Monday, January 27, 2014

Clinic and an Impromptu NICU Visit.

Last month my update was pure frustration with the way things were run in the clinics.  I'm happy to report that things were MUCH smoother this go round!  We had another pulmonary hypertension clinic this morning, complete with an echo cardiogram and his Synagis shot.  We arrived early to check in, and while Dave and the nurse headed over to the echo in the main building, I went over to the clinics to check him in for his 10am pulmonary hypertension clinic appointment.  I wanted to be sure they knew we were there well in advance, and that we would be getting the synagis shot again.  I also had to confirm that the GI doctor would be seeing him in the same clinic because we had arranged the appointment for the same time so that all of his doctors could be on the same page.

Ryan has been doing great lately.  In fact, Dani and I both caught what appeared to be a strand of the flu virus that is not covered by the flu shot and does not show up on the flu test because she was swabbed while sick and it came back negative.  We basically quarantined ourselves into one room of the house so that Ryan wouldn't get sick, and between Dave, my mom, and our nurses and therapists, he had plenty of fun, love and care.  Luckily, we are all better now and he has been spared!  He was actually doing better than ever that week.  Hardly congested at all, he wasn't throwing up or anything.  Then yesterday morning he woke up congested again.  He started back up with the coughing and gagging which leads to him throwing up.  Anyways, it's a vicious cycle, and it was perfect timing for him to come in and be seen by the specialists.

Now for the good news.  The echo showed that his heart is still looking great!  There isn't a leak in the valve, so the pulmonary pressure is unreadable.  That's exactly what we want.  The cardiologist was especially impressed that even with his current congestion, he still isn't building up pressure in there like he would have last year at this time.  We are keeping him on the same dose of the sildenafil with the plan that he will just grow out of it after flu season. 

The pulmonologist gave us a prescription for some flonaze to help clear his nose out a bit.  This congestion, which just settled in again yesterday, seems to come with the changes in the weather, and it's really hard to say if it's the extra mucous that is gagging him and causing him to throw up more, or if he's refluxing more.  We are also trying out a supplement to his blended diet because he's just not gaining weight as well as we'd like.  Even though we are packing his blends full of high calorie foods, he burns calories breathing and we can't keep up.  He's also more mobile, rolling around like crazy to get where he wants, so he's burning the calories on all ends.  We are hoping to slowly increase the volumes he gets in a day, but not too quickly because we don't want to create more throwing up/reflux/congestion.  What a delicate web we weave, right?

The best part of the day was getting to visit Ryan's former doctors and nurses in the NICU.  I had texted two of his daytime primary nurses on a whim to see if they were working, and they BOTH were!  So after all of his appointments, we went over to the cafeteria to eat lunch (man, did that turkey burger bring back some serious memories!) and then we went up the elevators to the 2nd floor just like we had done for 7 months when Ryan was a resident there.  Just as we were getting ready to push the call button at the small baby unit to see if anyone had a moment to come out and say hi, Dr. Soliman came walking out the doors and did a bit of a double take to see us standing there with Ryan.  Then familiar face after familiar face started walking by and would stop to see how he was doing.  I'm not even kidding, we saw just about everyone...from the head neonatologist, to his main nurse practitioner, to both primary nurses and a bunch of other nurses that new him well, one of his physical therapists, I even saw the lactation consultant I worked so closely with to keep up the pumping the entire time he was in there.  He even got to see one of the doctors who was on the transport team that brought him to their NICU from the hospital where he was born that very first night! 

It really is amazing how you see those people every day for such a long period of time, they almost become like family or coworkers, you just get used to seeing them and talking to them daily. Except they are extra special because they saved your baby's life.  And they saved your life a few times, too.  You leave the NICU and you're so happy to have your baby home, but you miss them.  It's really strange.  We've been lucky enough to keep in touch with a few of them through Facebook and a couple of them were able to come to his first birthday party.  But today, seeing so many of them surrounding Ryan and showing him so much love, it was truly a blessing.  After catching up I was so overjoyed in that moment that I completely forgot to take a picture, and I'm just kicking myself!  Even Dave was like, "Oh yeah...that would have been a really great picture!" when I mentioned it to him on the way home, and he really doesn't usually care about those things, lol.  Well, now we have an excuse to go back for another visit soon, and this time I'll take a picture!

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Monday, December 30, 2013

Keeping My Cool.

I admit it. I've been horrible about updating this blog.  But honestly, this is a true case of "no news is good news."  Ryan has been doing really well, relatively speaking.  It's important to speak relatively here because, well, he still throws up a lot, he has so much congestion he wakes himself up coughing, and developmentally, he's still way behind.  But when you think of where he was on this exact date last year and through the last new year, none of that matters.  Really.  None of it.  He's home with us, he's not being admitted to a hospital with RSV, his immune system is finally kicking in, and he will most likely have his first Cochlear Implant in the next month or so. ::::knocking on the biggest piece of wood ever::::: We definitely can't complain!

So, if life is so great, why do I need to keep my cool?  Well, sit back and relax as I tell you a story that is SO ridiculous, you may not even believe it.  In fact, I hardly believe I actually lived it other than the fact that my head is still throbbing from the exertion of showing so much restraint today. 

Let's begin.  It all started this morning at around 8:45am.  Dave and I were in the car driving Ryan to his 9am pulmonary hypertension clinic appointment.  In his typical "I will never allow you to bring me to an appointment on time" fashion, Ryan threw up all over himself just as we were getting ready to load him into the car, so we had to clean him up and start over.  Don't even feel bad yet, this happens every. single. time.  We really should start planning it into the schedule.  Anyways, now that we are running 15 minutes behind schedule, I call the hospital clinic on the way there to let them know we are late but on our way so they don't cancel our appointment.  After having to "Press 1 to hear this in English" and "Press 2 to make an appointment" at least 13 times, I finally got through to the nice call center man and told him our situation.  He told me our appointment would probably be cancelled if we were late, but he could make a note for us, but then he stopped after he looked up Ryan's name and said, "Oh wait, your appointment was already cancelled on Dec. 3rd."  Ummmm, what??  I won't even get into that part of the crazy.  There's not enough time.

I tell him to transfer me to someone who can get us seen by a doctor today, and he does.  She tells me (after I had to press 1 and then 2, of course) that our appointment was indeed cancelled for some reason, but there is an opening at 10:15 due to another cancellation.  So we hang out around the hospital and wait for the 10:15 appointment.  Finally get seen around 11am by the pulmonary and cardiology specialists.  Things were looking up.  His doctors are great, I have no complaints about them.  They spent a nice chunk of time reviewing our current concerns with Ryan's health and talking with us about everything coming up.  That's when we mentioned the Synagis shot. 

I should explain a little about Synagis.  This is a very expensive shot that is given to kids who are at high risk for contracting RSV.  So preemies, babies with heart/lung conditions or immune disorders, etc. typically get approved for it. It's not a live virus like the flu shot, it's made up of antibodies that don't necessarily make you immune to RSV, but they help fight it so that if you do catch it, hopefully it won't be as severe.  Since it's not a live virus that would build up in your system over time, this one has to be given in 5 different doses that have to be spread out 25-30 days apart.  After 30 days, the dose will wear off and not provide protection.  This is our second year getting the Synagis shot, and last year Ryan did end up hospitalized with RSV the day after Christmas even though he had already had 2 doses.  The positive side to that is that he didn't end up intubated on the ventilator, which very easily could've been the case, and that is likely due to the protection offered by the Synagis shot. 

Back to the appointment.  He had his 2nd Synagis shot on December 2nd and was scheduled for the next one on January 6th.  If you do the math on that, it's 35 days, which means he would have a window of 5 days where he would not be protected from RSV.  They warned us about that on the 2nd because they only do the clinics in Newport Beach on the first Monday of the month, and January happens to have a late Monday.  They said if we were worried about it, we could always go up to Orange to have it done there.  So, we figured, since we were there today, and we were well within the "25-30 days since the previous shot" window, we would get it done today rather than go those 5 days without coverage.  We asked the doctors about it and both agreed that it would be a smart idea to get it done today.  In fact, they went on to explain that the 3rd dose provides the most benefit and if you let it wear off and wait it could make it less effective.  So, they put the order in and said a nurse would come by when we were finished to give it.

After the doctors finished, a nurse did come by.  She said she would be giving the Synagis shot.  Yup, we know.  She left to go get it and came back with some interesting news.  "Actually, it doesn't look like you can get it today because your insurance hasn't approved it."  I'm sorry?  Actually, our insurance HAS approved it.  Five doses through March, two of which we have already received.  Why would they suddenly not have that approval on file?  Then it was, "Oh, actually, it's because it hasn't been long enough since your last dose."  Again I say, I'm sorry??  Our last dose was on December 2nd.  Today is December 30th.  That's 28 days, right?  The window is 25-30.  How are we not in the window?  So she left to talk to the Synagis coordinator again, and this time she came back with this gem.  "OK, you can't get the shot today because it's still December and your insurance says that you can't get the shot twice in the same calendar month.  So since you had one on December 2nd, you have to wait until January to have it again."  I can't even tell you the amount of red I saw.  But, I will say, she was goooood.  Because I believed her for a hot minute.  But, insurance was going to feel my wrath and I'll be darned if we weren't going to get them to make an exception.  I mean, come on.  Would you rather pay for the shot a few days earlier or have my kid end up in the hospital with RSV which I ASSURE you will cost your company quite a bit more.

So we get the insurance company on the phone, they transfer us to the specialty department and we get placed on hold.  I swear, hold music is my own personal torture.  Now you know my weakness, please don't use it against me.  Then, the music pauses and we hear, "Our operators are busy assisting other callers.  If you'd like to leave a message, please press one. Otherwise, please hang on the line for the next available operator."  I have never been more thrilled to NOT have to press 1 after the call earlier.  But then, wouldn't you no fault of my own or indication by my fingers, the music stopped again and sent me to a voice mailbox!  The red I was seeing was turning maroon at this point.  I left the most polite message I could muster, explaining that I did not, in fact, wish to leave a message but their system gave me no other choice, but that we were actually in the hospital that very moment and needed someone to call us right back to assist us." 

We decided to make the best of that time and walk over to the main hospital where we had to visit the Heart Institute so that Ryan could get his echo and EKG done.  This part is actually quite funny.  We get over there and check in and they say, "OK, can you please wait in the lobby and someone will come get you right away."  We waited 30 minutes so that someone could come out and call our name, have us sign TWO papers that we had already signed in the building we had just come from, which, mind you, is directly connected to this building by a parking garage.  I have never seen a woman blow through that paperwork (all TWO pages) as quickly as she did, and I can only assume it had something to do with my tightly pursed lips and extremely annoyed tone as I responded to, "Has your address or insurance information changed?"

"Do you mean from the last time I checked in about two hours ago?  Nope."

So we entered the hospital and made our way to the Heart Institute where we proceeded to wait.  For the echo, for the EKG, and for the insurance people to call us back.  In the meantime...Ryan is running low on his portable oxygen tanks and we put his last cloth diaper on him, which he promptly pooped in on our way back to the echo.  Obviously when we packed his diaper bag in the morning we never could've imagined we'd still be there well past lunch time.  Thank God we decided to put his blended food on ice in his little pump backpack so he could still get his gtube feeds.

At a bit after 1pm, we walked out of the building after finishing up at the Heart Institute.  Our phones had not had reception in the hospital, so we tried calling insurance again one last time before going home, defeated.  This time we got through to the specialty department and I explained our situation.  She told me there is absolutely nothing in their approval that says anything about not having two doses in the same month.  All it says is that he is approved for 5 shots between November 1st and March 31st and that they should be spaced around 4 weeks apart (same as the recommended 25-30 days).  I had her fax that over to the clinic and I marched back in to the front desk and told them I needed to speak to the "Synagis Coordinator".  The receptionist, bless her heart, finally got this person on the phone and then proceeded to give me the run around about why they couldn't give him the shot today.  All the same reasons as before...and she threw in a few fun ones like, "It's only been 18 days since your last dose." (Fuzzy math much?) and "If you do this one now you won't get a dose in March!" Actually, that was quite funny, too.  I had to explain to at least 3 different people that if we get this shot now, at the END of December, that will bump all of our future shots to the end of the month instead of the beginning.  So we'll get one at the end of January and the end of February...which will last 30 days...which is WELL into MARCH!!  Omg, I get angry all over again just thinking about it.  And wouldn't you know, God was kind enough to make February a short month.  BONUS COVERAGE!!  I am making this sound much calmer than I actually was, but basically, to summarize, what I finally said was, "We are not leaving here today without my son getting that shot. Do what you need to do or tell me who else I need to talk to to make this happen sooner rather than later because he's on oxygen and we are running low." 

While the receptionist was running around behind closed doors trying to quell the beast that had arisen inside me, I went outside and searched for the phone number to the hospital's customer service line.  The very sweet lady who answered could immediately tell I was upset, so she actually walked over to the clinic and listened to all that you've read here, and then, like a medical Mary Poppins, she walked into that clinic and made sh*t happen.  At this point, it was 2:45.  We had been out of the house with Ryan, hanging around probably one of the top 5 germiest places on the planet, for 6 HOURS.  I was livid.  It honest to God felt like they actually WANTED him to get sick. "Here, please wait in this huge waiting room full of REALLY sick kids while we continue to feed you ridiculous nonsense about why your child can't have the shot that he is ENTITLED TO by your insurance simply because we are morons."  (OK.  I'm getting mean. Pretend I didn't say all of that last part.  But I'm not deleting it.) 

So after the customer service rep went in (this was after the receptionist had told us they were working on it and it should just be another 15-20 more minutes), she came out and told us that they were ordering the Synagis shot from the pharmacy right then, and we could go back with her to have it administered.  Two very nice nurses injected the shot and we were out of there in 5 minutes.  I mean, really.  REALLY?!?!?!?! 

I had to put this out in words because I am the type of person who likes to tell people things.  If I think it will help just ONE person to NOT have to deal with this kind of crazy, then it's completely worth it.  I can see the stats on this blog, and I know people are reading even though I'm not posting much.  Probably because a lot of the things we talk about with Ryan are highly searchable.  I know, because I was there.  When he was in the NICU, I spent a ton of time googling things related to prematurity.  I especially loved looking at blogs of former 25 weekers who were a little bit older, just to see what the future had in store.  So, if you are reading this from my shoes almost 2 years ago, please know that some parts of this journey do get easier, but you will never have to stop being an advocate for your child.  And don't ever let anyone make you feel like you don't know better simply because of their job title.  YOU are the parent, and YOU know your child better than anyone.
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Sunday, November 24, 2013

Wow, a whole month!

It appears I went over a whole month without updating about Ryan!  I have no excuse other than it's been so completely busy over here.  But, we're on a week long break from school so I'm making time this fine Sunday morning to post an update.  This is my "church time" since we aren't risking bringing the kids to church during flu season.  Just one of the bummer side effects of preemie flu season lockdown, but we know it's temporary and we need to do what's best to keep Ryan from getting sick.

So, here are some updates.  It's always hard to know where to begin!

Lungs/heart:  I already updated about our last pulmonary hypertension clinic in September.  The cardiologist was pleased that his PPHN seems to be on its way out again, but we're keeping him on the meds through flu season as a safety net.  I didn't get to meet with the pulmonologist because I had to leave after waiting a few hours.  Since then, we have been rescheduled for the next PPHN clinic at the end of December.  We've been in to the pulmonologist's office just to get the first RSV shot of FIVE :( but we didn't meet with the doctor.  A nurse practitioner checked him over and he's been doing pretty well as far as sats on his oxygen.  He does still desat to the low 90s/high 80s if his prongs come out in his sleep, so we know he's still not ready to come off the o2 yet, but part of me wonders if he's just so used to it now that his body doesn't send his lungs the signal to start taking deeper breaths when the prongs come out to compensate.  But, we don't really want to mess with anything during flu season because he needs all the extra support he can get, so we'll readdress this in the spring.  He's currently on 3/4 liters of oxygen 24/7 and he's satting great (97-100).

Hearing:  We're still putting the hearing aids in to have him get used to wearing them, but when the batteries die we don't worry about switching them.  They don't help him hear sound, so wearing them is just practice for when he gets the Cochlear Implants placed.  We are still on track for that to happen in January, but we are currently waiting on a call back from the scheduler at USC who needs to set up a pre-surgery assessment appointment.  The director of education from USC called me and basically did a phone interview to see what I knew about the Cochlear Implant, success/fail rates, follow up procedures, etc.  I think she was pretty impressed with my research.  She started by asking his medical history, and I was able to rattle off every test, MRI, CT scan, indication of hearing/non-hearing, etc from birth to present without skipping a beat.  Then when she asked what I knew about CI, I was able to tell her that I had spoken with people from California Deaf Blind Children's Services, the deaf/hard of hearing specialists in our local school district, our regional center, and even a few different parents who have children with the implants (thanks to all of YOU guys for those connections!) and she was definitely pleased.  I also told her that we had decided on our own to take him to a developmental neurologist to see if SHE thought he'd be a good candidate.  We are aware that the implants will only work as well as the brain will be able to receive the sound input and process it in a way that will translate into sound, and the neurologist was very optimistic.  So, I think we've saved ourselves a lot of time by getting those things taken care of and out of the way before scheduling the surgery.  Now we just need to meet with them and get the exact date in January. :)  The only thing we could foresee hindering this would be if he got sick in the meantime, so we are being extra cautious about exposing him to germs, etc. 

GI and Blended Diet:  About 2 weeks ago, Ryan's vomiting started to increase again and we couldn't figure out what we were doing wrong.  We'd tried eliminating certain things like dairy, trying different rates and volumes, etc., to no avail.  Finally, we decided, maybe his super high fat/high calorie recipe was just too much for him to handle.  So we decided to change it up and just think like "normal" parents.  What would we normally feed a 20 month old?  Surely not avocado with tomato paste and honey and molasses and coconut oil and almonds and banana and blah blah blah all mixed together!  So, we would take whatever we were eating (or Dani was eating) and just blend it up with some liquids to thin it out.  Think mac and cheese with some banana and apple juice.  We also started doing more feeds throughout the day at smaller volumes, and it's been working great!  He's only thrown up one time in the last 8-10 days, which is miraculous.  So we are going to stick with this for a while and see how it affects his weight.  So far, he has lost a few ounces, but nothing to concerning.  If he gets under 18lbs we'll have to make some adjustments.  I feel like having his stomach not so full all the time is actually helping with his activity level, which means his burning more calories rolling around and, you know, catch 22.

Eyes:  Ryan is still allowing us to put in his contacts, but he sure does rub his eyes a lot when they are in!  I guess it's good that he's noticing and somewhat protesting, but dang those things are hard to find when they pop out.  And he is getting really good at making them pop out.  So we spend a lot of time on all fours crawling around trying to retrieve them :)  

Development:  This might be a big one.  Ryan is still significantly delayed in his development.  At 20 months/17 months adjusted, he's not sitting up on his own, not crawling, etc.  His therapists do a lot of assessments on him, and a few weeks ago they brought up Autism.  The big indicator is that he doesn't make eye contact with us.  We assumed that it had something to do with being deaf, that he didn't know sound was coming out of our mouths so he had no real reason to look at our faces.  But, we came to find out that the opposite is actually true for deaf kids.  If they can't hear, they have MORE motivation to look at you to see your reaction as they are exploring things.  So if they pick up a toy they aren't sure about, they might turn and look back at mommy to see if she gives a face of approval or denial.  Another indicator is the way he focuses on staring at certain things, like his hands for example.  He'll put his hand right in front of his eyes and just stare.  Again, we thought maybe this was part of his visual impairment, but apparently it's an indicator of Autism.  So, while we have definitely noticed all of these issues, we always attributed them to something else that we thought he would just "grow out of" as we worked on improving his hearing and vision.  Since that is not the case, we will be documenting all of his behaviors and the therapists are going to apply for more therapy hours for him that will focus on social development to address this.  As he does improve, this is the type of label they can remove down the road if necessary, but for now, we're going to look at it as a positive to get him more help and more services.  It also gives us a direction and strategies we can use with him to help this improve when the therapists aren't here with him.  And on the bright side, he is making gains, albeit slowly.  That's all we can hope for!

General:  Just over a month ago the full time nurse we had moved out of state, and then we ended up with two nurses who split the week.  I was a bit nervous about this at first, but both of his new nurses are great and they each have their own style, so it's good for Ryan to have a little variety, I think.  He really is such an easy, mellow little guy aside from all the crazy medical issues, so he's probably a nurses dream patient :)  My mom has also been a huge help with him and Dani as always. 

While Ryan's overall medical issues listed above are pretty stable or improving, we have a small issue we're dealing with right now in that he does not do well with changes in the weather.  Since it's been flip flopping between hot and dry and cold and damp, he's been waking up congested and coughing.  We actually called in this morning to see if there was anything over the counter we could give to help with the mucous, and they actually recommended honey for children his age.  They said that in side by side studies with guaifenesin, honey performed just as well without the risk of side effects.  So, we've been giving him honey orally and it really does seem to help. 

I think that's everything...WHEW!  We are really looking forward to this week at home spending time with these guys and seeing family for Thanksgiving.  This will be the first time we'll have to bring him a pack and play or something to contain him since he can roll around pretty much anywhere now!  We hope you all have a lovely and blessed Thanksgiving as well.  So much for which to be thankful!
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Thursday, October 10, 2013

Spray Pal

I just wanted to give a huge shout out to Daniel Tim Tim for making this awesome video for our Round 2 video entry in the Intuit Small Business Big Game contest.  If you watch, you can catch a few glimpses of our little fighter and see how big he's getting!  We didn't invent the Spray Pal to make money, we created it because we saw a problem and wanted to solve it just to make our own lives easier.  We started to realize that others could benefit from the idea, so we moved forward with the patent process and bringing it to market.  We went slowly and carefully, and then Ryan was born.  The crazy thing is, that was the time when things started to really take of with Spray Pal.  Now we continue to move forward with Spray Pal for various reasons.  1) It makes using cloth diapers easier which is good for our earth.  2) The proceeds allow me to teach part time so I can spend the rest of the time home with my kids and take Ryan to doctor's appointments and therapies. 3) It helps pay for the extra medical expenses you don't really think about...prescriptions, blended diet ingredients, hearing aids, contact lenses, etc, etc, LOL.  The expenses with a special needs kiddo can add up, but we are truly blessed that with Spray Pal we are managing it ok and we would definitely not have it any other way!  Voting ends October 13th and we truly appreciate all of your support.  If you'd like to vote, you can click on the link below and vote daily.  No information input is required, just click the yellow voting box.  Thanks so much!

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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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