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Archive for November, 2008

Simon went in for his intake/4mo appointment.  It was a good appointment following a stressful night.  Simon’s hernia reappeared last night, leaving major concern about needing surgery today.  We are going to carefully monitor Simon for signs of pain/distress.  If so, he’ll go into surgery much more quickly than desired.  Otherwise we’ll try to wait it out for 6 months.

Simon’s developmental adjustment shows him more advanced in certain areas than he should be.  Nothing at this point is lacking based on him being a newborn.  We’ll start our therapy in home next week on top of our therapy that we are already doing.  Doc was thoroughly impressed with Simon’s movement, muscle development and tone.

Simon is 18.5″ long, head circumference of 32 cm and weighed 6 pounds 15.5 ounces.  He will see the eye doc tomorrow and the pediatrician again in 2 weeks.

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We took our first family outing tonight.  As it’s Papa’s birthday, we opted to go there and offer birthday wishes and deliver cards.  It seems that changing from our home tanks to travel oxygen is going to be a pretty easy task.  Loading and unloading to/from the vehicle is a bit more challenging.  I’m finding ways to make it work with one set of hands.

We did have the opportunity to test the battery length on the pulse oximeter.  We unplugged the machine moments prior to leaving, about 4:30.  The battery died on the pulse oximeter about 5:30.  An hour isn’t enough time for us to travel to and from the various appointments in Colorado.  A trip to Apria tomorrow is in order.  We definitely need a new machine – one that has sufficient back-up.

I’m glad that our first outing was to a place where we had access to outlets.  Hopefully our next will prove as enjoyable as tonight.  It’s always a good time at Nana and Papa’s!

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Dad and Simon had the opportunity to snuggle up today.  I caught a picture to mark the occasion!

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Dad wanted to catch a picture this morning of Simon, Jaden and I all sleeping in the same bed.  Of course necessary precautions were adhered, but priceless none-the-less.

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Simon was released from the hospital on Thursday.  What a fabulous and nerve wracking event.  I met with the oxygen company rep who delivered a portable oxygen tank, pulse oximeter and apnea monitor.  In about ten minutes time he had run through each of the machines and assured me that I had four hour battery back up on the pulse ox and 8-10 hours on the apnea monitor.  I was also told that I would have about 20 hours of oxygen running at 1/32 of a liter.

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I didn’t turn any machines on until just moments prior to leaving the NICU.  Rob’s Mom and I had to stop at the Ronald McDonald house and grab our belongings before hitting the road.  We were met with issues just before leaving for Cheyenne.  The battery in the pulse oximeter died, about 30 minutes after turning it on.  We still had the apnea monitor and began our drive home.

We made it through Denver’s traffic and were about twenty miles north and I stopped to grab water so I could make Simon a bottle.  When I came out, Simon’s apnea monitor battery had died too.  Fortunately I wasn’t traveling alone and with two adults, Rob’s mom sat in the back and I drove.  By this time I was extremely angry at the technitian who brought the necessary machines. We stopped about 45 miles from home in Ft. Collins as I needed a potty break and Simon decided it was time to eat.

We got back on the road and made it to Cheyenne and arrived at home.  Rob had to head out the door to work, but quickly grabbed machines and got them plugged in.  I got Simon inside and plugged back in to the respective monitors and adjusted his oxygen levels accordingly.  I fed Simon again as he was apparently starving and then called the oxygen company.

Apria in Cheyenne was fabulous.  They took my information and came out quickly.  They brought back-up oxygen tanks and left me feeling comfortable with their quality of service and care.  I discussed the issues had with the NE Denver location representative and was told that they would contact that location to have those issues resolved.  All in all, it went well, especially after business hours.

We’ve had a couple long nights being home.  Simon has his days and nights mixed up and doesn’t like sleeping much in the dark unless he’s laying on my chest.  We are working through the kinks and hope to get his schedule sorted out over the next week.

Simon took his first bath at home this morning.  After his bath, he ate, we changed all the tubing of his oxygen and replaced the stickies that hold his cannula in place.  The following pictures are from this morning.

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Now Simon is sleeping peacefully as I’ll allow.  He was awake for quite some time with his bath and hopefully we will be able to keep that up with each feeding today.  Next up are therapy exercises.

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Simon is coming home!!!

He will be discharged tomorrow or Friday!

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With the second opinion offered to the medical staff of the NICU, a bit of progress has been seen.  While they are still objecting to a back transfer, they are taking some steps.  Simon will undergo a room air challenge twice a week to see if there is an improvement in the length of time he’s capable of staying off oxygen and his ability to bring his saturations back up.  Step by step…  Slowly.

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Fighting…

We have had to fight for a second opinion.  It seems that this hospital doesn’t have people question doctors and when a person does, you are threatened with Department of Family Services being called and a temporary custody injunction ordered.  Fortunately, that hasn’t happened yet, but the possibility is there.

We’ve questioned what Dr. Koratkin has stated as his “opinion” has changed so much and quickly.  He’s gone from saying that Simon must be seen every week to wanting him to stay there for 10 more weeks.  Prior to that he said that he could see him every 2 weeks and then ever 4 weeks.  With all the jumping around that he’s done and bolting when asked questions, a second opinion was more than warranted in regards to Simon’s eyes.

This morning we finally got our second opinion and it definitely differed from Dr. Koratkin.  We were told that Simon was perfectly fine to be seen every two weeks outside of the hospital.  HOORAY!  With the great news, the question stands, “Can we follow through with the back transfer?”  The medical staff at the hospital says no as they have “no guarantee” Simon will be released from the hospital here within two weeks.

So now what?  Sit with my tail between my legs and stick it out?  No.  I have an even greater concern for the quality of care that my son will receive in that hospital now that feathers have been ruffled.  We’ve already had issues in that regard and the attitudes of the staff have become more hostile as the day has progressed.

Monday I will be making the necessary calls to various doctors to gain the information currently lacking.  We will progress from there.

As I’ve stated before, there were no issues with quality of care until the census was awry.  As a parent, it’s up to me to fight for Simon.  We have concerns, we need resolve.

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