Archive | July, 2012

Life at home

Wow.  It’s been a busy, crazy few days at home and I apologize for not posting sooner.

We got home Wednesday evening and Gabi was really fussy and uncomfortable.  I thought she would be so happy to be home, she was but she was just miserable.  The first night in her bed did not go so well. She was up all night long whimpering and crying. she would fall asleep for brief moments and then awake with a start.  I didn’t know if she was in pain or in fear.  I asked a few other heart moms and Carol, our cards nurse, and they all told me that a lot of times, the kids are just really traumatized for a period of time, suffering from nightmares and just general anxiety.  so sad. The next day, she wouldn’t sleep and she was just really uncomfortable.  Then the diarrhea started.  And things went from difficult to worse.  I called the cardiologist and of course, reached out to my trusted posse of nurses, and they were attributing it her new formula.  It is called Vivonex. It is predigested and low fat. She needs a very strict low fat diet for 8 weeks following the fontan to avoid any plural effusions (fluid building in her chest).

I talked to our dietician in CHW who has been with Gabi since birth and she told me to start with simple fixes.  We added 10 grams of fiber to the formula and we waited and hoped she didn’t get too dehydrated.  She is on 2 diuretics and with diarrhea, there was quite a concern there. The benefiber did nothing.  Her poor behind was ripped to shreds with terribly severe diaper rash. I started to giver her less and less food because I knew it was just a vicious cycle.  More food= more diarrhea.

We waited it out until Monday, our follow up appt.  The nights that preceded the appt were much the same: she was up all night long tossing and turning. She was crabby during the day, exhausted and wasn’t getting up off the couch, like they wanted her to be.  Monday morning, she fell asleep on the way to the hospital and about 10 minutes away, I wanted to give her a warning before we just pulled up the dreaded entrance of CHW.  I said, we’re going to go see Dr. Cava, he’s going to listen to your heart and then we’re going to go home. The look on her face almost made me crash.  She silently cried until we pulled up to the entrance and then it wasn’t silent any more.

Labs were first- horrendous. Chest x-ray was next- not as horrendous, but she was still terrified. Then off to Herma Heart Center to see our friends.  Carol did an assessment and agreed that something needed to happen with this formula. She also told me that the stitches that were in those chest tube scars should have been taken out before discharge from the hospital and now they were completely scabbed over.  great.

Dr. Cava was awesome!  4 of us pinned her down and he dug out the stitches. this was all following the general exam of course.  But labs looked great.  Her INR level was at 1.7 and it should be between 1.5 and 2.0, so it was perfect for now. Platelet count was up to 150! Her CBC was a still a little askew but all to be expected.  her chest x-ray looked great too. All fantastic news!

Dr. Cava explained to me that there was actually no scientific proof of the low fat diet working.  This is a new trial they are running to see if it might help stop chest effusions.  And actually Dr. Cava was the one who implemented this new trial! He agreed that she needed to come off this formula.  He was going to put her on a higher fat formula, but not as high as Pediasure, her usual formula.  It is called Pediasure Peptide. He said without any proven evidence that this works, he couldn’t justify keeping her on a diet that didn’t agree with her. The risk was worth it. (let’s hope so!) He tweaked some of her meds and then we waited for Julie, our wonderfully amazing dietician.

One of the nurses brought in 2 cans of the Peptide and I asked for more and she looked at me like I was crazy.  Then Julie came in and said, “that’s all they gave you?”  She ran into her secret lair and brought me a whole box with a script for more.  She’s the best.  We went through the new regimen and she told me to keep her NPO ( no food) for a good 24 hours. We were to give her Pedialyte and some oral feedings if she claimed she was “hungry”. Wouldn’t you know it- she was SO MUCH HAPPIER!! It was the food all along that was making her horribly uncomfortable.  Her poor little tummy must have been so upset and her bottom was tortured.

I just started the new formula at noon today, so let’s pray for no diarrhea.  Because of this higher fatty food, she is at a higher risk now of having effusions, so we are on high alert.  The only ways of knowing are if her breathing rate increases and if we want to get crazy, we can weigh her everyday to check for a jump in her weight that might be fluid.

She was only up once last night!!! She is like my Gabi now, only weak and a squeaky voice.  But with some rest and her tummy feeling better, she is much happier. She is up walking around and wanting to play again.

Thanks for all the support, dinners, babysitting, visits, wine and kettle corn (it’s the little things!).

Love to all,

Teri

 

 

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We are….

GOING HOME!!!!

 

 

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What a good day!

Gabi walked a few steps and actually played in the playroom for about 15 minutes.  She got pooped quickly but we did this twice today and the docs are loving her progress.

Her labs looked good.Platelet count continues to climb to 84 today. 150 is normal so she is getting there. She has low sodium and her potassium counts are messed up but this is all expected after open heart surgery and all easy fixes with her diet.

Her chest x ray looked great… Actually better than they expected :) so we are on track for coming home TOMORROW!!!!

They want to check her labs one more time in the morning and look at another chest X-ray to ensure her progress. Her INR levels are not quite where they want it yet so when we get home, we’ll have to get weekly blood draws for a while so they can adjust her dose of Coumadin as necessary. She is also on a low fat diet and put on a low fat formula via g tube for 6-8 weeks.

Please say a prayer for getting out of here tomorrow. I know she will thrive even more at home.

We are so grateful. the kids are busy making welcome home signs…

As we leave this incredible institution, we leave behind families with children that need heart transplants or are suffering from cancer or have passed away leaving a void and unimaginable pain . Often times I get sad for gabi and get tired with all that comes with having a special  needs child but all I need to do is open my eyes to gain a little perspective. Our lives are all in God’s hands.

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Our new digs

I miss my medical family on west3 but they had to kick us out for a sicker baby.  It’s such great news being up on East 8 because they think gabi  is doing well, so I’m not complaining. I’m just saying I miss my comfort zone of the ICU where I literally know everyone.

Gabi is doing so so great. She slept all day yesterday and today she woke up and for the first time in over a week, she smiled and actually wanted to get up and out of bed.  She is watching Dora and Diego and is actuslly responding to their silly questions. I was in tears as I see glimpses of my Gabi coming back.

Our fate rests with lab results and chest x rays. Up on the regular floors, labs andX-rays are not at 4 am,..They are much more reasonable at 7 or 8 am (thanks Jennie for changing ours to 8). We haven’t heard results back but our same phlebotomist came by this morning that knows gabi and her lack of veins.  She got a stick in one try but unfortunately the vein blew, but she got another vein fairly easily. We are waiting for specific results of platelet count and INR count (Coumadin levels). Chest X-ray  will show any plural effusions.

PT is here to take Gabi to play.

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Fontan post op day #7

So much good news!

The chest tubes are out and while she is still sedated from that, they are here doing an echo.  Nancy just wants to check and double check her heart.

Platelet count was up and they really don’t have a great explanation for the reason in the drop. Could have been viral, could have been a reaction to all the drugs during surgery… But the fact that her body is producing them again is all they needed to see. Last night her count was 45, today was up to 64!

As off late last night, the plan was to giver her another transfusion of platelets while they take the chest tubes out to avoid excess bleeding. They were just hoping her body would at least hold on to some of the platelets from the transfusion yesterday. But Gabi exceeded their expectations and the platelet count is no longer an issue!

We are being transferred out of ICU this afternoon to 8 East, the step down unit. Nancy didn’t seem think it was out of the question to be home in a few days. Unbelievable.  Miraculous really.

A week ago today she was on bypass, yesterday we thought she had a possibly life threatening clot and today we are talking about home.

This life is a rollercoaster and I’m so grateful that we are on this ride with such wonderful people. Our friends, family, nurses (who have become our lifeline)doctors, all the staff here at CHW- from the cleaning ladies to the chief of surgery. .. We have some amazing people in our lives.

God works in funny ways. He brought us here to meet this whole new family of heart people in Wisconsin. As my friend and Gabi’s nurse from when she was a baby told me” gabi is such a fighter, Teri. You all are. This is just one more pothole on the journey. Of course it would be nice if someone would fix the freaking road, but the scenery sure is pretty…”

she’s so right. And I am so thankful and beyond elated that Gabi has made it this far in her journey with us and that God has provided us with such a beautiful terrain and wonderful travel companions..

 

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64!

Platelet count is up to 64!! No more suspicion of a clot…

Chest tubes should be out in the next 2 hours!

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Platelets up

The results of her platelet count went up to 45. This doesn’t  mean much as far as any explanation. Comparing these results to the  Labs we’ll get in the early morning will give the docs the info they need.

Dr. Nancy gave us the go ahead to take a walk and leave the CICU. Gabi and I got to walk outside!  It as hot and every bump was excruciating For her and after about 15 minutes she was wincing and I asked her if she wanted to go back to bed and in her squeaky voice, said yes.

The plan is POSSIBLY getting the chest tubes out inthe morning. If they do this,, they can get better pictures in the echo tomorrow.

Please please pray for the chest tubes to come out!!

Thank you so mUch.

Love,

Teri

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Some results

Got the results from the first test.

It is not the best case scenario. The test was negative meaning she has not developed an antibody for heperin.

3:00 is the lab draw for a platelet count. Still on the table: infection or clot

Please just pray for an easy lab draw.

 

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Better explanation

We still don’t have any results but I got a better explanation and possibilities.

1. Hematology  ordered labs to check for antibodies to an anti coagulation drug she was on called heperin during the surgery. Gabi’s body might have neutralized the heperin in some way causing her platelets to drop.  Hmm it made sense wh in th ey were explaining it to me.  This would be an easy fix to justnot give her heperin anymore and her body will eventually rebuild her platelets.

2. A clot is still a possibility, but much less likely than I initially thought. She has no visible signs of a clot anywhere. No redness, no spots, no swelling, pulses are good, she is breathing fine and her cardiac function looks good.

3. An infection.  Platelets are naturally destroyed by our bodies if are have a virus or infection.so, if she has a random virus or something, her body might just be reacting in a normal way.  Her siblings were all sick about a week ago with a respiratory linfection and we prayed that she wouldn’t catch it.  She is coughing a lot, although th ey are still saying this could be due to being intubated. The coughing is worse, but she she does not  have a fever.

What are they going to do?

Labs were ordered to test for the antibodies to heperin

They are giving her pLatelets right now and then will take labs immediatly following to see how her body reacts to them. If the count stays around 12,000- they will know that she probably has infection and her body is destroying the platelets. If her counts go up, then they will remain hopeful that they will stay up. Another blood draw in the early morning will show us of they are staying up. If they drop, then there is probably a clot and the ultrasounds and echos will begin to find it. If they stay up, they will just contribute this to trauma from surgery and med side effects.

They just brought in a cute dog for pet therapy and she wasn’t even interested in that. She is so miserable. Hopefully just 1 more blood draw today.

 

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Platelets

Hematology came down to talk to me and dr. Nancy.  They are gethering data and going to give their recommendations to nancy and wel’ll take it from there.

Best case scenario- nancy said something about antibodies effecting the platelet count.  This can managed easily.

Worst case scenario- there is a clot in heart. Nancy does not think this is the case because there are no other signs/symptoms.  Her numbers all look good and cardiac function seems to be good. She didn’t even know what they do if this was the case.

Probable case- there is a clot somewhere …This can be treated with anti-coagulations but I thnk the tricky part is finding where the clot is.

 

 

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We need prayers

Lab draw results from the morning were troublesome.  Gabi’s platelet count dropped to 12.  This is after she received platelets yesterday… There should have been a big boost. My friend / gabi’s night nurse explained to me at 5 in the morning that this means there most likely is a clot somewhere. They had to come back again for more blood and run a DIC test (??) which will tel them if there is a sensitivity to a clot. Based on those results, they will either give her more platelets and see if she gets s boost (seems like a waste of a lot of things, imo) or they will try and find the clot with ultrasounds. She has good pulses so the good news is that the clot, wherever it is, is not totally occluding the pathway.

This also means that all chest tubes will stay in. It will also mean weeks of lovenox shots.

Big Ethan took the kids home late last night and they all cried having to say good bye to me and gabi again . They had fun at the Ronald McDonald house but this is so hard on them too.

Please just pray for strength for Gabi. Every blood draw is tortuous. They are running out of veins to poke her in. She is so bruised and a lot of her veins have blown out so they can’t use them. She has already been poked 3 times and it’s only 7:15 in the morning. Neither of us has slept. She is so tired but every time she falls asleep, someone comes in to bug her.

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Ultrasound results

Quick update- ultrasound results were negative meaning no clots were seen. Yeah!

She received platelets and is doing fine. I pray those chest tubes come out tomorrow!

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Saturday morning update

I had to think a long time to decide what day it is… This week has been a total blur.

Gabi is doing really well. Still some obstacles… Her platelet count is still trending downward. It was 90 (actually meaning 90,000) a few days ago, 54 yesterday and today was only 27. A normal healthy person should have a count of around 150. Dr. Nancy was here this morning ( and she is the chief of the ICU) along with dr. Mitchell, the other incredible cardiac surgeon, and our surgeon, dr. Tweddell, was on the phone during rounds trying to decide what to do. Nancy and dr. Mitchell wanted to wait it out and give her body some time. Dr. Tweddell had a different opinion. He ordered an ultrasound of her neck vescles to check for a clot. Because she is not bleeding like crazy anywhere, the question is if her body is making patelets, where are they going? They would stick and collect to a clot and not be in circulation where the blood draw would provide evidence for them. They just completed the ultrasound… No results yet. And they are giving her platelets.

As for my volume suggestion, I was shot down. They told me they like to keep these kids just a little dehydrated in order to dry up those chest tubes. But her heart rate is back downand her respiratory rate is much more appropriate.

Her feeding rate is still pretty slow and there is a little chyllous draining from the chest tubes, but the amount draining has slowed everyday so they are thinking maybe tomorrow to pull out those chest tubes. This would be SO unbelievably exciting! After that, the road to recovery and home is in sight! Plus they are so uncomfortable for her.  My friend and favorite nurse, cariane, was here last night and we both decided after listening to her moan and wail for about an hour that she deserved a dose of something. Morphine was the only drug the docs would approve. she already had a dose of Tylenol and they won’t giver her ibuprofen or any form of it because of her low platelet count. She received some morphine and it actually calmed her down really well.

She woke up  at 4am for the daily chest xX-rays and then because her central line is now out, they have to poke her for labs. The first Phlebotomist tried twice and couldn’t get a vein. The second one tried twice and failed. After 2 tries, they are not allowed to poke again (love that rule!) but I knew the docs were going to need labs. I knew someone would be back. At 7am, another phlebotomist came in and she assured me she was the best. She got the blood ! I dread tomorrow mornings lab draws. Gwbi was atrooper. At this point she is so done with everyone and everything. She is so tired of bring poked and listened to and bandages being changed.  I feel so awful for her. She doesn’t deserve this.

Every time that door opens now, I am on the defense ready to fight for her. I understand that they need to examine her but all of the residents and fellows don’t need to also. I know they have to learn but it gets to a point where I want to scream… LEAVE HER ALONE!

Please continue to pray for no more chyllous and for those chest tubes to come out!

Thank you all so very much and have a great weekend!

Love’

Teri

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Visit from brothers and sister

We all trekked up from Arlington Heights this afternoon to visit The Gabs. The kids had made cards and collected various toys from around the house that they thought would cheer her up.

We arrived at the room just as three nurses were working with Teri to move Gabi from her bed so Teri could hold her and they could change the bedsheets. It made for a lot of commotion as the kids were super excited, Gabi was excited nurses were moving things and I tried my BEST to keep Thomas from tripping on the chest tubes that snaked across the floor in front of this feet.

Big brother and his sister.

Big brother and his sister.

Gabi was able to make it back to bed in one piece and was obviously tired from the adventure. Nevertheless Ethan Jr. helped her to color a little with markers and to play with a balloon.

Having not seen her for a few days I have to say she looks good, but VERY tired. Her voice is much higher and squeaky and makes her sound even cuter. She kept saying thank you to the kids for the toys they brought. It was heartbreaking to hear her exhausted squeaky voice straining to give thanks.

Teri said it was the most she had talked and certainly the first time she had smiled. All in all a good trip despite the traffic and storms on the way up.

The kids are now over at the Ronald McDonald House which they have been excited for since this adventure started. Then Teri and the kids are heading over to the Buchmann’s for some swimming and for Teri to get some much needed fresh air.

So far her chest tubes seem to be really slowing down, only around 10cc over the last few hours. This is great and we could be on schedule to get them out in the next couple of days. Her central line came out right before we got here, so there is major progress towards her becoming wireless. The faster these lines and tubes get out, the better. Each one is just a doorway for infection.

I grabbed a quick video of Gabi playing with her balloon. I hope everybody has a great weekend.

-Ethan

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Catching up on rest

Last night was fairly uneventful, which is great. She did throw up a bit and it was dark brown like old blood. They contributed it to just post-op crap but she had been drinking a little water and juice and even eaten a few bits of pudding and apple sauce so theyk reassessed after she threw up a few more times and contributed it to the pain med she is on called tetr…something. So they took her off that so since about 11 last night she hasn’t had anything for pain  and she is sleeping very comfortably. She wakes up every hour or so, makes sure I am there, watches a little go Diego go and then goes back to sleep. She is calm and catching up on some much needed rest. I can’t believe she is not on any pain meds., I would be miserable.  But sometimes the side effects are worse. They have morphine and lorazepam on hand for her but from here on out, I think I will just push for ibuprofen and Tylenol. Those narcotics are just not worth it.  And from all of her hospitalizations, her dose of morphine wouldprobably make my heart stop. That’s what the nurse said. Her little body is so tolerant of morphine that to take any effect, the dose they would give her would be almost 5 times the amount given to me- crazy.  She’s going to seriously go broke quickly if she ever becomes a drug addict. (terrible joke, I know).

In my amateur doctor opinion, her heart rate is elevated and she is breathing fast, so I think she needs some additional volume… Albumin or FFP. We’ll see if I am right. I just mentioned my thought to the fellow … Iam sure they are 100 steps ahead of me :) but she is draining so much fluid/blood, I think she needs some of that replaced.

Chest tubes are not coming out. She looks ok… Not great, not terrible. Her feeds were started very slowly last night and so far no chyllous!!! Please continue that specific prayer! They haven’t rounded yet.

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Overnight plan

Today was very quiet. Gabi actually was a lot calmer and got some much needed rest. And when the docs start leaving her alone, I know that is a very good sign:)

They are going to start feeding her a low fat formula at a very low rate via g tube overnight. They are going to cut the milrinone in half and start her back on her normal cardiac oral meds. If that  goes well, the milrinone drip will be off by early morning and her central line can come out soon after.  Unfortunately her chest tube output is still too high for even considering those to come out yet.

Baby steps forward. They all think she looks good. Chest X-ray is at 6 to make sure nothing in her lung has collapsed.

We both took a few naps today so I actually feel human now. Plan is for the kids to come visit her tomorrow at some point. I was hoping the horrific chest tubes would be out but no such luck. She will be excited to see her brothersand sister. We are so thankful gabi is still here and making good progress.

Thanks so much for all the prayers… No chyllous!

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Great news

She peed and the pacers are out!!

After 8 hours of no pee,The docs werethinking about doing a straight cath (inserting a catheter into her urethra to get to her bladder- very uncomfortable ) but the nurse and I asked them to please wait for another dose of lasix and sure enough she had 2 full diapers in the folowing couple of hours.

So- about every 25 minutes a doc or 2 would come in and play with the pacer wires trying to get them at a good setting.  Her rythym was all over the board.  At about 10 pm, dr. Hehir came in to play and I could even see the wave lengths on the monitor were totally messed up. He decided to just turn it off and see what happens.  Wouldn’t you know it, her heart loved it and the rhythm evened out in a matter of minutes. He stood watching and said… Look at that, she’s sinus.  Hmmm…  I know he wasn’t talking about her sinuses in her nose; I apparently  looked puzzled so he said, that’s good… That’s perfect rhythm. The pacers have been off since and she is doing great!  The prayers certainly worked! Thank you!

Her chest tubes are still draining a lot so all 4 are staying in.  Bummer.They are also keeping her on the milrinone (an IV heart med) so this means her central line has to stay in too. No lines coming out today. Another bummer.

She has been eating a little orally but they will start some g tubes feeds  later today. One of the things that keeps the kids in the hospital for a long time is when they do start eating, their body does not absorb fat and it leaks out through their chest tubes… It is a white milky substance that is called chyllous. This could keep gabi in the hospitsl for weeks… So my new prayer request is for no chyllous. I would so appreciate it.

She is still super restless and afraid to sleep because so many people come to bug her with blood pressure, blood draws so she is always on the defense. I did get to crawl in bed with her last night and this morning so I think she feels a little safer. Neither of us got much sleep.

Overall, she is doing awesome. My little rock star!

Thanks for all the support!

Side note- ethan likes to take random pictures when he is downtown, so I have no idea what those 2 pictures are to the right. I love you Ethan but this is supposed to be about gabi! :)

Love,

Teri

 

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Pacer problems and pee

Just when we’re so happy with progress, there’s always a kick in the gut. Dr. Singh cam in to play with the pacer wires and he asked me how much I understood about what was going on with her heart. He went into a long explanation with diagrams about the pacers that gabi needs right now. He said the problem she is having is with the bottom ventricle. The top chamber is beating and the bottom chamber just isn’t responding, so the pacer jump starts it to force it to beat.He said there is an AV node that is in the middle of the chambers and its job is to communicate between the chambers. Sometimes  during the fontan, this AV node can get damaged…usually it recovers and doesn’t become a problem.  I asked him why he was explaining this to me… Because when an ICU doctor takes time to explain something, it’s a bit worrisome. He answered by explaining that The setting that is on the pacer right now for gabi is at the highest rate , much higher than “normal” so they are concerned. He said not to even think about a pacemaker until day 7 post op. this is day 2. And this sucks.

And of course, they removed the foley and now she is not peeing. She hasn’t peed in 6 hours and she has received 2 doses of diaretics.

Please please pray specifically for pee and for that AV node to start working properly.

Thanks,

Teri

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3 celebrations

The dex is off, the art line is out and the foley is out!  I sat in dr. Rao’s thinking chair for a while and realized i was uncomfortable with the dex being back on. gabi just wasn’t moving forward being on the drug. Dr. Cava and dr. Hehir both kind of gave me permission to make decisions as far as pain meds.  I talked with our nurse and Dr. Hehir came in and we all agreed the dex was counterproductive.  Being on the dex slowed her breathing effecting her O2 levels, effected her heart rhythm, and made her totally whacked out. Even being back on the dex, she was still trying to sit up, disoriented and just pissed. So, we all agreed to just turn the sucker off and deal with the aftermath of this awful drug and the post anesthesia. This would at least allow her to make some progress in healing.  So, we turned it off and after about 20 minutes it took 4 of us to hold her down while she was flailing and trying to pull all of her lines out. It was crazy, irrational and quite scary.

Her heart has done well without the epi so while the nurses and I had her pinned down, we were able  to remove the art line and she was peeing fine so they took out her foley as well :)

Her heart  is still being paced but they are hoping as the dex wears off, her heart’s 2 chambers will communicate better and the wenckebach will go away. right now, the atrium and the ventricle are not communicating very well. They are missing beats and just not in sync.

She is resting peacefully right now because they giver her a dose of atavan to take the edge off.  Please pray that when she wakes up, she is back to her normal gabi self. Making progress.

Melissa- I did ask if she was given any steroids and they assured me they hadn’t given her anything. I wonder if Caden’s reaction was a combo of the drugs like gabi’s??… Just speculating.

Love,

Teri

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Epi off take 2

Let’s try this agsin, they have turned the epi off again and so far so good.  She is still being paced, which helps Ithink. We also tried turning off the dex again and that didn’t go so well. It was off for about an hour and she went  crazy. Pulling at the wires pointing at the door saying I wanna go, I wanna go mommy. She was thrashing in her bed and turning over. With  4 chest tubes, a fresh chest incision, a central line, 2 peripheral IV’s , an art line, a foley, leads, a renal patch and her g tube- she got terribly twisted up and we Were afraid she was going to hurt herself. So the dex went back on at an even higher rate.

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Drop in heart rate

SooN after they turned the epi off, her heart rate dropped significantly to about 65. The alarms went off and 3 docs were at our bedside. They turned the pacer wires back on and also had to turn the epi drip back on. I asked how concerning this was and Dr. Hehir explained that of course they would not like to use the pacers but  it’s  necessary  to maintain good cardiac output to get the drainage under control. So this could be a long term problem which would mean gabi getting a pacemaker, but it is probably her body getting used to the new fontan anatomy so generally thiese rhythm issues get under control by themselves.

She is still on the dex  but, the nurse, Andrea, and i can wean that down as we see  fit.   We gave her a dose of  Tylenol and wouldn’t you know it, she is resting comfortably right now.  Could be just coincidence and luck, but I’ll take it.

One step forward, 2 steps back.  Seems to be gabi’s style.

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Decent night

“mommy I wanna go. I wanna go” this is what Gabi was saying repeatedly last night in her half sedated stupor. it was so sad. She would reach for me and wrap her arms around and neck and try to pull herself out of bed.  It is heartbreaking.  She would finally settle after a long few minutes and settle for playing with my hair.  She is stiDevon the dex drip at .7 which is a lot but they aren’t too concerned. We aren’t even 48 post op yet.  Our nurse kennedi last night was great.  Sometimes the nurses will dump the prn pain meds (like morphine, versed and droperidole) into her. I think our friend Caden a few weeks ago receivedover 10 doses of morphine in one night. Kennedi worked together to calm her before giving her anything.  She received one dose of droperidole when she literslly tried to get ot of bed.

The docs just turned off the epi and the norepi so that is good. That means we are starting tomeasure her intake of any fluid and hopefully some food. She was being paced all night but they just turned that off and her rhythm  is holding steady. Her chest tubes are still draining a lot so Tim, the PA, said those are no where near coming out.

They should round soon. Baby steps towards progress. I am certainly not as scared for her survival anymore, I just want her to be comfortable… So thanks be to god for that!

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New sedation plan

I remember this sedation game all too well. One step forward, 2 back.  Later in the day, gabi was waking up and was completely irrational and thrashing around.  It was almost impossible to console her.  She was trying to rip out all of her lines and rip the cannula off her face.  She just kept saying more water or more ice even though she was holding the cup with both in it.  They said coming off all of the drugs can make the kids confused and irrational. They turned off the dex and she became more upset so they then turned it back on at a higher rate a few hours later. She was receiving periodic doses of morphine and versed as needed but they decided that sometimes that combo can cause anxiety so they are going to give her something else… I forgot the name right now. they will also keep her on the dex.  They need her to be awake enough to breathe well and to drain off the fluid but sedated enough to keep her comfortable.

Earlier today, she was sucking on a sponge the nurses use to wash ou patients’ mouths. She would dip it in water and suck on it.  That progressed into taking sips from a sippy cup and then she became fixated on the cup. Poor girl.  It is so hard to see her like this. She was saying ” mommy, I want you” over and over and I can’t pick her up. It’s awful.

Dr. Hoffman, the chief anesthiologist and critical care doctor stood over her bedside this evening for an hour deciding what to do for her.  Her sats were lower than they wanted, her chest tube output is still high and she is upset.  Her put her back on the pacer to see if he could help her heart beat more efficiently and evenly. Right now, she is resting and her sats are at 90.

So I think she is doing ok. When I ask the docs ify she is doing ok, they hesitantly nod their head.  I would really like to see a confident nod soon…

 

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Pacer wires

Gabi has had a busy morning. Her heart rate was jumping around so they paced her for a couple of hours.  With her fever and all the meds she is on, her heart rate was high and irregular.  It was hanging at about 170 beats when it should be around 110. Her fever is now down and her heart rate without being paced is back down to 114. Good progress. The upper chamber and her lower chamber are not in sync so the pacer wires are sitting on the bed ready to be used, just in case. There is a term for this that we learned, an actual condition called wenckebach.

They weaned down the dex (the sedation drug) to about half so she will def. start to wake up a lot more. She is still generating a lot of fluid out of her chest tubes… More than usual, but then again, there is no real “usual.”

She is on a lot of oxygen and high flow pressure but this is to be expected. Her sats are running around 85, right where they want them. It’s interesting with the fontan anatomy is that they used to want the kids sats to be in the high 90’s but this was leading to poor cardiac output and putting strain on the liver and kidneys. Now they put a pop off hole in the gortex  material where they elongate the inferior vena cava and attach it to the pulmonary artery. This hole, they call it a fenestration, is used to relieve pressure. So they sacrifice higher sats for better cardiac output this way. Dr. Tweddell literalily during the surgery decides how large this hole should be depending on the kid. Gabi’s fenestration is 4 mm in diameter.  In her future, they may need to close this hole via a cath or surgery. Or the hole will be just perfect for her and they can leave it alone.  Time will tell.

Overall, she is making progress but just in baby steps. We are so happyand grateful.

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Extubated!

She is extubated!  Yippee!  So wonderful to get that nasty tube out and hear her hoarse, scratchy voice.  She is still on a lot of breathing support with an oxygen canula but so far she is breathing wonderfully on her own. Plan for today is to try and wean down her sedation and start to wean her off the inotrobes (intravenous heart meds). They won’t start feeding her (through the G tube) until those inotrobes are way down and hopefully off.  The next big hurdle is to play the balancing game of keeping her sedated enough to be comfortable yet awake enough so she can move that fluid off. She hasn’t needed the pacer wires and she still has an art line to maintain her blood pressure.

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Rough first night of recovery

When Dr. Tweddell, our world renown surgeon, is in your room for a good portion of the night… that is not a good sign.  He usually pops his head in nods and walks on.  He is a very calm man with little words.  Last night, he was on his toes. Gabi was bleeding an extradorinarily a lot so they gave her platelets, FFP, and chryo (a form of platelets)- all to increase clotting.  Then all of the bleeding almost stopped.  Which sounds good, but then it is a matter of did the bleeding really stop or is it just not draining… questioning where or not there might be a clot blocking the draining.  Our friend, Caden, a few weeks ago was rushed back to the OR for this reason.  They took a chest x-ray and didn’t see anything. Her O2 sats dropped significantly into the 60’s and 70’s and her renal sats dropped also. The team decided to wait and see what she shows us.  They then gave her albumin which always helps her numbers and that did the trick. Her numbers increased and they all took a breath.

She woke up several times last night and was thrashing around terribly confused.  It was awful.  Because of the breathing tube, she has no voice and I could see her mouth “mommy” but she was confused and pissed.  They knocked her out to keep her quiet for a lot of the night.  This morning at 6:30 am she popped her eyes open and was much more coherent. She looked at me with panic in her eyes but didn’t thrash around.  She reached for my hand while trying to cry and say mommy.  That silent voice is  so heartbreaking.

Ethan and I both held a hand of hers and she wouldn’t let go.  They gave her another dose of versed to keep her quiet but the next time she stirs, they are going to try and remove the breathing tube.  This would be huge!!

She also spiked a fever in the middle of the night and they said this is probably normal post-op. SOmtimes on bypass, the tissue gets irritated and reacts with a fever.  Not alarming yet.

Please pray that the extubation goes well and she can fully breathe on her own!

Thanks… all our love,

Teri

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Platelets

Not much going on. She is still very sedated and resting. She is bleedingand draining a lot of fluid out of her chest tubes so they are giving her platelets to replenish what she has lost and also to help stop the bleeding. Baby steps.

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Fontan complete!

We are back with Gabi in her room! The surgery is complete.  We talked with Dr. Russell and Dr. Nancy along with the anesthiologist and they all agreed that she just needs a little rest and then they will let her wake up so they can try extubating again.  This may happen tonight or tomorrow morning.

We are surrounded by familiar faces- nurses, doctors and resp. therapies. It’s nice to walk in and instantly trust those caring for Gabi.

Our nurse, Ann, told us that Gabi woke up a bit before we were in the room and she was pissed. She was trying to pull the tube out, so they have her pretty sedated right now.  She is on several heart meds, blood pressure meds and lasix to help her pee off the fluid. When we got in the room, I bent over to whisper in her ear that she did a great job and that we love her. I squeezed her hand and she moved her other hand telling me she heard me.  I know she’ll be ok. It’s going to be a balance game of not too much sedation but also not letting her get too agitated.  Once she is extubated, then we’ll worry about those nasty chest tubes.  We’ll take some pictures soon. All her numbers look good so we are relieved and happy. She is resting comfortably.

She is in room 306. Thanks for all the prayers and words of encouragement.  We are so very tired and the fight has really just begun.

One of the hardest things about being here is seeing other sick kids. We saw a little boy today with his parents unloading his car at the valet. He had lost al of this hair and his dad was carrying him.  They had lots of luggage with them and we assumed they were headed for a long stay.  Everyone’s path is unique in this life, everyone has a story, everyone has pain and that pain cannot be compared.  We are so very grateful Gabi is still with us and she is fighting!!

Love,

Teri

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Fontan #7

They tried to extubate gabi but she just wasn’t breathing that well on her own so they had to put the breathing tube back in.  They said it may be hours or not until tomorrow  morning until they try again. They had to increase a few of her meds to increase her blood pressure and as expected she is on cardiac meds to keep her heart pumping – epi and milrinone.  Her blood pressure was dropping but they say this is because they had to sedate her more because of the breathing tube. All in gods time.  We got to see her quickly as they wheeled her out of the OR. She is now in her room where the team will get her settled.  It will be another hour before we can see her.

You keep fighting my little gabi… My baby girl.

 

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Fontan #6

She is almost done! The bleeding has stopped enough where they have closed her chest with sternum wires and then were able to we sew the layers of skin. Next step is to  let her wake up just enough to extubate. This will be huge!  Every surgery that she has endured she has trouble when they take the breathing tube out.

We get to see her for just a second as they wheel her to her room in West 3, the CICU (cardiac intensive care unit).  I can’t wait to see her!  Ethan is more nervous… I am jumping out of my skin in delirious  exhaustion .

We haven’t gotten a room at the Ronald McDonald house so Ethan may head home or may stay with a friend.  At least one of us needs to get sleep. I will stay with gabi in her room.  Our oldest son, Ethan jr., has his championship baseball game tonight.  Unfortunately he is sick and can’t play but he will sit and watch cheering his team on for a little it. One of the hardest things about this is trying to be there for the older kids.  He is so worried  about gabi and i knows he needs us too.  And in his world, this championship game is so important to him and we have to respect him for that. It kills me that I can’t be there to celebrate with him.

But it is just baseball and all about perspective.  The next time I post, it will hopefully be from gabi’s room!

Much much love. And all the support you all have given us is so appreciated.  We are so blessed and so grateful.

Teri

 

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Fontan #5

She is off bypass and doing great! Next step is to control the bleeding and sew her back up. She may bleed for another hour or so but her heart kicked in after they turned down the bypass.  I was so afraid that her heart wouldn’t start back up. That is what happened in her first surgery and she was on life support for 3 days.  But that is not the case!!  She is kickin some butt in there! I feel like I can take a deep breath…

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Fontan update 4

She is still on bypass. They have finishing tightening up the tricuspid valve and are working on the fontan procedure.  Hopefully the bleeding will be under control and they can start warming her heart back up and take her off bypass.  Hopefully this will go smoothly.

So far so good :)

Dr. Cava, oua cardiologist just stopped by and said that gabi will be slightly awake even before leaving the OR. He assured us that the next 48 hours will be very rough.

 

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Update # 3

The nurse clinician just came out to give us an update.  They are done getting through the scar tissue and will be putting her on the heart/lung machine (bypass) in about 10 minutes.  They are going to repair her AV regurgitation (sp?) first and then move on to the fontan.  The regurgitation is a problem she has had from the beginning.  It’s kind of like a backwash of blood into the heart. He will fix this by putting in a few stitches.  The fontan procedure involves disconnecting the Inferior vena cava from the heart and reconnecting it to the Pulmonary Artery.  They will use a gortex material to make a new pathway for this to be possible.  They also make a hole to use as kind of a blow hole to relieve some of the pressure in the inferior vena cava.  They may need to close that in later months/years or it may close on its own or it will stay open and be the perfect size for Gabi.

She has tolerated everything very well so far.  Her vitals are looking good so we are thrilled with this news so far.

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Starting

They have started to work there way through the scar tissue. This will take a couple of hours, then the provider really gets started. So far she is doing well.

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Fontan update #1


Having a little fun while waiting to be admitted.

They just took her.  As we were talking to the anesthiologist and nurses, gabi threw up as she was getting upset.  It was awful. I felt my stomach churning also and my eyes sting with tear.  They gave her a dose of versed,which likes her loopy, thank goodness.We just spoke with dr. Tweddell’s nurse clinician and she will update us every hour. She said the breathing tube is in and she in asleep.  They are starting to put in all of the lines : a few peripheral IV’s and a central line in her neck. We are waiting to speak with Dr. Tweddell…

I feel like my heart has been ripped out.  We are scared but know that she in great hands… Literally in our wonderful surgeon’s hands and also in God’s hands.  Please pray for the whole team that is caring for gabi’s heart.

Thanks for all of the texts and emails and wall posts this morning. Even though we haven’t responded to them all, we appreciate each thought and prayer!

Much love,

Teri

 

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Popsicles!

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Back Into Battle

Gabi had her pre-op on Friday July 6th. I must say usually it is very comforting for us to be at the CHW because when we are there Gabi is sick or in crisis mode so she needs immediate help. This time, she is doing so great and almost like a normal kid.  To hand her over to the docs when she is doing so great is making me sick. We met with Mike, one of the WONDERFUL PA’s there and he walked us through what is going to happen on Monday.  Most of which we already knew.  He walked us through the risks and possible side effects. He walked us through the post op and the long term care.

I have been told what the fontan is several times, but have completely forgotten and don’t really understand the details.  Honestly, sometimes I don’t want/need to know.  I trust Dr. Tweddell and his team so much that I can honestly just say… I trust you, please take care of her.

Gabi had an EKG, chest x-ray, labs drawn and a physical exam. She did great!  Labs weren’t so hot, it took them 3 tries to get the blood they needed. But she was a trooper.

Ethan Jr and Thomas have both had a respiratory virus this past week and I am totally freaking out that Gabi is going to catch it.  I am supposed to call Mike right away if she has any symptoms.  Most likely, the surgery would be postponed for a few months if she does get sick. This would suck.

A few pics from the pre-op.

Just seeing what’s in this cabinet… no biggie

Her puppy dog from Grandma.

EKG

We will post throughout the day Monday… the day of surgery. She is scheduled for first case… 8:30 am with Dr. Tweddell. Please pray for my baby!

Thank you and much love,

Teri

 

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