We found out Tuesday morning that Dr. Rembecki was making arrangements for us to go home. I am glad that I had the good sense to ask that our prescriptions be called in so they would be ready when we left the hospital and we wouldn't have to fool around at the pharmacy:) (I'll get to how wrong I was later)
I had an appointment at 2, so our good friend Christy came to "babysit" again. After my appointment, I tried to pick up the prescriptions, but they only had three of the seven! (Would have been nice of them to call and tell me that in the morning, so that I could have tried to get them someplace else!) So I got what I could and headed back to the hospital. I asked the nurse if she knew where I could get the last couple. She suggested the pharmacy downstairs! Why didn't I think of that! How easy that would have been!
So we checked out of the hospital. Christy was wonderful enough to help me downstairs and waited with crying Aubrey, while I went to the pharmacy to get her stuff. Pharmacy had ONE! And they didn't have the actual presciption, so I waited while she called the doctor to get all the information and then prepare the drug. We were finally on our way out to the car with a stroller full of stuff, crying baby, oxygen tank (at least it has a wheely cart) and two bags of drugs. (we will pick up the final script tomorrow)
It would have been so lovely just to get home, but we had to stop at Dr. Rembecki's office to get her synagis shot (her appointment had been that morning). Unfortunately, the people who give those, leave at 4:00pm (something he failed to mention), but they were gracious enough to let us in and after sitting for 45 minutes (in a sterile room though) we were granted the last shot of the day.
We got home about 6:00 and quick grabbed some dinner before her next treatment at 7:00. We were so unorganized and had to get the big oxygen tank and everything set up still. By 9:30, we were exhausted and went to bed. The last two days have been more of the same. Ella (3) has been running 103-105.8 fevers, so I have been splitting my time between the two of them trying to make everyone happy and meet their needs. Ella having been to see Dr. Dan today is still no better tonight, so will probably be going back to see him tomorrow.
We are doing 5 breathing treatments a day, every 4 hours ( he so graciously said that we could skip the 3am one!) We are alternating between two different nebulizer treatments. 3x a day we do xopenex and pulmicort, which is what we had done for maintinence. 2x a day we do a 3% saline solution first and then do a second nebulizer of xopenex and mucomist (it smells like rotten eggs). This one we follow with the Cardio Pulmiary Therapy--CPT, which involves patting on her lungs with a little pink "cup". She is still taking her regular med for the small leakage she still has as well as, a steroid for a couple days, prevacid to keep her tummy from getting upset, 3 different nasal sprays, mylacon drops (because apparently her x-ray shows that she has pretty bad gas or as he put it "a man burp in there", and she is on oxygen... and has a pulse ox monitor...
We are able to wean her of the oxygen as she tolerates it during the day, but are to keep her on it at night until we see him in the office next week. Let me tell you how this is going...She takes it off her nose at night and keeps her stats up just fine. She leaves it on all day long, and can't keep her stats up! She doesn't do anything by the book! Her progress is slow and steady, but she is keeping her numbers higher than she was at the hospital and her stats don't tank when we do her treatments like they used to...slow and steady...patience...We will know more next week about our maintenance plan to keep her healthy and what we need to do at the first signs that she is sick. Her immune system is weak and all indications are that she will have troubles every time she is sick. God has blessed us with a wonderful team of doctors to take care of her at all times and we are gracious for them. We continue to have confidence in their abilities to make good choices and suggestions for her health.
She is happy to be home and so are we. We could do without the equipment, but it will be gone soon enough. We are so thankful once again for all of the continued prayers for strength and health, as well as those who are looking out for our "tummy health":) Meals are certainly not necessary, but sure are appreciated at the end of these long days.