Hematology 22q

I don’t know what a 2 hour blood test entails; all I know is I don’t want to drive a couple hours to put my four-year-old through one tomorrow. But alas. Exhaustion thy name is 22q Deletion Syndrome.

Or something.

So yeah, tomorrow we wake up bright and early and hit the road.

To rewind, after way too many ups and downs to even recall on this road to schedule a P flap surgery, our new plastic surgeon insisted we see hematology considering what we described going through during Josie’s palatoplasty as a baby.

Everyone thought it was kind of pointless including me and even the hematologist who kept looking at me somewhat incredulously as she asked me why if Josie has had 4 heart surgeries, and many other surgeries, and just one surgery as a baby that resulted in hemorrhaging, did our current plastic think we needed to see hematology now. I told her how I wanted to kinda hurry things along so we could proceed with a surgery date, and later that afternoon we got a call from the hematologist saying she was going to put through the blood samples she’d ordered, but she was so sure Josie would be normal she was going to go ahead and send out a written clearance and call the surgeon herself to clear her.

So we were all “Yey! How great! Things are working in our favor in a hurried manner for once!”

But then…

*cue tires screeching*

Shortly after that (a few days maybe?) the hematologist personally called back saying she’d talked to the plastic surgeon and told us we had to hold up surgery for a couple months because one of the tests she was sure would be normal wasn’t. She even ran it twice because she was in disbelief. 

Apparently add hematology to our list of specialists because Josie has a platelet function issue.

What exactly? Don’t know–that’s why we’re headed to Shands in the morning! For a two hour blood test no less. Poor baby doll.

Between then and now, I also got a call from the plastic surgeon (and an email from her cardiologist. I feel so important sometimes). She explained how she suspected the possibility of clotting disorder even despite the previous minimal blood tests and that with surgery on the palate (she’d have to cut through a lot of where Josie had been operated on previously) there’s so much more blood sources than in an arm or leg and she could have significant bleeding.

Look I even took notes on the call.

#momproblems

The parts of our convo I found most interesting were when the surgeon said we can’t say that’s really why she had bleeding complications during her palate repair (I still think they nicked something). And she may need a blood transfusion prior to cutting and possibly something like Factor 7 to help her clot (which cardio says is just fine and dandy with them).

It’s a journey.

Wish us godspeed for tomorrow–and good veins!

jeni <3

First IEP

I’m going to write a TV show and it’s going to be like “How I Met Your Mother.” But instead it’s going to be called,”How I Scheduled My Daughter’s Surgery.” I supposedly have clearance from 2 specialties and dental records should be emailed to me any moment now… but…

In other news,

Just got back from an 8am IEP meeting (our first!) waaaay across town. It took me 45 minutes to get there and 50 back with 3 kids in tow, so that was fun. Plus I signed a stack of paperwork without reading it (always good) and every question I had (I had lots) was met with, “We just don’t have resources for that,” or “We’d have to observe her in the school setting before writing that in an IEP.”

So that’s all good. Not.

She qualified in two categories, for “Developmental Delays” and “Speech Impairment” — surprise surprise.

I was fairly surprised that there was a large variance in her speech scores. Her private SLP scored her assessment relatively higher than the school system’s SLP did.

Both were done at 4 years 6 months.

	School	Private
Auditory Comprehension	65 / 2 years, 8 months	73 / 3 years, 3 months
Expressive Communication	57 / 1 year, 11 months	72/ 3 years, 0 months
Total Language Score	58 / 2 years, 4 months	71 / 3 years 1 month

That’s a heck of a deviant. Right?

I’m currently deciding whether I put her in private or public preschool. Private is part time. Public I have the option of receiving speech services and either choosing a half day regular VPK program or the full day developmental delay type program.

I honestly still need to finish reading her IEP and goals.

I honestly don’t know what we want to do.

Too many decisions lately. Too much going on. And I have a ton of choices and phone calls to make. I guess it’s good to have options!    

Jeni

P.S. After much hullabaloo about trying to get Josie scheduled for surgery in June (and definitely not July) I am now just hearing there is only a faint glimmer of hope that she will get scheduled for June. We lost her 20th spot due to having so much trouble getting medical clearance from cardio and hematology. So whatever.

 

 

PLUS: Brian thinks maybe we should get a 2nd (kinda a 3rd) opinion anyway WAAAAY down in Miami. Fun times. I will go insane if we go that route. 

I Have the Most Beautiful Kids

We interrupt the regularly scheduled ranting for a couple pictures from today’s tea party.

Thing 1

Birthday Thing 2

Little Thing 3

Goodness what cuties!!

Livid.

Ooh so p.o.ed. Josie’s discharge summary from nov 09 where Brian was suctioning blood out out of Josie’s face all evening through the night bc it was pouring out of her mouth, nose and ears, when she was covered in blood, hair matted and crusted with blood, we had to get new arm splints bc they were saturated, had to change the sheets, blood was splattered on the floor and chair next to us and it was coming out of her ears–the discharge summary says “transfused” with “minimal blood loss.”

What? She had a pint of black blood in her stomach I personally poured off her feeding tube, the picu nurse said he’d never seen a palate repair like it, she got an art line put in, medically paralyzed her for days in the PICU, talked about putting in a chest tube to drain off blood she swallowed into left lung–minimal blood loss?? My husband looked at me during that surgical recovery and said he wasn’t sure he wanted to have more kids after that experience. Brian who wants a dozen. He never said that after the NICU or after the ohs where her chest was open for days but this palate repair. Minimal bleeding… I have pictures. I am livid. Ugh. Betrayed. Horrible horrible horrible.

Update. I was so P.O.ed I put my quotations on the wrong side of the period. Sorry you have to see that sometimes.

Also I called Brian and told him and he was quite upset as well. I believe he called them liars more than once.

Whatever. In the past right? It’s just very frustrating to know that’s the official word on how that surgery went. But everybody’s gotta watch their own back I suppose. I’m just in disbelief that no one has ever taken a minute to explain to us what happened or why that happened or acknowledged anything. Going to talk to Josie’s current plastics surgeon to see if the notes add up at all. I bet they left out a few other details we recall quite vividly.

This is 24 hrs after surgery following a linen change and bath. This is after she finally started clotting well and all packing was removed. I wish now I had pictures from immediately following the surgery. I feel a little crazy, but Brian and I both had been through a lot with her medically prior to that and both have pretty identical memories of the incident. Minimal bleeding… *sigh*

The Ridiculousness of it all…

Rant. definitely a rant.

Let me preface this with the fact that I’m already frustrated and anxious about the risks of this P Flap, the fact that I’m attempting to coordinate this with a soon to be 3 year old and a teething baby between multiple hospitals and departments in several specialties 4 hours away is just icing (have I mentioned I don’t like icing?) on the insanity cake. We got layers and layers of nuts going on. Plus I’m not having this surgery done in July. Period.

Namely. The surgeon is requesting clearance from cardio and hematology. I expect cardio. No one will touch her without their clearance. But we’ve never SEEN hematology. Plus to be seen they must have referrals. Surgeon in Tampa is not sending referrals but telling me to call. So I’ve been calling. Hematology says they made an unofficial appointment for Friday in Gainesville but the receptionist is going to get her wrists slapped if I don’t have a referral sent saying WHY we’re going. I don’t see WHY we are going at all.

That said, the office several days out from me informing them that everyone wants a request for clearance is still giving us the runaround. WHY? I have no idea why.

Meanwhile we’re all sorts of crazy here. And if we are to keep stupid new patient appointment it’s going to take weeks to even get a report on her blood. Keep in mind she’s had many surgeries to date. Only bled out at one. Two open hearts mind you. Just saying.

The ridiculousness of it all makes me want to eat real cake. That’s what it does. So I’m stressed and want to eat comfort food and that is seriously harming MY health. Vicious vicious circle.

I hate this all. I told Brian to call today and reiterate all the frustrating nonsense because I am a firm believer in the honey-fly saying, but good Lord Almighty in Heaven have mercy on me a poor sinner. I told him I’m ready to call the whole thing off. Brian and i think its a good idea but my mom doesn’t and my SLP thinks it’d be fine to wait. So I feel like I”m treading water while eating said cake, stressing, getting fat, chasing naked children (really) covered in oatmeal around the house, having my teething babe use my boobs as teethers, getting later and later to swimming lessons  while I’m on the phone having crying fits while people tell me to relax because it’s in God’s Hands.

Just saying, could I get some drugs or something with the cake? I’m just ONE woman.

The end.

Jeni

P.S. Shout out to awesome Abby. Hi awesome Abby!