|
Tuesday, October 5, 2004
1:45 a.m. Ava got her Angel Wings and has gone to Heaven. Jeff and
I were with her through this journey to the end. She was a fighter and has touched so many people's hearts. She
is now free of pain.
Monday, October 4, 2004
When I walked in the ICU unit and saw the many doctors around my baby I knew
something was wrong. They told me that they would need to start dialysis to help her urinate. They also said
they had all the critical care doctors on her and she is being monitored closely. To start the dialysis she would need
to be ventilated. When I signed the consent form and saw the words, "Acute Kidney Failure" I knew this wasn't good.
I called Jeff immediately and said to come now that it wasn't looking good. He came and we were with her all day and
night and family came this evening to see her but by the time they came she needed to be ventilated so they didn't get to
see her before. Around midnight they started the dialysis and the first round didn't work, they had to try again a couple
of hours later and when they started the second time around Ava decided she couldn't take anymore.
Sunday, October 3, 2004
Today Ava was transferred to the ICU unit at TCH because her urine output has
been very little and isn't looking good. She hasn't been her happy self and has been very fussy.
Sunday, September 26, 2004
It's Ava's 8-month birthday today and she's spending it in the hospital.
Gosh, it's almost the end of the month and we have been in the hospital all month except for 3 days. The liver
transplant team is telling us to make this our home in the hospital because they want her to stay there until a liver
comes available. I'm guessing they think a liver will come available again very soon since there were two that they
had to turn down in August while she was on hold and then the other came up three days after she got back as active on the
list and that one was too big. They are treating her for ascetis and monitoring her very closely because she also have
labor breathing and grunts allot. I think she's getting to the point that she's just a very sick little girl
that is waiting for someone to give her that gift of life. It breaks my heart because I can see it in her eyes
that she's sick and wants to feel better. I pray for her to feel better every night and that someday she'll be able
to live a happy and normal life very soon. I know God has a plan for her and he will make sure she gets that special
gift for her to live a normal life.
I'm back at home with Nicholas and boy did I miss him so much.
Today we spent a lot of quality time together. Everyone asks how is Nicholas taking all of this? He
is actually more spoiled than before. He gets one on one attention from Jeff and I because one of us is always
with him and the other is will Ava in the hospital. We also have been doing special things with him, letting him
know that he is just as special as Ava.
Until next time....
Monday, September 20, 2004
Back to the hospital. Ava has been very fussy and irritated since we brought
her home on Thursday. I was thinking it was because of the flu shot she got but she didn't change. Dr. Berhane
order an ultrasound and an X-Ray. X-Ray showed unremarkable and the ultrasound showed she did have more ascetis in the
belly, it also showed a cyst on or near the bladder. The Radiologist said it looked like no cancer. Dr. Karpen
wanted us to come to Houston to get admitted. One horrible day in the ER. We are actually in the same room
that we were in back in Ausgust.
Thursday, September 16, 2004
We're on our way home today. She's on TPN 24 hours and her weight is almost
16lbs. She's my chuncky monkey.
Wednesday, September 15, 2004 Anna's version:
Everything seemed to be normal, hoping Ava and Daddy will be home this afternoon
when Nicholas and I get home. I took Nicholas to school and came into work. It was about 9am and was talking to
Dr. Berhane (Austin GI) updating her on Ava's condition with the ascetis and blood in the stool. She was telling me
that at this moment we need to pray and everything is in God's hands. As we were talking my cell phone was on my desk
ringing so I picked it up and hung it up - it rang again I thought gosh I'm talking to the doctor so I picked it up and hung
it up again and kept talking to Dr. Berhane. Well my second line was ringing on my landline phone and said, "Dr. Berhane
someone is trying to get ahold of me can I put you on hold?" I picked up line 2 and it was Lisa the transplant coordinator
saying, "hi Anna it's Lisa" I thought she was calling to tell me Ava and Daddy were getting discharged today and we
needed to talk about her discharge. Well, she proceeded to say, "We have a liver for Ava" I'll felt to my stomach
at the same time having a burst of joy all at the same time. I said Ava and Daddy are still in the hospital and she
said yes she had been trying to get ahold of them in the room and I said oh they might have just stepped out to get a cup
of coffee, please please don't give the liver away. hee hee. She said for me to take it slow getting down here and pack
lots of clothes and bring the white transplant binder but that the transplant will not happen until late tonight if it did.
I got off the phone with her and said oh my gosh, Dr. Berhane is still holding on line 1. I got Berhane back
on the line and said you won't guess, they got a liver for Ava. She was so sweet and said see we were
praying and that they will pray for us in the office. I got on the road to home and packed lots of stuff and
heading my way to Houston. I called Yvette immediately because she would have to take care of Nicholas
but after talking to her she said that she didn't want me driving to Houston by myself that she was going with me
and that David would take care of the kids. We got to Houston and the waiting started for me. We
were told that the liver is somewhere in Texas and that we wouldn't know anything until late tonight.
Around 5ish I couldn't hold out any longer so I told Jeff I thought we should call our families and tell them but
that it could be a false alarm and the liver would not be a perfect match. I called my family and they came
to be with us no matter what kind of news we would get I wanted my family with me. Well, at around 8ish the phone rang
in the room and I picked it up and it was Dr. Abrams saying hi mom I've got some news I thought she was going to say
we'll be by to pick up Ava in a couple of hours but the next sentence was well it's news you don't want to hear, the
liver is too big and it's too big if they split it too. As I heard those words I was shaking my
head no and everyone around me was just looking at me. All those emotions of excitement and joy and scare
all went down the drain. I guess this is the trial run and the liver wasn't for Ava. I heard that a
much bigger boy got the liver and this was for him and his family. I'm happy that someone else got to share those
emotions that we were hoping to share. I know Ava will get the perfect one for her in due
time. The waiting continues.....
Wednesday, September 15, 2004 Jeff's version:
Well talk about one crazy week. Ava and Daddy are still at Texas Children's.
Her ascites is under control with the diuretics. She had a small amount of blood in her stool, so Ava was scoped yesterday
and she did have a minor case of esophageal varices. They said that her veins are stressed but only 2 areas were actively
bleeding a small amount and that accounted for the amount in the stool.
We were supposed to be discharged today(Wednesday)and
the phone was ringing in the room and my cell phone was going off but I had my hands full trying to suck some congestion out
of Ava's nose.
The doctors come in and I'm about to ask if we're going home today and they said "Not today, we got a liver!".
That was the last thing I expected to hear because I was just worried about going home and it took me off guard.
They are
flying up to take a look and the big issue will be the size. We are prepping Ava for her gift, hopefully. Ava's PELD score
was adjusted just yesterday and was increased to 20 and they told us that she is at the top of the list for her blood type
and they felt it wouldn't be long but talk about a lot to digest in a short time.
Anna is on her way up here and hopefully
we will get the word that it is a match and we'll be onto the next step(sitting around for 12 hours during the transplant.
Talk
about nerves! We will be waiting to hear from the docs and hopefully Ava will be crossing this hurdle later today.
We will
keep everyone updated as much as possible and please pray for us, Thanks. Jeff
Tuesday, September 14, 2004
The endoscopy was done this morning and they found the bleed coming from
the esophagus and sealed
it off. They also saw that her stomach lining was I guess irritated and put her on Prevacid 3 times a day. Yesterday
when Jeff spoke with the surgeon, dr. karpen and lisa the transplant coordinator she said during the time ava was on hold
two livers came available but they had to pass them up so they are thinking it will be very likely that we'll be getting th
call very soon.
Monday, September 13, 2004
We did not get to come home over the weekend. She tested positive for blood
in the stool, just another sign of further liver failure. They are keeping her to do an endescopy which will be scheduled
for sometime tomorrow. I expect us being in the hospital for the next couple of days. The good news, they were able to treat
the ascites (fluid) in her belly by giving her diuretics.
Friday, September 10, 2004
Tomorrow is the D-Day for Ava being back as "active" on the list. We'll
be on pins and needles waiting for that one phone call. Please keep our precious little Babyava in your thoughts and
prayers. Until next time.
Wednesday, September 8, 2004
Well we had a clinic visit at Texas Children's
and weren't expecting to stay, but foolish us! Ava's belly was a little bigger leading up to Wednesday's appt and after an
ultrasound confirmed a moderate amount of fluid, Dr Karpen admitted us and we'll be here until it's under control. We were
shocked yesterday when Dr Karpen asked us if we had discussed who would be willing to be a living donor.He told us to talk
about it and for one or both of us to decide who will undergo the testing. Before yesterday, the living donor subject was
always brushed aside and we were told to hold off on even thinking about it until that time comes, if it does at all. Well
reading between the lines, Dr Karpen is getting us ready for the possibility of a donor liver not being available and if Ava
continues to struggle with all the infections, ascites, etc., I will undergo the testing and hopefully match up to her. I am staying with Ava Thursday and Friday and Anna is relieving me for the
weekend duty and then I'm coming back for the early part of next week and hopefully we'll be discharged by then. As long as
I get Sunday off for the start of the NFL! Are you ready for some football?
Jeff
Friday, September 10, 2004
Tomorrow is the big day, she goes back as "active" on the list. We'll be
on pins and needles waiting for that one phone call. Please continue to keep our precious little Babyava in your thoughts
and prayers. And we're crossing our fingers we'll be able to come home from the hospital this weekend. Until next time.
Wednesday, September 8, 2004
Well we had a clinic visit at Texas Children's and
weren't expecting to stay, but foolish us! Ava's belly was a little bigger leading up to Wednesday's appt and after an ultrasound
confirmed a moderate amount of fluid, Dr Karpen admitted us and we'll be here until it's under control.We were shocked yesterday
when Dr Karpen asked us if we had discussed who would be willing to be a living donor.He told us to talk about it and for
one or both of us to decide who will undergo the testing. Before yesterday, the living donor subject was always brushed aside
and we were told to hold off on even thinking about it until that time comes, if it does at all. Well reading between the
lines, Dr Karpen is getting us ready for the possibility of a donor liver not being available and if Ava continues to struggle
with all the infections, ascites, etc., I will undergo the testing and hopefully match up to her. I am staying with Ava Thursday and Friday and Anna is relieving me for the weekend duty and then I'm coming back for
the early part of next week and hopefully we'll be discharged by then. As long as I get Sunday off for the start of the NFL!
Are you ready for some football?
Jeff
Friday, August 20, 2004
We got to go home from the hospital today, after spending the entire week there.
She had a urinary track infection along with a blood infection which most likely had come from the central line. They
had to take the central line out that TCH put in on the 8th and Dr. Sanchez put in another central line on Wednesday so we'll
see how this one goes. I'm thinking positive thoughts and this one will work. The only bad thing with these central
lines is they get infected easily. Come to find out Ava has reflux in the kidneys, they wanted to test her
for this because this is her second UTI in 2 months and yes it came back positive for reflux so this means another
specialist visit. We asked to see Dr. Seremitis, the urologolist because we knew him from our experience with Nicholas.
He says it's a stage 4 which means she may need surgery in a year or so if it doesn't correct it
on it's own with meds. WHAT'S NEXT? TRANPLANT!!!! We're praying. We are on hold status
with the listing because of the infection but we'll be back to active status on September 11th, what a date....something good
has to come out of this date so we'll crossing our fingers that we stay in the active status until transplant.
Saturday, August 14, 2004
Today was a trip to the ER, Ava was real fussy and running a fever. Yesterday,
I took her to get her 6 month shots and she got 5 of them...poor little girl. So this is why I thought she might be
running the fever but we can't take any chances with her. Got to ER and they ran blood tests and it showed that
she does have an infection, maybe from the central line because it started to swell at the site of the line so we got admitted.
Wednesday, August 11, 2004
IT'S OFFICIAL -- SHE'S LISTED and her PELD score is an 18. The coordinator
says to have our bags packed and be prepared for a call. It could be days, weeks or months to get the call.
Tuesday, August 10, 2004
Discharged today but was late, they couldn't get blood out of the line so they
had do another test and also her blood sugars were not looking good so they are sending us home a 20 hour schedule with the
TPN. The repeat ECHO was done on Monday and we should be knowing something soon about her getting on the list.
Nurse was out tonight to hook her up and will be out tomorrow night to do more extensive training on how to care for the central
line. She looked bigger but more swollen to me. I guess it's all the fluid she's getting that's putting on the
weight and that's what we want. She's now 13lbs. Hooray!
Thursday, August 5, 2004
Surgery was done to get the central line put in for TPN. Everything went
well and we'll be in the hospital until next week.
Wednesday, August 4, 2004
Today's appointment went...it was long and very tiring. The echo was done but
they are saying she is going to be further tested on her heart before she's listed. They're taking precautions because they
don't want to get in there to do the transplant and have any surprises on her heart since she does have a heart condition
too. Her weight is the biggest concern right now and since she's got the feeding tube she's gained very little. She's admitted
to put TPN (Total Parenteral Nutrition) in hopefully tomorrow. They say to expect to be there through the weekend. Jeff is
going to stay until I get off of work on Friday and then I'll go to Houston to be with her and relieve Jeff. The good news,
they took blood and the liver numbers look good, they actually are better then they have been since her Kasai - liver surgery.
Monday, July 19, 2004
After sending an email to Dr. Karpen about Ava's feedings and her belly looked
a little big and hard, he wanted us to get an ultrasound done so we took her in and ultrasound came back normal, no ascites.
Also, Karpen wants to speed up the listing process. We have an appointment on Friday all day to start the tests, unfortunately
Jeff will miss out on the rehearsal for Alex and Kyle's wedding but Aunt JenJen will take care of Nicholas and get him fitted
for his tux and take him with her to the rehearsal. We should be back in S-burg late Friday to catch the end of the
rehearsal depending on how things go in Houston. Until next time.
Thursday, July 15, 2004
Tonight with the feeding tube and pump went well after a home healthcare nurse
came out to demonstrate how to use the damn thing. We had just a hard time last night trying to figure out how to use
the pump but now things are going good. The pump and formula going through the tube is going fine. Hopefully and
praying for some weight gain. Until next time.
Tuesday, July 13, 2004
Today the doctor's decided to go ahead and put a feeding tube in because of her
weight. Dad took her to the hospital and they had to do it there because it's a tube that goes directly into her small
intestine so that it by passes the stomach for sake of vomitting. We're also changing her formula back to the Pregestimil
because the Alimentum is not working and it's giving her diarrhea and a bad rash. She's also been sleeping alot but this may be due to not getting enough nutrition and
teething. Until next time.
Monday, July 12, 2004
Kady's first day with Ava.
Sunday, July 11, 2004
Ava was running a low grade fever due to teething but we had to take her to ER
so they can draw blood to rule out any infection. Fever was due to teething -- got to go home. Her two bottom
teeth are peaking out.
Friday, July 9, 2004
Got some bad news. My mother was
coming from La Grange everyday and Wednesday night she decided to stay the night with us and as she was getting out of
the shower she fell and broke her wrist in two places, fractured a bone in her leg and cracked her kneecap. She's home now
and recovering but she has got all those good pain killers those docs dosed her up with. Please pray for a quick recovery
for my mother. On the other hand, luckily after a couple interviews I got a call last night of the girl that I really
liked, Kady, she said she'll take the position. She'll come over Friday night to meet with Jeff and Nicholas
and will start on Monday. I hope this works for us. I weighed Ava yesterday and NO WEIGHT GAIN again. The
dietition in Houston said lets try Alimentum and see how this works, so we'll see how the weekend goes and go from here.
I really don't want to tube feed her but if we have too I will. Jeff is home with Ava today having another father/daughter
day. Good for both of them. Also, Jeff is taking Nicholas to the circus this weekend and Aunt JenJen will be coming
down Saturday to go with me and Ava to look for her dress for Alex's wedding. Girl weekend/Boy weekend.
Monday, July 5, 2004
Today is the day Jeff went back to work since he's been home with
Ava for 2 months. I'm sure it was hard for him leaving his baby girl. I stayed home and did some interviews on
someone to come into the home to help us with Ava since the doctors recommended us not putting Ava at Barbara's because she
has 3 other boys. I interviewed Kady and loved her. She's a 19 year girl who was a nanny for several other families
and her parents are foster parents so she has helped care for over 80 foster kids. Of course I can't pay her what she's
asking so she said she'll have to discuss it with her husband and get with me later in the week. I talked to another
candidate and didn't feel the same way as I did with Kady. The search will go on for now. Ava had a good day.
She is still so picky about eating, she's just not interested. We're thinking it might be the taste of the formula and
we have also started cereal and sometimes little ones will decrease their appetite after starting on cereal. She's
so cute spitting it right out, more of it actually lands on her bib instead in her belly. Nicholas is with Granny, Auntie
and his two cousins, Alex and Byron shopping at the mall today. GOOD LUCK to you all, you are brave!!! They brought
him home and they said he was actually a very good boy, yea right. I think they said that to make me feel better.
Love you all, thanks so much!!
Wednesday, June 30, 2004
We started cereal and of course she spits it out. She has
to get used to something different than the sucking she's been doing with the bottle. She is so cute with that little
tongue sticking out.
Tuesday, June 29, 2004
Today was our second appointment
with the transplant team in Houston and everything went well. SHE'S GETTING LISTED -- HORRAY!! I never thought I'd be
so happy to say my child is getting listed for a transplant. The listing process will take several weeks before she's
actually on the list. They basically have to go through allot of red tape. Dr. Karpen also said her weight gain
is not were they like to see it. She is only 12lbs and he has basically told us to do whatever it takes for Ava to gain
the weight or else he'll have to put a feeding tube in. I really want to try to all other options before we resort to
a feeding tube. It's really not a bad thing, I just hate to go this route, it seems like we're be going backwards instead
of forwards. We will start cereal tonight and see how she takes it. Dr. Karpen also recommended we should not
put Ava in homecare with other children. She shouldn't be around other children because of her illness. Our original plan
was to put Ava in a homecare but the lady had three other boys all under the age of 18 months. Jeff and I both were very
skeptical about putting her here but I felt comfortable with the caregiver. Also, she had experience with specially needed
children, she had experience with feeding tubes, double diaper, etc. So we will be discussing the pros and
cons from me quitting my job to going part time losing my benefits -- INSURANCE or having someone come into the home to help
us. Our next appointment in Houston is Aug 4th.
Tuesday, June 15, 2004
Well, yesterday labs were drawn and we got the results back today.
Not good news. Her LFT (Liver Function Test) and Bilirubin numbers are up high again along with her white blood cell count
are up too, all indications that she still has an internal infection. We were told sometimes this cholangitis infection will
hang around for a long time and show no real sickness on the outside. The good news is that she has actually started to eat
more and has not run any fever. Jeff will taking her back to the hospital today to get the PICC Line taken out and reinserted
for us to administer more antibiotics in hopes to kill this nasty bug. As soon as I get my hopes up and things getting back
to as normal as they can things change.
Keep those prayers coming our direction.
Wednesday, June 2, 2004
Our appointment with the Transplant Team went really well. We were
very impressed by the care that we received, from meeting the team to Ava's evaluation to touring the hospital. Dr. Karpen
recommended that it's premature at this point to list Ava as she would only have a few points. Our main concern at this time
is nutrition and letting her immune system grow and develop before transplant. She is only 11 pounds right now and gaining
slowly, so we just need to focus on her weight gain, which we have been doing anyway. They want us to extend
her IV antibiotics another week, to have a 21 day administration and we will continue to see our GI here in Austin
as Dr Karpen has been keeping up with Ava through phone consultations with our GI . We will see
Dr Karpen again in 3 months unless something unexpected happens and just continue to followup and do the labs with Dr Berhane
, here in Austin. Other than the slow weight gain,the hardened liver and the bili numbers rising slightly, she is not miserable
and is happy and smiling all the time and her quality of life right now is as good as it probably could be for a 4 month old,
which is another reason that she doesn't need to be listed, yet. But we all know that that could change quickly and we're
used to the stress now and have accepted this lifestyle and will do whatever we have to do for "Baby Ava".
As things come up I will keep you posted and thank you again for your thoughts and prayers.
Sunday, May 23, 2004
Our first trip
to the ER. After coming home from church Jeff picked her up and said she felt
hot so I took her temp under the arm and it was 101.8 so I took it from the hiney and it was 103.8. Call the doctor on call and he said to meet him in the ER. Jeff
took Ava down there and they had a room and her file ready for her when he got there, started IV fluids and antibiotics, some
results came back later in the day showing she did have an infection but now they are trying to figure out where the infection
is coming from. They say to expect to be in the hospital for at least 2 days
or more depending on what they find. She is still eating and doesn't seem to
be sick.
Monday, May 10, 2004
After the appointments with Dr. Sanchez (Surgeon) and Dr. Berhane
(GI), we have agreed to schedule an appointment to see the Liver Transplant Team in Houston and that appointment is scheduled
for June 2, 2004. The doctors have also decided to switch her formula back to Progestimil with an added supplement.
They believe doing this will help her liver work a little better and the numbers with go down. But if she doesn't take
it good or if she doesn't gain or lose the weight, Dr. Berhane said we'll switch back to Lipil formula.
Monday, April 26, 2004
Ava had the Kasai at 3 weeks of age and we hoped that since
they caught the BA so early that it would be beneficial for our situation.
She is 3 months now and everything was looking
good as far as weight gain(up to 10 1/2 pounds), no fevers, bili levels dropping, etc. But with that there were many colorless
poops, the doctors were also concerned because her liver was staying hard and now her spleen seems to be enlarging also. Although
there is no ascites or hypertension, which is good.
Now her blood levels are going back up(total bili 5.6 from 3.2)with
another lab in 2 days. Her AST AND ALT are also elevated and going up. Basically, yesterday the doctors started preparing
us for the fact that it appears that our Kasai is not taking and a transplant will definitely be necessary in the near future.
We
had hoped that we would have many years to prepare for this or that the Kasai would help out and prolong everything but that
doesn't appear to be happening.
In the next few weeks, we will probably be heading to Houston to meet with Dr Saul Karpen
and the transplant team at Texas Childrens- Houston, who will be meeting Ava and beginning our relationship with them.
She
is still on ADEKS, Vit K, Liqui-E,Augmentin, Orapred and Ursodial. Daddy is staying home with her for 3 months, as Mommy's
maternity leave just ended and then we'll go from there. Other than that, she's a happy, content baby who sleeps well and
is not fussy and is a delight to all.
We'll let you know how the next month goes and talk to you later.
|
