We Met with Dr. Carter on 6/12/13 but unfortunately his office never recveived the swallow study results from the hospital. The report has a lot of detailed information ( or at least it is supposed to anyway) I gave him the paper that I did have with me stating that she is to be on thickened feeds at "Half Nector" which is 1 tsp per 1oz of formula however, I explained to him that she is still aspirating even on that consistency. He said we will try "Full Nector" Which is 2 tsps per 1oz of formula and "Honey Thick" which is 2 Tbsp per 1oz formula. He believes me that these swallow studies aren't doing her justice 100%. So he said there's no point in doing a repeat study because we can experiment with different levels of thick to see if it helps her aspiration at all. He is hoping that her raspiness and cough will go away once we find the right level of thickness. He did listen to her lungs when she fell asleep because awake she was too noisy and he did agree that he hears light wheezing which we will keep an eye on. The plan is to follow up with his office a month from now to see where we are at with her problems feeding and cough. He says our main concern is to ensure she can eat without problem and that her breathing is fine. If she still has problems before our next follow up appointment next month he wants me to bring her back in sooner. If nothing improves then we will need to see an ENT specialist to check her airways,etc. He is a good doctor and I trust him with his plan. .
The good news is we have found a thickness that works best for Savannah and it's Honey thick. We buy the single serving packets 100ct for $49.99 and you use 1 packet for every 4 oz bottle. Definitely starting to add up on top of $30.00 a can for her soy and dairy free formula. She definitely has Dysphagia and we are trying to do the best that we can with making sure her feedings are more successful. Since using the Honey thick packets her coughing has cut in half compared to how frequent it used to be.
I did mention to her pediatrician that I am concerned about her developmental milestones. She just hit 6 months age on June 10th and she cannot sit very long even when assisted. The pediatrician finally saw what I meant when she went to sit her up and waited to see if she would tripod "catch herself" when leaning forward and well, that never happened. Pediatrician said we would wait another month to see if it improves and if not then we need to get her into therapy. Early intervention is key. I almost didn't want to say anything about her being behind development wise because I always see posts of friends babies that are younger and they are accomplishing so much, which I'm happy for them but it leaves me thinking about my little bug :( I feel like she has been through so much and we still have a long road ahead of us.
My work, which shall remain nameless is really giving me a hard time right now regarding the absences I've had dating back to March when Savannah was in the hospital with RSV. The fact of the matter is I can't control when she's sick and if I had any control over any of this she would never be sick. I can't reapply for FMLA until 6/27/13 because there are only so many alloted hours per every rolling 12 month period. I was on FMLA prior during my pregnancy because I was severely sick and having ultrasounds almost every week after 20 weeks pregnancy and had a really hard time keeping food down sometimes. Anyway, my work's disability department runs your FMLA hours concurrent with your parental leave. How kind of them! As if I don't have enough already to deal with. I just keep telling myself that it could be worse and to just be thankful that it's not. I know one thing, I need my job, I need my medical benefits that will essentially get her seen by the right specialists because we have quite the road still yet to travel. I need my paychecks to pay for her feedling supplies and to pay the rest of my bills. Hopefully God will provide a way for everything to fall into place.
My husband is home sick today with a nasty virus and I hope and pray that our daughter doesn't get it because we know how easily she catches stuff. We also go on vacation in about 10 days and I cannot wait to get away. My soul needs it!
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