We’re in recovery now with Evie. All the testing and the gtube placement went smoothly and she’s waking up now. We’ll know results hopefully sometime next week.
We have finally got Evie’s tests scheduled for this Friday, the 30th. It will be a very busy day and starting very early. She will be put under general anesthesia first, then she will have an MRI that will check her brain, ears and face. Then a CT scan (formerly known as CAT scans) will check her trachea and upper chest. Sometime in there, audiology will come down with their portable BAER/ABR machine to test her hearing. After she wakes up, we’ll head up to her pediatrician’s office to get her last RSV vaccine shot (they are monthly shots given during peak RSV times). Thursday we will see her ENT and surgeon and I’m hoping I can convince her surgeon to pop down to radiology to put in a new gtube while she’s under since her current one has an internal valve that is broken, so it leaks constantly.
Please pray especially for general anesthesia to go well. I’ve said before that typically the surgeries/procedures themselves don’t worry us, it’s the general anesthesia that’s the most dangerous part for Miss Evie. That is why we try our best to group together as many procedures in one shot, so we can avoid putting her under as much as possible. We’ve been very fortunate to have Evie’s pediatrician and her scheduler working hard on Evie’s behalf to get all of these things scheduled. It is no easy task trying to coordinate so many different people and departments. Also, please pray for the results of all these tests. Please pray we find nothing in some instances and answers to questions in other instances. Thank you again everyone!
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? 🙂
- 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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Evie is throwing up a lot again. She just has so much drainage from another cold, it’s filling up her stomach. Add to that the incessant coughing and she just can’t keep her food down. Poor thing. Please be praying she gets past this quickly.
Also, Evie has a strange sore/lump by her trach that we’re concerned about. Pray we can figure out what it is and deal with it easily.
Please be praying for Evie. She has a fever and lots of drainage. Poor thing needs constant (and I do mean constant) suctioning, is throwing up, and is generally just miserable. Her oxygen saturation is a bit lower than it usually is and her heart rate is much faster. Please just pray she gets over this quickly. Our pediatrician told us when we first met her to expect Evie to take at least 2-3 times longer than a typical child to recover from any illness. Aleyna was sick with this for two days and is still pretty stuffed up, so we expect Evie to take quite a bit longer. Please pray that that is NOT the case and she bounces back much quicker than we expect.
Also please pray for Ty and I. We are getting very little sleep or rest. Please pray that we do not get sick as well.
Thank you everyone.
I’m afraid today did not go well. In her esophagram, I first tried to force feed the barium to her in a bottle, but she refused to swallow. Then we put some barium in through her gtube and tried to get her to throw up, but she wouldn’t. And lastly we tried putting a tube down her throat to get the barium into her esophagus, but that went horribly as well. So no picture and we’re going to have to schedule a CT scan and probably an MRI as well. We will be contacting all of her specialists to see if there is anything they want to take a look at while she is sedated in the CT scan or MRI and get everything done all at once.
It’s very difficult feeling like all we do is torture Evie, but her sweet personality just bounces right back. That girl is tough, let me tell you. Her mama is not quite as tough. Hopefully we have not worsened her oral aversion, but only time will tell.
We also received some news at a different appointment that a problem we thought had been ruled out when Evie was just five days old, was not in fact ruled out. Apparently the wrong tests were done, so we will need to check some things in an MRI. Please pray we find out this really is nothing. And please pray as we schedule the tests that we can get a look at everything we want to in timely manner and that the sedation will go smoothly.
Thank you for your prayers everyone! We will keep you updated as to when those tests will be done!
We would appreciate your prayers today. We are doing an esophagram later this morning to check a few things on Evie. In this test, they use barium to see her esophagus. This means she will have to either be force fed a bottle or we put the barium through her gtube and hope she throws up. Neither option is appealing to me. Force feeding her (aside from the fact that it is VERY unlikely she would even swallow) would set us back again on feeding orally. And obviously it’s no fun to force your child to throw up either. Please pray that the test goes better than I’m expecting right now. If we can’t get a good picture, the we’ll have to do an MRI with sedation which can be dangerous and unpredictable with a CHARGEr. Thank you!