Help Zachary

Happy Father’s Day to the Best Dad in the World!!!!!! Thank you for giving me a second chance at LIFE!!!!!

Zachary is still doing wonderful! We are still swamped with lots of Doctor appointments, but it is starting to ease up just a bit.

Zachary now has another Hernia in the middle of his belly button right by his Mitrofanoff. Last Monday I was unable to Cath him so we had to make a Quick Visit to the Doctors. If we have this problem again Zachary will need another surgery to repair his Hernia’s.

All the test that Zachary has had in the last month the Small Bowel study showed that his Bowels are working better but at a very slow rate, ” They are not moving to fast” His swallow study showed that when he drinks water or juice it pools in the back of his throat by his air way which is not good, but he is able to clear it. “which is good”. His upper GI showed that he has severe Reflux of the esophagus, so the Doctors are worried about him Aspirating. So far we have only had the one bad episode that he was sick with a bad cough for almost a whole month!

The plan for the next surgery is to wait as long as possible. None of the Doctor’s want to touch him because his little body is so fragile from all of his surgeries.

Zachary’s Kidney is still holding his own. He is still on weekly labs because his Potassium has been really high. Zachary is now one 8 Teaspoons of Kayaxalate  Along with the other 23 Medications that he is on.

Over all Zachary is growing and having a great summer!!!

Zachary starts summer school on Wednesday. He is very excited for his new teacher to come to our house.

Thank you for all your thoughts and prayers

Happy Father’s Day!!!!

Zachary’s Journey

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The Elsenpeters

Crazy boy!

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Sorry for the lack of updates. Zachary is doing great! Last weekend Zachary’s G-J tube broke so on Monday we had a nice trip to the U of M for a new tube. Zachary was terrified and didn’t want anyone to touch him. So the Doctor’s let me come back to the operating room and I got to pull his G-Jtube out and help put a new one back in’ How fun is that! Hands on, I guess I don’t need any schooling I just learn as I go.

On Thursday We are back down at the U of M for a swallow study,Gastic bowel study and a upper GI. Zachary is still aspirating and the Doctors are concerned about his lungs. Next week Zachary is having a MRI on his head because of his seizure active that he was having in the hospital and because he has been getting dizzy on and off. We are also seeing the Nephrology ‘Kidney DR’,  Urologists ‘Bladder Dr’, ENT ‘ear Dr’   and Dermatologist ‘Skin Dr’ all in the next two weeks. We will be very busy for the next couple of weeks. The plan is after all these test and talking to all these DRS we will come up with are next plan on what surgery Zachary should have to repair his Esophagus and stomach.

Zachary is such a happy little boy that is always smiling and running around like nothing is wrong with him. Zachary had his last day party at school today and all the kids are always asking him “what is that on your back and why do you have a Mickey Mouse bag on your side and Zachary Just looks at them and says I am a super Hero and runs off and plays like nothing is wrong or different with him. This is all he knows, and to him he is not different. I love his attitude I wish all kids would be more like him and just love life to the fullest.

This is Zachary when they perforated his stomach

And this is my silly boy full of chocolate!! Look how far he has come!!!!

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Zachary is loving that he is home!!!    But He is still battling a nasty cough and is still throwing up.  Last week I got a call from his primary Doctor that told us that he is defiantly aspirating into the lower right lung. Not good, so now we have a Sat monitor that he is hook up to at night Along with his J-tube feeds, G-tube suction, Mitrofanoff , all in his rock hard hospital bed and Zachary doesn’t seem to mind none of it, this is all that he has know his whole life. We also have Zachary in a home made Danni Sling so we can keep him upright in his bed so he doesn’t aspirate.

Zachary had a follow up Doctors appointment with DR Hess. Dr Hess was the surgeon that did the Nissen. It was pretty funny because Zachary threw up all over the floor as soon as we walked in, what better timing! Dr Hess agreed that Zachary is to complicated and he doesn’t feel comfortable doing anymore for Zach’ well I really don’t want him to touch Zach so at least we are on the same page. Dr Hess also agreed that he will help us find a Doctor that will repair his Mistake. Zachary has a follow up with GI on Wednesday and we are also meeting with Dr Hess to come up with a plan on Zach’s next surgery. Zachary had a eye appointment at the U of M today and they are concerned with his High Blood pressure and his retina is looking a little more damaged. So the eye Doctor wants to do another ERG on his eyes and a MRI.  Zachary will need to be put under for 2-3 hours for both of these procedures. We are not sure when they are planning on doing these but I will update as soon as I know.

Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn’t worry whether or not
my plants were poisonous.
I never thought about immunizations.

Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.

Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.

Before I was a Mom,
I never held a sleeping baby just because
I didn’t want to put him down.
I never felt my heart break into a million pieces
when I couldn’t stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom,
I didn’t know the feeling of
having my heart outside my body..
I didn’t know how special it could feel
to feed a hungry baby..
I didn’t know that bond
between a mother and her child.
I didn’t know that something so small
could make me feel so important and happy.

Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom…
I didn’t know I was capable of feeling so much,
before I was a Mom.

The rest of the family is doing great! School is almost over and the kids are excited for summer and lots of sleepovers and bomb fires.

Thank you for all your thoughts and prayers,

Stacey

Zachary is still battling a nasty cough and is still throwing up. Zachary is also having REALLY high blood pressure again last night it was 140/90 and today it is 150/110!!! Way to high, I’ am really worried because he is already on 4 blood pressure Meds and they are all maxed out to the highest they can be! I am waiting for the Transplant Doctor to call to see what the next step is.

Zach's new Hospital bed

On Monday I brought Zachary back to see his primary and he now has fluid in his ears and the X-ray shows that he is Aspirating into his lungs again’ not good, so on Tuesday Home care brought Zachary a Hospital bed so we can keep his head up to hopefully help with his Aspirating. Zachary loves his new bed! He thinks he is pretty cool because he has a controller to raise the bed up and down.

Austin and Kiley are also still battling this nasty cough that is going around. Austin had a fever for 3 days and missed school all week, he is finally feel a little better today. Kiley has had this cough since January, and her Asthma has been Really bad this year.

Please pray for Zachary’s Blood Pressures to come down and for this nasty cold to leave our house.

Thank you for all your support and prayers,

Stacey

Zachary is still battling a nasty cough, fevers and is throwing up. I brought him to Urgent care last night and all the DRS could say was “Why Did you bring him here” I don’t like to take him to the ER because everytime I do it turns into a 4 day Hospital stay. I would rather keep him home and have him heal here. I did make another DRS appointment today with his Primary just because he is not getting any better and last night none of us got any sleep, between him coughing, throwing up and his feeding pump beeping, yes It was a long night. I am really worried that Zachary is Aspirating into his Lungs again. This has happened in the past and he sounds the exact same. Zachary doesn’t have a Nissen anymore so most likely we are headed down that same road.

Kiley and Austin are also sick with bad Allergies and there asthma is really flaring up bad this year. Kiley is on 6 Meds to help control her Asthma and Austin is on 3 Meds. It would be great if CVS pharmacy would give us a break on all of our Meds. Zachary is on 24 Meds, so when you total them all just between the kids WOW a Whopping 33 Meds!!! That is a lot! I am so glad that we have Health insurance.

Next week we are down at the U of M for more follow up appointments and test. We are still trying to figure out what surgery and who and where we are going to have Zachary’s stomach and esophagus fix. I really like some of the DRS at the U of M so it is so hard to leave. I just want the best care for Zach’ I know he is complicated and many Drs are even scared to touch him so we need to find that perfect Doctor.

We are very excited for my Dad and my Brother they are closing on their new house next week!!! This house is too houses together so they each get their privacy, but still have each other if they need help. My dad is in his 60’s and thinks he is still only 30!!! So I am glad they are moving in together.

We are also very excited that my Uncle David SR and cousin David JR are coming to visit from California at the end of May. Zachary has never met David Jr, David and his wife Mary have been very supported through Zachary’s life so we are excited to finally see them after MANY years.

Thank you for all your thoughts and prayers,

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