Category Archives: Apert Syndrome

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“De-ported”

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It’s been awhile since I’ve posted.  Last week I was “de-ported”, as the radiology team likes to say.  In other words, I had my chest port removed.  I had a CT scan a couple weeks ago and it showed no evidence of disease, YAY!  I asked my Oncologist if I could have my port removed if things looked good.

It has been three months since I had my last chemotherapy treatment.  My body still aches, but I am feeling stronger each day and my hair is growing back.  Before you know it, I’ll have enough hair to comb and style!  My eyebrows and eyelashes are coming back in full force.

  
This year we seem to frequent Hospitals as much as others go to the grocery store.  So, we are finishing our year off with a Hand & Palate surgery for Isaac.  Isaac will have his palate repaired, which will improve his swallowing and speech.  He will also have his first syndactyly release to give him index fingers on each hand.  

We are not exactly looking forward to the recovery for this surgery.  Very much hoping that the time goes by quickly.  As much as we love his hands how they are, we are excited to see his development as he goes from a mitten to separate fingers.

We had Family in town for Christmas!!  I will post more on that, but wanted to share a couple pictures.

   
    
 

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A Month of Chemo and 13 Days Post Surgery

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I started chemo a month ago.  I have made it through a third of my treatments, 2 rounds, 4 treatments.  And let me tell you it is not anything I could of imagined.   This past week has been rough, I’ve had a lot of nausea, body aches, and I miss my family being under one roof.  Some days I can’t help but think, “why?  Why now?  Why me?  Why our family?”.  Then I cry for a minute or two, if it’s any longer I get a headache and I don’t want to get dehydrated so I have to stop.  What I do know is that We will come out stronger, and with more love for each other and this life.   I am especially grateful for my Mom, my Brother and his wife, who have been able to help out so much, especially with the kids this past week.

Today has been a better day and I am hoping it will continue throughout the week.  I am so glad I get next week off.  One of my concerns this week was that my blood counts would be too low.  The only thing in my chemistry that was low today was my potassium, which means they gave me potassium through my IV port before administering chemo.  I was able to sleep again for a little bit, so that was nice to help pass some time.  While I was in treatment a lady, who came in for chemo could not receive it today because her counts were too low.  I wanted so bad to go give her a hug, you could just see how disappointed she was.  I have to remember, it happens and that could be me one of these days.

Now on to this sweet little guy  

He is still in the hospital.  He is fighting an infection and continues to spike fevers, he also tested positive for the rhino virus.  He had a Broviac cathether placed last week.  This is a central venous catheter that accesses the large vein that enters the heart.  They are using this to administer his medications.  Zane is being trained on the care and use of the line as he will have it when he does finally come home.  Zane sent me these pictures of him after the procedure was done.

   
 

He is still happy and plays with his toys.  Of course, he does pay attention to the door when nurses and Doctors come in.  He knows that is the way out!  Isaac is a fighter and he’ll get there, it’s just taking more time.

 

Thank you for all the sweet cheer cards, Zane has hung them all up in Isaac’s room!  Thanks to our amazing friend for taking the time to spend with Isaac at the hospital so Zane could come home and get some rest.  Zane knows he doesn’t have to be there ALL the time, but he knows what works best for this guy!

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Surgery Recovery

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I was hoping that yesterday we would be bringing Isaac home from this surgery, but his recovery from surgery has been a bit rough on him this time.  His JP drain was taken out Saturday morning and he did move from the PICU to the general floor early Saturday evening.  When he got to the general floor he was running a fever, so they took cultures to be tested to see if he might be getting an infection.  His incision was bleeding more then the Doctors liked, so they were going to keep an eye on it overnight.  Isaac had a bit of a rough Saturday night, waking up moaning and crying whenever he was touched.  He is not keeping all his feeds down.  All his IV’s have been taken out, because he moves around too much.  The Doctor put more stitches in Isaac’s incision on Sunday to help with the bleeding.  Isaac was running a fever once again last night.  Nothing from the cultures, so a chest X-ray was taken not too long ago.  The Doctor told Zane that Isaac needs to be fever free for 24 hours before they even think about sending him home.  He was running a fever earlier today, but it is going down and he has been up and playing.

I did take the kids to the hospital on Saturday so they could see him.

The vending machine sure got their attention

Zane has been spending his time at the hospital with Isaac.  It breaks my heart to hear of his struggles and not be there with him, but the hospital is not exactly the place I need to be hanging out at.  Zane has been great to send me pictures of him, so here are a few of them.

This picture is from Sunday


Sleeping in Daddy’s arms!

Sitting up and playing this afternoon!

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A Year Ago

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We brought Isaac home from the NICU after he was born exactly a year ago.  I have been meaning to post Isaac’s time in the NICU for the last several months.  I figured now is as good as time as any.  Isaac was in the NICU (Neonatal Intensive Care Unit) for 15 days after he was born.  We weren’t quite sure how long he would have to be there.  Honestly, I was expecting it to be longer then 15 days.  Those days in the NICU were long, especially not knowing exactly when he could go home.  Isaac showed great improvement each day and his nurses that he had were awesome.  Isaac is definitely a fighter!!  This is a picture I took of him when he was a month old!

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The rest of this post is pictures of Isaac’s time in the NICU.  Looking back at these pictures makes me miss those early weeks!  So far each stage of life has it’s ups and downs, but there is just something about those first few weeks that is so special.

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This picture shows how tiny this boy was. That is a two ounce bottle.

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Isaac’s nurses loved styling his hair after his baths.

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0438 Emmett loves his brother. He loves to be close to him, sometimes a little too much.

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June 29, 2014 Isaac was discharged from NICU!!

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Two of his amazing nurses!

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Home sweet home.

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Surgery Update

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Isaac is done with surgery.  The Doctors said everything went well.  They brought his brow bone forward about 1.5 cm..  He did end up needing quite a bit of fluids and his blood pressure dropped a few times during surgery.  The Anesthesiologist kept his breathing tube in, to help him clear out any fluid that may have built up.  So, he will be spending the night in the PICU.

Here are a few pictures Prior to surgery that I forgot to put on the previous post.

Parents waiting to take Isaac to the OR. Isaac looks like he’s reading his surgery passport.

  
  

Here he is in the PICU resting.  If everything goes well tonight the breathing tube will be removed tomorrow and he should move up to the general floor.

The bulb you see next to his head is a drain that will help with his swelling.

  

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Cranial Surgery #2

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We are at Children’s Hospital today for Isaac’s surgery.  He is having his posterior distractors removed and a frontal/orbital advancement to correct his bilateral coronal craniostynosis.  Whew! So, what exactly does that mean?  Well, they will first remove the hardware in his head that was placed to do his posterior distraction.  They will then cut and remove his frontal bone to reshape it and create a brow bone for eye protection.  They will adjust his eyes a little if possible.  Finally, they will hold the work together with hardware that is absorbable.  It may take a year to eighteen months for his body to fully absorb them.

This is kind of bittersweet, as Isaac’s look will change with this surgery.  I took pictures of him yesterday, to have before pictures!  This boy is the highlight of our day, he is so content to play on the floor and roll around.  He smiles and chuckles at nothing in particular (he must find his thoughts comical), he is quite ticklish in his legs, and he loves to laugh for Zane.  Isaac is Amazing!!

Isaac was supposed to go back for surgery at 11:30, but because of delays he did not go back to the OR until after 1:30.  Since Isaac is 12 months we were able to carry him back to the OR and lay him on the operating table.  We had to give him our goodbyes and kisses before they put him under, but we were excited that we were able to take him back.  I expected it to be harder to leave him, but he didn’t fuss or put up a stink.  It’s like he was saying, “go, I’ve got this and I’ll be taken care of.”

We received a call from the nurse around 4pm to let us know that it took a bit longer to get all his lines and prep work done prior to the actual operation.  So, surgery started about 3:30.  They had scheduled his surgery for 6 hours, so we may be waiting a while.

Here are a few of the pictures I took yesterday!

   
        

Clearly he was over his photo shoot

 

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Three Weeks Post Op

It has been three weeks since Isaac’s surgery and he is doing awesome!  We have been going to see his surgeon weekly and gotten X-Rays each time.  We will keep turning his distractors for another week and then the arms will be taken off.  The hardware will stay in until they do his next surgery which is scheduled for June 25th.  He did get sick this past week, but we have been staying on top of it at home.

Here is a comparison of X-Rays.  From left to right; the day after distractors were placed, 11th day of turning, and 18th day of turning.

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And here is a comparison of pictures that I have taken.

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Isaac doesn’t flinch when we do the turning, however, he cried two different times around the 9th and 10th day, but hasn’t since.  We spoke to his surgeon about it and she said that there were no concerns, especially since it was only a couple times.  He touched them for the first time the other day.

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Isaac sees an Occupational Therapist each week in our home.  He has been doing great and improving each week.  He has been rolling over for several weeks now and he is sitting up on his own.

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Just a quick update on Isaac

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After Isaacs sleep study we had a follow up visit with his ENT Doctor, he explained to us that the drops in Isaac’s oxygen levels as he slept were not good. Actually, they were very concerning. So, he told us that we had two options. The first option was to wait another three months and do another sleep study or our second option would be to go ahead with a Tracheostomy. Oh boy, my heart sank and all I could think was well lets wait and do the sleep study in three months. The Doctor explained to us that his sleep study would most likely not improve as the bones in his mid face grow much slower then the rest of the bones in his face. The most important thing is for Isaac to have a good airway and if that means he needs a trach then that’s what we will do.

So, Isaac will be going in on Dec. 3 for his first surgery. He will most likely be at the hospital for 7 to 10 days following his surgery.

Here is a video of Isaac laughing. He makes you work for a laugh, so this was great to get on video. We sure do love this sweet boy!

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