Lexi started her HBOT at 3.5 months, we did this to give her the best chance possible. You wouldn't believe how hard it was to find a clinic that would pressurize Lexi slowly and not force her to have tubes put in her ears. Susan really took her time with Lexi and for that we didn't have any ears trouble at all! Lexi has a g-tube, since she can't suck or swallow very well. She would have to be suctioned sometimes three times a day. She was on an apnea monitor and feeding pump at night. She used to cry/scream all the time day and night and no one could comfort her. She was on Chloral hydrate and Ativan every day several times a day! Never slept thru the night. She didn't track very well, hardly smiled at all, and when she did, only half of her face could move. She kept her tongue locked at the roof of her mouth at all times, (we would have to force a pacifier in between the roof of her mouth and her tongue which was very difficult). Her pupils didn't always dilate properly. She was flaccid (low tone/floppy). No head control what so ever and she always kept it turned as far to the right it could go causing snapping sounds.
NOW, she doesn't cry much more than her twin sister Cari. She really likes the family and we are able to comfort her. She is sleeping through the night (has been since the second week of HBO) She is also off her feeding pump and apnea monitor. She hasn't been suctioned for almost 2 months (this was starting to happen before HBO) She is rarely given Chloral hydrate, and given Ativan in morning and at night in a very low dose, just to keep her from having tightness since she is moving muscles that she hasn't moved much before. Her pupils are dilating perfectly! She is always tracking objects, smiling bigger with (both sides of her mouth) and much more often than before! I am actually expecting that she will laugh soon, it really looks like it. Her tongue comes out like a normal baby. She is sucking on a bottle (a very little amount) and swallowing taking up to 10 cc at a time of breast
milk unthickened. Starting to gain a small amount of head control and starting to bare a little weight on her legs at times.
Now this is what the doctors say; Ophthalmologist said he thinks HBO helped her, her eyes are doing some sort or REM while she is awake and he thinks these are small connections being made in the brain that she cannot stabilize yet. He is looking forward to seeing what the next treatments will do. Pediatrician said WOW I am impressed! (before she saw Lexi she said "I think these things your describing to me would have happened anyway, nothing is out of the norm.") Now she is fighting with OSU hospital and Children’s hospital to let us do it there, however she has been unsuccessful. Neonatalogist said her tone is much better, she believes that Lexi will eventually be able to sit and roll over. She said over and over again "we have a chamber here, we could treat her here!' She has already written a letter to my pediatrician (I know this cause my pediatrician said she received it the next day after the appt.) The neonatalogist and all other doctors have documented everything.
I have a diagnosis of them saying she will be a spastic quadriplegic, and may have to have her tendons cut. That she will have CP and need a baclofin pump, and we have been told many times, as they look down at her, that this will probably be all she ever does! In my opinion, Lexi has blown their minds!!!!!!!!!!!!
We have yet to see the EEG, MRI, and Hearing dept. on the 21st and the Neurologist and Radiology dept(for swallow study) on the 23rd. We are doing everything that we can to pave the way for other children to have availability for HBO therapy!
Many blessings to all of your children,