Posted (Tina) in All Posts on March-25-2009

Ella only woke up three times last night, which is a great improvement.

The only bummer…her numbers did not look good. She was requiring more oxygen than normal to keep her saturations high and heart rate was a bit higher too. Here we were starting to think that we were out of the woods on the fluid issue….not so fast!

One huge factor that likely contributed is that we discovered that her food pump was defective. We only changed it out at the end of last week and started giving her the amount of food she was supposed to be getting. Well, that was likely a big increase for her little body. We weren’t seeing any negative impacts over the first few days, so we thought she might be okay. At this point, nothing is definitive. We just need to watch her closely.

Today, we had to go back to the hospital for more appointments. It seemed like she was more fussy and cranky than normal (again, another typical sign of distress for her). We were there for a few different things, all of which caused meltdowns and required extra oxygen.

First, we got her hearing tested. They confirmed what they noted last time: she has negative pressure in both ears. Because she was sick last fall (was still in-patient at the hospital) and did not respond for some of the testing, they considered the test inconclusive. We had the same audiologist test her today. She noted that her findings are consistent with what she noted last time, plus the findings were conclusive today (she was able to do more testing). This means that Ella can hear high pitch noises, but does not hear low to middle grade pitch sounds. It might be fluid accumulation in the eustachian tube (the tube that goes from your throat to your ears) or may present a form of hearing loss. They want it monitored by her pediatrician and to have her re-tested in 4 months.

So, negative ear pressure and the eustachian tube are all part of your middle ear. The middle ear is an air-containing cavity between the eardrum and middle ear which contains the three ear bones (malleus, incus & stapes). This cavity is connected to the nasopharynx by the eustachian tube. The eustachian tube aerates the middle ear cavity. Disease in this area of the ear will cause a “Conductive Loss” or loss of sound loudness. This type of hearing loss is most commonly found in children and presents as an ear infection or ear fluid. Based on Ella’s history, it may be a form of hearing loss.

Interestingly enough, I have middle ear challenges too. The stapes is one of the three bones in the middle ear. It transmits sound from the incus to the inner ear. In a disease called otosclerosis, it becomes fixed and does not transmit sound as efficiently. A stapedectomy is a procedure which removes a portion of this bone and places a prosthesis to transmit the sound (I had surgery in August 2006). It is amazing because as soon as the prosthesis was in place, I could hear perfectly fine. Although my condition is very different from Ella’s, we are both girls with middle ear issues! Only time will tell how her condition will play out.

We tried getting a blood pressure reading twice yesterday at Dr. Abman’s appointment, but Ella would not tolerate it. Since we have discontinued Captopril, we want to watch her blood pressures (Captopril is a blood pressure reduction medicine). After a meltdown today too, they suggested that we go out of the exam room to try it (different scenery). Then, I suggested walking around, with no stranger interaction (she still melts down with strangers and assumes that they are going to hurt her in some way). So, we were fortunate that the schedule was light. We walked the hallways in her stroller for several minutes while she calmed down and finally got a blood pressure reading: 109 over 71. This is a normal, good blood pressure reading. It will be interesting to track as the days and weeks continue to see if the Captopril was making any impact in her blood pressure.

Finally, we had to end our time at the hospital by going to get labs. As usual, she was not happy and I cannot really blame her. It is so tough for any parent to watch your baby be in any type of pain, be poked with needles, especially when these important tests/pokes/procedures are important and necessary for her. You feel like you are inflicting the pain on her directly yourself, and it is tough because she doesn’t understand. She simply holds her breath, bears down, and cries really hard. After increased oxygen and lots of consoling (10 minutes), she can finally calm down. It can be scary because she won’t breathe…and my greatest fear is having her pass out on me.

Even after the blood lab, I fed her and she would not even tolerate the formula going right into her belly via the g-tube. This makes it worse, of course, because she ends up pushing all the food back up into the syringe and it just makes the process longer. All in all, she had enough of the day and was letting me know it!

After 2 hours of her melting down at the hospital, I was worn out. Clearly, she was too because she fell asleep in the car and took a cat nap on the way home.

It is days like today that I can get overwhelmed with all my emotions surrounding Ella. It is so tough to have a medically-fragile child that is developmentally behind. It makes me hurt for her, for us. Our experience is so different than most because of the road she’s been down. And although I know it is all part of His plan, it doesn’t make the raw emotions of the loss feel any different.

It will be interesting to watch her numbers tonight. I’m hoping that last night’s numbers were a fluke, but based on her over-the-top meltdowns today, it might be an indication of fluid retention. When she has little to no tolerance for anything, it usually means she is not feeling great.

We go to see Dr. Perry tomorrow and look forward to giving him an update. He has not seen her since late January, way before her SVC procedure. We’re continuing to pray for another restful night and that we will see no fluid retention and no negative impacts from discontinuing Captopril.

Exodus 14:14 (NIV)
The LORD will fight for you; you need only to be still.