A Day For Remembering

As Hurricane Isaac makes landfall and begins to splash and pound across the gulf coast, I am reminded of a day 7 years ago that feels eerily similar.  Actually, it was this exact day, 7 years ago when Hurricane Katrina came ashore in south Louisiana and became one of only a handful of hurricanes in the history of Louisiana, who's name will go down in history.  We've all seen the images, the very devastating images of the wrath she brought across 3 states along the gulf coast.  We've all heard stories, stories of tragedy and stories of heroism.  And if you go to those parts of the country today, you will still see signs that she was there and that those places will never, ever be the same.

New Orleans is my mother's home town.  It's where she was born and raised and where she lived until she went away to college.  It's also the place my brother, Jason, calls home today.  So it holds a special place in my heart and when something like Katrina or Isaac threatens the area, it makes me pay a little closer attention.  But on this day, 7 years ago, my attention was diverted elsewhere.

After 98 days spent watching over and holding my baby boy in the NICU at Texas Children's Hospital, we were finally preparing to bring him home.  It had been a very long process, one that I wasn't sure would ever come.  We actually thought we were going to bring him home a month earlier, but then it was decided that he would need a tracheotomy, and that delayed our homecoming by another month.  During that month, we spent time loving him and caring for him and learning how to do so at home.  We learned about suctioning secretions from his trach.  We learned how to give him a bath without getting water in the trach.  We learned how to clean the area around the trach and how often and we learned how to change the trach tube out at least once a month.  We went through a few "classes" with one of the nurses on how to do this, using a plastic baby to practice.  Then the day came when we had to do it on our real live baby boy.  That was pretty scary.  But we did it and proved to everyone that we would be able to do this on our own at home.  We had already taken a basic infant CPR class, but now we had to repeat the class and learn how to do CPR on an infant with a trach.  And our baby had to do a little test of his own to prove that he was ready for the trip.  He had to do a car seat test.  This means he had to spend 1 hour in his car seat without having any episodes of desaturation or bradycardia.  So we took that time to attach his car seat to his stroller and walk around the NICU, saying goodbye to the many nurses who had taken care of him over those 98 days and also to the few families we had met along the way.  The hospital did a great job of preparing us and him for the day we had been waiting to come for 3 months.  Then the day finally came.

We got him dressed in the cutest little Polo (yes we started him in Polo very early) onesie.  We got all of his belongings that he had collected along the way packed up and then we sat and waiting for the Kangaroo Crew to show up.  The hospital required that his first car ride home would be in an ambulance, just in case something happened along the way.  Once the crew showed up, and he had finally finished his last hospital feeding, we loaded him in his car seat.  I remember that he was really small in that seat, and we had to roll up a few blankets and put them around him in the seat so he wouldn't flop around in the extra space. We attached the seat to a gurney, and began to walk out of those NICU doors for the final time.  I remember many of the nurses lining up to tell us goodbye on the way out, and I remember one nurse in particular telling us not to come back.  That was just her way of telling us to take good care of him and make sure he doesn't need to come back to the hospital, like some other kids end up doing after discharge.  We went downstairs and loaded him into the ambulance and we were finally ready to drive him home for the first time. 

Tommy rode in the ambulance and I led the way in the car.  I couldn't believe this was actually happening.  When we drove up in front of our house, we were greeted by a few nurses from the nursing agency we would use.  The first few days, we had a nurse around the clock to help us take care of him.  Then after those first few days, we had a nurse for about 8 hours during the day and 12 hours at night, giving us about 4 hours by ourselves.  That lasted about a week before I was done having someone there during the day.  I didn't want to just let someone else take care of him.  I wanted to be just like every other mom who took care of their newborn.  So I really didn't let the nurse do much to help.  I finally decided it wasn't necessary to have someone there during the day when I was doing all of the work myself.

On August 29, 2005, our baby boy was finally home.  We brought him inside and layed him down in his crib for the first time.  He looked so incredibly small in that crib.  I look back at those pictures now and can't imagine that he was ever that small.  He did amazingly well with the trip and he adjusted to his new surroundings in no time at all.  We were finally home as a family of 3.   And with the exception of a few short stays, we made sure to heed the words of that nurse who told us to not come back.

 

 

 

Loaded in the car seat.

 

All tucked in, ready to go home.

I'm not so sure why it's so bright out here.

Loading up in the Ambulance

Home, but it's entirely too bright.

Thanks for the shade.

All comfy in my new bed.

Catching up

Yes, I know.  It's been a while since I have blogged.  It's summer time.  That's the only excuse I have.  Right now I'm sitting at TCH, which John has a bronchoscope and hearing test under anesthesia.  The bronchoscope was supposed to be a month ago, but when we decided to add a hearing test to it, we postponed so we could do them all at the same time.  Only one time under anesthesia is our motto.  So I have a good 2 hours or so to kill.

I was reading back at the last post about his sleep study results and discovered that there have been some changes since I last wrote.  After we saw the ENT and began capping him during all waking hours, he was doing great.  We continued putting him to sleep at night with his trach open and no oxygen and he slept well.  Then we saw the Pulmonologist.  We found out something about the sleep study that we were not aware of.  While his sleep apnea has greatly improved over time, he apparently had high levels of Carbon Dioxide for a large part of the study.  Of course this is not good.  The body needs to expel most of the Carbon Dioxide, otherwise, it can begin to affect other organs.  She said it isn't any kind of structural problem that is causing the retention, but it's just that his brain is not telling him to take deep enough breaths to get rid of it.  So she wants him back on the ventilator at night so it will help him to take deep enough breaths and expel the gas.  This is obviously not what we wanted to hear.  He had gone 6 months without a ventilator and we thought we were done with it for good.  And here we are going back on it.  What a pain.

The next week, we saw the sleep doctor/neurologist.  Her feeling was that if we take the trach out now, he may do ok.  But we don't know that for sure and it would be a risk.  She feels like if we wait 1 or 2 more years, then his airway will grow and he may be ready to have it removed then.  She asked us to just be patient.  I feel like that is all we have done for the last 7 years, but if he's not ready to be without it, then we want what's best for him.  We discussed the possibility of him using a bipap mask when he sleeps instead of the ventilator.  If he were able to use that, then the trach could come out because he would still be getting support.  However, there is no way in the world he will leave that thing on when he sleeps.  We even met with a nurse to work on getting him used to wearing it.  She gave us some tips to use to work on it at home.  He will let me put it on top of his head, but as soon as I get it to his nose, he is ripping it off.  I just don't see that happening, and honestly, I think we are better off just using the ventilator.  If we went to bipap, we would likely lose our night time nursing, which means I will be up and down all night and wouldn't get much sleep.

Last night, I took John to his new school to meet his new life skills teacher.  I have finally accepted that he has to go to this school.  I was feeling a little better about it, until I went to this orientation last night.  I discovered that his new class will have 12 kids in it to start the year, with 1 teacher and 3 paraprofessionals.  That is more kids than his class had last year with the same amount of adults.  I can't imagine why they moved him from the school he was at to alleviate some of the crowding problems, only to put him in a school where his class size is bigger.  I am going to meet with the nurse, teacher and teacher's aides on Friday to go over John's care with them and make sure everyone is on the same page.  But I get the impression that the teacher is going to be a bit overwhelmed.  I am worried about his health and personal care, of course, but now I'm beginning to worry even more that the progress he made last year will suffer this year.  I will just have to keep praying and trust God that  he will take care of everything.

I wanted to leave you with a picture of him in his extra special PJ's that Texas Children's has kids wear when they go into surgery, but my iPad won't let me.  So much for this Apple is superior garbage.