We are still here in the hospital. Tube feedings are still going very well. She is on full feeds and I have not seen any reflux at all. Praise the Lord!!!! We went down to radiology yesterday and they advanced the j portion of her tube a little more to be sure it is way in there where it needs to be. The surgeon also had them check her gtube placement because he thought that it may be sitting on her pylorus and causing some of the emptying problems. Sure enough it was. So he came by after we got upstairs and adjusted it some. We will get with him later on an outpatient basis to discuss and schedule when we want to redo the fundoplication surgery. From his standpoint we are clear for discharge but now we are still dealing with........the respiratory issue.....
She does have some type of mucus blockage on the upper portion of her left lung that is causing her to struggle to pull in enough oxygen. Her pediatrician has now put her on an IV steroid as well as a steroid through the nebulizer to help. She is still continuing the antibiotics from her ear infection that are doing double duty now for the respiratory infection as well.
Yesterday I noticed she was kind of warm but her axillary temp was 98.9 when it was checked. Then last night as we were about to give her a sponge bath I thought she still felt very warm so I mentioned it to the nurse. She went ahead and did a rectal temp and it was 102.9!!!!!!! Her heart rate had been staying on the high side as well and the nurse said this was common if there was a temperature. So the high temp explains the high heart rate as well as why she has just been wanting to sleep. We gave her a tepid bath and that brought the temp down quite a bit. She also got a dose of Tylenol and today her temp is fairly normal.
This morning we noticed that her IV was leaking some around the site so one of the nurses took it out. Hey, I am pretty pleased that we got it to last 4 1/2 days especially since at times she was moving and bending her arm quite a bit. We are hopefully going to be able to leave it out. She doesn't need the fluids anymore since she is up to full feeds. Also, any of the meds she was receiving through IV can be given another way. We are just waiting for a response from her ped to make sure it is ok and get the orders. He has already changed her seizure meds from the IV back to her g/j tube because the level kept dropping to the point that it almost wasn't therapeutic anymore. The therapeutic range is between 14 and 40. She normally sits around 25. Yesterday it was 16, I believe the lowest it has ever been. So her ped changed it back to g/j tube and ordered a double dose as a booster.
Hopefully today we will begin slowly backing her off of the oxygen again until she is able to hold her 02 saturation on her own. Pretty much when she can do that we can go home as long as the fever doesn't return.
Please continue to pray for strengthening of her body. She is certainly one tough cookie and an amazing little fighter. Everyday I am blessed to see more and more what a precious gift she is. No one can help but to fall in love with her. She is making new fans during her recent stay and we have been so happy to be able to see many of her NICU friends also.
God has such an amazing plan for Teryn and our family. She has already touched the lives of people she has never met. There have been people who do not consider themselves a "person of faith" who have contacted me in one way or another and said they do not pray, but they have been praying for Teryn. How amazing that she could be the inspiration to get someone to want to talk to the Lord. My prayer is that God will bless all who have spoken Teryn's name to him. And oh boy has He been hearing her name a lot. Not just from friends and family who know her but people who know someone who knows someone who knows someone who has heard about our amazing girl. I also just found out that she has been added to a prayer chain through our church that involves 400 other churches. That is 400 churches worth of prayer warriors speaking my baby's name to the Lord!!!!!!! I don't know about you but that speaks to my heart.
She is resting quietly right now and should be receiving a breathing treatment shortly. I will continue to keep updates coming as I can.
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