~The Next Stage~

January 12, 2004

Well hello to all, Mikayla decided that she wanted to come into the hospital a little sooner than today.  On Friday the 9th, she pulled one of her crying fits that made her turn blue and breathe with difficulty, so once again I had to call 911.  We went up to UMASS with her and they called the critical care team in from Boston to come get her.  We have been at Children's since.  She was a little dehydrated when they brought her here and her oxygen stats were in the low 60's.  So Dr. Marx felt it would be best if we just stay here until surgery.  It is now day three in the hospital and we are extremely exhausted.  We still have about another 2 weeks to go.  She was fine until today.   She was taken off formula at 5:00 a.m. in order to have her echocardiogram.  Well she was starving and didn't like that too much.  So they did not get a good picture of the heart and will try again tomorrow along with the heart cath.  We are waiting to hear about what time that will be.  Also they had to draw blood and stick another I.V. line in,for the one she had fell out.  Well that made her sick to her stomach and now she is sleeping.  Her energy is gone.  Can't wait till things can go back to normal and we are all home.  I will continue to update again tomorrow after her procedure.  God Bless.

Tuesday, January 13th

They took Mikayla off to the cath lab around 11:00 a.m.  They told us it would only be a few hours.  Well of course Mikayla has to be a fighter and they had a hard time sedating her.  They started with versed, then morphine and benedryl.  Still not falling asleep they decided to try something they don't normally use or like to give....ketamine.  Very powerful and off to lala land she went.  They found alot of collaterals (vessels) that needed attention.  These are vessels that attach the aorta to the pulmonary arteries and they supply more blood flow to the lungs than needed.  It makes the heart work in overload, this is why she has been more cyanotic (blue) lately.  So what they did was put in platinum coils to clot them off.  They usually see things like this happen, but not until after stage 2 repair.  Those coils will be in there for life.  They don't hurt or cause her any damage.  They also noticed that her left pulmonary artery has a dip in it.  They may have to patch that during her surgery because over time it can damage her right ventricle.  We don't need that happening.  Mikayla finally made it to the recovery room around 6:00 p.m.  It has been a long day.  A lot longer than they expected.  We met with Dr. Brown after all was said and done and he explained everything to us.  We asked him what case was she scheduled for on Thursday and he didn't know.  He left our room and 15 minutes later called to say Dr. delNido needs to reschedule her surgery until Tuesday the 20th.  Talk about a huge disappointment.  We had our minds and thoughts all set and prepared for this week and now have to go through this all over again!  Like things are not hard enough right now.  We are tired, frustrated and all of the above. 

Wednesday, January 14th

Mikayla has developed a fever of  102.  Also has been vomiting and has diohrrea.  I guess this is all to be expected as we are told.  She has had a lot of medication for the catheterization and also they see fevers after being coiled. Well for some reason, even though she is sick, they still want to send us all home.  They feel she will recover better in her own environment.  I do not feel comfortable taking her home.  She looks like hell.  She is beginning to swell in her face and legs.  I guess I can not second guess the doctors.  So off to home we go.  Well, as soon as we got herhome she started to scream in pain and nothing would console her.  The night at home was miserable, she
definitely is in significant pain and needs to be seen by a doctor.

Thursday, January 15th

Her pediatrician has advised us to go  back to Boston.  Well I am not going down that road, so off to the cardiologist at UMASS is where we are headed.  They have decided to keep her overnight.  Her oxygen stats keep going from the 80's to the 50's.  They put her on blow by oxygen.  She developed tape blisters....she is allergic to the tape they used on her leg in the cath lab.  Our poor baby has seen her share.  The doctor in the I.C.U. at UMASS wants to send her by ambulance to Children's.  He did not feel comfortable with her there.  If something should happen to her heart or conduit they can't do a thing.  Here we go again!!!  Funny, funny, funny as soon as we got to Children's and they did their assessment on her they noticed a pretty  bad ear infection.  Sent all the way to Children's for that.  Had enough of docs for now!!  We are staying the night though to see how she does.

Friday, January 16th
   
Dr. Brown came in to see Mikayla.  Apologized for sending her home early.  We have been bounced back and forth enough.  He is going to keep her the night again to make doubly sure she is well enough before going home.   They gave her a one time shot of antibiotic to cure the infection in her ear.

Saturday, January 17th

We are home now.  She is doing ok.  Still fighting off a little cold and ear pain, but happy baby is back.  We haven't seen her smile or laugh since before the catheterization.  Slowly but surely she is getting back to her old self.  It is nice to see her like this.  Makes things all worth while.  We have been through a lot in nine days and are in need of some serious rest before we head back to Children's on Tuesday.  My head is so foggy I can't even think straight.  So we will enjoy the next few days as best as we can before going in for round 2 or should I say round 3.  What a crazy week and a half it has been.  Not looking forward to next week.  I know I promised one and all updates daily, but things were very hectic.  I will try and do a better job starting Tuesday.  She is scheduled for first case surgery. We need to be in at 6:00 a.m.  Please keep praying for her and us.  This will soon be over and I hear we will be able to enjoy at least two years before having to bring her back for stage 3, the completion called the Fontan.  For now I am going to take a much needed nap. Love to all. XXOO

Tuesday, January 20th

Well we have finally made it to surgery.  It was very hard handing her over to the nurse to go off.  What a long day we have ahead of us.

7:30 Anaesthesia and nurses came in to take Mikayla.

8:45 Informed that they had all lines in, made first incision and doing fine.

10:30 Just started her on the heart/lung bypass machine.

11:30 Off machine. Surgery almost complete.  Just finishing up closing her chest.

12:00  Dr. delNido came in to say all complete.  Things went great.  They straightened out the dip in her left pulmonary artery.  Connected superior vena cava up directly over both left and right pulmonary arteries hoping it will distribute blood evenly through both.  Took out conduit.  Now on her way to recovery in I.C.U.

Wednesday, January 21

Well Mikayla looks great.  Except for the massive swelling in her head and face which is to be expected.  She has severe pressure in her head giving her extreme headaches due to now that the blood flow has been redirected.  That will all go away soon...hopefully.  She is off all support.  They took her off the ventilator last night.  Took out the chest tubes, arterial line, central line and all I.V.'s except for one in her foot.  AMAZING!  I cannot believe she had open heart surgery yesterday and has no support today.  What a super baby.  She's metabolizing the pain meds rather quickly so her pain is hard to get in front of, but doing o.k.  They are transferring her to the step down unit tomorrow.  They say we may be home by this weekend.  It all depends on her.  I will continue to keep everyone updated.  Thank you for all your prayers.  We can now all breathe a little easier.  She will recover soon and be much better for a longer period of time before we must come back for her final surgery

Thursday, January 22

The first two pictures that are posted here are from the night of surgery.  The next is the day after.  And final is on Friday.  She couldn't have recovered any better than this!

Well, Mikayla was sent to the step down unit today.  They say she was ready to go yesterday, but there were no beds available.  I can't believe how well she is doing.  She looks tremendously beautiful.  You would never be able to tell she underwent open heart surgery two days ago unless you were to look at her chest. We like to call them her bravery patches.  My amazing baby has every one of the doctors and nurses astonished.  They say that the stage 2 surgery is a lot quicker recovery, but not usually that quick.  I firmly believe that because of each and every one of you, giving us your support and prayers are what has helped our little Micky.  Thank you so much. 

Friday, January 23

Well, everything still going great other than we have a very noisy roommate!  Mikayla is having a very hard time sleeping due to the fact the little boy in our room keeps crying.  I feel bad for him and for us!  We need some rest.  Dr. Marx came in and is amazed with how well Mikayla is doing.  He says it is time for us to go home.  Her chest x-ray, EKG, blood work and echocardiogram are all perfect.  I had one nurse tell me that how quickly she recovered is unheard of.  Well, I hope others in our situation can have the same results.  We can't wait to see home.

Saturday, January 24                           

All packed up and ready to go.  Said our good-byes.  Hope not to see this hospital for a very long time.  We have also spent this week with our good friends The Campbell's.  Their baby Grace was born the same day as Mikayla, same hospital and same condition.  They had to spend some time in the hospital this week due to some problems Gracie ran into.  I only hope the best for them.  Please, I ask one and all to pray for them as well.  Grace is due for surgery on Feb. 17th. 

Mikayla seems very happy to be home.  I fed her 4 ounces and she is now fast asleep in her swing.  Her favorite place to be.  When I got her into the house and out of the car seat she looked around and gave me the biggest smile!  Our baby is home and we can now go on with our family of four, hopefully without any setbacks. I am hoping my next updates to share will be that she is crawling or her 1st birthday.  Well, must go unpack from our hospital vacation.....Love to all.