Posted (Tina) in All Posts on September-24-2009

One thing I forgot to mention on yesterday’s post was that we were not able to arrange for her teeth to be examined, but they were able to conduct an ABR hearing test while Ella was sedated. They didn’t get much new information, however they did test the auditory nerve that connects to the brain. It tested normal which is good. Ella was starting to come out of sedation so all they had time for was a tympanogram. It tested flat again. This means that she has mid-to high pitch hearing and cannot hear the mid-to-low end pitch sounds. Also, her eardrum was not moving and the eardrum appeared a bit red. All of this indicates what we have been told over and over: she likely has fluid in her ears.

This time, I expressed concern with waiting around for another test to have a different result and asked for a recommendation of an Ear, Nose, Throat Specialist through the Children’s Hospital that can definitively look at her ears for fluid and any other medical issues. Thankfully, she has never shown signs of an ear infection but it doesn’t mean that her ears do not have fluid. More and more, this seems to be the likely culprit. The audiologist explained that this might be why she seems to have “selective hearing”; at any given time she may have more or less fluid in her ears which can impact her hearing. So if nothing else, this test simply confirmed that we need to pursue Ella’s ear health from a medical perspective. This would also mean just making sure that there is nothing medically impeding her hearing and putting the audiology hearing tests on the back burner until we know she is at a point where she will tolerate the sound booth tests.

Last night was a bit tough for Ella. The antibiotics did a number on her tummy and gave her loose stools. The only thing that helped this time: we were prepared. This happened last time she had her cath procedure so we knew to expect it, plus we brought Maalox from home so we could avoid any arguments with the nursing staff. We did tell them that we brought the Maalox and recorded when we administered it. Fortunately, they were satisfied with that protocol. We only used it twice, once after each dose of antibiotic. It was amazing how it coated her tummy.

We had a tough time getting all of Ella’s medications sorted out. We thought everything was fine by 8pm or so last night and then realized that we were still missing meds. I even discovered that her diuretic dose was way lower than what it should have been. So, I gave her the 0.8ml they provided, but she was supposed to receive 8ml. At first, I just thought that maybe the concentration of the medicine was different. But we discovered that it wasn’t concentrated different, so that is a big difference.

Therefore, her numbers started to not look as good as the night continued. We increased her oxygen to 1 liter and hoped that we could resolve all of it in the morning. It wasn’t coming easy, so we became insistent as soon as shift change came at 7am. We were in the hospital for one reason. By not giving her diuretic for her fluid issues, we could bring on another issue. It is so strange because we have never had this much challenge getting Ella correct medicines at the Children’s Hospital. But even today as we left, they still never provided 2 of her medicines. I wasn’t that concerned because I knew we were headed home and they are meds that are only taken 1 time per day, but still. It is easy to see how mistakes and carelessness leads to bad medical mistakes. It can happen to us and yet, we are really involved with Ella. It was not professional and we were surprised to see it happening when they’ve been so good about this in the past.

Once we had an echocardiogram and chest xray in the morning, Dr. Fagan came to check on Ella. We expressed our concerns on the diuretic but also let him know that she seemed to be doing really well. Next thing we knew, the nurse came back to our room with discharge orders. It was about 2pm by the time we left the hospital.

With more diuretic on board and better blood flow in her SVC and to her brain and all of her extremities, her color is so much better. Her eyes are less puffy and her color is amazing. I remember this happening last time – – she just looks better. Especially today, there was such a drastic difference. Even though she is still catching up on sleep, she is happy and feeling better which is a huge relief.

Thanks again for all the support and prayers. It’s nice to be home so we can escape hospital food. Also, we’re looking forward to catching some much needed zzzzs tonight in our own beds.