Amazon Shipping

Monday, June 6, 2011

New name and some of J's history...

Okay, so while the blog address is staying the same, I have decide to change the blog title to more appropriately reflect the content of the blog.  While I originally set out to chronicle my daily actions toward losing weight, it has turned into a blog chronicling the transformation of my life in a multitude of areas.  So I have changed the name to better reflect that focus, which is much broader.

Okay, so Today I am going to talk a bit about my son's (J--age 4 & 3/4) journey, as we had a slightly shocking eye appointment today, and I just, for myself, want to process it, thus I will tell some of his story, mainly his medical stuff, focusing on his eyes after the initial history.

J was born a preemie (12 weeks early) to a 25 year old birthmom who had had 9 pregnancies (5 live births, 3 abortions, and J--probably more since then but I only know of a teeny tiny piece of her story).  J had no prenatal care prior to being born and about two to three weeks before his early birth she had gone to the doctor seeking an abortion, but was told she was past the 24 week mark and thus too far along.  She arrived at the hospital a couple weeks after that in labor with him stuck breech in the birth canal.  They had to perform an emergency c-section to get him out, as he was being crushed by the contractions.  He was bruised all over his body from the contractions crushing him, he was cyanotic, and had breathed in meconium, in addition to being nearly 3 months too early.  His apgar score at 1 minute was 1 (zero is dead).  We had the chance to talk to the doctor that delivered him, and she said when she pulled him out she did not think he would make it.  But oddly, this little fighter managed to have a 5 minute apgar score above 7.  So the doctors and nurses were amazing at reviving him, and he had an amazing will to live. He as just shy of 2 lbs 10 oz.  His birthmom contacted an adoption agency that day and arranged to sign him over to the agency.  As a single mom with five boys at home already, and with his likely daunting issues, she knew she could not take care of him and that someone else could.

Josiah had heart surgery at three days old, to close a hole in his heart that was normal for a developing baby in the womb but that needed to close with him outside the womb, as oxygenated blood was mixing too much with depleted blood, thus reducing the ability to keep his body oxygenated. He was on a blown oxygen as his lungs were not ready to breathe well enough, he later was slowly weaned off the supplemental oxygen during his 2 1/2 months in the hospital.  During the first two weeks, Josiah developed a Grade III brain bleed (intraventricular hemorrhage--IVH) on the left side of his brain and later a Grade IV IVH in the right ventricle.  As the chance of death is over 50% for one grade III or IV bleed, the fact that he survived both a grade III and a grade IV on opposite sides is incredible. A grade III causes damage by increasing ventricle size due to the added fluid from the blood, and a grade IV causes damage by both increasing ventricle size and by blood actually absorbing into the brain tissue itself, severely damaging the brain tissue. On top of that, he developed post-hemorrhagic hydrocephalus, which is a build up of cerebral spinal fluid in his ventricles which puts a great amount of pressure on the brain from the inside, which in an infant forces the skull to open wider in an effort for the body to save the brain from being crushed between the ventricles and the skull. 

We brought him home at 2 1/2 months old directly from the NICU. He had a laundry list of diagnoses including: 1) Prematurity, 2) post-hemorrhagic  hydrocephalus 3) GER (gastroesophogeal Reflux) 4) ROP (retinopathy of prematurity) 5) Anemia of prematurity 6) neutropenia 7) Reactive Airway Disease 8) failed newborn hearing screening (twice) and 9) I can't remember what the ninth on the the list of 9 was now, I have it at home somewhere . So basically he was a child who could potentially be blind (ROP), deaf (failed hearing screens), on a feeding tube (narrowly dodged a nissen wrap thanks to a GI doc willing to trust us to do the hard work of feeding him every hour with thicken formula and working hard to get enough food into his body without it ending up in his lings--the first 8 months were hell, as he had to be fed every hour and had to remain upright for 30-45 minutes following each feed--try to imagine how life is like that), with risk of severe CP, MR, and a host of other issues.  We were told at the hospital that it is hard to give a prognosis, but to be prepared that he may be just barely functioning, may never roll over, may never speak, may never be able to do anything (BOY did HE blow that out of the water).

So, that is his basic beginning, to lead into what I want to talk about today--his vision.  Josiah has been going to the eye doctor since he was a tiny infant (in between trips to the ICU, the eye doctor even visited him in the ICU one time so that he would not miss his visit).  So for the first few months he went every couple of weeks to ensure the the ROP was resolving and the blood vessels were not getting too out of whack.  The reason they have them go so often, is that with ROP, the blood vessels grow incorrectly and can actually grow abnormally to the center of the eye instead of on top of the retina.  Retinal detachment can occur, causing blindness.  But if caught early enough they cauterize the blood vessels and stop the destruction of the eye, but that also results in impaired vision.  Anyway, we went every couple of weeks and though the blood vessels were growing slightly abnormally they kept growing int he right direction.  Appointments were then moved to every month, then every 3 months, and by 14 months old, his eyes were developed and the ROP resolved on its own. 

The second problem with his vision then came into focus ( :P ).  With the brain bleeds and hydrocephalus (all that pressure), there was some damage to the optic nerve on the right eye (right side brain damage causes the physical body problems on the left side, but the eye on the same side as the damage). He was down to seeing the eye doctor every 6 months. He was diagnosed with both far-sightedness--so he can see things farther away okay, but up close is blurry.  And with strambizmus (lazy eye) on the right side.  He got glasses that he needed to wear 3-4 hours a day, and we began patching the good eye to force him to use his weaker eye.  As he got older he would remove the patches, so we moved up to eye drops that cause the left eye (his good eye) to be blurry, thus making him use the right eye.  He did fairly well, and by the time he was 2 1/2, his second pair of glasses corrected the strambizmus well enough that patchign adn drops were stopped.  We were cleared to see the doctor one a year and have him wear his glasses 5-6 hours a day, especially when he was doing table work (coloring, puzzles, playdough, etc...).  Last year's eye appointment went well, his eye was still weak but seem to have stabilized, we did not need a new prescription as they had only slightly changed, and he was to continue to wear his glasses 5-6 hours a day.  Which he usually did at school.

Well, over the past few months he has been growing more and more resistant to wearing his glasses, and within the past few weeks outright refusing to wear them, even at school.  So it was time for his appointment, and today's eye appointment was a shocker.  Both eyes now require vision correction at all times (though is left eye is in the regular range, and has not changed too much), but his right eye has deteriorated horribly.  He can not see much at all, he could not even see the large E on the chart.  Technically, he is blind in that right eye now.  The doctor said probably he has not been wearing his glasses because his eyes have changed enough that the lens may make his vision worse.  So new ones have been ordered.  And we are going to implement an aggressive semi-patching routine with a high prescription strength lens on the right to try and get as much vision as we can.  We will be going back to the every 3 months visits to the eye doctor.  But he said there may not be anything that can be done.  With the brain bleeds he had, and the fact that we did do so much early on to strengthen that eye, it is very probably that the damage to the optic nerve was too much, and that it will continue to diminish.  But he is not willing to give up just yet.  The early patching and blurry drops should have corrected it.  He said they don't like to talk about the possibility of it not getting better until around 5 or 6.  Which is why I am just now hearing that this is a possibility.  As he has not been wearing his glasses these past couple months, that could be why it is such a drastic change from last year. 

I was not prepared for this news, as I really thought his eye issues had stabilized and we were just at the management phase.  But alas, that is not the case.  It is possible that he may end up legally blind in that right eye, and there is nothing we can do but try to stop the degradation as much as possible by forcing him to use the right eye.  It is going to be an interesting summer... 

No comments: