Friday, March 29, 2013

Pulmonary Hypertension Update

On Monday, I brought Ryan to CHOC for the Pulmonary Hypertension clinic.  I like this appointment because we get to meet with the pulmonologist and the cardiologist at the same time.  It's a once a month clinic, and we got lucky this month because both of the doctors working the clinic are ones who know Ryan well.  Dr. Y has been his main pulmonologist since his NICU days, and Dr. Doshi is the cardiologist who has seen him the most, and was the one on duty when he had the abnormal EKG during the Mic-key button procedure while he was sedated.  As soon as they walked in, they were so excited to see Ryan and gushed over how cute and chubby he is. :)

They listened to his lungs and said he was sounding good.  They checked out all his current meds and didn't want to make any changes.  Our echo was originally scheduled for last Friday so we could get the results before this clinic, but their office had to reschedule so Dr. Doshi said she would come see me after his echo this Thursday to see how his PPHN was looking.  The echo looked pretty good, but the pressures are still measurable.  Last time they were in the 40-50 range, and this time they are in the 30 range, so the PPHN is still mild and slowly improving, but not gone.  We are going to keep him on the same dose of the meds and not increase for his weight, and then we'll follow up in June.  If the pressure numbers have improved, we'll keep chugging along until it's gone.  If they go up, we'll increase the meds to adjust for his weight gain.  So, let's keep praying that this PPHN just kindly shows itself out the door and his right heart pressures get back to normal.

While I was at the clinic, I took the opportunity to ask a ton of questions since it was 2 doctors who know him well.  First off, I told them about how he wakes up coughing and congested every morning.  Some mornings are worse than others, but that particular morning had been really bad and he had thrown up twice already.  They felt like we have already maximized his reflux meds, and that it's probably the gunk in his lungs from this lingering flu season and general inflammation coming up and gagging him that's making him throw up.  But, since it has been a lot better and he doesn't throw up most days anymore, we're just going to keep doing what we're doing and hope he just grows out of it.

Speaking of growing out of things, I asked when they thought he might grow out of the oxygen and cannula.  The last pulmonologist I asked said it could be anywhere from 2-5 years.  Dr. Y was more encouraging.  She said when we check him in June, since flu season will be over, we can start talking about trial weaning then.  I'm not personally 100% sure he'll be ready, but at least it feels good to know that she thinks it's a possibility that soon.  I told her how sometimes at night he rubs his face and gets his cannula prongs up over his nose, and even though he doesn't wake up, we get woken up by his pulse ox alarming because he desats to around 89-90 (normal is 95-100, and his alarm beeps if he goes below 92).  Dave and I were talking about it, and wondered if maybe his lungs are just so used to the oxygen that they desat when it stops going in, but if we left the prongs out a while, maybe his lungs would adjust and slowly get his sats back up to normal.  So, I asked her about that, and she said it doesn't work that way.  If he desats without the oxygen, then his lungs definitely need that support still.  But even after hearing about this, she still felt like we could look into weaning in June.  She even said, "I feel pretty confident that by next flu season he's going to be strong and much more ready to handle it." 

They did comment on how even though he got RSV and has had some lingering inflammation that he has handled this flu season extraordinarily well.  They said so many babies like him have ended up hospitalized for longer periods and even ended up back on the ventilators to help them get through it.  Our little fighter just plowed through with some short hospital stays and a little extra support from the high flow nasal cannula, but nothing more than that.  I truly believe this is a testament to his inner strength as well as all of our thoughts and prayers working their power to heal.  He is a daily reminder of the power of prayer and God's ability to heal and give strength.

Other updates: 

PT and Feeding Therapy:  We used up the 20 sessions covered by insurance, so now the Regional Center is arranging for Cornerstone Therapies to send out therapists to our home to work with Ryan 4 hours a week.  They've already started with 1 hour a week so far, and we are so pleased with how great they have been.  We will miss our CHOC therapists, but it's so nice not to have to take him out of the house, especially during flu season.

Vision:  We have not been using the contacts for a few weeks now, and we are noticing a good improvement in his ability to track and reach for objects.  He still doesn't make eye contact or notice our faces very frequently, but he seems more comfortable without the contacts in, and he's definitely seeing things.  We have 2 eye appointments in early April, so we'll be able to find out more about what we should do with the contacts then.

Hearing:  I can't tell you the issues we've had dealing with the hearing.  It's probably 2 whole blog posts on its own, and those of you who see me in real life have probably already heard enough about this.  So I'll try to be brief here.  Sometimes the medical system SUCKS.  That pretty much sums it up. ;)  I'll try to elaborate more for those interested when I get the chance, but here are the basics.  First, we found out that the hearing coverage that we thought was going to be provided by CCS is not going to be provided anymore because we are not financially eligible.  Second, we found out that the CT scan we had done, the one where I had all those crazy issues with scheduling, was never actually cleared by anyone medically even though I was told it WAS, and because of his PPHN he really should NOT have had it done.  Thank God nothing went wrong, but I've since spent a lot of time on the phone with the office manager of that particular office because I would hate for any other kids to get scheduled for sedation and/or procedures that they aren't medically ready for.  Our MRI which was scheduled for April 9th will also be postponed until probably after June when we can get his PPHN checked out again. 

I think that's it for now, but I'd hate to end on a negative note, so I'll tell you some stuff Ryan's been doing.  He's getting better at holding his head steady!  He loves when I hold him on my leg facing me with one of his legs on each side, and he can push off the ground while I support him under his arms and help him bounce.  If I clap his hands together, he will laugh the cutest laugh you've ever heard.  It's almost silent, probably because of his little raspy voice, but he just gets this huge grin and does this wheezy/raspy laugh.  It's adorable.  And he's tasting more and more food.  He loves squash and peas, but isn't a fan of mango.  Weird, right?  Alright, that was a much better way to wrap this up.  Thanks for all the love and prayers!

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