 5 prescription meds 2 times every day, and then as much tylenol and simethicone (gas drops) as I can get in her to attempt to keep her comfortable. She is clearly still being bugged by something. Our 2 GI appointments last week (with new doc and then with crazy lady doc again as followup) yielded nothing really new. They both agreed on a new med, both are CON-fricking-VINCED that the neocate formula is threemeeeeeelyon times better than the AA that she is already on (and both agree that it is next to impossible for her to have had the hives reaction to it, it’s hypoallergenic. right, cause you know, MAYBE it was that huge batch of strawberries and peanuts i gave her instead that gave it to her!!! idiots. She is consuming formula and only formula….maybe just MAYBE it was the formula.) Clearly I could go on with sarcastic comments about my true thoughts on their theories, but i’ll spare you.
Crazy lady doc DID have the presence of mind to send us for an immediate X-ray of Kendall’s tummy to “see how much poop is in there” (at that point it had been almost 6 days and only one measly little watery poop that whole time). The X-ray came back as totally clear of fecal matter, but oddly enough, she started pooping the next day and pretty much hasn’t quit since then. So either the X-ray can’t really see poop good, or her body just DECIDED to make a bunch of poop right after the radiation. Who knows with this kid?! But at least it was SOMETHING, the X-ray, and at least she seems better during the day since Poopfest ’09 started. Nighttimes are still another battle, but I’ll get to that in a second.
the other interesting part of our appointment with crazy lady for follow up is that I asked her about some weird labs that I got from Kendall’s last inpatient stay in March. Her blood sugars were crazy low and then crazy high within 24 hours of each other, and i asked if that could possibly explain why she got so pale and sweaty while she was eating, if it was POSSIBLY hypoglycemic related. Doc says in her best “oh you poor imbecilic mother over whom i have ultimate knowledge and degrees” voice — “No no no, you only see that kind of thing happening in kids with heart defects”. To which I incredulously replied, ” SHE DOES!!! She has a PDA which NO ONE has followed up with!” Doc all of a sudden had a very pressing matter needing her IMMEDIATE attention and ran from the room going “oh well I am sure your pediatrician is on top of that. See you in two weeks!” and shut the door behind her. I was BAFFLED.
In a turn of events that would ONLY happen here at our house, Kaylen decided to spike a 103 degree fever that nite, so I had to get her in with our ped, Dr. Natalie that afternoon (Wednesday). When I relayed our conversation to her, she immediately became upset that no one had informed her of the cardiologist’s report and she called to get one sent to her. Within 24 hours of that appointment I had the cardiologist’s office calling me to set up an immediate appointment (they are typically on a 6 month wait, 3 months for the urgent kids). what apparently transpired is that the cardio’s notes for us to follow up with him within a few weeks were NEVER put into Kendall’s chart. In essence, had I not followed the hunch I had about her labs, Kendall would never have been re-referred back to cardio, because NONE of her docs think that her PDA is a significant finding or factor in her inability to gain weight. Go ahead and go google it though, and the listing of symptoms it causes may as well be kendall’s medical chart. and in the area where “complications” are listed – paleness and sweating during eating. Go figure. God bless the American medical model.
So anyways, after the nurse profusely thanked and praised me for being such a proactive mom and calling THEM, we have an appointment set up for Tuesday morning with the cardio, then a follow-up EKG and echocardiogram, then our regular follow up with Dr. Aljadeff. It’s going to be a very long day up at LG for us, but hopefully hopefully hopefully we have some good solid direction and answers possibly. Either the PDA defect has closed up, which means that her hypotonia and Failure to Thrive (FTT) are still unspecified cause, OR – it’s still wide open, and we can start looking at that as a cause of all her issues. Just like Ben and I have been PUSHING a doctor to look at since the day we found out about her defect. Who’da thought?
So that’s where we’re at this weekend. Analyzing every catch of her breath, constantly comparing her coloring to the other girls or other babies. Laying hands on her little chest and feeling it rise and fall in it’s own little herky jerky pattern, and praying that God would hold that heart in His healing hands.
Thank you so much for all your prayers. And for all you do. I need to do a post dedicated to all the amazing things our friends and family have done for us. We would not be walking down this journey with as much strength as we have were it not for you (and the amazing food some of you can cook! 😉 ) I am so blessed and encouraged by all the thoughtful comments and emails you send to me throughout the week.
I promise i will blog more this weekend. I have so much more to say and catch up on. Having TWO sick kiddo’s (well three if you count Karissa’s random bouts of fever and lethargy) has really zapped any small amounts of free time I may have previously fantasized about having.
if you would like to help with “Operation Restore Terra’s Sanity” – we need a babysitter Wednesday mid-morning through late afternoon. It involves taking Karissa to school, picking her up from school, and being home for Kealey getting off the bus. At this point I am even willing to pay money for this craziness. Kendall will be with me still, so its just the two middle munchkins, otherwise referred to as “Oil” and “Water” for reasons which willl become painfully obvious should you choose to accept this mission.
Ok enough iGroveling. I hope you all enjoyed this CRAZY gorgeous weather today and that you have a blessed weekend. Take lots of pictures – share them in an online album! (I need to take my own advice…)