Tuesday, September 24, 2013

Pulmonary Hypertension Clinic

Yesterday morning I took Ryan to his Pulmonary Hypertension clinic appointment.  We first had to have an echo done in the cardiology office across the street, then drive over to CHOC and check in for the PPHN clinic.  It was also our first day without our awesome home nurse (who is moving to Washington and will be dearly missed), so needless to say it was a crazy morning!  We were a few minutes late to the echo by the time I navigated rush our traffic and the parking structure.  Once that was done, Ryan and I booked it over to the clinic structure, and of course even the handicapped spots were full.  So, by the time we parked over there and made our way in, we checked in about 25 minutes late.  Not the best start.

As we waited in the large and crowded waiting area, the sound of children coughing haphazardly into the air made me cringe.  I carefully placed a blanket over Ryan's car seat so to hopefully shield him from the germs.  Just more evidence that the flu season is upon us, and preemie lockdown is in full effect in our house.

When we were called back, the nurse had us waiting in a crowded hallway for one of the weighing station rooms to open up.  He had just been weighed and measured in the cardiology office not even an hour before that, so I asked if we could just use those stats and bypass the crowd of germs (yes, this is how my mind's eye see people now.  Just germ carriers.  Especially kids.  And even more especially kids who are coughing like crazy in a pulmonary office.  I mean, really).  She consented and led us to our room where she took his blood pressure and sats (he was satting 97-98 on .5 liters).

Then, we waited.  And waited.  And finally the cardiologist came in.  At this clinic, we typically get to see the pulmonologist and cardiologist at the same time, which is nice because I feel like we get at least 2 of his specialist on the same page.  Funnily enough, it seems as though most times we meet like that, they blame the other specialty departments for his lack of real improvement.  For example, last time it was, "I'm so surprised he still needs the oxygen, it must be his reflux.  We'll have to talk to GI about this and change up the meds.  Oh, and let's start adding pediasure to get him to gain weight."

This time, the cardiologist came in solo, but we were happy to see her (well, I was because Ryan was fast asleep on my lap by that point) because it was one of the doctors that knows Ryan well.  She went over the results from the echo that morning, and GREAT news, the pressures in his heart are unreadable again!  So, last time they were high enough to read at 30, which was a mild amount of pressure, and now it's so mild that it's not readable.  This happened last year right around this time, and then he got sick with RSV and he had a bad sedation and we went back to square one with the PPHN. So, we are keeping him on the meds through the flu season even though his PPHN seems to be much better, just to give him a little extra protection in case he gets sick again.  We will also get the synagis shot for RSV as soon as it's available, which should be early Nov.

Then she left and we waited some more for the pulmonologist.  Finally, I looked at my phone and realized we had been at appointments for 2.5 hours.  I told myself if he wasn't seen by 10:30, we were leaving.  I know that sounds all rebellious, but honestly, I wasn't trying to be a rebel...I just couldn't take it anymore.  The entire time we were in there I could still hear the sick kids coughing all around us and I didn't want him to be there anymore.  I peeked out the door to let a nurse know we had to leave, and there was no one in the hallway, so then I started to think maybe we had been forgotten!  So, we walked out.  I stopped out front at the checkin desk to let them know I was leaving and I told them I'd make a new appointment when I got home, which I did. I made sure to make it for a date when the synagis shot would be ready for him so we wouldn't have to come back twice, and I made it for the Newport Beach satellite office because it's much smaller and typically less crowded, and it seems like there's less chance of him contracting an illness in that environment.  Call me paranoid, I don't really care :)

Then today at lunch today the nurse who would've checked us out yesterday called me to let me know she had scheduled Ryan for a new PPHN appointment on December 23rd.  I told her, and these were my exact words, "You can set the appointment, but I can't guarantee I'll bring him in.  I was already hearing so many sick kids coughing over there yesterday, and I'll be damned if I'm going to bring him into an appointment just to have him catch something at the hospital!"  She said she understood, lol.  So most likely I'll just keep scheduling the appointments in NB for one month apart where we can meet with the pulmonologist and get his synagis shot within the correct 30 day time frame, and avoid the big hospital altogether.

The only problem is going to be his therapy sessions.  After December 31st, our insurance will cover 20 sessions again, and we have to use those up before the regional center can cover the in home therapy that we are receiving right now.  Which means...right smack dab in the middle of flu season we'll have to bring him back to CHOC 4 times a week for 5 weeks to meet with therapists who haven't seen him in a year before we can go back to having the therapists who know him and his goals so well work with him in our home.  Just one more of those frustrating hoops we have to jump through unless I can figure out a way around it.

We have a new home nurse starting tomorrow, but she can only work 3 days a week, so the nursing company is going to continue the search for someone full time to replace the nurse who is leaving us, and who has been with us since April.  It really is hard to lose a good nurse because she's like a member of the family, spending every day at home with us caring for our son.  Tomorrow we have our EDAC appointment, which they do every 6-8 months or so to check his development after release from the NICU.  Should be interesting to see how much he has grown and developed since his last appointment in January!

Please pray that he continues to grow and thrive as well as he has these last few months.  Every day that goes by as we head into flu season, I say a thankful prayer that he stays healthy and avoids getting sick.  He's been gaining weight well (he weighs 18 pounds 13 oz now thanks to the blenderized diet!) and that will help, but we'd love to avoid any and all illness if possible.  Thank you!!

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