March 22, 2012

Evie’s pediatrician wanted to see her yesterday since she was struggling so much, so we made the trek up there.

She had been having some wheezing in her right lung, but fortunately that seems to be gone. Her oxygen saturation is still not where we would like it though. Typically Evie sats around 99-100 (perfect), but since getting sick last week she’s been more in the 92-95 range with some drops into the 80s. Not good.

She also had some drainage in her left ear so we had been doing drops in that ear. When we got to the pediatrician, we discovered that her left ear looks much better but her right ear was very inflamed. We decided it would be best to do a round of antibiotics, but I have a feeling after we see her ENT next week, we’ll probably be looking at another set of ear tubes in the near future.

The lump we found about an inch to the left of her trach was “really weird” according to her doctor. Oh, the times that doctors have told us something was “weird” or “definitely not common” or “highly unusual”! Little girl likes to be different! We tried to have the pediatric surgeon on call take a look at it, but he had to rush off to surgery, so we’ll have her ENT and pediatric surgeon take a look at it next week. It doesn’t seem to bother her, but it is very bizarre. It’s a strange little ball under the skin that can move a good centimeter in each direction.

We’re still trying to schedule her MRI and CT scan, but it’s not an easy task. She will need to be put under and have an anesthesiologist with her the entire time. They also will have to transport her from one room (or floor) to another room (or floor) which no one wants to do. They especially do not want to take her in an elevator when she is under. So we’re working to get the two machines that are on the same floor just down the hall from one another, but apparently this is more difficult than you would think. We also are trying to persuade the audiology department to bring their portable BAER/ABR (hearing test) machine down to radiology to do her hearing test while she is asleep. They’re not too keen on this as they only like to take that machine to the NICU. I’ll also be talking with Evie’s pediatric surgeon about potentially putting in a new feeding tube while she is under as her current one has a broken internal valve which causes it to leak. We like to have a big production whenever general anesthesia is in the picture. Get as much done as they will let us. I think Evie is gonna get a reputation as being a little diva (or maybe her parents will!).

The good news of yesterday was that Evie is up to 14 lb 3 oz! She’s still not on the charts, but I think she’s decided that growth charts are for all those normal kids. She’s much to exceptional to be seen on the same charts, right? 🙂

Prayer requests

  • That we will be able to get back to full feeds soon. We have had to cut Evie’s feeds from 4 oz every 2 hours to 2 or 2.5 oz every 2 hours to keep her from constantly throwing up. Today we will venture up to 3 oz and see how she takes it.
  • That we can get her MRI and CT scan (and hearing test and gtube replacement) scheduled soon with no more hassle for our pediatrician’s poor scheduler who is making all the phone calls and begging and pleading for our case.
  • That the infection in Evie’s ear(s) will clear up quickly and she will not be in anymore pain. Poor thing has been batting at her face and ears for the past week.
  • That her oxygen levels will come back up to her normal range and this is not a permanent set back.
  • That next week we will discover what the lump by her trach is and what needs to be done about it.
  • That Evie will not lose any weight and maybe even start gaining again.

Thank you everyone, for your prayers! We appreciate them more than you know!

 

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