Life Can be So Complex!

(Sorry, this is quite long, but I am journaling all the details to help us remember everything about Mason's heart journey.)



First of all to follow up for my post from last week about Mason being sick.... Friday afternoon (the same day I had posted) I decided to take him back into the pediatrician, because his cough seemed to be getting worse and I did not want to end up in the ER over the weekend. He was acting sicker than when he had the pneumonia. So, our ped. who was pretty concerned w/how his lungs sounded, sent us over to the AF hospital for a chest x-ray and a 'nasal secretions' lab test (which tests for RSV and any other type of viral infection).




In the mean time Friday evening, I had a 'Mommy Meltdown' (I really am not Wonder Woman like so many of you think....the reality is I am stressed and worried most of the time!). I was trying to decide whether or not to postpone Preston's baptism(scheduled for the next morning) for another day, but didn't want to crush Preston's excitement! Maybe because I was crying, but my sweet little 8 year old told me it would be okay and that he wouldn't mind after all if we changed the date of his baptism. I told him I wanted my heart to be in it for him, and w/Mason so sick I would have just been 'quickly throwing together' something that should be a very special day. I am grateful for the tender mercies and understanding of my sweet children. And for Mark as well, for saying "it's up to you."




Soon after all that, I received a phone call about the x-ray. Both of Mason's lungs were junky w/fluid now, but no pneumonia at least. So w/that, the question is...is it his heart failure getting worse causing the fluid, or could it be something viral? The viral tests would take up to 24 hours.....just great! 24 hours of wonder and worry! After that phone call, as I was holding my sick little Mason, we made the final decision to bump Preston's big day to a later date. Thank you to all involved, for understanding my "mommy meltdown"!





Then Saturday night my ped. called a couple of times (Dr. Whiting is amazing and is so kind to us! I even call him at home with concerns quite frequently.) He had been checking with Primary's lab all afternoon on the viral tests and at first everything came back negative so we worried about congestive heart failure!! But an hour later he called and Mason was positive for the 'Rhino-virus'. What's that? The ordinary everyday cold. Yay, at least this wasn't a heart issue, but it shows what a 'little cold' can do to a heart baby. His little body is too compromised right now to fight anything off very well. We just needed the cold to quickly run its course before his ECHO.





On to the ECHO.....
Mason and I showed up at Primary's at 7:30 am. on Thursday morning to check in for his sedated echo. Now remember for sedation his tummy needs to be empty, so by this this time Mason was very hungry. He had not eaten since 3:30 am (that's already a long time for him) so he was getting mad! Then we didn't see anyone from sedation until 8:30 when they placed an IV for his sedating meds. Mason was so upset from the IV poke along with him being hungry all his crying made him begin to cough really bad. (His cough was actually quite a bit better until then.) So this made the sedation nurse unsure about sedating him because the sedation can already drop their sats sometimes, then with his cough and already being on 1 1/2 liters of o2 their was talk about him not having enough reserves to pull his sats back up on his own. Which could lead to 'bagging' him to help him breathe and a stay in the PICU! Yikes! No thanks! But we really needed an echo to see if there had been any improvement in his heart function........





After talking w/ Dr. Saarel, our cardiologist, it was decided to try and get an echo without sedating. Dang! An IV placed for no reason. For those of you who don't know, they sedate kiddos because to get a decent ECHO they need to hold really still and not cry. I was thinking to myself, "are you kidding me? My child who cries at the site of scrubs, hold still for a half hour echo?" Then I had a thought....If they weren't going to sedate him then couldn't I feed him? Fill his tummy, calm him down, and maybe even he'd fall asleep. That was high hopes! But I asked if we could try it anyways. The nurse and the radiologist doing the echo were game. So they left the room, I nursed him (while saying a little prayer to myself...please help Mason to fall asleep so that we can get his echo today) and he fell asleep! They came back in after 10 minutes to check on us and we decided I could hold him just like he was for the echo in hopes that he wouldn't wake up. And it worked! He slept the whole time and woke up right when the radiologist was done. Yay! Good work Mason!



We met w/ Dr. Saarel about an hour later for the results. I am trying to approach this with a 'half full' attitude rather than 'half empty'. Maybe this is just my way of coping or am in a bit of denial. His heart function and leaking valve are not any worse, Yay! But, there was not any improvement either. Basically, there was no change after a month on the new meds. Although, this doesn't mean meeting w/ the transplant team quite yet like I had understood at out last appointment. Thank goodness! I was not ready for that yet.




She upped 1 of his meds (enalipril) and we will up it again in 2 weeks which will max out his dose. Then we will go back in a month for another echo. Then hopefully he will have improved heart function! If no improvement still? Then try 1 last med, but this one is a last result because in some kids it can drop their heart rate too low. So this will entail lots of appointments to monitor side effects. And sometimes they have you meet w/the transplant team while starting this med. I think that this is based on our cardiologist's opinion on how he is doing. Okay....so let's just think, hope, and pray positively that the higher dose of meds will do the trick and we won't have to walk down that other path!




The other concern right now is about Mason's weight gain. He is a good eater....he still nurses a lot and eats all kinds of solids but, his little heart must be working so hard that he is burning everything up. He has not gained in a month and 1/2, but even before that his gain has been very slow. Which ever route we go, whether it's toward the 3rd surgery (the fontan) or transplant he needs to get bigger and stronger. What are our options? Pump up his food w/ lots of calories (well, I am already doing this w/ peanut butter, almond butter, olive oil, eggs, protein powder, ice cream ), give additional feedings by NG (the feeding tube through the nose ) at night and expect him not to pull it out(but he doesn't sleep in one spot all night ! I am all over the house trying to get him to sleep and I know he will not leave it in. In fact I tried a couple weeks ago as suggested by our ped), or have a G Tube put in (a little "button" on his tummy put in during an out patient surgery) so that he can receive extra feeds and not have to do any work to get the calories. What to do? What to do?




Mason fortunately hasn't needed an NG tube since he was 3 months old. That has been a huge blessing and amazing for such a little heart baby! But now to expect him to leave one in at night may just be too much to ask of him. Or, do I really want him to go through another surgery (at least its minor compared to heart surgery) and have a G tube placed? I know a lot of heart babies and kiddos that have them, but didn't expect Mason to need one because he has always eaten so well. It is a decision we will need to face here pretty soon. Especially as Dr. Saarel's words keep ringing through my ears "I am worried about Mason" (about his heart and his weight) I know it is something we can't ignore. Dr Whiting is also concerned so I will be discussing it with him in greater detail as well.




As always, your concern and prayers are greatly appreciated! And thank you also to the anonymous taco soup dinner that arrived at our door last week (It was going to be a cereal night, so thank you thank you) as well as other meals brought in and favors done as to ease my load when life seems so crazy and complex.