The Pulmonologist

 

               We had been trying to schedule an appointment with a pulmonary specialist for 3 months to have Grant looked over.  His labored breathing and rumbling (similar to constant congestion) has caused us concern.  We finally saw the Dr. yesterday.  Fortunately, we only had to drive 30 mins one way.  The only other option would have been to go to Little Rock, AR which is 3 hours away. 

The following applies to Grant mostly:
X-rays showed spotty areas of aspiration, basically Bronchitis (which is simply inflamation of the lungs).  He regularly has junk in his throat from that and he is not swallowing as he should, thus the rattling and rumbling in his throat and lungs (sounds like congestion).  If not treated, scar tissue can develop and possibly affect his breathing for life.  Fortunately, new lung tissue forms/grows until approx age 7.  The Dr. said we'll have to have regular visits to the pulminologist every 6-8 weeks for the next year.  We are also told that both boys should be eating/drinking while sitting upright only - no more propping bottles or laying them down in bouncers for meals.  This makes things a bit more complicated.  We need to take Grant back for another x-ray to double check a very minor concern the Dr. had concerning his stomach.  They said it was hardly worth mentioning, but it seemed a bit bulged, which could have been from him having just ate.  He ate much better than Merrill on the way so he may have just been stuffed.  We'll see.

Merrill checked out fine, however, the Dr. suggested he sit up for meals (includes bottle feedings)  as well and prescribed a medication for acid reflux (Grant will be taking that, too).  We received quite a few prescriptions, tools, and a milk/formula thickener.  The following are some changes for us to apply to daily meal times:

        For every 4 ozs of formula, we must add a packet of instant food thickener gel to create a consistency of tomato sauce.  We have a tablet for acid reflux that we need to crush up and add to 1 oz of formula before the meal once a day for both boys.  I will have to make two 4 oz bottles for Grant at each feeding to make sure he gets proper ratios of thickener.
           Another change to our daily routine involves using two different enhalers every 12 hours for Grant.  One is to reduce the inflamation of the lungs, the other is a steroid to develop the lungs and avoid scarring and negative results there from (don't worry, he won't get muscles or gain weight from the steriod :).  The enhalers come with an air chamber.  At one end of the chamber the enhaler is inserted.  At the other end is a soft plastic face mask (like an O2 mask).  We spray the enhaler mist into the chamber and watch as a indicator flap shows the breaths the baby takes.  After 10 breaths, we use the other inhaler and repeat the steps.We also have 

to wipe Grants mouth & gums off with a clean wet cloth after the inhaler since one of the meds

can kill off the good bacteria in his mouth.

        Jace picked up the prescriptions that afternoon.  To our shock, the total cost for just the medicines (not including the thickener) came to... drum roll please.... $460 out of pocket/after insurance coverage.  That will cover approx 1-1.5 months.  The thickener will be approx another $50/mo and we'll have Dr. visits every 6-8 weeks during the next year.  We don't know what the out of pocket cost of visits are yet.

The boys sure are worth the cost and time, and we both realize things could be much worse.  We'll certainly take what we have with gratitude for our blessings.   

  The boys endured the 3 hour visit very well with mostly smiles and patience. Jace is glad he came with me and will at least go for the next one.  It would have been so tough juggling it all alone.  The boys were weighed during the vist:  Merrill is at 16.6 lbs and Grant is at 15.6 lbs.  It's amazing how much that additional pound shows and feels on Merrill. 

The boys prescriptions & Grants inhalers w/ breathing mask chamber. 

          What the 1st feeding of the day looks like. Yep, you counted right, 5 bottles in 1 feeding. 

The rest of the day will be 3 every time. 

       Today is the 1st day that we've/I've (since Jace is & has been more than willing to help out whenever he can) made all changes.

I have to say, its tough! To put it lightly. It'll take a bit getting used to & be much more time consuming in my & our days, but I am grateful for the technology we have now to help our little ones since we were told, if left untreated, it could affect Grants breathing for the rest of his life. As a mom, I definitely knew something wasn't right, & after pushing the pediatrician on it a few times, we were able to get it looked into more in detail & get some great answers. We had even taken Grant down to our local hospital for an appt. right before Christmas to get whats called a Barium Dye Swallow Test to see if he was aspirating anything, but checked out fine, so we still didn't have answers as to what was going on.

        Its a lot to take in & feels so very, very overwhelming right now, but also know things won't go like this for too many months & are trying to keep positive about it. I am so grateful to have my wonderful husband by my side supporting me through it all since I go solo during the days, but is such a huge help in the evening & on weekends.

       I think we'll look back in later years & laugh, cuz if you could see us now, its quite comical! If you could see me trying to entertain Cole while I have one baby sitting up in my lap & one next to me sitting up hand bottle feeding them, its a sight to see. :)

We are truly, truly blessed that non of this is long term or for life. What doesn't killl you, only makes you stronger!