Week 6 – How did we ever do this for 8 months??? I am worn out! It feels like we have something scheduled
every minute of every day… especially now that Alexis and Zach are in the
middle of Softball and Tball season (AND Trent is coaching Zach’s TBall).
My dad came last week and kept everyone and he even did
laundry!!! He is so awesome.
My mom came for this week and I am so happy!!!
Zane – I am now in the room with him actually feeding
him. It is so much fun to be able to
feed your own kid and not through a tube.
(Even Alexis fed him this weekend.)
This week we are working on him taking a variety of foods AND a drink. Which brings me to a request… I need honey bears without the honey. We put the milk and a straw in the honey
bear. Then when he puts his mouth on the
straw, we squeeze. I guess someday he
will figure out he likes it and he will suck it up himself. ???
Trach pulling is scheduled for June 16th AFTER
our vacation this year. We will see if
this helps.
Pam
PS – THANK you Sherry, Stacy, Dana and Angie for all the
days you volunteered and kept Alexis and Zach after school for these past few
weeks!!!
I think Zane has turned a corner!!! He is now eating at every session with fewer
and fewer stand offs.
Zane had an up and down week.
He has 6 sessions per day that last about 30 minutes each. There is a Speech therapist (ST), Occupational therapist (OT), and a Neuropsychologist (N) that all work with him every day. We leave the house at 7:30am and get home a little after 4:00pm. Then he has Physical therapy twice a week and home bound school for 2 hours a week once we get home. This kid is on a major schedule.
During his first session, the ST and he have a standoff because he does NOT want to cooperate. But the next session with OT, he seems to oblige. Basically as long as he will do what they ask him to do, he can watch Blues Clues or Wiggles, play with toys, or look at books. THE MINUTE he stops, everything goes away. (They even closed the blinds yesterday so he couldn’t look outside.)
This week they asked him to put a dry spoon in his mouth and close his lips around it. His tongue has to be in the correct place, etc. Then they dipped it in cheese soup and he had to do the same thing OR he had to repeat it until he did it correctly. The end of the week they got to a little scoop of food on the spoon.
He does a dry spoon great!! Now we have to get him to do the dipped spoon more consistently and so on.
I guess everyone knows that Zane has never really eaten anything by mouth. He has always been fed by a tube. It is funny but I am so use to it that when I fed a baby with a bottle the other day, I thought “good grief, this takes forever!”.
My mom is going home tomorrow and I am so sad. She was such a big help picking up kids and keeping my kids and several other kids too!!! LAUNDRY LAUNDRY LAUNDRY I have not done one load of laundry since she has been here. OH MAN THAT IS A CHORE IN MY HOUSE!!!
Talley is taking Zachy to Grandma and Grandpa’s with Dakota (Trent’s parents) in Abilene Tuesday and Grandma will bring him back the following Tuesday. THEN the following week my dad is taking Zachy duty. THANK YOU THANK YOU!!!
Pam
Zane is doing AWESOME!!!
They are putting a spoon in his mouth. AND today they got him to close his lips around the spoon. I couldn’t believe it. HE has NO control over the spoon at all AND he opens his mouth for it. Yesterday they dipped the spoon in Potato soup. They said he would wipe off his tongue with his hands but then he would actually do it again.
He is progressing in such a short amount of time. It is very exciting!!!
Pam
Hello!!
It has been a long time since I have updated everyone so here it the short version.
In November Zane turned 3 and was able to start the PPCD program at school.
In December Zane was hospitalized for pneumonia again.
Since then no hospital but lots and lots of antibiotics.
Today we are starting a feeding program at Our Children’s House at Baylor. It is going to be about 4-6 weeks long, 5 days a week, all day. HOPEFULLY this will get him on the right track to actually eating something.
My mom is coming for the first two weeks to help with Alexis and Zach while we are there. After that we will juggle them between Trent’s parents and my dad and all our wonderful friends.
We will try to pull the trach again this April or May… WOW it is almost April.
I will update you more after our first day when I learn more.
PamHi, everyone.
I don’t think I was able to tell everyone but Zane is have a couple of procedures done tomorrow. A Bronc and then they are going to work on his teeth while he is under.
I just remembered Sunday that this was happening tomorrow so sorry for not letting you know earlier. It is crazy but it seems like no big deal any more.
I have to get to bed because we have to be there at 7am.
Pam
Today is Zane’s 3rd birthday. Can you believe it? I want to cry every time I think about it. What a day that was!!! What a year that was!!!
Zane Isaac is such a happy kid for all that he has been through. Smart smart smart !!! He blows us away just about every day with something else that he does. He can point out and say all his letters (upper case and lower case), same with his numbers, AND he can even say what letter a word starts with. He really is incredible. He is way too smart to eat though. Seriously, we have not made much progress with eating. L
Yesterday I enrolled him in Forney School district. There is a program (PPCD - Preschool Program for Children with Disabilities) that has accepted Zane. He starts on Monday for half day every day. It is just like school… he has to wear the uniform, he can be tardy, and has to have a doctor’s note to miss any days. There are several area’s that they are going to help him in… self help, communication, speech, listening, fine motor, etc… I am very excited!!!
Please keep Zane in your prayers for the winter. We will try again with the trach removal in the spring if the winter goes ok.
PamWE
ARE HOME FINALLY!!! 2 weeks is just too long for a hospital
visit!!! The first couple of days were very scary. It reminded us
how fragile Zane still is and how VERY blessed we are to have him. He is
such an awesome kid.
Terrific News!!!!!
They have moved Zane to another room where he can get some rest. He is totally off oxygen for the moment. This can always change because of the nature of the illness. He is also off the vent!
They have determined that he does have viral double pneumonia and additionally a bacterial infection in his trachea. He is responding to the meds but still very weak. He is making steady progress. He also still has a central line and the IV but he is getting better.
The number to the room directly is 214-456-7715. Pam still has her cell off so you can call her and Trent in the room.Thank you again for all the
prayers.

May 18, 2007
HEY EVERYONE!!!!!
Zane will have his trach pulled Monday morning at
9am!!! YEAH!!! We will be in the hospital at least one night.
April 25, 2007
Zane had his surgery Monday morning. He was not able to come off the oxygen so they keep him over night. He is still in pain and sleepy but he is home.
We will redo the sleep study Friday May 11th.
THANK YOU for all the prayers and phone calls.
Pam
April 17, 2007
We still have hope, faith, and determination to get this trach out before summer!!!
Here is the schedule:
April 23 - This Monday – surgery to take out tonsils, adenoids, and a bronc (check his airway to make sure it is clear).
May 11 – 3 weeks after surgery – redo the sleep study
May 21 – assuming he passes this time – Another bronc and pull the trach.
June 2 – Beach trip (I DO NOT want to take a trach baby to the beach!!!!)
I updated the website with some newer pictures of Zane. Click here
Pam
PS – You should hear him do the donkey sound. SOOO CUTE!!!
April 9, 2007
Well, we finally got the results back from the doctor today about the sleep study. He did NOT pass. Ggggrrrrrrr
I was able to get an appointment with his ENT tomorrow to see if it might be his tonsils. We can have those taken out and do the sleep study again. I will know more tomorrow.
Here is a picture of Zane at the sleep study last week. LOOK AT ALL THOSE WIRES!!! We are still working to get the glue out of his hair. : )
Pam
March 31, 2007
Good Morning!!
Zane has had a GREAT winter!!! There was not any hospital stays, no major sicknesses, and RSV season is almost over!!!
Tonight we are headed to Plano Pediatric Sleep Institute. This is the first step to pull Zane’s trach. We have to stay one night for them to monitor him sleeping with a cap on the trach. If he passes, we have to have another bronc to make sure his airway is clean of any extra tissue. IF that is good, I believe they will pull the trach then. Within HOURS the hole will close on its own. They will want us to stay a couple of nights in the hospital to monitor him.
Is that exciting or WHAT???
Eating? This is the most frequently asked question… AND the answer is… “NOPE!” He is such a turkey!!! He will clean our windows with his tongue. He will chew on video tapes. He LOVES our phones and my computer mouse. I even caught him licking up Trent’s shoe horn. DISGUSTING!!! BUT if you put chocolate pudding, apple sauce, or peanut butter in his mouth, he screams bloody murder. He will lick Fritos or anything salty but not much after that.
Zane is learning some sign language and it is fun to watch him try to communicate with us. He also loves music!!! He knows all the motions to the Wiggles tape. Last night he was trying to count with Alexis and Zach. I hope after the trach is out his speech can catch up. I talked with Sunshine school where Zach goes two days a week at our church and HOPEFULLY Zane can attend also. He will still have his G-Button so the teachers will have to feed him through that. ???? I hate to put that on anyone that is uncomfortable. That is my main concern. I think it would be so good for him though!!!
Pam
November 8, 2006
Two years ago today seems so long ago, but at the same time it seems like yesterday.
Tonight we celebrated Zane’s birthday with our new Wednesday night small group. I tried all night to get Zane to show off all his new tricks AND NOTHING!!! He would not perform for nothing!!! Is that a 2 year old for you or what? ZANE is no fun at birthday parties!!! He does not like cake. He won’t open gifts AND he pushes out his bottom lip when people sing Happy Birthday to him.
I wish I could list all the blessings he has brought to my life. He is an awesome awesome kid!!! AND he is a ham…He cracks me up!!
I wish I could list all the amazing people that he has brought into my life. Doctors, nurses, therapists, friends, church families… whom I would have never met.
I wish I could list all the lessons I have learned because of Zane. I need to start writing them down now.
I wish I could list all the reasons, God gave me Zane with his Trach, Gtube, Still NOT saying Mommy (even though he says dada and tata for Talley and GaGa and WEEEWEEEE when he is upset – VERY sensitive subject...), all the equipment, long nights, roller coaster rides – AND ALL. He gave me Zane, so I could learn patience which I am still learning!! Did I mention that I think I have found a speech therapist so she can teach Zane to say MOMMY ASAP??!!!??
I wish I could list all the names of people who prayed and worried and cheered and cried for him. THANK YOU!!!
BUT I can’t, because I am tired and want to go to bed. Love you all! Pam
October 19, 2006
Hello All!!!
Zane is doing great! He is walking and yesterday he figured out that he likes OREOs!!! (I think Uncle James won’t like this too well so don’t tell him.) I am so excited!!! It is such a break through. He will walk to our pantry and stand there until we give him a cookie. Then he will walk back to his room with it. It is awesome!!!
Zane is having surgery on Monday. Not a big deal and becoming a routine procedure… It is to take out the granular tissue around his trach and inside. I believe it is blocking his air way above his trach. The good thing is that Zane does not have to stay the night in the hospital. YEAH!!!
Trent’s friend from high school just had quads a couple of weeks ago. They were born at 26 weeks same as Zane. 2 boys – 2lbs and 2 girls – under 2lbs. Three of them are doing great. Hunter though is having a rough time. He has a sever brain bleed and not expected to live. Zane was not expected to live several times either. I believe God had no choice but to let him live because he got sick of hearing all the prayers that we all bombarded him with. Can you please say a prayer for Baby Hunter and the rest of the Hutchison family?
This has taken me back to relive Zane. I want you to know how much I appreciate everything you did. Just a simple call or email really kept me going. When you think to yourself - “I don’t want to bother them.” “They don’t want to hear from me.” “I don’t know what to do.” “I don’t know what to say.” Or EVEN “They won’t know who I am.” DO NOT LISTEN TO THAT BAD BAD VOICE!!! The visits, the phone calls, and the emails uplifted me, kept me going, and I didn’t feel like I was alone. When I would hear from people I didn’t even know, it really amazed me. You do not have to say anything except “I am praying for you” or “I just wanted to let you know I am here for you.”
THANK YOU FOR ALL THE PEOPLE THAT DID THIS FOR ME!!! I feel so blessed to have you!!! Trent and my kids do miss all the wonderful food. (Hint Hint – Courtney Cartwright)
Pam
www.carepages.com HutchisonQuads
August 25, 2006
Zane is VENTALATOR free!!! YEAH!!!
We got home yesterday and that wore me out. What is worse than going to the hospital when Zane is sick? Well, Let me tell you… Going to the hospital when he is well!!! He crawled up and down those halls. He had a great time “running” from nurses.
The nurses were very excited to see how great he is doing. I wonder if the nurses get to see the kids much after they are better.
Now we have to stay healthy through the winter so we can take the trach out. The nursing hours are now being cut. I have mixed emotions about this. YEAH – We can have our house back and be a “normal” family. BOO – I think I will cut the night hours since Trent is here to help… less sleep.
My mom is still here AND Zachy is getting VERY spoiled.
Pam
PS- I am still looking for a Speech Therapist and a Physical Therapist
August 19, 2006
Hello, All!!! We had a great vacation. NO ER visits which is always good. He had a great time… we all did. The one thing I could not tell you was that first we went to Abilene to surprise Trent’s dad for his 60th birthday. It was awesome. We got to take Zane to their church and Terry got to introduce Zane to his congregation. I do not think any of us had a dry eye. I don’t know who had more fun… All of us getting to surprise him or Terry getting surprised.
BIG NEWS – On our vacation, the hospital called and said they have an opening for Zane to come in to get him off the vent. Monday morning I am taking Zane into "Our Children's House" for a few days to get him off the vent. The trach will still be in place. He still has to make it through the winter OFF THE VENT to be able to take the trach out.
Zane still isn’t eating AND we have lost our speech and our physical therapist since we moved. He is licking Fritos. I will attach a picture.
Alexis started Kindergarten Tuesday and she LOVES it. It has been four days and I am still crying about the whole thing. I will attach a picture of her in her uniform.
Zach is having a hard time not being able to go with Lex. The only comforting thing is that he is going to Sunshine school and his teacher will be Mrs. Leslie. If you remember Lex had her and she LOVED her.
OH my mom is dropping EVERYTHING to come take care of the kids next week while we are at the hospital. THANKS, MOM!!!
Sorry this was so long… I think I am rambling now, so I will go to bed. Pam
August 2, 2006
Long time no talk…which is a good thing…No more hospital stays. We spent one day at a couple of ERs but other than that we have been good. (GTube came out and the hole closed up.) We are still on the waiting list to go back in to get completely off the vent.
We moved to Forney a couple of weeks ago, so I have new info to give everyone. It is in the country with a swimming pool with an awesome front porch. I LOVE IT!!!
10634 Bradley Cir
Forney, TX 75126
New Home: 972-564-1808
Cell is still the same
New email: PamelaBrown@cebridge.net
We are going to try to venture out of the house on a vacation with Zane and NO NURSE. We are going to Hot Springs next week. Pray there will not be any ER visits!!! J After all the oxygen tanks, vents, monitors, medicines, nebulizers, suction machines, I hope there will be room for the rest of us!!!
Pam
PS- Before you ask, we will not be changing churches. (ARE YOU NUTS???)
April 6, 2006
WE
ARE HOME!!! Yeah!!! Two weeks
is WAY too long. All the nurses
remembered us and were great. I
actually didn’t mind being at this hospital.
The
granular tissue that they took out of Zane was blocking his air way… BUT
it was above the trach so when he had the trach in, he was fine.
When the trach came out, he turned blue then gray.
He did it so many times while we were there. He freaked a lot of nurses and respitory nurses out.
I
am so happy to be home with ALL my kids and my hubby.
Poor Trent… I really have to give him BIG points for this one. He went to work all day in Forney, brought me dinner every
night in down town Dallas, then drove all the way back (usually late) to see
Lex and Zach, do housework, etc… FOR
TWO WEEKS!!! He had such a
great attitude too.
YEAH
WE ARE HOME!!!!!!
Pam
April 2, 2006
Zane
is doing so much better. He is
still on the vent 24/7 and the settings are still up BUT he is finally off
the oxygen. YEAH!!!
He is back to his playful, cute, silly self.
It is so amazing how in love I am with my kids… even Zach.
HEHHEEEEE It is a good
thing Zachy is as cute as he is because sometimes he is a handful!!! ALL
BOY!!!
Last
night Trent stayed up at the hospital for me so I could come home.
My mom left this morning so we are all headed up to the hospital.
We are hoping to be able to come home tomorrow BUT you know how that
goes.
OK
are you ready for the THANK YOUs? I
have a long list…
Grandma
and Grandpa with Dakota for keeping the kiddos
Tory,
Liya, and Rain for letting Zachy stay the night too.
(Funny story)
Thank
you, Steph and Sean, for too much to list!!!
(spending the night, packing lunches, clothes, driving them to
school and MDO, etc…)
Thank
you, Talley, for putting up with Zachy’s abuse and keeping them those
nights and not throwing Zachy to the curb.
Sephanie
Ownby for taking the kids home from school AND driving them home.
Trinity, they had a GREAT time playing with you!!!
Thank
you, ladies (who I don’t know who all did it yet) that brought us
casseroles!!! THAT IS
HUGE!!!! My kids thank you
too!!!
AND
THANK YOU, Grandma with the mouse, for dropping everything and driving
from Amarillo to keep the kids and cleaning my house.
Thank
you for all your calls and emails and prayers!!!
HOW
CAN A FAMILY BE ANY MORE BLESSED????
Love, Pam
March 31, 2006
I
talked to Zane last night on the phone! What a cutie!!! He said
“Hi” and “Dada”. He is feeling so much better. Pam said
since he was not saying Mama yet the nurses wanted to have him saying
“Mama” in sign language before he went home.
His
oxygen is still at 40% so the doctor wants to keep him there over the
weekend and into the first of the week. They do not want to let him go
home until his settings are back to normal. Grandma from
March 28, 2006
Hello, this is Pam's sister Debbie, and I am going to try to update everyone on Zane. Pam is still with him 24 hours a day at Childrens, Floor 7, Room 402. The phone to Zane's room is 214-456-7702. She wanted everyone to know that his procedure went well and they could not find anything wrong with his Nissen, therefore no reflux! She also said he would not have to go to the ICU. His fever is down, but still has the ventilator settings relatively high. He is acting a little better, and sleeping alot. When he is feeling better the Doctor wants to do another scope procedure, and then maybe he can go home! Sooooo in the mean time I know that Pam will need help with Alexis and Zack.
Thanks for your love and prayers,
Debbie
March 26, 2006
Zane
is scheduled to undergo another bronchoscope in the morning.
They will be checking his throat and his nissen/stomach to see if
everything looks ok. His lungs
may have fluid in them indicating he may be aspirating into his lungs.
Right now the nissen blocks anything from going back up his esophagus
from his stomach preventing reflux. If
the nissen surgery has given out, then he may be having reflux, which is
going back into his lungs. He
may possibly have to have surgery again to repair this.
We will know more tomorrow after the procedure.
Thanks for everyone’s thoughts and prayers.
We will update this tomorrow.
Trent
March 23, 2006
Zane
has a temp of 105. He is
working very hard to breath and needs oxygen.
We are headed to the ER at Children’s.
Sorry I haven’t been able to call anyone before you got this
message.
Pam
February 10, 2006
Hospital
again Hospital again, Jiggety Jig…
Just doesn’t have the same ring to it, does it?
Zane
has the Roda virus and is dehydrated. We
tried to keep him home by the Pedilyte but it just isn’t enough.
Our nurse woke us at 3:30am ready to go to the hospital. I
am waiting for the doctor’s call and then we are out the door.
My
mom is coming in from Amarillo to keep the kids.
Talley might keep the
kids until mom gets here. (I
say might because she doesn’t like getting woke up this early… Maybe it
is my singing??? NAH!!!)
I
will email later with more. Pam
February 7, 2006
Actually
the stay was not all that bad. All
the nurses were super nice, and I even got to sleep most nights.
Zane is doing great, and I am sure he is happy to be home too.
OK
Bad news now… I was already preparing myself for it but it is definite
now. Gelfand said this morning
that Zane would not be getting his trach out this year.
It will probably be May – June ‘ish’ of 2007
IF he can make it
through next winter. We
are still going to work on getting him off the ventilator so that is good.
The final diagnosis was RSV (even though he gets shots every month
not to get it) and an infection in his trach.
I
am sad because I was ready to start being a normal family.
It is hard to give up my plans and turn the control over but I know
it is the right thing to do. You
would think that I would have already learned to do this BUT I have a hard
head.
Thank
you to everyone that helped with the kiddos!!!!
Talley, (of course!) Amy, and She She … Trent’s parents have them
now in Abilene and Talley will bring them back Thursday.
(Gail is sending Zach home potty trained!!!
THANK YOU, GAIL!!!)
Yeah
we are home!!! Pam
January 31, 2006
Frustration!!
I
hate the hospital. I hate the hospital.
First we were told that his xrays showed either pneumonia or a small
part of his right lung collapsed. RSV
was ruled out. NOW they are
saying that the RSV results came back positive.
Which means it just has to run it’s coarse.
We will probably be in the hospital a week or so.
The
phone number to the room is 214-456-7702.
Sorry
for little details but I am in a hurry…
Pam
http://www.astdhpphe.org/infect/rsv.html
January 30, 2006
We
are headed to the hospital. We
are all sick but Zane is bad. Talley
is keeping the kiddos for me tonight. She
is such a lifesaver!!!
They
already have a room ready for us at Children’s E7 room 402.
I
will email as soon as I hear something.
Pam
PS – Today is Trent’s birthday!!!
January 12, 2006
Hello,
All!!!
It
has been a long time that I have sent out a bad report AND I do not miss
it!!!
GOOD
NEWS first… Zane’s procedure was a world record in time.
The time we left him to the time they came to get us to say he was
done was MAYBE 15 minutes!!! There
was irritation under the G-button (feeding tube) area that is probably
causing all the bleeding. Everything
else looked good. Yeah!
BAD
NEWS… Hospital was horrible. (I
really don’t know how we did that for 7 ½ months.) Zane has been off the
ventilator for 16 hours a day for almost 2 months with no oxygen most of the
time. Tuesday when we went into the hospital we were off the vent
and no oxygen. That night he
was on the ventilator with 40% oxygen.
They did blood work, blood gases, and took chest xrays. I had him down to about 27% by the time we left the hospital
last night. This morning he is
back up and cannot come off the vent at all.
I just got off the phone with the doctor. He said if they would have
got his blood work back last night before we left, they would NOT have let
us leave. His white blood count
is way high. He wants us to go
back to the hospital right away. UGGGG He is going to give us 24 hours with antibiotics and
tobi (this is the breathing treatment that cost $3,240 and should cure
cancer for that amount). If he
isn’t better, we are checking back in to the hospital tomorrow.
:(
HISTORY…
I don’t know why I remember this date expect I remember promising to give
Zane a spanking on this date one year ago.
1/11/2005 - I
walked into the NICU room, and Jennifer (Zane’s day nurse) and Dr. Minnich
looked terrified while they worked on Zane.
I remember standing back thinking this is “faith”.
There was absolutely NOTHING I could do but pray as I watched them
save Zane’s life AGAIN. They
will always have a special place in my heart.
Pam
PS-THANK YOU Ladies Bible class nursery for keeping the kids, thank you SHE SHE for taking the kids home with you AND thank you GAIL for driving all that way to keep the kids.
January 5, 2006
Hello,
All!!!
Zane
is doing great. We still
have not heard from Our Children’s House to schedule him to get off the
ventilator. This is actually a
good thing because Zane along with the rest of us are trying to get over
colds. I don’t think he could
have made it off successfully. He
couldn’t go without oxygen and had to be put back on the vent several
times to keep his sats up.
Zane
has been having trouble with his stomach.
He has a button that goes to his stomach that we feed him through.
(The boy has teeth but won’t use them!!!)
We don’t burp him the conventional way either...
All we have to do is open the button and the air comes out.
The past several months when we do this along with the air, we get
dried blood. SO the GI doctor
wants to go in and take a look to see what is going on.
We
have to go in on Tuesday the 10th but the “procedure” is not
till Wednesday the 11th.
Gail is coming for the surgery but I
might need someone to keep the kids part of Tuesday depending on
when we have to go in. Do I
have any volunteers?
Pam
PS-OH
I almost forgot… Zane is finally rolling over!!!
YEAH!
December 8, 2005
I
have to share something my kid can do that I bet your kid can’t!!!
OK
you know that Zane has a trach which is below his vocal cords.
He can get air past his trach to make a little noise but it isn’t
much unless he is really mad. There
is a filter thing (HME) that we put over the trach when he isn’t on the
ventilator. If we take the HME
off the trach, Zane will stick his thumb in the hole to plug it up, so he
can make lots of noise. It is very
funny and he is very proud of
himself when he does it.
Sorry
I had to do a big explanation for such a little thing! BUT I do have it on
video. : )
Pam
December 6, 2005
Hey,
everyone!!
I
am so excited to share this news!!! Zane
is ready to come off the ventilator!!!
YEAH!!! He is currently
at 16 hours off the vent a day and is doing great.
The bad thing is that we have to back into “Our Children’s
House” (UGGGGG!!) for 4 days and 3 nights.
They will call us when they have an opening, which can be anytime
from now until after the New Year.
THEN hopefully the doctor will still let us pull the
trach sometime around summer.
Zane
is 19lbs and growing like a weed. His
blood gas was awesome and I am so excited!!!
Yesterday
Zane had to get X-rays to rule out Osteogenesis Imperfecta (brittle bones). I
am not too worried about it. Today
was vent clinic and Thursday is RSV shot again.
Busy
week… THANK
YOU Stephanie French for keeping the kids so Trent and I could go
out last night and THANK YOU
Talley for keeping them today while we were at Vent Clinic.
Love,
Pam
November 3, 2005
Can
you believe Zane’s birthday is just a few days away?
I can’t!! Everyone
keeps asking what we are going to do for his birthday.
(It still surprises me that so many people remember when his birthday
is.) Well, we have racked
our brains trying to figure something out.
I SO want to take him to church and introduce him to EVERYONE.
I want to show all the church how well he is doing.
I want to show them what their prayers did. I want them to see that he has the cutest smile with a BIG
dimple and his hair is going to be curly.
I want to tell them that they kept me going through all those months.
I want to show pictures of the scary, little alien he was and the
perfect, little guy he is now. I want to make a great speech telling them all these things
and how much I love them.
What? WHAT AM I SAYING??? I
could never do that! I can
barely speak with more than 4 people looking at me.
OK
so we will be reduced to staying in our house AND inviting everyone to come
for the festivities.
Tuesday,
November 8 at
6:00 to 8:00pm
RSVP
so that we can make sure we have enough hotdogs and cake for everyone.
Email or phone 972-278-6585
Pam
PS – I finally spoke with the doctor today and we get to start weaning his vent again!!!! YEAH!!
October 21, 2005
Today
is the wedding of my best friend from childhood.
Alexis is the flower girl and Zach is the ring bearer (We might need
to send out a prayer request for this!!).
Trent’s dad (Terry) is performing the ceremony so hopefully they
won’t be yelling out “PaPa” like they do when he preaches.
J
Tomorrow
we have a birthday party for Anna, which we have to leave early for
Alexis’ soccer game. Then we
have to rush home for the Tech vs Texas game.
If Terry and I live through this (Terry is a Texas fan),
then they will take Alexis and Zach home for a few days. I will take a nap.
The
kids and I got a cold last week, which we gave to Zane.
L
We have to be much more carefully about keeping the kids AND me away
from him while we are sick. It
is so hard!!! This cold set us
back on the weaning of the ventilator.
Today will hopefully be the first day back to 6 hours twice a day off
the vent. Zane did get his first RSV shot last week and he will have to
get it every month during the winter months.
Zane
got his second helmet in and it is working beautifully.
The first one was a disaster and did not work.
This one is completely different.
His head is getting more and more round everyday.
His ears are still a little lopsided and his right check still
protrudes a smidge. BUT his
forehead looks much better.
Eating…
UGGG! You know he has the
button that we hook up to the formula and it goes directly to his tummy. We do this every 4 hours so really I don’t think he gets
hungry. We try feeding him the
conventional way but he really does not want it.
He is very good at holding his mouth open for as long as it takes to
drool it out. I have tried
applesauce, desserts, oatmeal, bananas, milk with baby rice, etc… I
don’t think it is the taste but the texture that he doesn’t like.
OH,
we have teeth!!! (We won’t
eat but we have teeth!!!) He is
sitting up with minimal help. He
is still working on rolling over but he is connected to so much stuff that
it is hard. He LOVES his sister
and brother. They can make him
laugh so easily!!!
Love, Pam
September 20, 2005
Long
time no talk!
I
have gotten out of the habit of writing.
I know when I have gone too long because I start getting emails
wondering how Zane is doing. He
is doing great. 17 ½ lbs and
off the vent 4 hours twice a day. I
do not think we will hit my goal of being off the vent by his 1st
birthday but it shouldn’t be much longer after that.
The goal is to pull his trach out at the beginning of summer 2006.
Anyway,
we went to vent clinic today. This
is where they Xray his lungs, do blood work, and give us new orders for the
month. Dr. Gelfand told me
today that Zane’s Xrays look “normal”.
What is “normal”??? Normal
for Zane, Normal for a baby with Chronic Lung Disease, Normal for a normal
every day kid,…???? HE
SAID… NORMAL FOR AN EVERY DAY KID!!!
Can you believe that??? Little
Zane’s lungs are normal!!! I
did my best not to cry like a baby. I
am amazed everyday of how very blessed I am.
Can
you believe it has almost been a year?
Crazy!!! Things are
coming around that reminds me of that time… “pre-Zane” or “Pregnant
with Zane”. Halloween – I
think of Alexis dressed as Annie talking to more complete strangers than she
will probably ever do again (except maybe on Halloween again).
Zach was (maybe I should say suppose to be) an elephant but he
wouldn’t wear it. I think
about all the walking we did and wonder… “what if” I would have stayed
home and rested instead. “what
ifs”… as my sister’s in-laws say… If “ifs and buts” were candy
and nuts, we would all have a merry Christmas.
Yata Yata!!! We
had a sign up for our class party. We
all went to that last year on Saturday and Zane was born that next Monday.
Just little things remind me.
In
other parts of our lives… Alexis played her second game of Soccer today.
It is a blast to watch. She
scored two or three goals. Zach
does a great job cheering her on and terrorizing the rest of the parents and
siblings.
I
will try to write more often.
A
Very Excited, Pam
PS-
Thank you, Julie, for keeping the kids on your birthday, today, while we
went to the vent clinic. (Sorry,
I forgot that I told her I wouldn’t tell anyone that today is her
birthday.) Thank you, SheShe,
for keeping the kids this Friday for me!!!
(Shirley does have some openings at her home for any of you looking
for a daycare.) I am looking
for a babysitter for Thursday night if you know of anyone that doesn’t
have school the next day.
August 15, 2005
We
are HOME!! I LOVE HOME AND I
love my bed AND I love not having any buzzers going off every two seconds
for no reason!!!! I LOVE that
my nurses here don’t come in and wake me up to ask me silly questions!!!
Zane
did great. He can hear just
fine. His ear canals are very
small and were filled with wax. The
doctor cleaned them all out and made a hole to drain some fluid in one ear.
He removed the granular tissue around his trach site and did a
bronchoscope. Everything inside
looked good too.
We
didn’t get home until 7:00 tonight so we are beat.
I am going to bed!
Pam
PS-
Thank you, Browns and Davenports, for keeping the kids!!!
Thank you, Chelsea, for keeping the kids for tomorrow’s doctor’s
appointment. UGGGGG!!!
August 10, 2005
Good
afternoon!!
Isn’t
it nice that you don’t get very many emails from me now?
Yesterday
at the “Vent Clinic” all of Zane’s tests came back good.
Blood gases are wonderful. Oxygen
is down to a half of a liter, which is VERY little compared to the beginning
months. The Doctor weaned his
vent more and now I officially get
to take him off the vent....30 minutes twice a day.
Next week it will be an hour twice a day and following week will be 2
hours twice a day. OH and he is
15lbs 6oz.
Trent
is taking the kids to Abilene Friday and then is playing golf on Saturday
before he comes back. (No, no
golf for me… but I am not bitter about it at all!!!!!!!
I am claiming that they just don’t want to be beat by a woman. :)
)
Anyway,
we take Zane to Children’s Hospital Sunday morning sometime and the
surgery will be first thing Monday morning.
The Browns will bring Alexis and Zach back Monday, I believe.
SO we don’t need kid-sitters, but thank you to all of you who have
called and offered!!!
Have
a great week! Pam
July 27, 2005
Hi
all,
We
have had a full week or two. Last
week we had doctors’ appointments almost everyday.
Then Sunday my sister, Debbie, and family came.
Of course they took the kids to the water park and six flags and
spoiled them beyond belief!!!
Last
week we had a great appointment at the “Vent Clinic”.
This is where the nurse and I take Zane back to Our Children’s
House downtown to meet with his pulmunologist. They take blood, look at his
X-rays, etc… Everything was
great. They weaned him down on
the ventilator and then gave us directions to wean more a week later, which
we did. He is doing great.
VERY EXCITING!!!
Then
next appointment was with the Ear, Nose, Throat (ENT) doctor.
He tested Zane’s hearing… well the movement of his eardrum.
It was not good again. This is the second one he has failed.
SO the ENT wants to admit him back into the hospital for a night and
do a “true” hearing test. We
check in Sunday, August 14th.
Monday morning they will put him under and check out his ears.
If it is just fluid, the ENT will put tubes in.
This way we will know exactly what is going on.
He will also do a bronchoscope to remove any scare tissue and the
granular tissue around his trach area.
We should be able to bring him home that day.
I
think that is all the new news. Have
a great week! Pam
July 17, 2005
Zane
had a rough night and morning. Through
the night we kept hearing him cry which is pretty abnormal for Zane.
He usually sleeps through the nights now.
The nurse kept saying that she was just suctioning his nose and
making him mad. Yada yada!!!
Anyway Trent got up at 7:00am to relieve the night nurse.
We knew we probably wouldn’t have a nurse for today.
Not long after she left, I still heard him crying so I went in to
find that his trach was out. It
must have been out for a while because I could not get it back.
I finally got the smaller one in.
I really thought we were about to rush to the hospital because it
took some force to get the smaller one in.
There was blood and Zane was crying and I was trying not to panic.
UGGGGG!!! His
saturation levels were great and his heart rate was a little high but
overall he did good.
ANYWAY
Zane is sleeping now and Trent took the kids to the water park.
All is quite.
Other
than that the week went well. We
had a Cranial-Facial appointment – Zane has to wear helmet 23 hours a
day. (He is very good at
making us feel sorry for him and we take it off.)
This next week we have a doctor’s appointment everyday. I
will need volunteers for kid sitters.
Monday
– Julie Davenport has already volunteered.
(THANKS, JULIE!!!)
OH
AND we have a new rule - If you are going to bring us food, you have to
stay and eat with us. Todd
and Laura Robertson with sweet Reid brought us some wonderful food and we
had a great time too!!!
I
hear buzzers so I better go – Have a great week!
Pam
July 11, 2005
Three
weeks today!!! It is very
exciting!!!! He is so cute!!!
Really… I am not just saying that because I am his mom!!!
(Isn’t it funny that mom’s don’t have it in them to be
unbiased? Some mom’s are
just better about not talking about it to others.
Obviously I am not one of those!)
Today
Zane’s speech therapist came. She
is working on his mouth muscles and she will eventually work on getting
him to eat. Last week we had
a doctor’s appointment for his thyroid.
Tomorrow his OT will come to work on getting him caught up on his
physical stuff like head control, sitting, rolling over, etc…
Wednesday we have a Cranial Facial appointment because his head is
flat. (But he is still
cute!!) He does have a helmet
to reshape it back to normal but that is a whole different doctor
appointment. (Thanks to the
Galbraith’s for the wonderful Texas Tech decals to make it a real
helmet!!!)
Zane
being home is so wonderful but still a little stressful on everyone.
Zach is being a little more irritable than his normal ill-tempered
self. Alexis needs a little
more attention. Trent …
uggg we won’t even go there!!!! (Heeheeeee-just
kidding, Trent!!) Jennifer
did come over tonight and took care to the kids for an hour or two so
Trent and I could go out to eat. (BIG
THANKS to Jennifer!!)
Love,
Pam
PS-I was quite amazed by how many people responded about wanting to stay on the list. I didn’t know that I knew that many people AND I am a little embarrassed AND I feel very blessed!!!
July 4, 2005
Hello,
ALL!!!
If
you want to be taken off the update list, please let me know.
Maybe I should actually say, if you still want the updates send me
an email. I don’t want to
keep torturing everyone with my babblings.
We
have had a wonderful week. Zane
is so cute!!! He is getting
spoiled too. Every time we
put him down he starts making noises.
I love that he can “talk” around his trach.
HE IS SO AWESOME!!! He
still won’t take anything from a bottle but we are still trying.
I have been able to turn his oxygen off for a couple of hours each
day. Sunday our day nurse
never showed up so Trent and I, both, stayed home from church and took
care of him. It was fun.
We rolled all his equipment into our bedroom and took a nap with
him. (The things we use to
take for granted.)
Zach
went with Grandma and Papa to Red River while Alexis stayed here to go to
VBS. Then both went to my
dad’s for 4th of July weekend.
They had a great time getting spoiled!!!
Trent and I had some time with Zane and some much needed alone time
with each other.
I
want to thank you all again for all the food, cards, phone calls, visits,
and prayers through all this. I
really really would not have been able to make it through all this without
all of you. From the VERY
VERY beginning when Jen, Erica, Mark, Steph, SheShe, Talley, and Tory all
sat in the waiting room till the wee hours of the night… to everyone
that kept my kids … to the girls that took me out to keep me sane … to
all the food … to the crazy van!!!!
… to the sweet bear and balloons that came for Zane the day he
got home. (Chels, Zane sleeps
with him.) I wish I
could express my feeling for you. I
want to hug every one of you. THANK
YOU!!!!
I
do feel sorry for Trent and the kids.
They are going to have to start eating the food I cook … all
three dishes!
I
love you!!! Pam
PS-Send
an email if you still want my silly updates.
June 24, 2005
Are
you ready for these updates to end? We
have been together for so long it is going to be hard to break it off.
Really… what mother wouldn’t like to have an audience for her
stories of her baby????
The
first week was… exciting!
Monday: We came home in our wonderful van. We didn’t have a nurse until the night but it was nice.
My mom was here and she took the kiddos out for several hours.
Trent and I were alone with Zane for the afternoon… OK OK Trent was
really alone with Zane because I took a nap.
HEEHEEE AND
Jennifer brought us food…mmmm!!!
Tuesday: Trent took the kids to the water park. The nurse and I organized all the supplies and equipment.
(THERE IS A TON OF BOTH!!!) I
believe Lexie and I made our third Wal-Mart run at 10:00 that night.
Wednesday:
Zane had his first pediatrician appointment.
He pulled his trach out right when the doctor came in.
My niece and nephew came for the night.
THEN the electricity went out for about an hour and a half. My mom, her hubby, niece, nephew, Alexis, Zach, Zane,
Nurse, Trent, and a partridge in a pair tree… all in the dark!!!
Thursday:
Everyone left. Trent’s mom
came and picked up Zach to take him to the Red River Encampment.
Lex is staying here so she can go to VBS.
Friday: Lexie and I were lonely.
Amy Smith came to visit and brought us some of her wonderful food!!!
OH
AND so far … all the horror stories have heard about home nurses have NOT
came true.
Have a great weekend!! Pam
June 21, 2005
ZANE
IS HOME!!!!!
Can
you believe it??? I can’t... Seven
and a half months later. (I
have to put the half in there, because it was a hard half month!!!)
·
19,353,600 seconds
·
322,560 minutes
·
5,376 hours
·
32 weeks
·
224 days
·
7
months, 12 days
AND
all 14lbs are home!!!
I
was not able to hold him for the first 2 months of his life so I am going to
make up for that now!!!
Pam
PS-If anyone else wants to help me hold him, you are welcome!!!
June 16, 2005
OK…
I am not going to say when Zane is coming home since I have jinx it too many
times already. PLUS I said I
was not going to say anything until they put us in the car and tell us to
“GO HOME”! SO stop
emailing me!!! I AM NOT TELLING
YOU THAT IT IS THIS MONDAY 6/20/05!!!!!!
Got it????
Yours truly, Pam
June 4, 2005
You
want the bad news, good news, or the excellent news first????
Bad
news:
Zane is NOT coming home this week.
I am going to stop saying that he is until they actually put us into
the car. (Next week
hopefully!!!!) We are waiting
for the insurance to get their paper work in order.
Everyone else is ready to go. VERY
IRRITATING!!!
Good
news:
WE HAVE MEDICAID!!!!! I
love my government!!! They were
able to override the clause that said we HAVE to be in a nursing home.