Surgery Day

Surgery Day
November 3, 2012

Everything went perfect!  We got there early and Ryan gave Jordan a blessing.  He was bright eyed and looking good.  It was pretty cute, he watched closely as the nurses attached and detached things and watched intently as the bed lid lowered.  I hadn't seen him that bright eyed where he noticed so much before.

The surgery took almost 2 hours from start to finish.  The Ears Nose and Throat Doctor met us back up in his room and shared with us the following:  During the initial part when they sent a scope down through his trachea and down to his lungs they noticed that Jordan's vocal chords are working really well now but also noticed that half of his tongue is paralyzed.  That is part of why he cannot swallow food or his secretions.  So, the hope is that eventually, the tongue and other swallowing muscles will start working like the vocal chords dd.  There is no guarantee so all we can do is wait and see.  I don't know that I can explain it correctly but between the issue with the tongue, the pooling of his secretions, vocal chords protecting themselves, and the way babies breath all work against him band cause him to stop breathing for a moment.  So, getting the GI tube and the tracheotomy will help him breath clearer and not have to worry about eating food through his mouth allowing him time to hopefully let his body repair itself.  This answer and the procedure feel like a big step forward.  It is nice to have an answer that tells us why something is happening.  If his body does not repair itself, the doctor believes he may still be able to swallow using the half of his tongue that is working.  This of course will also make it hard for speech.  Either way I am sure we will have some speech therapy.  

We are so hopeful.  If all of this is truly the case as to the cause of Jordan's desats then he should be prepared to go home within 3 weeks.  He should be slowly taken off the ventilator this weekend and breathing on his own through his trach by the first of the week.  Then the training for Ryan and me will begin.  

I can't even begin to explain and tell you exciting and nice it is to see Jordan without tubes on his face.  Once the ventilator is taken off his trachea tube we will be down to the tracheotomy, heart monitor, and GI Tube--and 2 of the three can be covered by clothes.  He will look so good!

After spending several hours with Jordan post surgery to make sure he was okay, the doctor encouraged us go home and be with our other kids since Jordan would be highly sedated.  Thanks to some friends, my kids were taken care of, dinner brought in, and tickets donated to Time Out For Women in Portland for my Mom and I.  This turned out to be a nice break and extremely uplifting.  Thank you!  Since the family was taken care of, Ryan was even able to take Brooklyn out on a Daddy-daughter date, which he hasn't been able to do for months.  Overall, it was a good day.

Here is just another post operation picture with the tracheotomy tube connected to the ventilator:

The Big Move

The Big Move
November 2, 2012

Yesterday was the big day for Jordan; he was transferred from St. Vincent's Hospital to Legacy Emmanuel Hospital, where he will be having his tracheotomy surgery.  Everything went smoothly during the transfer and the equipment they used to transfer him in was incredible, with self-contained oxygen, suctioning equipment etc (see pictures below).  He even had a 5-point seat-belt.

When we arrived at Emmanual's new new Children's Hospital Unit, I was impressed.  Everything is brand new.  Jordan has his own private room, and there are drinks for parents, vouchers for food, a place to sleep, and a closet for storage.  However, even with all their bells and whistles, I will miss the homier feel at St. Vincent's.  I like how the nurses there were all nearby and I never had to call anyone over to help Jordan, which I have had to do several times at Emmanual.

The nurses yesterday were very kind and humored me by putting on Jordan's Halloween pajamas and his pumpkin hat.  We did a little photo shoot and I am sure once I left it came right off.  Lets just say it was not conducive to all of his tubes and wires.  But it sure looked cute!!!

Today was also a decent day.  We had an hour with several desats in a row.  While every one of these is at least a little scary, they are also a good reminder for me that this surgery is necessary for him to improve.

In preparation for surgery, we met with some of the doctors that are involved in the surgery, signed all the paperwork and are ready to go.  The surgery is set for 7:30 in the morning. We are confident all will go well.

Here are a couple of photo's.  I have more of the ambulance stuff but am still having technical difficulties:

                                     

                                                    HAPPY HALLOWEEN

***I have some great pictures but am having technical difficulties.  I will post them tomorrow.

Gearing Up For The Big Day

Gearing Up For The Big Day!
October 31, 2012

Today was an emotionally rough day as we bathed Jordan, cleared up his things and prepare for his transfer tomorrow morning to Emanuel Hospital.  Tomorrow he will be transferred by ambulance and then we get him settled, visit with doctors on Thursday and surgery is planned for 7:30 a.m. on Friday.  Jordan's desats have been up the last few days, so we really feel this surgery is needed and are at peace with it but it doesn't take away the pain and fear of making the decision for your child to have a tracheotomy in his tiny little neck.  This has been such an emotional roller coaster ride that doesn't want to end. . . . yet.  

I must send out a big THANK YOU to our St. Vincent nurses and doctors.  We have appreciated all those who so lovingly took care of our little boy.  It was hard to say good bye to all those wonderful people who have made a difference in our lives.  You can tell when someone loves what they do and love those who they serve.  We love you and appreciate you so much!!!

Thank you as well for all the prayers coming our way!!! 

Pictures of the day:  

                                 My Bath; check out those feet and legs, gotta love em!

                                                    My Nurse Rosi

                    Jordan without all his tubes and monitors, we took them off for his bath!
                   It had to feel so good to him! I sure loved seeing him without all his gear!

A Beautiful Day

A Beautiful Day
October 28, 2012

Ryan and I have been overwhelmed at the love and concern that has been shown to us, our family, and little Jordan.  We have received many emails, texts, notes etc. telling us of how we are in people's prayers.  We have had several meals brought into our home, treats dropped off, flowers, gifts, visits, food dropped off at the hospital etc. We cannot thank all of you enough.  We are so grateful for all the wonderful people in our lives.  We could not ask for better friends.  We feel so uplifted in our trial and know we cannot fail with the support group we have.  We feel uplifted by all the prayers and know that they are being heard.  We have seen many small miracles and blessings.

Jordan the last 2 days has done fairly well.  He is not improving, but is also not getting any worse.  He continues to struggle clearing his secretions and Desating.  Because he is not improving it looks like we are shooting for Friday to have his tracheotomy done.  The doctors and nurses all believe this will be helpful to Jordan and will help him move forward.  

Today Brooklyn and Tyler came to visit Jordan as well.  They both are so cute with him. They both colored him pictures and wrote him notes to hang up by his bed.  We had an enjoyable day spending time with Jordan.  It is always so hard to leave him there each night.  Even though we know he could not survive at home in his current condition, we long to have him come home with us.   

The NICU is such a miraculous place.  It has such a sweet spirit that resides there.  So many little babies that are fighting for life.  The little boy next to us was born at 26 weeks and this week he finally made it to 3 pounds.  He is so tiny.  Jordan looks so huge next to him.  It is amazing that technology is so advance that we are able to help these little spirits have a chance at life.  

It is challenging to have a baby that struggles to survive.  It is hard as a parent when you feel helpless and are not able to make things all better for him.  Through these challenges however you feel the Lord's hand.  You know that He is the only one who can truly make things all better.  I have never felt closer to my Father in Heaven than I do now.  He has put our hearts at peace.  Each night as  I leave my little boy in the hospital, I ask for the Lord to hold my Jordan and comfort him because I can't.  There are certainly no better hands to hold Him.

Pictures of the Day:

Posted 28th October 2012 by Gabrielle

  

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Peaceful Days

Peaceful Days
October 26, 2012

The last 2 days have been fairly peaceful.  Jordan has had his usual DeSat episodes but not quite as many.  The nurses have been working with Ryan and I teaching us how to suction him.  I can handle suctioning him through his nose and with a tube called a "little sucker."  It is less invasive. The one that kills me is using a small catheter (tubing)  and feeding it over his tongue down the back of his throat till he gags and suction his secretions that pool there.  Each time I have done it makes me gag with him.  Hopefully soon it won't bother me as much. 

Brooklyn came and visited and helped out with Jordan last night.  We also got to bathe him as well.    It was so good for her to spend some time with him and I.  She is such a little mother and is so nurturing and sweet with Jordan.  He stared and her and held her hand tightly.  It was sweet.

Tonight we took our Infant CPR class.  We had Michael join in as well.  The nurse spent some extra time with us afterwards and discussed how Jordan would be a little different in his needs.  She also took time to answer questions and talk about the tracheotomy.   We hadn't told Michael about it yet, but it was perfect for the nurse to be there to answer questions and take the scariness of it away.  Michael took it in stride and was not shocked, mortified etc. about it.  Kids can handle things better than you give them credit for.  Amazing!

So, we decided to watch him for the next week.  If he improves we will keep pushing off the tracheotomy surgery.  If he does not and remains the same we will have the surgery the end of next week.  

We hope the weekend continues to go as well.  Here's the pictures from yesterday:

 

Decisions

Decisions
October 25, 2012

Jordan had a pretty good day today.  He was bright eyed and interactive.  He only had a few DeSats but without the decrease in his heart rate.  He also had all the leads taken off of his head from the EEG and we get the results from that test tomorrow.

Today we met with the main Neonatologist and the ENT (Ear, Nose and Throat) doctor to discuss having a tracheotomy for Jordan to allow him to breathe easier since he has so many secretions.  They insert the tube just below the vocal chords.  From our discussion, it sounds like the best choice.  This way Jordan's 2 main issues are covered.  He has the GI tube to allow him to get the nutrition he needs and the Tracheotomy that will let him breathe without having so much obstruction.  This will give him the time he needs to hopefully let his body heal itself.   He has had miracles/progress with his eye being able to close, his right vocal cord starting to work, and starting to swallow some of his secretions.

I must say it was a pretty emotional day trying to get used to the idea of having a tracheotomy done on your newborn child.  I had a hard enough time getting used to the G Tube in his stomach.  But after listening to the doctors and learning more about it, my heart is at peace.  It allows the child to breathe without hurting his future ability to speak, eat, and develop.  It aids him in his breathing as long as he needs it. Then when he is done needing it, it is completely reversible with almost no scar.

The medical world is amazing!  Here is a child who has nerves that did not finish developing in the womb.  In earlier years he would have died.  Now he is given a fighting chance of survival.  I can't help but see the Lord's hand in all of this.  There have been so many little miracles that I know are a result of all the prayers that are being said on Jordan's behalf.  You can feel the strength of his little spirit and know that he is meant to be here no matter the length of his stay.  I am so grateful for the knowledge and the advancement of the medical world.  I have a whole new appreciation seeing it in practice and at work in behalf of someone you care about and love.

Once we give the ENT our consent, the tracheotomy will more than likely happen next week.  We will be transferred to Emanuel Hospital where the surgery will take place and live in their NICU for the remainder of Jordan's stay.  After the surgery he will be on a ventilator for 3 days and will be heavily sedated so he won't disrupt his tubes by his constant moving.  No one will be allowed to hold him for 5 to 7 days.   He then will be there at least another 7 days.  Then, as long as he is not DeSat-ing, he will have a chance to come home.

Another Rough Day for Jordan

Another Rough Day for Jordan
October 24, 2012

Today was a rough day for Jordan.  When I got there today, Jordan was still struggling with his DeSats and when that would happen his heart rate would dip quite a bit.  The doctor has no idea why all of a sudden his heart rate slows way down when he DeSats.   It is scary because he goes pale and the nurse snaps him up, increases his oxygen, and gets him back to breathing.

They have also found fluid around his kidney's.  I don't remember what the technical term is for this, but it is something where the bladder re fluxes back into the kidney's.  However they can't send him down to be tested for this in his current condition.  They are giving him an antibiotic once a day in hopes that it won't turn into a urinary tract infection and can deal with this later.

So, the doctor ordered Jordan to have an EEG or electroencephalogram test.  This is to check for possible seizures. It measures the electrical activity of the neurons in the brain.  It can tell you if there is abnormal electrical activity in the brain.    It is just one more avenue to test and hopefully rule out or give us answers.  They glue wires in different areas of the head.  I talked to him and he held on to my fingers while the technician glued each one on.  She wrapped his head in gauze and tape.  I was so glad she did.  He doesn't look near as scary and he won't be trying to pull any of them off.  This test lasts for 24 hours and he is videoed during the whole process.  He has handled it pretty well.

Jordan struggled with sleeping all day.  Every time he would start to fall into a deeper sleep he would DeSat and his heart rate would dip.  He could not get a decent nap.  Finally I was able to get him in a good position and he slept for 3 and a half hours.  I did everything I could to not move even though parts of me were aching or falling asleep.  The poor child finally got a good rest.  YAY!

So, I feel like I listed all the struggles of the day only because they did out number the good today.  However, his success of the day was that he did not have to be suctioned as much.  He is starting to handle his secretions better.  He is still swallowing here and there as well.  It would be a great hurdle if we continue to see him handle his secretions better and better.

Ryan and I have decided we feel like we are in the TV show "House."  Our child is suffering from something no one can quite put their finger on and figure out.  We have brilliant doctors and nurses who are trying to figure out what could possibly be going on with his little body waiting for the break where something manifests and they are able to put all the pieces together.   We hope that happens sooner than later and that we can be that success story.

We love this little boy so much and admire his perseverance and strength.  Here is his photo of the day:

To me it looks like a football helmet with his nasal canula around his nose.  He also has football PJ's on.  It just looks like we started Halloween a little early:)

***When I got home tonight there were cookies and a loaf of bread on my door step.  Thank you to whomever left those for us!