Wednesday, September 25, 2013

EDAC Appointment

I just wanted to quickly update about Ryan's EDAC follow-up today.  Basically, we bring him in to CHOC to get evaluated by a nurse, dietician, two therapists, a social worker, and finally a physician to see how his overall health and development is going after being discharged from the NICU.  He had his first eval like this back in January, so it was kinda cool to have some stats to compare with and see if he's shown any improvement.

The nurse and dietician were really impressed with his relative overall health, weight gain over the last few months (thank you blenderized diet), and regularity (again, thank you blenderized diet).  They asked questions about flu shot and synagis, which we have all scheduled, so that portion was pretty quick.

Then the therapists brought him down to a mat and did various assessments on his gross motor, fine motor, and cognitive development.  This was the coolest part of the appointment because he performed SO much better this time than the first time.  He even babbled up a storm, which is especially impressive since they confirmed what we already know that he doesn't respond to sound even with his hearing aids in.  At his last appointment, his cognitive development was rated  at 4 months, and this time they put him at 7 months!  Last time his gross motor was that of a 1 month old, and this time it was around 4 months!  And fine motor wasn't even on their rating chart last time, but this time it was also 4 months!  So overall, though he is severely delayed, he is working on his own curve and it's moving in the right direction!  I can only imagine how amazing his development will grow once he gets Cochlear Implants (God willing) and can hopefully hear our encouraging words and teachings!

Thanks for all the positive thoughts and prayers you sent his way today, it was really nice to have another appointment with GOOD news this week!

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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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Tuesday, September 17, 2013

Trying to Keep Up

I just got finished rocking Ryan to sleep, and I was feeling nostalgic thinking back to the days when he was still in the NICU and I would update his blog every single night.  While I do feel guilty for not keeping up with the blog as much as I did back then, I know it's for good reason.  Now that all four members of our family are home under one roof, there just isn't enough time in the day!!  I was inspired by a conversation with a friend tonight to update, though.  Even though I don't update frequently, I can still see through the blog stats that we get a lot of hits here each day.  My friend reminded me that people who are in a similar situation want to find hope and information, and most times they turn to the internet.  For moms with preemies with special needs, many of their searches lead them here.  Let's face it, Ryan has a lot of searchable tag words associated with him.  Preemie, pulmonary hypertension, chronic lung disease, hard of hearing/deaf, visually impaired, oxygen, gtube, blenderized diet, the list could go on.  So, as much as I feel like I don't have the time, I need to be better about updating because I know there are people out there who have kids with one or more of the same issues and just want to know how Ryan is doing.

Lungs/Heart:  Nothing new to report here.  He's still on 3/4 liter of oxygen 24/7.  He's still on nebulizer treatments twice a day, aldactazide diuretics to keep fluid out of his lungs, and sildenafil for his pulmonary hypertension.  We have a pulmonary hypertension clinic coming up next week where he will meet with his pulmonologist and cardiologist and have an echo to check the status of his PPHN.  His sats have been a bit better than usual lately, which is excellent timing as we turn that corner into flu season.  We are hoping and praying so hard that we can keep our home as germ free as possible this winter so he doesn't wind up back in the hospital.  This is quite a feat with a 3 year old in preschool and two elementary school teachers surrounded by kids all day.  We haven't had to go on full on lock down quite yet, so we've been getting out of the house as much as possible on the weekends while we still have the freedom to do so.

GI:  He is still throwing up occasionally.  Not quite daily, but probably 4-5 times a week.  It's totally random and we have no idea when it will happen, but he is still on the omeprazole for that and it seems to be helping more than the prevacid was.  The blenderized diet seems to help, least with the weight gain part.  I think the thickness of his blends does help him keep more of it down, so sometimes when he throws up it's just a tiny amount.  The whole thing is so baffling to me.  We all have our theories...maybe we shouldn't give him blend that is made the day before.  Maybe we moved him too soon after his feed.  Maybe he needs to be vented more, maybe less?  Who knows.  It's so random.  My latest theory is that he is just finally learning how to burp, so when he burps or coughs it triggers his gag reflex and he throws up because he just doesn't realize he doesn't actually HAVE to throw up!  Hopefully he will grow out of it soon, which, on the bright side, he is gaining weight.  It's a slow process, but at least the weight curve is moving in the right direction compared to what it was doing when he was just on the formula.

Eyes/hearing:  His vision is still one of his biggest blessings.  He definitely sees things.  He wears his contact lenses every day, and we still with the occasional lens popping out and panic on all fours as we try to recover it without losing our sanity.  His hearing aids are not quite as successful.  We had our follow up appointment last week, and we basically told her we aren't noticing a lick of difference.  He had them set at a really high amplification, and he didn't react to sound any differently than he did before.  Meaning, he doesn't react to sound at all, period.  It's actually a blessing in disguise because if it seemed like he could hear something, it might make the choice more difficult to go ahead with the cochlear implants.  Now there's no question that this is the way he is destined to hear.  So, I need to call House Institute this week and see if they would consider forgoing the rest of the hearing aid trial since it's pretty evident they aren't doing anything so we can get the ball rolling even sooner on the cochlear implants.  We are still working on adding new signs to our vocabulary as often as possible.  Ryan hasn't seemed to pick up any of our signs yet, but he does love to hit his mouth with his fist, which I'm going to go ahead and say is him just signing "mom" in his rudimentary way :)

Development:  Ryan still gets 4 hours of therapy a week.  He is showing some slow improvement, but he is still very developmentally delayed.  He had his latest IFSP meeting in August, and in most areas he scored at the level of a 4 month old.  With him being 18 months actual, 15 months adjusted, you can see how that is a pretty significant delay.  But, we've set new goals for him based on that information, and he definitely seems to get stronger and stronger every day.

General:  Life has been pretty crazy since we started back up to school this month.  My mom still comes to take care of Dani and help the nurse with Ryan while I'm teaching, and the nurse still comes to help with Ryan 5 days a week, 8 hours a day.  We are so, so sad to be losing the amazing nurse we've had with us since April because she is moving out of state.  She is going to be very difficult to replace.  Other than that, we have been busy with school, Spray Pal, Dani's back to school night and many other activities, in addition to trying to keep up with all of Ryan's home exercises for his therapies, etc.  I'm surviving off less sleep than I ever imagined possible (says the girl who's eyes are half closed while typing who normally needs 8 hours of sleep to function properly).  Coffee has definitely become a staple around these parts.  Thank God for all the blessings (like coffee, for example) that make this crazy, but wonderful, life possible!  And thank you all for keeping Ryan and our family in your prayers.  He's come a long way but still has a long way to go, and I know all of our prayers are being answered daily as we watch Ryan grow!

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