Archive | November, 2009

Back at CHW

Well, Gabi is back in the hospital.  At home, her O2 sats fell into the low 70’s/high 60’s, which is really low.  She caught a cold and was all stuffed up.  I called yesterday and they told me to drive her up.  She is on O2 and they swabbed her for viruses.  She is doing OK, but certainly plenty crabby. Dr. Hagan said this COULD be a short stay, but they said that last time.

Her glenn is still scheduled for Dec. 17th.  I am going to ask them if there is any way to do it sooner.

Sorry for the lack of posting.  Gabi didn’t sleep much at home, so I was a bit tired and busy.

Love,

Teri

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OOPS!

Well, I figured out why she was loosing weight.  I was mixing the formula wrong.  A big oops.  At least I figured it out, right?  She has a special recipe that I have to mix up to give her additional calories and I totally screwed it up.

Just overnight, she already gained back 40 grams, even though I felt like she puked the entire night.  She is up to about 6.6 kilos, which is about 14.5 lbs. She is a little peanut barely making it into the 13th percentile. I am so used to my kids being above 80th percentile.  She will be our petite little girl.

We are hosting Thanksgiving with my mom, sister and dad, so it will be very busy here.  If I don’t post before then, Gabi is doing fine. ANd I hope everyone has a wonderful and very blessed Thanksgiving!!!

Love,

Teri

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Still home

WOW!  It’s been a long time since I posted.  So sorry.  We are doing great.  A little tired, a lot crazed, but it is wonderful being home all together.  Gabi is just so happy to be here.  She is so smiley and getting so active. Her sats are maintaning well between 75-80 and she has lost a little weight (shhh!) If I call it in, I know the docs will totally freak out, so I am giving her another day or so.  I know she is doing fine…I know her so well by now.

Because she is on continuos feeds throughout the day and night, her tummy is quite sensitive, which means we don’t get much sleep around here. After the glenn, I am hoping that will get better. That’s what I have been told anyway.

The glenn is still scheduled for Dec. 17th.  They say the average stay for the glenn in the hospital is only 5-10 days. But they said for the Norwood (first surgery, it would be between 4-6 weeks and we more than tripled that! So, to not let ourselves down, we are just expecting another month stay.  Which is not bad!!

Thanks for all the thoughts, prayers, good wishes.  We are all doing great.  The kids ADORE her, much more than I thought.  Her leaving for the Glenn is going to be very difficult for them.

I can’t help but anticipate another emergency.  But we’ll get through, whatever each day brings for us.  We are just so blessed to have her here at all. She has certainly beat a lot of odds thus far.  She is one tough cookie.  I know God has big plans for her.

Love,
Teri

Thomas loves his baby sister

Thomas loves his baby sister

So happy

So happy

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Rough night, but doing great!

Gabi is doing really well. She was a little shell shocked yesterday when we got home and Marissa and Thomas were smothering her with kisses. I wanted to say…don’t touch her!!  I just don’t want her to get sick.  She was up quite a lot last night gassy and puking, but still smiling.  I will post pictures later today.  She is so happy.

Our first home nurse appt is this morning.  And of course getting the kids to school this morning was interesting, but we made it…thanks to Heather, once again.

Thanks for checkin’ in.

Love,

Teri

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Surprise!

I didn’t want to say anything to jinx it but…..SHE IS HOME RIGHT NOW!!!

They discharged her officially this morning and we ran out of there as fast as we could.  She is home with her brothers and sister, Mommy and Daddy. Once again, we are all together.

Because of the viral infection she had, they had to postpone her Glenn until Dec. 17th, so unfortunately she will probably be in the hospital for Christmas.  But if all goes well, we will have a full month with her home.

Thank you all for the support and sorry for the lack of posts these past few days.  I just really didn’t want to jinx anything.

Love,
teri

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Ironing out details

Gabi is doing fantastic!  I am waiting for rounds this morning.  They are discussing when the Glenn will be. Technically, after a a viral infection, they have to wait 4-6 weeks for the lungs to fully recover.  However, she may outgrow the shunt before then and I just know at home, with the 3 kids, she most defintly face at least another cold.  We’ll see.  The H1N1 swab they did yesterday has come back negative, which is outstanding news.  Still in isolation, off of O2, still on tamiflu for at least one more day.  Haven’t even asked about going home, but I know the thought is on the table.

Love,Teri

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Fighting through

This will be short, but Gabi is doing AWESOME again.  I honestly think she had the flu last week and by the time the swab came back positive she was recovering already.   She is now off the antibiotics and they are going to reswab her on Monday.  And get this…they even said she could go home soon.  Seriously?  These rollercoasters are killing me!  But, I will certainly take the up ones as often as possible. We are all sick at home so my mom was able to go up to visit with Gabi so I was able to stay home with sick kids and recuperate myself.

Last night, I heard a knock at the front door and assumed it would be Heather, our dear friend and neighbor, or Kari from across the street, but no, it was my dear friend Sarah that drove up from Oswego to help out.  She cleaned my kitchen, got the kids dinner, ran a few errands. It was so wonderful to see her and have her help out.  Thank you for surprising me Sarah!  we love you.

As of right now, the Glenn (the second surgery) is very tentatively scheduled for Dec. 3rd.  I think a lot is based on how she does in the next 2weeks.

Love,
Teri

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Influenza

We got a call in the middle of the night last night from the nurse to inform us that Gabi tested positive for Influenza A which includes the H1N1 virus. They put her on tamiflu which is an antivirus, which can help fight off the virus if it is caught within the onset of the virus.  She is now on complete isolation and they moved her to a negative room which contains all the germs within the room.  Our angel friend Carsyn was in a positive room after her transplant which did the opposite.  A positive room pushes all of the germs out of the room. She will stay on the tamiflu for 7-10 days.  Her course of antibiotics is done today so they will finish the doses today and then take her off of those.

I am going to talk to Nancy later this afternoon to see what this means for our dear Gabi.  I know they will not even consider the Glenn until all of this is cleared up.

The fluid in her lungs could be related to this flu but it also could be related to her poor cardiac function.  They are guessing that the ascitis, the fluid in her abdomen, was unrelated to this flu. With all these different variables, it is difficult, nearly impossible to know what symptoms are related to what. We are just taking day by day at this point.

Love,

Teri

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Swine flu swab

Good news is Gabi is doing great.  She looks good, but she did have kind of a rough night with her sats bottoming out in her 30’s. The fluid in her lungs seems to be improving which is great, although now they have no idea why she is breathing so fast and hard and why her sats are dropping.  They are swabbing her for swine flu, regular flu or any virus. 

They are also putting her on the schedule for the Glenn.  It may be as early as next week. I think that may be what she needs.

Will post soon again,

LOve
Teri

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Improvement

Gabi is def. showing signs of improvement. We are so thankful that the fluid is still negative for any bacteria.  Like Ethan said, if it was parintitesis (sp?), it could have been really bad.  But…it is not!

The fluid in her lungs seems to be a seperate issue related to the infection in general and being intabated many times over the course of a few weeks.  Turns out the fluid wasn’t really the issue that was causing her to breathe so quickly and hard, it was the fact that part of her left lung was “down”.  Basically, part of her lung collapsed.  The treatment for that is pressure in the lungs.  Crying really hard is one way to literally pop the collapsed pockets back out. Another way is to give her treatments of CPAP, which she does not handle well.  I remember she had this same issue when she was first extabated many months ago and she recovered fully.

Last night when I left, she wasn’t peeing well and her O2 sats were way down into the 60’s.  The docs ordered a dose of lasix to help her pee off some of the extra fluid in her belly and lungs and she peed like a crazy drunk horse and now things are much better.  She is finally able to eat again, so that should improve her overall system in general.

These past few days were incredibly difficult. I hadn’t been afraid for her life in many months.  But she has shown me to keep the faith and really how strong she really is. She is not necessarily out of the woods yet and although she is improving and fighting off this mysterious infection, we are trying to cope with the fact that we’ll most likely never found where it came from. We are just so thankful that as of right now, the VP shunt doesn’t need to be externalized again. Phew!  I might have had to strangle neurosurgery.

To admit this is quite indiscreet and maybe even reckless, but the past few days, I felt very angry with God.  Sometimes, I get so consumed with what we are going through, I feel like we are the only people going through something like this. But there is a so much pain in this world. After watching the memorial in Texas yesterday and being surrounded by sick children, I realized how much people suffer in this life. And who am I to feel sorry for myself? I have to SO much to be thankful for. God is there to provide strength and courage and just because things don’t go the way we want, He is there.  And He gave us the strength even though I was so angry with Him. I think all of your prayers carried us through this past weekend. And I know difficult times lay ahead again and I will probably get angry again, but I know one step at time, holding my husband’s hand and God always at our side, we can all get through our painful times. All this pain and suffering has a purpose and I wouldn’t change the fact that Gabrielle is our daughter for anything.  I will take her as she is and love her for what she is. And I will not question God because our Gabrielle has a purpose here, even though we may not understand it.

“I know that You can do all things, And that no purpose of Yours can be thwarted.” Job 42:2

We continue to feel so blessed with our wonderful friendships, new and old.  I came home last night to the babysitter, our gift from generous relatives, 2 pizzas delivered from a friend that I miss dearly and voicemails from friends and family that were just thinking about us. Thank you all.

Love,
Teri

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To fight another day

So far the test have come back negative. It is possible that there WAS an infection, but since they put her on antibiotics right away it had cleared out before the pulled the sample to test. This is likely good news. If there was a persistent infection in the abdominal wall things would have been pretty bad. Under normal circumstances I was finding 40% fatality if it was able to be treated very quickly. I couldn’t find anything about numbers for a girl like Gabrielle.

The fluid in the lungs is holding steady, and they are doing another chest X-ray today. They are pretty confident that things will pop back (her one lung is a little “flat”), and a similar thing happened when she was exabated the first time, and eventually she recovered completely. I think it was the series of intabations with the multiple brain surgeries and the MRI that just became more than she could bounce back from. If the lungs don’t look better today they will do a little CPAP action to pop them back open a little.

Teri says that Gabi looks pretty good, which is much better than what I heard in her voice a couple of days ago. Teri and I think that maybe we need a really long course of antibiotics to make sure everything is clear. IT seems like maybe the antibiotics are being shut down a little early, and then after a couple of days things go all haywire again. That is our opinion, and it will be interesting to see what the real doctors think.

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Frustrating mystery

She is back from IR, interventional radiology where they preformed a procedure called paracentesis.  Gabi has ascititis which is fluid in her abdomen probably from an infection. paracentesis is  when they put a needle in her stomach to drain and catpure a sample of the fluid.  They were able to drain 10 cc’s of fluid and her stomach already looks a little less swollen. They sent this mysterious fluid to the lab to get tested for bacteria growth, white blood cell count among many other tests.  From this they will be able to get additional information about where this infection is coming from.  They are suspect of the VP shunt again.  Dr. Berens fears it may be parotinitis, an infection in the abdomen lining.  This would require lots of antibiotics and of course, to externalize the VP shunt once again. She is still NPO, nothing to eat. SHe is getting IV fluids and did get a blood transfusion this morning.

She hasn’t had any fevers for 48 hours and her white blood cell count is coming down and the CRP is also coming down, which is good.  Clinically, she looks good.  Heart rate is staying steady and low. She is still on O2 because there is also fluid in her lungs, which seems to be a seperate issue.  She is breathing rather hard which is making me quite nervous.  Last night, they were watching her closely concerned they may have had to intabate her for fear she might crash.  She has been breathing very hard and is getting tired.

I am trying not to be afraid, but I can’t help but think about the worst.  She has a bad heart and I am so scared her little body just can’t take all of this. Hopefully we will get more information as the day comes to an end.

love,

Teri

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From the top turnbuckle

They will be taking her down to Radiology today to drain the fluid in her abdomen. She is first on the schedule, which is nice so that this gets done first thing, but scary because the doctors think she has to be first. Teri said she was resting relatively comfortable last night, and trying to sleep. Her belly is all distended from the fluid, and I hope that after the drain this morning things will start to improve in that department. The doctors think that the infection is causing this fluid build up, and so far I haven’t heard a tie in with the puss they found when they tried to internalize the brain shunt a couple of weeks ago. The fluid in her lungs isn’t the same as the fluid in her abdomen, but it seems like another side effect of the infection. She is getting regular chest x-rays, so they are keeping a very close watch on that.

Right now Teri and I are pretty worn down, it was quite a body slam to go from coming home in the morning, to worrying of she is ever going to come home again. My friends Nettie and Brian were able to hang out with me yesterday, so I wasn’t left to myself and my thoughts for too long. I am very grateful that they did stay, despite the pretty sub par kid behavior all around.

The other three kids are doing alright, but it is really starting to wear on them. Having Teri leave suddenly when she had just gotten home was pretty jarring for the whole family. They just want the parents back home, and it is really painful to not be able to give them that right now. The neighbors here have been a godsend, and I have no idea how we would survive without the help we have gotten from all our friends and family, but I hope Gab can pull through this and we can be a more normal family by Christmas time. That would be the best gift we could ever get.

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Wrong direction

Good news is that the fluid they pulled from the shunt didn’t test positive for anything. The bad thing is that there continues to be fluid in her lungs, and she is very uncomfortable. They did an ultrasound on her abdomen, and found a lot of fluid in there that they didn’t expect to see. Teri cut her weekend short and is on her way back up there right now, and once we know more we will update.

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So so extremely…

…disappointed, heartbroken, discouraged, angry, sad, confused, tired.

She is not coming home today or in the near future.  Gabi spiked a fever last night. They have started another course of antibiotics and are investigating where the fevers are coming from.  We are waiting for results from blood and urine cultures, blood counts, CRP counts.  From those they can determine if an infection is and hopefully determine where it came from. 

She also pulled out her G tube so she hasn’t been able to eat anything since yesterday.  Surgery tried to pop one back in but by the time the nurse found it out, the hole had already started to close. We are waiting for her to get down to IR so they can replace it. 

I don’t understand why this is happening.  I don’t understand a lot of things in this life, but I trust in God that He has a plan. Somtimes it is more difficult to find that trust and have faith. We will find it.  I know we will.

Love,
Teri

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Discharge plan!!

MRI went well.  She is coming home tomorrow morning! We are so excited, so blessed, so grateful.

Love,

Teri

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waiting waiting

We waited all day to try and see if she could be added on to radiology’s schedule for an MRI today, but it didn’t work out, even though I harrassed the docs all day.  She will be first case tomorrow morning.  She will need to be intabated and fully sedated.  The procedure should take about 2.5 – 3 hours.  They need to be able to hold her breaths so they can get a clear picture of blood flow, pressures…not sure what else.

After she is intabed, she usually needs extra O2 to boost her sats up a bit, but hopefully only for a few hours. They need to keep her for 24 hours after the procedure for observation then she can…..COME HOME!!! 

The discharge plan is set for Saturday morning.  We are praying and praying that nothing stands in our way to bring her home for at least a week or 2 before the next heart surgery.

Thanks for all the support. Gabrielle certainly is a fighter and a tough little cookie!

Love,

Teri

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MRI

Gabrielle is having a great day so far.  last night, she threw up a couple of times, so they had to put her feeds on hold and she was sooo happy to have an empty stomach!  Poor little thing. Obviously, she has to eat, so the docs are watching her closely for more vomitting and irritability with an upset tummy.  After her Glenn surgery, the feeding thing apparently gets MUCH better. There will be more blood flow to the stomach and she will be able to digest food quicker. They are waiting to hear a definitive result from lab about her cultures. It  has been about 47 hours since her cultures have been drawn but they have to wait a full 48 hours before releasing an official result.  So far, the results are still negative.  Then they can discontinue the antibiotics.

The new info today is that Dr. Cava IS in town afterall, so they are trying to schedule her MRI for tomorrow or Friday so we dont have to come back and do that as an outpatient.  This will get her all ready for her Glenn procedure later this month.

My incredible new friends, Chris and Michelle Buchmann (Carsyn’s parents) are putting together a new foundation to help the cardiac unit and heart families at CHW. Their first project is to build a beautiful garden on the hospital grounds so families can find a peaceful place to bring their children.  Their greatest moment with Carsyn was when they got to bring her outside, so they are determined to build a serene place for families to retreat to.  I am so looking forward to help them with this project among many more future needs.  So, be on the lookout for fundraisers coming up this winter.

I can’t wait to be able to report when we will be heading home because it looks like it may be soon!!!

Thanks to Rita and Marlene and Sally and heather and Shelly and the Buchmann’s for dinners, rides, babysitting, just being a friend to turn to. We truly are very blessed.

Love to all,

Teri

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The next few days

Gabi is doing really well. Her white blood cell count was a little up yesterday from results of a standard blood draw.  So, they drew cultures but nothing has grown yet and her CRB (I think that’s what it is called)…it’s a measure of inflammation in the bloodstream, and that number actually came down, which is great news.  So, they continue with the antibiotics for 48 hours after the cultures were drawn, whcih was yesterday morning.  Hopefully nothing will grow and they can discontinue those antibiotics and get that PIC line out. 

Her heart rate is a little elavated and they are contributing that to withdrawal. But she hasn’t received any morphine since last night, and now that i am here I can hold her and comfort her with normal baby consoling rather than just giving her drugs. 

They wanted to do the MRI before she was discharged this time but Dr. Cava is out of town until next week, so IF we get to go home soon, we’ll ahve to come back for a day/possible overnight trip next week. This is her pre-Glenn procedures.

That’s it for now.  She is doing really well and I am praying like crazy that we can bring her home later this week!!!

Thanks, much love to everyone and God bless!!
Teri

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Pictures

The withdrawal is quite stubborn.  She is really not happy today and now her white blood cell count is up. Luckily she is already on antibiotics.  She is scheduled for an MRI tomorrow.  HOPEFULLY she will not need a pre-Glenn cath also.  We’ll see.

Here are some recent pics of Gabi.

This is the external shunt coming out of her head.  Looks comfortable, doesn't it?

This is the external shunt coming out of her head. Looks comfortable, doesn't it?

Playing with her zebra

Playing with her zebra

The new internal shunt

The new internal shunt

Looks much better

Looks much better

Love,
Teri

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A good outcome

Yesterday morning was another morning of unanswerable questions.  Gabi had a really irritable evening and night, throwing up quite a bit and just inconsolable. The nurse gave her a dose of morphine at 8 am Sunday morning and it did wonders for her!

So, she was irritable, vomitting and her incision on her head from the shunt placement was quite red. The nurse thought it looked puffed up, but I disagreed, it didn’t to me.

With those symptoms in mind, the docs had 3 possible ideas of what it was:

1. A shunt malfunction
2. An infection in the shunt/incision

Dr. Scott was quite confused with her symptoms because she had no fevers. He decided to order a CT scan of her head to make sure the shunt was working and labs drawn to check her white clood cell count. I truly thought I was going to loose my mind. I called Ethan at home and we both were so overwhelmed that we decided to just laugh and turn it over to God.

The blood count came back normal and with that, Dr. Scott came into the room and had another thought: withdrawal. She had been through 3 surgeries in a week with heavy narcotics and the way the morphine helped all kind of made sense. She was so comfortable with the dose of morphine. she was just looking around and content as could be.  But they had to rule out a shunt malfunction first with the CT scan.

It came back normal!  Phew.  I wasn’t sure if neurosurgery was going to live if the shunt had already malfunctioned.

So, they are monitoring her withdrawal scores and giving her morphine as needed, but yesterday she only got 2 doses in 24 hours, but hopefully within a few days, she will be OK. There was a little confusion whether or not to discontinue the antibiotics.  Nancy decided to continue them for a few more days.  With all of her upcoming procedures, they wanted to make sure everything was as sterile as possible.  Nancy was at home yesterday but I called her on her cell phone and I was so reassured.  I am so thankful that these docs dedicate their lives to our children.  Nancy treats the hypoplast kids like her own. The fact that I can call her at home to get answers really says so much.

Gabi is doing great!  We are so thankful. Nancy is discussing Gabi’s upcoming procedures with her team and Dr. Tweddle, the surgeon today.  So, we will get answers and a tentative schedule soon.

Our minivan is still getting repaired, but thanks to the help of neighbors, friends and family, we are making it work. Thanks everyone!

Love,
Teri

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