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 11^th. 

THANK YOU for all the prayers and phone calls.

Pam

 

March 31, 2007

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 60^th 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 Amarillo is staying with Zack and Alexis until Sunday and after that Pam & Trent will need your help again. 

Thanks, Aunt Debbie 

P.S.  Zane wanted me to tell Grandpa Happy Birthday!  

 

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 10^th but the “procedure” is not till Wednesday the 11^th.   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 1^st 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 14^th.  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

 

July 11, 2005

July 4, 2005

 

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.      You know… God has his plan BUT sometimes I think he likes to see me squirm first.   (For the people that know Bob McAfee, you need to ask him to tell you the joke that he told me!!!)

Excellent news:  The church … Well, not even the church… Mainly two classes at our church bought us a VAN!!!  AND not just a van… A 2005 TOYOTA SIENNA!!!!  It had 40 miles on it when we got it!!!  INCREDIBLE!!!  They surprised us at our class picnic.  It is amazing!!!  Really no words can communicate how we feel.    

I wrote a letter that Trent read to our class but I think it really goes to everyone…

 Marrieds Growing Together & Marriage Builders & Everyone else that was in on this,

In the past seven months, we have had so many things happen.  The night Zane was born was unbelievably scary and heartbreaking.   

We spent too many nights at the NICU waiting room praying for our precious son to make it through just one more night.

We would stay up all night waiting for the Blood Gas results. 

The joy we had when they finally started feeding him milk. 

The day Zane’s heart rate bottomed out and I watched Dr. Minnich give him CPR.

There were several times I would tell God that I am not strong enough or that I can’t do it any more.  AND every time He sent one of you.  All your emails, phone calls and cards are what kept us going night after night.  All the wonderful food kept us at the dinner table together.  The visits to the hospital kept us from feeling alone.  

You have already done so much for us that you will probably never know and we will never forget.  If it wasn’t for you, I know I would be a mess!!! 

Thank you all for the car, the food, the friendships, and for all prayers that kept Zane alive.  Thank you for your love and support that kept us strong.  

Trent, Pam, Alexis and Zach

PS-Toyota of Dallas is the place that helped out BIG TIME!!!  SO if you need a car, ask for David Kelley.  He even donated personally to the van.

 

June 4, 2005

Here is the latest…

I called our local Representative’s office (Joe Driver) and spoke to a very sweet Teresa.  They called DADS (Department of Aging and Disability Services) in Austin.  This department is the one that will be making a decision to override Rider 28 which says we have to go to the nursing home.  If they do override, we will be able to keep Medicaid. 

I got a call back from Teresa yesterday that sounded very positive.  They were going to do everything they could under these circumstances to make it happen.  AND She said they marked it with Legislative status which means they will work my case ASAP!!!  YEAH!!! 

NOW the good part… There isn’t any reason for us to stay in the hospital since we are NOT going to the nursing home.  We are shooting for Tuesday (maybe Wednesday) to come home!!!!!  We have to wait for insurance, equipment, and home nursing. 

Alexis and Zach are ready to have their brother home.   Pam

 

June 1, 2005

I was waiting to send out an update till I had either good news or a plan of action.  I have neither.

Truman Smith in Gladewater has declined to accept us.  “Zane is not stable enough.”  Our social worker, the church, and I have called several nursing homes but none can accept a trach / ventilator baby. 

We have contacted the lady in Austin to see what else we can do.  She advised us to fax her the rejection letters and she will see if there is they will accept us into the program without going to a nursing home.  It has never been done before so it does not look good. 

Crazy that he is not stable enough to go to any nursing home in Texas but we still can’t qualify for Medicaid.  The Jacob’s gave me the idea to call our local representative and see what he can do.  I will do that tomorrow.  I am taking any other brilliant ideas if you have any.

Zane had a cold over the weekend but is doing much better.  Alexis and Zach both held him today and they loved it!!!  They are also ready for him to come home.  I am trying to get more pictures on the web site… I promise!!!!  

Please pray for my sanity.   Pam 

PS – I want to thank everyone in the Brother’s Keeper’s class who made us food.   We are getting VERY spoiled because these women CAN COOK!!!!!  Thank you for taking such good care of us!!! 

 

May 20, 2005

I just finished my last 24 hour room in and I am ready for a nap.  Trent does his tonight.  SO if anyone wants to do a slumber party with the kiddos and me tonight, give me a call!!! 

I found out today that there is one other trach baby wanting the spot at Truman Smith in Gladewater.  (If anyone has a connection, we could use a good word to pick Zane.)  Truman Smith is sending a respiratory supervisor over Monday morning to check Zane out to make sure he is “stable” enough. (WHATEVER THAT MEANS!!!)  They are actually checking out both babies before they make a decision.  It might be Wednesday before we know anything. 

Tuesday was his discharge date, which is now out the window until this is all worked out.  I am very sad but I am trying VERY hard not to be stressed.  

I had so much fun taking care of Zane yesterday.  He is so interactive now.  You can get him to smile at you pretty easily or even make a noise around his trach.  I LOVE IT!!!!  

Jennifer … Do you remember Jen was one of his primary nurses at Presby?  She brought her daughter by yesterday to visit Zane.  Talley, Jennifer and I got to catch up.  Talley and I decided that we missed Presby a bunch!!!

I will email when I find anything else out!!!  Love, Pam

PS- Dr. Minnich, if you could call Truman Smith and use your power and charm to get Zane in, I would be VERY appreciative!!!   AND Dr. Green, if you could give Truman Smith a call and use your... ummmmm...  Nevermind... I will ask Coach Knight to do it.  HEEHEEEEE

 

May 18, 2005

Talley’s poem to Zane

The day you came was quite a day,

All we could do was cry and pray.

Our fears realized, for all we knew

A child was born, who was not due.

Three months too early, you did come.

Congratulations, you have a son!

First days, then weeks, and then months did pass

When would you go home, we all did ask.

Your first six months were full of pain.

We hoped the next wouldn’t be the same.

Friends and family were there for support.

Every day, awaiting “Mom’s report”.

They gave their time, and prayers and tears.

That helped reduce your families’ fears.

The giant mountains now look like hills.

We look forward to celebrating all the thrills

That will come to us through your live,

a miracle because of Christ.

OH Talley!!!  She makes me cry with her sweet qualities, support, humor, and all around selflessness.  I have been blessed to have several of these people.  I really would be a total and complete mess without them.  They have wrapped too tight around my family that I have no choice but to stand tall and keep moving!!!    I feel like the luckiest person in the world. 

OK… here it goes…  We are not going home on Tuesday the 24^th.  Instead we are moving Zane to Truman Smith Children’s Care Center in Gladewater, TX.  (This is about 20 miles east of Tyler = 2 hours east of Dallas)  We will be there for 4-6 weeks so that we can get all the paper work done for the MCDP waiver.  This will allow us to stay on Medicaid to help with medical bills. 

This has been a stressful decision since it is so far away and another month or so.  The benefits in the long run out weigh what we all will have to sacrifice for the next few weeks.  Anyway what are 6 more weeks to the 28 that we have already done???

We still have to be accepted into the Care Center but it is 75% a done deal.  We should know by Friday.

Thursday night, I will do my last 24hr room in.  Friday night, Trent will do his 24hr room in.   After that we will be free to go once all the paper work is done.  It could be the beginning of next week or the following week.  I will let you know when I hear anything.

Nothing like a big bomb shell, huh?  BUT look at it this way… this gives me 6 more weeks to work on Zane’s room/dinning room.  : )

Pam    “He will give his people strength. He will bless them with peace.” Psalms 29:11

 

May 17, 2005

7 DAYS!!!!

Incredible!!!  I have a long list of things I need to do before he gets here.

First, how do you turn your dinning room into a baby room with a dinning room table???  I am just not good with that kind of stuff.  I would rather work on the web site or a computer.  I need my sister here to do it for me.  (HINT HINT)

Second, I have been on the phone trying to set up all the supplies that we will need.  I get the respiratory stuff from one company, feeding equipment from another, stroller (High tech… it looks more like a rollercoaster car), handicap sticker, nursing, and on and on…

Third, I am trying to get all the kiddo’s, Talley’s, and my doctor appointments in before get the 24^th.

Forth, I am trying to figure out a way to stay on Medicaid.   UGGGG!!!! 

I GOT TO GO!!!!!  Love you all! Pam

 

May 10, 2005

14 days and counting!!!

Zane is doing wonderful.  He is such a cutie and I can’t wait for all of you to see him.  (You know you are welcome to come to Our Children’s House to see and hold him, right?  He loves being held!!)  They are trying to get a custom trach that will allow him to move his head around easier.  Currently he likes looking to the right.  When you push his head to the left, it will spring back.  PLUS his little head is flat from only lying on that one side, so we might be getting a helmet to help round it.

I did my first 24 hour “test” Sunday night after the shower.  The most sleep I got at a time was 2 hours.  I had to feed and give him medications every 4 hours and breathing treatments every 3 hours.  I am still trying to catch up with my sleep.  Once we get our home equipment in, Trent and I will have to do a 24 hour “test” each. 

We had another conference today.  It looks like we will have 24 hour nursing for 1 month and 12 hour nursing after that.  I am a little disappointed.  Lexie and Zach require a lot of attention and I am worried.  Maybe it will be easier that what I am expecting.  (Have I mentioned that I am looking for a part time job that I can do from home in my spare time???)

Thank you so much for our shower Sunday night.  It was so awesome.  We counted about 25 to 30 families that were there.  I feel so blessed to have such a support group around us for so long…  For 6 months we have had non stop visits, phone calls, emails, babysitting, food, prayers, and friendship.   I cry every time I think of what all everyone has done for us. It is truly amazing. 

Have a great week.  Pam

 

May 5, 2005

Is it Happy Cinco De Mayo or Merry Cinco De Mayo? 

ANYWAY…  YEAH Cinco De Mayo!!!

Alexis had her Sunshine School program today and it was VERY cute.  She was a flower and had the BIGGEST grin on her the whole time.  It was SO funny. 

Alexis and Zach went home with her friend Kendyll to spend the night and then they are taking them to Abilene to get further spoiled by more grandparents.  Then “Grandma and Grandpa with Dakota” will bring them home in time for Zane’s shower at the church.  They had a GREAT time in Amarillo with “Grandma with PaPaw”.  Thank you so much for keeping them for so long!  OH and thank you Lori for taking them to feed the ducks… They are still talking about it.  Thank you, “Grandpa with Brook and Michaela”, for keeping them for the weekend… Sorry about the throw up in the car!

OHHHHH Chelsea, you have been a lifesaver with the kids.  Thank you so much for being so sweet and coordinating every thing!  Someday! Someway!  I will be able to repay you.   

The food, the food is so wonderful!!!  Thank you EVERYONE for the food.  9:00pm tonight we had not eaten and instead of starving we pulled out brisket, green bean casserole, and homemade peach cobbler.  MMMMMMMM 

OK OK now to Zane…  He had a swallow study yesterday.  This is where they put something in with his formula and Xray him while he swallows.  He passed!  Now I can give him a bottle once a day for 15 min with NO supervision.  He only takes about 5cc at a time.  30cc=1oz 

Zane had a hearing test today that did not turn out so good.  I am taking it as there was fluid in his ears and we will check back in few weeks. 

We are getting closer to home with a projected date of May 24^th.  My plan is NOT to go past that date.  (Have you noticed that the doctors don’t really pay attention to my plans?)

I feel like I am babbling now so I will go to bed.       Love you!  Pam

 

May 1, 2005

HELLO ALL!!!  How are you doing?  We are very good!!!

We had our Tuesday conference and our goals to go home are:

1. oxygen under 35%

2. blood work back to normal

3. Trent and I trained  (I have to do 2 – 24 hour room in and Trent has to do 1 – 24 hour room in.)

4. Home nursing in line and ready to go for when we do come home.

Progress as of Sunday:

1. oxygen at 31%

2. blood work is good.

3. Trent and I are 97% finished with our training.  I am ready to do my 1^st 24 hour room in.

4. Home nursing – I don’t know… I will check tomorrow with the case worker.

VERY EXCITING until I start thinking about it too much than I get VERY NERVOUS again.  (I can hear my dad now… “Don’t think about it and you won’t get nervous.”  OR would that be my husband???  I don’t know … they both are about the same.)

OH OH OH Another thing that happened as Trent was driving to the conference on Tuesday… YES He was hit from behind and the guy took off.  UGGGG!!!   3 wrecks - 3 uninsured motorists - 3 weeks

Kids are coming home tomorrow finally!!!  WE ARE MISSING THEM TERRIBLY!!!!

I think that is all.  Talk to you soon.  Pam

 

April 25, 2005

Long time no talk!

I am sorry it has been so long but I feel like I mainly give an update on us (the NON-hospitalized) than Zane (the one yall really want the info on).   

I will start with Zane… He was doing very well today.  His breathing was comfortable.  His oxygen level was at 38% all weekend.  They really don’t worry about it until it is over 40%, BUT I believe they want it around 30% before coming home.  He had a great blood gas this morning, which is always good.  OH AND Zane is officially in double digits… 10lbs!!! 

We have a “Care Conference” tomorrow afternoon with all the people.  I am ready for tomorrow because they are all forced to sit down and talk to us.  I was VERY spoiled at Presby.  I had access to a doctor all the time if I wanted to discuss anything. I have seen the pulmonologist once since we moved.  The nurses spoiled me big time too at Presby!!!  Trent and I have had run-ins with two nurses already, and we have only been there a little over two weeks.  

My sister (Debbie) came this weekend and took the kids back home with her.  My mom has them now in Amarillo for a week.  (We will see if Zach gets sent home early.  HEEEHeee  Poor Zach!!)  I miss them terribly!!! 

Our church is on their second rounds of food.  They are spoiling us too!!!  (Courtney sent Beef Stew, French bread, Cheesecake, and Banana Bread mmmmmmmm)

Have a great week!

Pam

PS – Sorry, Courtney!  I just couldn’t resist.  Everyone will ask what you brought anyway.  : )

 

April 14, 2005

Hello, All!

I haven’t been very excited about sending an update the last few days.  I hate sending yucky news all the time.

Zane is working very hard to breath.  His head bobs up and down for every breath.  It is so hard to watch him struggle and know that there isn’t a thing I can do to help.  He breaks my heart. 

We had a care conference on Tuesday with the Pulmonary doctor, Nurse Practitioner, RT, Social Worker, etc…  He said at the best Zane might be home in 6 weeks but his guess would be closer to 3 months.  1) Zane is still VERY sick.   2) Home Nursing has to be set up which is a big battle with the insurance.  3) Trent and I have to be completely trained. 

Tomorrow they are doing a bronchial scope thing (I am an IT person… Not a medical person!!).  This will find out if there is something else going on that we don’t know about.   This will be at 7:30am and Trent will be with him when they do it.  It really doesn’t sound like something I want to be there for. 

There is a possible chance that they want to put him back on the conventional vent instead of the home vent to see if that will make him more comfortable.  BUT this means we will have to go to the hospital.  AND not MY Presby hospital with MY nurses and MY Neonatal doctors that I love so much.  UGGGG we would be going to Children’s hospital at Baylor with all new doctors and nurses.   I am not good with change!!!!

Thank you all for sticking with me through all this.  When I get down, all I have to do is come to my computer and read emails you send.  It always lifts me up.   

I have another request… I really don’t want to wear out everyone with my kids so I am going to make a list and a schedule for my kids.  If there are any volunteers to keep my kiddos, please email me back.  If it would be easier for you to pick them up after Sunshine school and keep them for an hour or two, just let me know that too. 

Keep praying!!

Pam

PS-Lexie has requested to go to Luke’s house with Luke’s mommy.  (Jolie, do you have a day free?  She loves you!!!)

PSS-Courtney, I will never turn down food from you!!!  Thank you so much!!!  Monday or Thursday is good.

 

April 10, 2005

What a crazy few days we have had. 

Zane is alright.  His oxygen is back up to 60% and they are not being able to wean it.  Trent stayed the night with him Friday night and he said it was better than my night with him.  BUT when I spoke with the nurse, she said Trent didn’t get much sleep.  We have found a couple of really nice nurses.  THANK GOODNESS!!!

Several couples came over Saturday to help us get the house ready.  We got so much done.  I am very impressed. THANK YOU!!! PLUS Chris’s cousin came and laid the carpet for us.  (Info at the bottom)  Thank you, Jana, for all the JCPenny stuff.  We would have never been able to get all that done by ourselves.

I went up to the Children’s House after everyone left to play with Zane.  On my way home, I was stopped at a red light and a guy in a truck hit me.  I am alright but my car is not so good.  He took off and I chased him.  I was able to get his license and a police report.  Of course the guy didn’t have any insurance.  What else could happen???  Well I shouldn’t have asked that BECAUSE I got hit again tonight on the way home from the hospital.  I am fine again but now my car is really really messed up.  So if you see me driving my poor car, DON’T LAUGH!!! 

If you know of anyone in the car business, we might need to get one.  UGGGGGGGGG!!  Pam  

April 8, 2005

I stayed with Zane last night and it was absolutely horrible!!!  The buzzers went off at least every 30 minutes.  The RT nurse would come in to give his treatment every 4 hours.  Another nurse came in to start his feedings every 4 hours but for some reason he would do it right when it was quite.  Then he would come in again an hour later to turn it off.  I had to talk the blood pressure/ temp nurse out of changing his diaper every hour.   UGGG   (I want My Jen and My Faye back!!!)

And THE BUZZERS THE BUZZERS ~ THE HORROR THE HORROR

OH but for some reason every time his vent popped off his trach, they never came running.  This is definitely going to take some getting use to.

OH OH AND THE BED… NO, not a bed - a chair that is even worse!!!  It is plastic and the sheets don’t stay on because they slide right off.  AND it is too short!!! 

Poor Poor Trent!  He is staying up there tonight.

THANK YOU, ANNE, for keeping my kids so I could sleep. 

Love from Grumpy Pam (with a headache) who wants her NICU back!!! 

PS-Today is Zane's 5 month birthday 

April 6, 2005 

It looks like we are skipping the Garden Room and moving straight down to Our Children's House at Baylor.  Right now the move will take place tomorrow Thursday the 7th, which is one day shy of 5 months in the NICU.   After 150 days, you would think we would be ready to get out of there, but you get so attached to the doctors and especially the nurses.  I already had to say good-bye to one of Zane's primary nurses and it was so hard.

Here is my schedule and schedule for the kids:
    Thursday: 9-2 Sunshine school  - Zane gets moved 
    Friday: 
    Saturday:  Church people helping us get our house ready
Sunday:  We will take the kids down there.
Monday: 9-2 Sunshine school
Tuesday:  Anne Tamplin

Wednesday:  SheShe