Teagan had been doing really well up until saturday afternoon and everyone has been trying to figure out whats causing her to decline. They did an echo yesterday and after initially thinking that everything looked good, the surgeons came back and said that Teag might have some pulmonary narrowing at the Glenn sight. (where they attached the svc to the pul.) They're not sure if its an issue or not because the echo never really gives a clear picture of the pulmonary anyway. Also, if it was a true narrowing then Teag's sats would be low and stay low and she wouldn't be responding to oxygen. (Teag's sats are all over the place high & low, and she definitely responds to oxygen)
Also, T is definitely having some 'digestive issues' meaning- nothing is happening! She eats and eats but nothing comes out due to the thick 30 cal formula plus the oxycodone. She also has no urge to use any of her muscles down there as she is still very sore from surgery. So yesterday she began throwing up and I'm positive its due to us just packing her full. We're now giving her some meds to help move things along and she seems to be doing better.
All of this on top of T being absolutely exhausted is (in my opinion) why she isn't doing too hot with her sats, feeds, fussiness ect... The docs left last night wanting to do a cath to 'take a look' at her pulmonary and possibly balloon it if necessary. They also wanted to start an iv last night 'just in case' she needed fluids in the night if she continued to get sick. I wasn't having any of it! By that time I was so tired of Teag being but through any more pain or discomfort to 'take a look' or 'just in case' when I knew that this girl just needs to poo and sleep! So the plan was to watch for 24 and schedule her cath for later in the week- which could be cancelled.
We started feeding Teag through her ng tube (and meds) at 90mls/hr. every 3 hours. Last night she took every feed without throwing up and she's also been off of oxygen since 5pm last night and for the most part is doing ok. Her sats dip into the upper 60's and low 70's when she's in a deep sleep and when she's awake they're in the upper 70's and even low 80's. The docs did rounds a few hours ago and saw how well she was doing. (even though she was screaming while they were in here) So now the plan is to watch for another 24 and if she's not throwing up and is able to maintain her sats then we might get to leave on thursday and possible come back in a few weeks for a cath if needed! Otherwise, the cath is on for thurs. and we'll go from there.
Today we are praying that Teag is able to 'go' and also keep her feeds down. We're praying that she can keep her sats up on her own without oxygen and that she can be as comfortable as possible. Please keep her in your prayers today and this week!!!
-oh, one more thing. I sat down yesterday with the head of patient/family relations here at the hospital to discuss all of Teagan's 'hospital wounds' and express my frustrations about everything that has happened. It was so nice to finally feel like I was talking to the right person! I emailed him pictures of all of her injuries and wrote up a report. He is going to get back with us this week, and is also going to present all of the info to the head dr.'s and nurses here so that there is an awareness about everything. He was very understanding and compassionate and at the end even offered to buy us dinner! I told him how concerned I was with Teagan's sleep and how we were frustrated about getting another roomate yesterday when there were open rooms down the hall. So last night they made it possible for us to move to a single room where we can't get a roomate!
Things are definitely much better today here in our cozy quiet single room!
Here's how I left Trent & Teagee last night. All tucked in together ready for bed! She loooves her daddy and was so happy that he came back yesterday! I went across the street to the RMD house to sleep for a few hours and for a much needed shower!