Blood work and meds and appointments, oh my!!

Well, it's been a hectic week, but I wanted to take a minute to update everyone on what's been going on.  On Monday we were lucky we had the day off.  We dropped Dani off at preschool and drove with Ryan up to CHOC to pick up some medicine refills.  I waited in the car with Ryan, and Dave went in to discover that one of the meds, the only one we were actually going to run out of that night, was not filled.  Apparently, pulmonology wouldn't sign off on it because it's considered a cardio med (it's for his pulmonary hypertension, or PPHN), and cardio wouldn't sign off on it because he hasn't been to their clinic as an outpatient.  Which is because he doesn't have any other heart issues other than the PPHN, so they scheduled him to come into the PPHN clinic which only meets once a month.  So he's going on November 26th.  In the meantime, he's out of this med.  CHOC pharmacy was finally able to get it approved by a doctor, but then our insurance wouldn't cover it until Friday.  Do not ask me why.  So they gave us the option of paying full price for 3 days worth and then picking up the rest on Friday.  Normally I would just say fine, let's do it, but this isn't a normal med.  It's super expensive.  So I asked for the cardiologist's number because I wanted to be absolutely sure he need to be on this med.  If you remember from previous posts, Ryan's last THREE echos showed such mild PPHN that the pressures were unreadable.  And, he's on such a LOW dose of the med, it just doesn't seem worth it to pay all this money to fill a month's worth of it if they'll probably just tell me he can come off it at the clinic appointment on the 26th.  So, I left a message with the nurse and she assured me he would call back yesterday.  He did not.  By evening yesterday, Ryan had been off the med almost 24 hours, and he was acting a little bit more fussy than usual.  Of course now I'm freaking out that he's having withdrawals or something.  So, I call the on-call cardiologist.  Actually, I lied.  I called the NICU first because that's always where I call when I don't know who to call, and they gave me the number to the on-call cardiologist.  I love those NICU nurses.  Anyways, the cardiologist called me back and it turned out to be the doctor who had read 2 of Ryan's most recent echocardiograms, so she was familiar with his case.  She had been on vacation for a few weeks and came back to find out that he had been discharged!  She didn't seem concerned about him being off the med, and told me things to watch for like blueness in between his eyebrows or around his mouth, as well as low oxygen sats.  He doesn't have any of those symptoms.  She also said she would make sure Dr. Chang called me today to talk about it.  Again, he did not call.  I called at 4pm and the nurse gave me his direct line, so I got a call back pretty quickly after that.  He said he didn't feel comfortable discontinuing the med without seeing a more recent echo first, which is what I figured he'd say.  So now we are scheduled for an echo on Friday afternoon.  Fingers crossed that it shows that the pulmonary hypertension is gone so we can get off that med and Ryan will be one step closer to healthy!

On Tuesday, I was back at CHOC with Ryan for his first OT (Occupational Therapy) feeding evaluation.  A therapist met with us and talked about our concerns and goals, and did an eval on Ryan.  She found out about his weak suck, which we already knew, and she told me that he has a hypersensitive gag reflex (which we sort of suspected).  This is due to the fact that he was intubated for so long, the large tube caused him to have a very high arch in the roof of his mouth which make it harder for him to fill that space with whatever he's trying to suck on, so he can't get a good seal to draw out milk.  She watched him nurse, and while he does do better with that than a bottle, she could hear the sound he made when he would lose the seal on his latch.  The good news is, even with all he's been through, he still has his suck reflex.  When babies are born, they have a reflex that tells them to suck when you put something in their mouth and it typically goes away by around 6 months.  Even though he's almost 8 months old, he's only 4 months adjusted, so he's still got that reflex.  She wants to work with him twice a week to take advantage of that before he grows out of it, and to hopefully strengthen his suck but weaken his gag reflex.  Hopefully it will help prepare him for starting solid foods in a few more months. 

She also referred us to the Blind Children's Center in Tustin.  They have mommy and me classes for babies with visual impairments, but unfortunately it meets on Tuesday mornings.  But that will be something fun we can do over the summer when I'm not working. 

Other than all that, we're just gearing up for the eye surgery next Tuesday and continuing to meet home nurses until we can find someone who is a good match for our family.  We met one today who will hopefully fit the bill.  I'll update more on the home nursing situation when I have a bit more time.  Thank you all for checking in and keeping Ryan in your prayers.