Sorry for the lack of updates but my Mila girl was my number one priority and she needed me :)
So I think I briefly mentioned in my last post that Mila had a minor complication after her surgery. When Mila came out of surgery she was very upset, which we hoped was just from anesthesia but it seemed like she was uncomfortable or hurting. They assured us she wasn't in any pain but they could give her tylenol if we wished...yes please. She was crying very hard (because she was probably upset AND they later told us probably in pain! ugh), which caused her blood pressure to sky rocket. Her pulse ox dropped very low (hypoxia) and her respiration's were very high. She was struggling a bit. They put her on oxygen to help. They ordered a chest xray and saw her lungs were "wet" even though when they listened to her she sounded clear. This was likely due in part to her missed med dose (I asked and asked and asked if there was any way we could give it to her and they assured us it would be okay to give it to her when she woke up from surgery) as well as all the extra fluids given to her during surgery, and her congestive heart failure all working together to cause the fluid build up in her lungs. So they gave her a dose of lasix to help flush the fluid build up from her lungs and she was much more comfortable after that. She did NOT like the oxygen cannula in her nose AT ALL and pulled it out repeatedly and then screamed when we put it back in. She's a fighter ;)
Tuesday morning we went for a "swallow scope" (I made that term up). They scoped her and watched on the camera to see if she was aspirating (different from a swallow study). The doctor was just as excited as we were when he saw she was not aspirating!!!! We knew her aspiration could be caused by the laryngeal cleft, but we also knew it was very possible that even after having this fixed she could still be aspirating from neurological causes/low muscle tone (common in babies with DS). We were thrilled to learn she is no longer aspirating!! We will keep her on thickened liquids until after open heart surgery just so we don't throw any huge changes her way prior to surgery. She will have a swallow study after open heart surgery just to triple check and then we'll be cleared for thin liquids again! As a result of the airway surgery her breathing is also a lot less noisy and she isn't having stridor anymore. She is still contorting herself into her sleeping position, but not nearly as much. The doctor thinks it has just become habit for her and she just automatically goes to that position. He said it was okay to reposition her (PTs will be happy to hear that!) as we find her in that position to help her retrain her brain that it is okay to sleep without having her head cranked back! Her coughing has not completely resolved and they think the coughing that she is having is due to her congestive heart failure and extra fluid in her lungs.
They did discovery that her airway is narrower than what they hoped to see (can't be fixed) and they put a note in her record for her open heart surgery. That means she might have to stay on the breathing tube a little longer than normal and wait for the swelling to go down. I'm glad they know to possibly expect a difficult extubation though. The ENT even sent a note to the cardiothoracic surgeon telling him what size tube will work best for her.
We were discharged Tuesday and Mila and I stayed at Shawn's brother's house, while Shawn drove home to take care of our other favorite girl, Zoya. I took Mila to her pre op appointments today and am feeling a little more peace about things. It's no secret we did NOT dig the cardiologist we initially met with. There was a huge lack of communication, unreturned phone calls, lack of information given to us, etc. A bad first impression. I was NOT happy today when we met with the nurse practitioner to go over her surgery and she casually mentioned Mila will also be having an ASD repair in addition to the VSD repair! What huh? Nobody ever told us she had an ASD as well! She looked at me like umm you didn't know that? The cardiologist certainly NEVER mentioned that in our 10 minute appointment with him!
When I met with the cardiothoricic surgeon who will be doing Mila's surgery, I felt much better about things. I asked if he could explain why they didn't want any additional tests and exactly how worried they were about her pulmonary hypertension. This doctor is the chief surgeon and he is very confident that all will go well on Monday. He said in 14 years he has repaired 500-700 VSDs and every single one has gone well, with all babies going hom with their parents in the end and only a few needing pacemakers (a possibility for any child going through this OHS). He said her pulmonary hypertension is exactly what he would expect to see in a 9 month old with an unrepaired VSD and ASD and that he can't promise, but really thinks her pulmonary hypertension will eventually be gone and is being caused by her heart defects!!! Why couldn't someone have told us that to begin with?? Because I certainly asked and asked and asked! On a side note, Mila has the same exact heart defects that Zoya had repaired in Ukraine!
We will have an exact surgery time on Friday, but we know Mila is the first case of the day so pretty early. If all goes as planned she will spend 1-2 nights in the Cardiac Intensive Care Unit with a one-on-one nurse and then approximately 5 more days in the cardiac step down unit. I got to tour both areas today and it's going to be tough seeing her in the CICU.
So there's the medical update, I'll post the "emotional" update with some pictures later ;)