Today was yet another quiet day, which we are VERY grateful for! Chase spent most of the day napping and chilling out. I got to spend some quality time with him in my arms again today -- WOOT!!! They did another echo on Chase and everything looks fantastic! Praise the Lord! Also, he got up to full continuous feeds so they've started compressing his feeds so he gets his full amount in less time. So far he's handling it well!
So as OT (the occupational therapist) was working with Chase (while I was still holding him, thankyouverymuch!), I noticed Chase's nurse started packing up his things out of his drawers, put them in bags and placed them under his crib. I knew there had been some discussion about us moving up to 7C, but I hadn't heard anything definite. After OT finished, I asked the nurse what the game plan was. She mentioned that the ball was rolling and Chase would be moving up to 7C tonight!
Whaa??
I couldn't believe it! I made absolutely sure Chase wasn't going anywhere for at least 20 minutes because I needed to go pump (TMI?). Anywho... I came back about 20 minutes later and his things were all unpacked back into his drawers and the nurse said Dr. Hsia said he wanted to wait until tomorrow to send Chase upstairs.
Oh.
Really, I didn't mind the wait. We certainly aren't in any hurry to get out of the PCICU -- the care there is very good and we are "comfortable" with our current routine. There are a lot of unknowns as to what things will look like once we get to 7C and I'm staying at the hospital with Chase 24/7 in his private room. So I asked why the change and the nurse said Dr. Hsia didn't really give a reason, which didn't surprise me. She mentioned that she thought the attending Pediatric Cardiologist may have made the call to have Chase moved upstairs without first getting Dr. Hsia's sign-off. Hubs and I have talked with Dr. Hsia a LOT and he is fully aware of how conservative we are. He's the same way, so we're guessing that was part of the deal. Like I said, we're fine with it mostly because it means one last good night of sleep for me, plus more time to pack my things for the hospital, and of course another night of care in the PCICU. So there's a VERY good chance that this time tomorrow, I'll be posting from 7C! Ack! Things will get a bit crazy then as I will be living at the hospital with Chase and hubs and LO will be staying here at our rental house. Should be interesting!
Early next week (hopefully Monday), Chase will do a swallow study where he will drink liquid mixed with barium while a radiologist takes video x-rays of his mouth and throat to determine how liquid passes into his esophagus. They basically want to determine that he will be able to successfully swallow breastmilk without aspirating on it. I'm slightly concerned about how he'll do with this only because he has a paralyzed left vocal cord as well as the area in his throat that had some granulation (which was removed during last Wednesday's procedure). My hope and prayer is that he will continue to amaze us with his outstanding recovery and that he'll pass the swallow study with flying colors! If he isn't able to drink the breastmilk without aspirating, they'll try to thicken the milk to make it less likely for him to aspirate on it. If this ends up being the case, it will definitely rule out breastfeeding for awhile. :( He may also end up keeping the ng tube (it goes through his nose into his stomach) for awhile as well, possibly even after we're discharged. There are a lot of variables and unknowns right now regarding how well he'll do with the swallowing part of eating, but I'm happy to say he's exceeded expectations with his sucking reflex! That means we're making progress towards mouth feeding... so please pray that he'll do great with the swallow part!
Ultimately our goal is to get our family back home! So the next step is moving up to 7C. Then we'll have the swallow study and work on getting our boy to eat his full feeds by mouth. From what I've heard from other families with heart babies, the feeding part is the biggest hurdle to get over before going home! I'm so happy Chase is making such great progress and I will continue to pray that my sweet boy learns how to eat quickly so we can keep up our momentum and get back to our home sweet home!
Thank you for your continued prayers for my baby boy!
I'm so glad that ya'll are still doing well and that Chase is still behaving himself!) Jackson also had a paralyzed vocal cord; it didn't effect his eating by mouth at all. I will say that the "feeding part" was probably the most frusterating part. I had assumed (we all know what happens when you assume!)that they would just stick a bottle in his mouth and out the door we would go. (We didn't know that Jackson had a heart problem so the first 3 days of life he had eaten from a bottle.) Jackson did well with feedings it was just a long process! Prayerfully your Little Man is going to pass it all with flying colors, and soon have both feet out the door! We're still praying for ya'll!
ReplyDeleteKristin Boyd
(You're almost halfway there-you soon will have one foot out the door!)