Friday, November 8, 2013

An Update! About Time Right?

Hello All! Well its been a while since I updated this.  I really wanted to keep up with this and was really feeling where it was going.  However life is so busy and hectic lately.  Nothing really bad is happening, just barely anytime to sit long enough to even think about doing this, until right now of course!

So whats been going on with Lil Bill?  Well lets start with good news first, its been two weeks without a feeding tube!! I still am not fully accepting its gone out of fear it will be back, but either way, this is a huge milestone for him and the longest time without an NG tube since March! Hes been doing very well, his speech therapy (who also works on feeding) helped so much and so quick.  Although I think we needed some of the therapy for ourselves too because we had so much anxiety about feeding him, so just like him we also needed a push.  He's doing great with taking everything by mouth.  He takes his formula and purees.  He is still around 20 pounds.  He was put on a diet recently because he was growing in weight much faster than he was growing in length, so the diet seems to be doing its job.  Heres a picture of him with no tube!! Its so weird (but amazing) to see him without a feeding tube all the time!


He also started at a medical day care a couple weeks ago.  We are still adjusting to that.  Its a great place and I am so glad its so close and he gets all his therapies there now, which is good and bad.  I enjoyed seeing and being a part of his therapies and knowing his therapists but it does cut 3 appointments out of our weekly schedule and I think he gets some of them more than once a week so that's a good thing.  

Lil Bill has been battling a viral infection for a couple weeks.  He gets breathing treatments at home, one twice a day (that will be even after his viral infection is gone) and the other just as needed.  He seems to be doing better.  We saw his pulmonologist yesterday and he explained that any cold will be more dramatic in Lil Bill because of his airway issues (tracheomalacia and laryngomalacia).  Which explains why he went from not coughing at all to coughing uncontrollably within 24 hours.  This is our first flu/rsv season not completely in the hospital so it is a little nerve racking.  I am sure this is the first viral infection of the season, with more to follow (i hope not but I am just being realistic with myself) but we have avoided going impatient so far with it so thats a great sign.  

His pulmonologist also mentioned a trach.  He is not recommending it right now but that would be our next thing to talk about if the air way issues cause more problems and if his carbon dioxide levels remain high.  I am trying not to even think about it yet because its not what he is recommending right now.  After he said that I didn't really say anything in the appointment (and ask Billy that is so unlike me).  I suppose I was a little surprised.  After all, I think the possibility of a trach was behind us.  But we will cross that bridge when we get to it.  He is going to be following us every month during the flu and rsv season.

We also got the results of Lil Bill's second sleep study.  The results showed that they need to raise the settings on his cpap from 4 to 8.  Even at 8 he still has 3 episodes of sleep apnea.  We are really trying to make this CPAP work but its been hell.  Lil Bill hates it and screams the whole night, even when we take it off now.  The doctors keep saying only time will help.  In the meantime I will keep keeping my local Dunkin Donuts open because of lack of sleep!

Lil Bill also had his hearing aids turned up a couple weeks ago.  I actually think its making a difference.  He seems to respond to more noises.  His responses are in his own way, his eyes get bigger, or he flings his head or tenses up.  I feel like I finally have time to focus on his hearing loss and disorder.  So far its been one thing after the other and I have not really had time to process it.  His lasts tests showed that sound waves do make it to the brain, though they are delayed getting there.  In a typical hearing person, sound waves get to the brain in 50 mili seconds, Lil Bill's sound waves get to his brain in 250 mili seconds.  This could be because of his auditory neuropathy disorder or because of his delays in general.  Either way it is what it is.  So we are trying to talk a little slower, in case he is hearing us, we do not want it to overlap! Can't do that especially with my singing of made up songs to him!

I never really explained his hearing disorder on here.  It is a auditory neuropathy spectrum disorder.  Basically, it is like a staticy radio.  Some things get through and some things don't.  There are varying degrees of the disorder and we do not know how mild or severe his is yet.  Its basically an electrical problem with the auditory nerve.  I actually have a simulation of it that I was given by one of his doctors.  Here it is.  It starts with the most profound, than severe and to moderate, mild, and normal.  


I almost cried when I heard that.  So we do not know where he falls.  From my knowledge, the cochlear implants help more than hearing aids with this disorder.  We are still in our hearing aid trial so that will be another bridge we cross when we get there.

Motor skills wise, Billy has started to really enjoy jumping and walking.  He can't hold his head or upper body up, but if you support his trunk and up, he will take steps and jump.  He thinks its funny and he gets such a proud look on his face when he does it.  He is doing better with tummy time, and still making small progress with head control however we are not there yet.

Oh and he does have three teeth now!  :-) AND :-(  my baby is growing up!

I am going to try to update this more.  I am sure I left some things out that have happened within the last month to two months.  But those are the highlights that I remember! 

Thursday, September 12, 2013

The dreaded day we hoped would never come...

I feel silly updating this with the news we received today.  But the intention of making this blog was to keep people updated on Lil Bill.  So updating I will do.

Well today was an informative day.  We went to a new pediatrician.  Our old pediatrician recommended that we see someone else for primary care for Lil Bill, this new doctor does primary care for medically complex kids and kids with special needs.  I was hesitant on making the switch, for various reasons.  I liked our old pediatrician  he was always good to us, he called us personally a couple times.  Everyone from the nurse who answers phones and deals with their faxes, to the doctor, and the nurse who took vitals knew us because of us coming in so much, because of paperwork going back and forth, I felt comfortable.

The other reason I was hesitant was because, well I do not suppose its any parents dream to take their child to primary care at a special needs and medically complex clinic.  I guess a part of me was still in denial, that Lil Bill's issues were not going to be long term.  Well today that denial burst.  I am sure it will come back.  Around my son, their are several layers of denial.

Today we met with this Doctor.  Wonderful man, probably one of the most polite, caring, personable, and experienced Doctors that I have encountered with my son.  He spent two hours with us, talking with me and Billy and interacting with Lil Bill.  He truly listened to us and he was honest with us as well.  It must be so hard for such a nice man to be in his career choice, working with medically complex children and special needs children.  Because to be so nice, and have to tell parents upsetting news about their child must be difficult.

Today we were in that difficult situation.  Let me first start off by saying me and Billy have been being prepared for the day like today, since a couple days before Lil Bill was even born.  And after that day too.  Different doctors on different occasions, they have all been planting seeds in our heads and trying to make the blow that came with this day lighter.  And for that I am grateful because it worked in some sense.

Today the Doctor diagnosed Lil Bill with spastic quadriplegic cerebral palsy.  Up until now we were being told he was too young to diagnosis and we would wait and see.  He disagreed.  He said knowing what Lil Bill's brain scans look like, and knowing what he is showing us now and his whole history he does not think he is too young.  I thought I was handling this conversation pretty well, until he looked at me with concern and said in such a caring voice, 'do you need a tissue?'

Even though we have been prepared for this I cannot help but feel sad. And scared.  Lil Bill has hearing aids, we found out yesterday he is near sighted and he is almost at the point he will need glasses, he has different airway issues, sleep apnea, bpd or chronic lung disease, he has all these issues.  And now this too.  We have been prepared for all this issues, being told they may happen, but its easy to think that, only one will happen, or that we will be the exception.  But we aren't.  We have beaten the odds of survival, given a 25 percent chance to live, but we have not beaten the odds for other issues.  I cannot help but feel guilty every time, cause everything can be traced back to him being born early.

But I remember when he was a couple days old, and they told us to get involved because that might be the only time we had with him.  And I remember hoping so bad that he would pull through, no matter what came with it.  How can I stay feeling sad?  I got what I wanted.  After losing Aiden and everything we went through to have Lil Bill make it to a viable gestation age, and seeing what looked like torture at some points to keep him alive, how can I not be grateful?  We all made it out alive.  I may have a medically complex and developmentally delayed baby boy, but I have a baby boy.  I have a precious, happy, energetic, strong little boy who finds so much comfort in my arms.  What a miracle that is.

So now with this diagnosis, nothing really changes.  We are already physical therapy, occupational therapy, and feeding and speech therapy.  We already do stretches with him multiple times a day, so we are just still waiting and seeing what Lil Bill is going to do.  I found a place in Canada that does an intense therapy with children with CP and other issues, I asked the doctor what he thought about it. He told me not to run off to Canada just yet.  He said Lil Bill might not need it.  What a relief that was.  I have hope, the doctor has hope, we do not need to do something extreme like that.  He said Lil Bill is still so young, he has plenty of time to show us what he can do, learn and develop at his own pace before taking interventions like that.  It was really nice to hear.

I am one to kind of look at the negative side of things, and Billy the positive.  Finally, I feel like I can see the positive like Billy.  I am grateful for my son and hopeful.  He may be able to do more than we believe or think.  And I feel empowered to help him get there.

So spastic quadriplegic CP is when all four limbs have tight muscle tone.  It is a scary name, to me at least, but the outcomes of children vary.  We still do not know what path Lil Bill will go down.  Oh, I almost forgot to ad, they want Lil Bill's weight gain to slow down! They said that in the height/length percentage he is in the 95%.  They are changing his diet.  I thought, what a funny problem to have.  All his life we have celebrated every ounce he has gained! And now they want him to slow down, life is funny!

So the last thing I will say is that I went to therapy a couple times when Lil Bill was in the NICU.  The therapist was talking to me about raising a child with special needs.  She said that the feeling I will get when he learns to feed himself will be the same feeling another parent gets when their child scores a goal in soccer.  I believe that today.  Our accomplishments might end up being different from others, they may not but they very likely might be.  But they will be ours, and they will be beautiful and wonderful.

Thursday, September 5, 2013

A look at the past...

While I am sitting here waiting for the first football game to kick off, thanks weather delay, I remember this time last year.  I remember watching the first game and thinking, if we can just get through this season and lil bill is still alive then we will be ok!  Well little did I know that he would be home in time for the Super Bowl, and here we are the next year.

So it is official, Lil Bill is a one year old! I can not believe it.  His birthday was a beautiful day.  We stopped by the NICU and dropped them off some birthday treats then had a party with family and some friends.  I thought that I would have negative feelings on his birthday.  While it was his day of birth it was also one of the most traumatic days of my life.  But I didn't.  I embraced every ounce of gratitude I felt.  We have come so far.  I have been doing alot of processing everything that has happened since we found out that I was pregnant lately.  Since medically, there is nothing to new with Lil Bill I thought I would update share some of our story of how Lil Bill got here.  Don't worry I won't go TOO far back!

We knew that I was going to be a high risk pregnancy after losing Aiden at 20 weeks.  But we thought we had a plan that would work.  For me the first trimester was not scary.  I know for many people it is, because of the risk of miscarriages.  I knew, having an incompetent cervix my issues would make the 2nd or 3rd trimester the problem.  So lets fast forward to then.

When I was 18 weeks, I finally got the cerclage, with little to no cervix left.  For those who don't know an incompetent cervix means the cervix shortens and softens way before it should in a normal pregnancy.  A normal pregnancy the cervical length is suppose to be about 3-4 cm until the end of pregnancy.  At the time I got the cerclage my cervix was .9mm.  But for a couple weeks it worked, I did not lose any more length and I became hopeful.  But then, at one of my weekly ultrasound appointments it was seen that my cervix was .3mm.  One of my doctors suggested putting a pessary in.  I was willing to do anything to help.  So we did, and for two weeks my cervix was back over 1 cm.  I was so happy, the pessary was working!  And then, I will never forget this day.

I was 22 weeks pregnant and we went in for my appointment.  The doctor came in with a discouraged look on his face.  He told me that it appeared from the ultrasound that I was dilated, and my membranes aka the water sac the baby was in, was bulging through the cerlcage.  He told us we had three options.  We could terminate the pregnancy if we did not want to have a very premature birth that would leave us with a child with disabilities, we could go home and let nature take its course, or I could be admitted into the hospital and stay on bed rest there until the baby came.  We chose option number 3.

Days later, I believe around 22 weeks and 5 days, I was 3 cm dilated.  I was told that they could not try to stop labor until I was 23 weeks and they would not try to save the baby unless he was 23 weeks.  2 days.  2 days.  2 days.  Days that could be wrong due to measurements, but that did not matter.  We had to wait 2 days before any intervention could be taken.  Those were the 2 most stressful days of my life.  I went into labor one day later, and I remember them telling me if it was 16 hours later they would try to stop labor, but there was nothing that they could do at this point.  16 hours! That was way more ridiculous than two days.  I do not blame the doctors or nurses who were telling me this.  I know a patient like me at that time is very stressful for them too.  They have to deal with ethics, morals, rules, and guidelines.  I just prayed for strength to make it through 16 hours.

Luckily, due to a paperwork mess up somewhere,  I was given the steroid shots for the baby's lungs one day before I was suppose to. During these 16 hours we got a chance to speak to the NICU.  Twice.  We got numbers, odds, chances, and statistics.  We were told what to expect if we had him between 23-24 weeks.  The odds were not good.  They said he would have around a 25 percent chance of making it.

FINALLY the time came, I was FINALLY 23 weeks! They would try to prevent labor and they would try to save my son if he came.  I was so relieved to make it this far.  I was started on a drug to slow down labor.  The side affects were horrible.  I felt like I was being burned from the inside out.  I felt like crap but did not feel any serious contractions.  I was on the drug overnight from 8/30-8/31.  I was hoping for good news.  A couple hours later I started feeling contractions.  I was checked again, this time, I was not 3 cm dilated, I was 9 cm dilated.  They said it was time to start pushing.

My water had not broke.  And they did not want it to.  They wanted my son to be born in his water sac to help protect him.  He was 17 weeks early, very tiny, and breech.  We were very fortunate that his water did not break.  Yes, I delivered my son in his water sac, with no pain meds (not by choice may I ad).   After having him, the water sac was given to the NICU team, I do not even know how many of them there were, maybe between 5-10.  It felt like forever they were over there, asking for supplies, talking with themselves.  I think it was only a couple minutes though.  I just wanted to know is he alive, is everything okay, is he dead?  Eventually we heard them yell YES! and clap.  I remember Billy saying well that can't be a bad sign.

Then, the first time I saw my son.  They wheeled him over.  He was in a plastic bag with a tube sticking down his throat.  He looked brownish/redish and was so tiny.  He was 1 pound 7 ounces and 11.25 inches long.  He looked lifeless.  I remember them asking if we wanted to touch his forehead.  Everything in me said no.  I was too scared I would give him germs and make him even sicker.  But I did, I touched his forehead.  I was fearful, I was sad, I was angry, and I had no clue what kind of journey was started that day.  It was the beginning of a beautiful, terrible, amazing, difficult road.  The road that has led me to where I am today.  With a one year old son, who is the strongest and happiest person I know.

Like I said earlier, his birthday is one of the most traumatic days of my life, but is also one of the most beautiful because I witnessed the greatest miracle I have ever know, and it started that day.

Since pictures are worth a thousand words, Heres A Video of Some of our Story

Wednesday, August 28, 2013

LET THERE BE SOUND!

Well besides the usual therapies for Lil Bill things have been pretty calm appointment wise the last two weeks.

This week though we did make it to see the neurologist.  I was nervous going there, the neurologist appointment is one of the more nerve racking ones for me.  But to my surprise not a whole lot happened there.  I mean we already know about the two PVLs, the loss of brain tissue on the left side, and the small brain.  We also know that Lil Bill is delayed with gross and fine motor skills, and that he is tighter on his right side.  While this is concerning to the neurologist, we are in this 'wait and see' period.  Lil Bill is about to be one (yay) though adjusted he is only 8 months.  They typically do not diagnosis until the child is around two.  So the treatment is the same that we have been doing.  Physical therapy and occupational therapy weekly, and speech and feeding therapy will start next week!  It is a little frustrating being in this wait and see period but at the same time it is nice to know there is hope that he will make great progress before getting a diagnosis.

And yesterday we FINALLY got the hearing aids!! I never thought I would be super excited to get hearing aids for my son but I was.  They are unsure that they will help him so we will be following up monthly to track his progress and adjust the settings if needed.  So fair the verdict is inconclusive! Some moments I think that he hears, and others I can scream from behind him and he won't even know.   I have been testing him with every noise I can think to make, if he can hear me I almost feel bad for him because I have been a little loud and crazy :)  But I suppose nothing has changed since that was the case before too.  So that is another wait and see thing that we are in.  Waiting to see if the hearing aids will help or if he will be a candidate for the cochlear implants.

Of course tonight we heard one of his hearing aids clicking.  We couldn't find anything about it in the manual so we will have to call tomorrow.  Technology is a blessing and a frustration all in one.

Tomorrow we will also finally be getting the C PAP machine.  Lil Bill will need to wear it for naps and overnight sleeping.  It is hard trying to ad two different things into our routine in one week, the hearing aids and the CPAP but I know we will adjust.  I will update to see if it helps any within the next couple days.

Also we got the OK from G.I. today to switch his feeds again! I was so happy we are getting back to our 'normal' feeding schedule.  He can now get ng tube fed 6 ounces in 1 hour, 5 times a day.  We can still feed him by mouth during his off times of feeding but they do not want us to subtract what we are feeding him by mouth from his tube feedings yet.  I see this being a problem but I will wait and see before I question them. The goal is to not need the tube anymore and if Lil bill if getting fed that much through his tube I am worried he will not be hungry enough to even try to feed by mouth.  We will see how that plays out!

Saturday, August 10, 2013

And then there is days like today...

Today has been a mentally draining day.  Nothing completely crazy happened.  I feel like sometimes issues with Lil Bill happen so quick and I do not have time to process any of them before the next when pops up.  So I guess you could say today was a processing day.  Emotionally and mentally draining!

A lot happened this past week.  We had physical therapy and occupational therapy like we do every week.  Lil Bill has been really showing some progress.  His therapists have been really pleased with his head control.  He still can not control it completely but his progress is obvious.  He also has finally figured out more about his hands, he enjoys punches toys with them and sometimes grabbing.  It was a good week as far as the therapies go.

We had a follow up meeting with our child development worker, the Brandywine School District, and statewide services for the deaf and hard of hearing. We came up with a new Individualized Family Service Plan (IFSP) for Lil Bill.  They handed us papers about Special Education, which hits me with a blow.  But I try to keep an open mind that everything they are doing is to help Lil Bill reach his full potential, which as parents me and Billy completely support and want so if it is what is going to help him for now, then it is what it is.  So to get the services from the statewide services of the deaf and hard of hearing we have to enroll Lil Bill in the school district.  Not even 1 year old and already getting enrolled in school, what the heck!?

We also saw the pulmonologist this past week.  We discussed Lil Bill's sleep study and his results show severe sleep apnea.  So what does this mean?  It shows that he consistently stops breathing during his sleep, I think the total times an hour were 24.1.  From my understanding for them to intervene with C PAP the total times have to be over 24.  That is just our luck huh, to be over by .1! They are not long periods, and his stats stay up which is great.  So we are trading in our oxygen concentrator and oxygen tanks for a CPAP machine! I guess that's good news and bad news, we can get rid of some of our equipment while adding something new.  Which seems to be the way Lil Bill likes to do things.  As soon as he gets through needing some kind of support another one pops up that he needs, I used to joke that we would be OK unless it all started happening at once.  Thankfully it has not all started happening at once yet.

So we do not know if he will out grow this or not.  Both ENT and his pulmonologist both said that the only other way to help him right now would be putting him on a trach.  But they also said he is not at the point that they would even consider it at all, so that is good news.  So hopefully the C PAP will be coming this week and we have to get another sleep study in a month or so to make sure the C PAP is doing its job.

We saw a new G.I. doctor as well this week.  We go to them for Lil Bill's re flux, constipation, and they are now making decisions with his feeding tube.  We were really hoping to get off continuous feeds.  The 18 hour continuous feeds are very difficult for everyone involved.  I feel like since they started I have lived my life in 18 hour increments and 6 hour increments.  That is just how my days get planned out in my mind.  Well unfortunately we did not get off that schedule, but fortunately we did get to pull the NJ tube out and put in in a NG tube, which really is a huge step! So in a couple days if Lil Bill is tolerating his feeds we can switch it to two 7 hour feeds, then keep weaning til we get to bolus feeds (or every three hours).  It has been three days now since we started using the NG tube again and he is doing great with it! We can still feed him the purees and bottles by mouth when he is awake and alert and not being fed through the tube.  He is still loving them!

We also got the O.K. to let him taste some cake on his birthday! I was really happy.  It was actually one of the first things I thought about when they initially put him on the feeding tube.  As silly as it may sound.  I just feel as though the normalcy of baby hood as been robbed from us and Lil Bill, and I have been to so many birthdays for 1 year olds with cake all over their faces and I was sad that that may be something else we may miss out on.  But NOPE! He can taste some.  Now I will have to really get to planning his first birthday! It has really crept up on us.  We always have so much stuff going on that I kind of even haven't gotten around to planning much of his birthday, that's so bad huh?  But the next two weeks as of right now we only have two appointments each week which will give me plenty of time to plan! 8/31 will be here before I know it.

So today Lil Bill pulled out his NG tube, I had to retape it twice, I can not wait til it is completely gone!  He also kinda scared me today. He has laryngomalacia and tracheomalacia, they are airway issues, so sometimes when he cries he stops breathing, his larynx basically collapses on his airway.  It usually only lasts a couple seconds.  Today it happened twice, and it lasted almost 30 seconds each time.  He started crying when I took the bottle away from him and it is like he just froze while crying and stopped breathing and started turning purple.  Wow it just hit me that I started this post saying nothing too crazy happened today.  See what I mean about losing the normalcy of baby hood! When my baby turns purple it isn't a big deal! Its just all about our 'new normal.'  Glad I am able to share some of our 'new normal' life with you!

Our boy is a little trooper, and so are we, and so are our families that help us out so much! People often ask me how I get by.  I do not know the answer to that question, but I do know without both mine and Billy's family helping us out and supporting us, as well as some close friends, we wouldn't be getting by as gracefully! (wait are yoga pants considered graceful cause thats all I wear? ;))

Sunday, August 4, 2013

Busy bee, Busy Bill

We are unwinding from a fun weekend with friends and family.  We plan on relaxing rest of the night tonight, well I do I hope Lil Bill has the same plans.  I feel like I have to mentally prepare myself for the busy week we are going to have.  We have multiple appointments every week but this week we have more than our usual amount.

Every Monday we have physical therapy and every Tuesday we have occupational therapy, so every week they are given appointments.  The past week Lil Bill has been doing so well with tummy time, I took lots of pictures to show them.  Both his therapists are a great support for us.  Here is one of the pictures, he is getting so much better at tummy time and he loves it, he gets excited and laughs during it.



This week also on Tuesday we have a meeting with our child development case worker, statewide services for the deaf and hard of hearing, and the school district.  Our child development case worker is through the state's early intervention program.  Every state has one by law, to make sure that any child that qualifies for services can receive what they need.  We receive our physical therapy through them, our occupational therapy through them, and hopefully soon will be receiving speech and feeding therapy through them.  Their program as well as A.I. and CHOP has waiting lists for both feeding and speech.  It is frustrating that Lil Bill can't get the services he needs but also sad that so many children need them.  We also see our neurologist through the Child Development program.  So they really do a lot for children with delays, I am very grateful for them.

After hearing about Lil Bill's hearing loss and hearing disorder, auditory neuropathy spectrum disorder (I will get around to explaining what this means later I promise), our case worker wanted to get us acquainted with additional services that will help Lil Bill.  We all met at A.I. hospital a couple weeks ago when we were impatient but we are meeting again to come up with a more updated Individualized Family Service Plan.

Wednesday we are going to the Pulmonologist   I am sure we will know after that appointment what we are going to do about Lil Bill's sleep apnea.  Since his pulmonologist is the one who put him on the NJ tube I am hoping he will give us guidance on when to move it back to an NG tube, and if not we see a new GI doctor Thursday.  So I am sure by the end of the week at least we will know what is going to happen with the tube.  The 18 hour continuous feeds are very hard on all of us, Lil Bill included so I am hoping we can change that schedule.  Plus now that he is able to eat by mouth, its hard to find times to try because of his feeding schedule.  Lately we have been doing two bottles and one puree during his 6 hour feeding break.  He has been doing so well!! Especially with the purees.

I tried making a home made avocado puree for him, he was not a fan at all.  So we tried an apple puree, which he loved, and a prune puree which to my surprised he loved so much! He got so upset when we were done eating, as you can see here.


I will be sure to update what happens with all these appointments!  OH BY THE WAY, we are getting hearing aids August 27th! Just in time for Lil Bill's first birthday on August 31st! What better gift for a birthday than possibly being able to hear more??

Wednesday, July 31, 2013

Rolling with the Punches

Well today was a busy day.  We had two appointments at the hospital today, a swallow study and an ENT appointment.

Lil Bill has had issues with aspiration in the past.  They were first discovered during a FEES study while impatient at CHOP.  We went home from Chop with a NG tube for feeding and just like that routine tube feedings became apart of our daily lives.  Another part of our 'new normal'.  A repeat FEES study a month later showed no aspiration, so we were able to start reintroducing the bottle.  We were making progress, we made it up to an ounce by bottle for every feed and introduced baby oatmeal.

This scheduled changed two weeks ago.  Lil Bill was admitted to A.I. hospital for pneumonia and two viral infections.  They do not know what caused the pneumonia, aspiration or the viral infections, both are likely possibilities.  So we were sent home from A.I with an NJ tube on 18 hour continuous feeds.

What is a NJ tube?  Glad you asked.  An NJ tube goes through the nose and down the throat, just like a NG tube does.  But the NG tube goes into the stomach while the NJ tube goes through the stomach and into the jejunal.  They made this our new feeding plan until the swallow study and they we would come up with a new plan.  They did this because it is much less likely to re flux from the jejunal as opposed to the stomach.  And if Lil Bill is aspirating then he would aspirate on his re flux, making him sicker.  So we got this new feeding plan and went on vacation to upstate NY to see family.  What better way to get used to something then travel with it right?

Anyhow, the swallow study today was actually pretty cool to watch.  They took an XRAY video of him drinking a bottle and eating apple sauce.  To my surprise the study showed no aspiration! I was literally shocked and still kind of am because I expected the results to be different.  Way to go little man! Now the frustrating parts comes from trying to find a doctor who will manage our tube feedings.  Now since he can eat safely, its a very slow process getting to the point of no tube, we need someone to help us decide when we can pull the NJ tube and go to NG tube.  We were referred to three different doctors today to help with that.  Getting a hold of them will be my project for the rest of the week.

We then went to our ENT appointment.  We were there because of the results of the sleep study Lil Bill had.  The sleep study showed Lil Bill stops breathing for 10 seconds at a time at night, 24 times an hour.  They consider these brief moments but are concerned that he is not getting enough rest to heal and grow.  Our pulmonary doctor wanted ENT to take a look to see if it was worth taking out his tonsils to help the problem.  ENT felt that it would not be worth doing that because Lil Bill's tonsils are small.  Anther option could be to stitch open Lil Bill's vocal cord.

Lil Bill has left vocal cord paralysis from the PDA ligation surgery he got when he was 2 weeks old.  It was a risk of doing the surgery but without the surgery he probably would not of survived so the benefits definitely outweighed the risks there.  Because his vocal cord is paralyzed he has trouble swallowing, hence all the feeding tube talk.  So if ENT stitched open the other vocal cord it will most likely cause even more trouble for swallowing for Lil Bill.  The doctor, Billy, and I all agreed that we did not think it was worth it.

So they left us with one likely solution.  It hasn't been officially confirmed but Lil Bill will most likely be put on C PAP overnights while he is sleeping.  I asked the doctor if he will grow out of this.  I feel like by now I should know better then to ask those questions.  The answer is always 'I don't know, could get better, could get worse.'  Thats the most frustrating part about all this medical stuff, there are no definite answers or outcomes to offer, ever.

We also found out that Lil Bill's hearing aids have arrived, but for some reason they are not able to schedule us for a fitting for them.  We made a couple calls about this today with no results, so this too will be another project for the rest of the week.

Monday, July 29, 2013

Around 10 months ago it was suggested to me by a medical professional on my son's care team to consider making a blog.  Initially, I did not give the idea one thought.  What is the point of that? And it would be short lived because of course my son would have little to no issues in a short matter of time!  

Well months later, after telling the same stories over and over again, and after being discharged from a 5 month NICU stay for my son and him having way more issues than I had hoped, I understand why I was told I should consider starting a blog.

I truly do not know where to start.  For an 11 month old baby he has so much history.  His medical file is about 20 times bigger than me,  maybe even more.  His file continues to grow as does he (weight gain is thankfully one issue we have not had a problem with yet).  I suppose since all of his medical and developmental issues are ongoing there will be a time in the future to blog about them, for now I will focus on what is happening right now and today.

While I was making a fabulous lunch if I do say so myself (Jalapeno Popper Grilled Cheese) I received a call from AI Hospital.  I figured it was about my son's hearing aides we are waiting on (see future blog post) since I had called them earlier and left a message to see when they would be in.  I gave the phone to Billy (Big Bill not Lil Bill) so I could finishing cooking.  I was hoping that they would tell us just to stop by Wednesday since we have a swallow study scheduled for that day (see another future blog post).  Well minutes go by and I hear Billy talking to someone on the other line about Lil Bill's laryngomalacia.  I was confused as to what this had to do with the hearing aides.  I looked over at Billy and realized, we were getting the results of Lil Bill's sleep study.

Lil Bill came home from the hospital on oxygen and has been off since March.  We had our first sleep study in the beginning of July.  I was hoping that we would hear the results were great and they would finally let us get the oxygen tanks, the concentrator, the pulse ox, probes, and cannulas out of the house.  Well that is not exactly how is played out.  We were told that apparently Lil Bill stops breathing for about 10 seconds at a time, 24 times an hour.  I am slightly concerned but honestly I am not that disturbed by it.  Compared to everything else he has gone through and still goes through this seems so minuet.  Lil Bill's pulmonary doctor doesn't seem too concerned either, he gave Billy a couple different possible solutions (two including surgery).  So while we did not hear back from our audiologist about the hearing aides to get see if we could pick them up Wednesday we did get a second appointment Wednesday with ENT to help us get to one of the possible solutions.