Archive | September, 2009

Which direction next?

I really don’t even know where to start/continue.  For the past 2 days, she is throwing up everything that goes into her stomach, her heart rate is way elevated, her O2 sats are hanging in the lower 70’s, she is extremely uncomfortable and agigated, she has lost about 200 grams of weight in the past 48 hours.  No fevers, no signs of infection at all.  The docs are stumped once again. Everything was going so well after the brain surgery.

There is nothing that the intesivists and cardiology have changed, so they are narrowing down the problems to the VP shunt. I have been waiting for a consult with neurosurgery all day and finally got a hold of the fellow on call on the phone tonight.  There are several things that might be going on:

  1. The ventricles in her brain are trying to find a new baseline of fluid…pretty much just adjusting to the shunt which would get better in about 3-4 days (this is obvsiously what we want)
  2. There might be an infection in the shunt, but given that she was just on a hefty dose of antibiotics and there are no signs of infection, this is probably not likely or
  3. The valve in the shunt needs to be adjusted. It is definitely working but may be overdraining the brain. I can’t even imagine how painful that would be.

The cardiac intevisits are having some disagreements about how to handle her discomfort.  Some want to put her on anti-nausea meds, others do not.  What they have agreed upon is to stop feeding her because she just throws it all up, so she is on pedialyte until tomorrow morning. We’ll see what tomorrow brings.  Right now, she is watching baby einstein and trying to fall asleep. She actually smiled at me several times today in between vomitting, poor little thing…

Love,

Teri

Comments { 6 }

Small graces

I was pretty panicked searching for the call button as I tried to calm Gabi down. I have never seen a soft spot so sunken down before.  Her eyes were sunken and the sockets were a deep blue.  I couldn’t find the call button and told Ethan I would call him back as several nurses walked in with portable monitors in hand. Nancy was quick to follow.  “We’re going down for a CAT scan right now.”  Gabi was wailing and kicking her feet with tremendous strength.  Paula said just hold her while we walk down there.  Even though I was distraught and sweating, tears of joy filled my eyes.  I knew we weren’t going home in the next days, that hope was gone.  My hope now was for her brain function to be OK. I walked down the hall with my baby girl in my arms; the journey so foreign to her and to me.  A simple grace as walking holding your baby.  How many times I paced with my other children trying to calm them down feeling sorry for myself because my back hurt and my feet were sore.  But now, my back is older and sorer and I am so very tired. I took those simple graces for granted, but to look at my baby girl while my feet moved beneath me was God shining down upon us both.  Gabi instantly calmed as we walked together. The look of confusion and pure joy on her face, I will never forget.  I will cherish that moment forever.

Home will come…as Chris and Michelle always say, all in God’s time.

Stupid stupid intercranial discomfort!!

Love,

Teri

Comments { 3 }

Shifting sands

Good news is that Ganrielle’s head is back to normal. Bad news is that all of the inter-cranial discomfort has caused a lot of vomiting, which leads to dehydration which leads to crappy numbers. Her resting heart rate while sleeping is in the 155 range when it should be at 110. Her renal oxygen sat is at 59 when it should be at 80-ish. Suffice to say, tomorrow’s departure has been postponed.

The neurosurgeon is meeting with Teri later today to talk about how to stabilize the shunt, and once we get that done it will be  matter of getting  few good days in a row. Nancy said to go ahead and get all the certification and paperwork taken care of (infant CPR, 12 hours of continuous care, etc.) and she will just tell us on the day, “Get out.”

Teri and I are both a little down, we were REALLY looking forward to a weekend together as a family, but neither of us disagree with keeping her there to get this stuff figured out first.

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Silver Lining

I was talking to Teri at the end of the evening last night, and there was one highlight from all the CAT scan drama. When we spoke around dinner-time and she said that Nancy G. came in and immediately called Neuro, and once Neuro got there they got her in for a CAT scan right away. This scared the crap out of me. That kind of rapid hospital action ONLY happens when things are critical. To put things in context, the initial brain surgery had a noon start time, they actually got there for prep at 3. That is the time table we are used to working with, so this sort of rapid action is alarming to say the least.

Since they were in a hurry, and Teri was already holding Gabrielle, they made the most sensible decision, have Teri carry her down to the CAT scan. Teri got to unplug her from all her monitors and feeding tube and carry her through the hospital like a regular baby. Teri said that Gabrielle appeared a little confused, since this had never happened in her lifetime. I could feel the joy in Teri’s voice as she told me this last night, and I feel we came out a little ahead on the day.

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Ahhhh-ha?

Car accident:

About 2 blocks from work there is s a stop light, and this morning the wind had blown the temp stop sign down/open (as happens when stop-lights go out) and I see this as I get to the intersection. I slow down to look at cross traffic and try to figure out what is going on. The guy behind me slams into me, and the truck behind him slams into him. Big noise, glass everywhere, and all I can hear are what I imagine are Eastern European swear words.

Mr. BMW (totaled) and I both have State Farm, so that will help with the deductible, and overall headache. The truck in the back I don’t know the details on, but it won’t likely matter to me since we never “met” I was able to drive to work and got away with far and away the least amount of damage. I am fine, might have a little soreness tomorrow, but more an emotional crash than physical, and for that I am very VERY lucky.

Gabrielle:

Rough day. On the drive home I was talking to Teri (HANDS FREE) and Gabi’s head was draining too fast. Her soft spot was depressed and they brought her down to do a CAT scan to check things out. Good news is they were able to get a pretty good view of things, and there is even more confirmation of a lack of brain damage. Right now it looks like it is a matter of getting the VP shunt to drain at the right rate. She is back to laying flat, and Neuro will be in in the AM to talk about what to do next. It seems like the valve/shunt might need some fine tuning, which is another surgery. blargh.

I am happy to hear about the lack of brain damage, and am hopeful that we can get things stabilized in the next few days.

Cable:

Ran a new line and is back on. The cable guy was less then impressed with Uncle Connor’s cable management. What DO they teach them in Seminary school anyway?

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Ahhhh!

She has an increased heart rate and funky low temperatures.  So far, the blood cultures are negative and her CBC looks good.  Needless to say, the docs are confused and watching her closely.  Not sure what is going to happen, they are still tentatively planning on a Thursday discharge, but Nancy told me to be prepared to stay longer for another course of antibiotics.  This rollercoaster is REALLY REALLY unbelievably old….

The neighbors dug up our cables by putting in a new fence, so we have no TV, no internet and no phones at the house…and not to mention big Ethan was in a car accident this morning.  He is fine, just frustrated.

I am done complaining.  I think.  Thanks for everyone’s support, love and help through all of this!

Love,

Teri

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Get this!!

She is scheduled to come home on Thursday!!!

Gabi is doing so great!  She is like a new baby with incredibly less throwing up, she is happy, she is calm…unbelievable.

They are contributing all of her irritability and random fevers to the hydrocelephus, so they have discontinued all of her antibiotics. They will, of course, monitor her blood levels over the next few days to make sure there is no infection.  Her CBC (complete blood count) continues to indicate there is no infection.  They took her PIC line out this morning because it was starting to appear red and feel warm.  They are not taking any chances.  Unfortunately, this means they have to draw blood in her arm, but I know she can take it!

She continues to get  her lovenox injections twice a day to treat those blood clots from her previous PIC line.  That is the last thing I have to learn how to do..give my daughter injections.  Youch!

Her fontanelle (soft spot)  is a little sunken, not like a dehydration sunken, but because her brain is draining a little too quickly, so she has to stay laying flat as much as possible.

We are so excited, of course a little skeptical and nervous, but just can’t wait! We are so so very blessed with what God has given us.  Gabi is a true blessing to our family.

love,
Teri

Comments { 14 }

Perspective

Carsyn Presley Buchmann
May 22nd, 2009 – September 14th, 2009

Comments { 5 }

Doing well

Gabi is doing great. She is still throwing up a little bit, but she is a baby and she still has half a heart, so we’ll cut her a little slack. Her attitude and demeanor has totally transformed. She is so happy and content now. Poor thing is probably so relieved from all that pressure. She has had no fevers, but the docs want to finish out her course of antibiotics. They will continue until Oct. 1st and then after that, we will see. I know the docs don’t want to say home or even try and predict what is going to happen. SO, we are taking one day at a time at this point.

Dr. hehir and Nancy are going to examine her CAT scan again to look for any possible damage she may have to her brain. They say she might not be the best student, bringing home B’s and C’s with a possible, slight learning disability. I don’t know HOW we could live with that!! :)

Before the VP shunt.  Her head circumference was 45 cm.

Before the VP shunt. Her head circumference was 45 cm.

after the surgery. you can see the 2 incisions on her head

after the surgery. you can see the 2 incisions on her head

This is where the shunt starts and runs down her body into her abdomen

This is where the shunt starts and runs down her body into her abdomen

After the surgery.  Ahhh relief!  hed circumference down to 42 cm.

After the surgery. Ahhh relief! hed circumference down to 42 cm.

Thanks for the visit Lisa, Mrs. G, and Jarod. It was SO great to see you and I so appreciate you making the trip up to Milwaukee. Love you guys.

Love,
Teri

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Recovering Well

Gabi is recovering nicely from her VP shunt surgery. Her head circumference has already shrunk from 45 cm’s to 41 cm’s, just in 24 hours! We took some pictures of her giant head…The neurosurgeon said that she probably had at least 2 cups of fluid accumulating in her brain. The nurse said it was described in her chart as a massive hydrocephelus with 3 out of 4 ventricles accumulating fluid. We are hoping this will explain all the random fevers, vomitting, irritability…etc. She has probably had terrible headaches and pressure but her pain from the surgery and her irritability seems to be improving as the day passes. The docs are thrilled with her progress. They have turned her feeds back on at 15 cc’s/ an hour and hopefully her belly will tolerate this. She has been peeing triple her normal amount, which means that the shunt is working and she is peeing off all that brain fluid. Praise God. It is funny how God works sometimes, if we had gone home, we proabalby would have had to rush her back in and it probably would have taken us more time to figure out there is a problem. She stayed here for a reason that only God could have known about.

Thank you all for your kind words and support. We don’t know yet what the next few weeks hold for her…could be the next surgery soon, could be home…we just continue to pray for patience and strength!!
Love,
Teri

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Brain surgery a success

Quick update: The neuro surgeon, Dr. Lee, decided that the MRI was not necessary because the signs of fluid were so obvious. Her forehead was gigantic and her eyes were quite low. They took her down to surgery to put in a VP shunt. This tube runs from the top of her brain/head where the ventricle is clogged runs down behind her ear (under her skin) down her neck on top of her ribs and then down to her abdomen. This allows the fluid build up to drain off her brain. This will stay in her entire life, as her body becomes dependent on this shunt. She is doing well pos-op. The narcotics aren’t having much effect on her, so she came back to her room very alert and as Dr. Hehir said, “appropriately pissed off.” I will post more details later.

We had a very late lunch with Chris and Michelle while Gabi was in surgery and it was fantastic to get out with them and laugh together.

Of course, at home all the kids have the stomach flu, so thank you to Grandma Colleen and Grandma Cass and Shelly for helping out at home! WE love you all.
Love,
Teri

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Light brain surgery

We just got off the phone with the doctor. The CAT scan showed what they expected, she has enlarged/plugged ventricles in around her brain. This is a common side effect of ECMO since it puts so much stress on the whole system. Since they are blocked, they have not been able to drain correctly, and fluid has built up around her brain. Since she is still an infant she has a built in pop off valve in her soft spot, and this so far has alleviated most of the pressure, and the doctor doesn’t think that there has been any further neurological damage that wouldn’t have been there from ECMO and the rest of the stress of her young life.

She is scheduled for an MRI tomorrow to get a more detailed view of what is going on. We will then meet with some neurologists to talk about what to do next. The normal course of action is to do some “light” brain surgery and install some shunts, which will drain the fluid from around her brain into her abdomen. Once here the body can just absorb it. Side effects of her current condition include irritability, vomiting and more whites showing on the top of the eyes. The eye thing was what the docs saw to trigger further investigation, and the other two had been attributed to normal heart kid stuff. It would be nice if this got rid of/lessened the feeding issues.

We will post more information tomorrow after the MRI, but as it is now she will go into surgery sometime in the next couple of days, and recover from that SHOULD be a couple of days. I for one, would really REALLY like things to go as expected on this one.

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Hydrocephalus

WE got a call from Dr. Hehir today at 4:00 with horrible news. The doctors were concerned with Gabi’s eyes, so they ordered an ultrasound of her head. This ultrasound revealed fluid in her brain. They also saw the 2 ventricles that bled as a side effect of the ECMO she was on after her surgery. Dr. Hehir took her down for a CAT scan more than an hour ago to find out the severity. We are, to say the least, anxiously awaiting a phone call from him. He said to be prepared to drive up to Milwaukee tonight…Please pray for my baby girl!
Love,
Teri

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Pictures

Gabi is doing fine today. The ongoing plan is that the course of antibiotics will continue until Oct. 1st. Then will do anther culture to make sure the infection is gone ( even though nothing has come up positive). They will take out the PIC line. She is also going to be scheduled for her cath. She needs to have a cath done before her second surgery, the Glenn. The plan is still for her to come home for about 2 weeks after that. The signs of an infection are getting better. No fevers for about 48 hours now, her heart rate is much lower, between 110-160. Blood pressures are evening out too. Right now, we just wait for these antibiotics to finish their course.

Only good thing about an IV in your head...so your mother can put a bow on you!

Only good thing about an IV in your head...so your mother can put a bow on you!

What are you looking at?

What are you looking at?

Our primary nurse, Nicole, had to go have a baby of her own!

Our primary nurse, Nicole, had to go have a baby of her own!

Nothing to say or feel but deep deep sorrow

Nothing to say or feel but deep deep sorrow

At Carsyns burial... waiting to let go of the balloons we all wrote a message/prayer and attached it to the string

At Carsyns burial... waiting to let go of the balloons we all wrote a message/prayer and attached it to the string

We love you Carsyn... you will always be in our hearts.

We love you Carsyn... you will always be in our hearts.

Love,
Teri

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what to say… what to say

Carsyn’s service and burial were beautiful. Chris and Michelle and Camryn and Casey held themselves up so admirably. They were strong and loving and sad and in disbelief. They laid Carsyn in an adorable bassinet for her visitation. She looked so peaceful. She was born on May 20th, so by the time we got to the ICU on June 9th, Carsyn had already had her first surgery. I have never seen her without tubes and wires and beeps and alarms. She was always trying to open her eyes, or breathe over that horrid ventilator. But she is at rest now. And I know she was looking down at her loving family and adoring friends wishing she could tell them she is OK. She is holding God’s hand and running in the breeze free from pain. No one should ever have to see a casket the size of an infant. It just isn’t right. There were many nurses and the other staff there supporting Chris and Michelle. Carsyn became like a daughter to many of them. It was difficult for them as well. They let go of balloons after we all wrote a message on the end and Chris and Michelle planted a weeping cherry tree in their backyard to remember Carsyn forever. The pictures and video they had of their beautiful daughter will forever be with us, as Carsyn will always be in our hearts.

Gabi is doing OK. Her new PIC line is swollen and bleeding a lot. They have her leg elevated and hopefully that will help. Last night, she threw up for 2 hours straight and no one knows why. Her vomitting has slowed down so much in the past week that this was a surprise and a mystery. She spiked another fever of 39.0 celcius (102.2 F). They just don’t know what is going on. They stopped her feed drip last night at about midnight and just turned them back on at noon today. Heather, who was Carsyn’s primary nurse, is now with us (yeah!). Nicole, our other primary nurse just went on maternity leave…she is having her baby this Tuesday…good luck Nicole! Ethan is up in Milwaukee today and I just spent over 2 hours putting together this ridiculous marble toy that Thomas got for his birthday and it doesn’t even work!!! Ugh! I should have just stuck with my original idea… a bag of M&M’s. At least I get to spend time with my children.

Love you all!
Teri

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New PIC line

Dr. Hagen has decided that she does need a new PIC line. The IV in her head infiltrated very quickly; it only lasted about 20 hours. She still hasn’t had any fevers now for 48 hours, but he and other docs feel that the clot in her leg still may be infected. I am quite frustrated. I am not a big fan of drugs and treatment for a “just in case” kind of scenerio. I hardly even give my other kids tylenol. But they are the experts and certainly know a heck of a lot more than me. So, I will trust them. She goes down to radiology at 2 pm today. She will be slightly sedated for the procedure. She will need 7-10 day treatment with vancomycin. Since they have taken so much blood for the cultures, her crit level is now low, so she will need more blood as well. I suspected that when I watched them take 2 large vials of blood from her yesterday.

Her ECHO looked fine,as fine as a half a heart can look. Her heart still has mild to moderate tricuspid regurgitation, but they are hoping that will improve with growth. Her right side is thick, but squeezing well. There are no clots in her heart, which is great. Her kidneys and liver look good as well.

We have Carsyn’s wake tonight and the funeral is tomorrow morning. Please please pray for strength and courage for Chris and Michelle and their entire family. These next few days/weeks/months…years are going to be so difficult.

Thank you to Grandma Cass, Grandma Colleen and Shelly for all of your help the next few days. And of course, a continued thank you to Ethan’s wonderfully generous Aunt and Uncle…we are so grateful!
love,
Teri

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New Day

It has been a rough few days, as you all know.  Thank you all for your kind support.  I feel like I need to pass the support over to my friends, Chris and Michelle, but I pray that they are receiving lots of support from friends and family.  Our new heart family is a tremendous group of peoole: so supportive and understanding. We have Carsyn’s wake and funeral the next few days and although I look forward to seeing my friends, I can’t imagine what they are going through.  When I was pregnant with Gabi, I often wondered if I was going to be planning a first birthday party or a funeral.  No one should ever have to plan a funeral for their child.  There is a reason for all of this. We may never understand God’s plan for each of us, but He does and we just have to trust Him.

Gabi is doing better today. This morning, Dr. Hagen decided not to put in a new PIC line today, but it still may happen tomorrow.  They are watching for fevers and her heart rate closely.  They tried to get a blood culture last night, but were unable to get access to a vein, so they will try again in just a little bit. Dr. Hagen was able to get an IV in…in her head! So, she is getting IV fluids and her antibiotics for now. Last night, her G tube cracked so it was a leaky mess and unusable.  This morning they replaced her tube with a more user friendly MicKey button.  It seems to be less messy and definitely smaller so it hides under her clothes. At this point, I am not really sure what is going to happen. They are treating the clots with 2 injections daily of lovanox (which we are going to have to learn how to adminster if we ever get out of here). They are still watching her to decide if there is an infection and what the treatment will be for that.

We’ll see what the rest of the day brings. 

Much love,

Teri

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IV

They have sedated Gabi and are giving her a new IV right now. While they have her sedated, they are going to do an ECHO to see how her heart is functioning.  I spoke with a new doctor today, Dr. Hillary, a hemotologist.   Now I am learning all about blood consistencies and production. I know Ethan knows a lot about this already because he has had a blood clot in his shoulder for about 15 years. 

Dr. Hillary explained that the treatment for the clots will be 2 daily injections of lovanox, a form of heparin. She has been on one injection a day for about a month now to prevent any clots…I guess the preventive didn’t work.  I asked how common this is and of course, it only happens in about 5% of patients.  So, hopefully the clot will do one of 2 things.  One would be that the body will naturally absorb the clot in a few weeks and it won’t be a problem.  Two, could be that the clot is obstructing too much blood flow and then the blood will find another way around to get where it needs to go. (there is a name for that, but I forgot).  Dangers of this are that the clots can become infected, if they aren’t already. The body can start producing too much blood and the consistency gets too thick, whcih would be really bad for Gabi’s heart. 

So, they are starting her once again on vancomycin, which is really really tough on her little veins. She hasn’t had any fevers all day and they really don’t want to have to do another PIC line.  Busy day for Gabi…I am hanging on here.  Ethan is hanging on at home.

Love,Teri

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Less than great attitude

I have a less than great attitude today. I feel like I may loose my mind.  I can’t stop crying about Carsyn and then we find out this morning that Gabi has 3 clots in her right leg (upper thigh) where her PIC line was. They did an ultrasound yesterday of her veins and think that it may have been one large clot that has now broken up into 3.  Dr. Hagen is talking to the radiogist now to see how large each is and find out how it is affecting the blood flow. Dr. Musa suspects that the clot 0r clots may be infected which would explain the higher heart rate she has and the fevers.  To treat this would be another PIC line and at least 10 more days of strong antibiotics.  She has been on antibiotics almost her entire life and they are afraid of her tolerance for them in the future. All of her cultures have so far come back negative and her white and red blood cell count are normal. There is no evidence of infection other than a higher rate and low grade fevers.

Dr. Hagen knows something just isn’t right, but he just can’t put his finger on it. Nancy is in London, but they have already talked with her several times about this.  They have agreed on one thing for sure, Gabi will not be coming home tomorrow or anytime in the next week.  They have also mentioned after the 10 days of antibiotics that she may as well receive the Glenn because that will almost bring us to October. This whole thing sucks. It totally sucks. I need a hug from my best friend, I need him to tell him everything is going to be OK…I need my husband and we are yet still separated on this journey.

At least my baby is still here with us.  I can still hold her and talk to  her and see her beautiful eyes staring up at me, so at least there’s that.

I already miss Chris and Michelle here.  The whole unit is a little sad today. Everyone loved having the Buchmann’s here. They brought smiles and hope to everyone around them. I ran into several nurses and Jenni and Jackie from PT and we just didn’t have any words for each other. We just cried and hugged.  Carsyn made a huge impact on this floor.  She will be remembered by many always.

Love,

Teri

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September 14th

This truly has been the worst day. Watching Chris and Michelle say good-bye to their precious little girl was indescribably heartwrenching. Their little fighter Carsyn is an amazing little girl and I am so honored that I got the privedge to know her and her parents. She is now free of tubes and wires and IV’s and medications…I just wish there was something I could say to my friends that could provide just a bit of comfort.

Gabi is doing fine.

Love,
Teri

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Carsyn Presley

caringbridge.org/visit/babybuchmann/journal

Please pray for these dear friends of ours.

MONDAY, SEPTEMBER 14, 2009 12:07 PM, CDT

We met with the team of doctors this morning, and the news is terrible. Carsyn is going to a much better place with no pain no tubes no wires. She will have the best Grampa in the ever , walking hand in hand with him and Jesus.  We are here as a family we are taking Carsyn out side  to feel the sun and fresh air. She has taught us so much. This does not end the need for prayer we are going to need all your support to get through this time, for we could not get here with out all of your support. we thank you all for that….

Carsyns pain is over ours has just begun.
We give Carsyn to you lord Jesus.
Chris Michelle Camryn Casey And forever in our  hearte, FIGHTER CARSYN

I don’t even know what to say really. We have been walking this same road together for so long, this feels like my own kid. When I go to Milwaukee on the weekends they are my second stop after rounds. If they aren’t there I get the updates from the nurses or doctors. When I am not there for Teri, Chris and Michelle take her out to lunch. Now they are there, letting their dear daughter go back to God, and I am not. It tears my heart out.
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Random fevers

Gabi is doing well, except she keeps spiking these random fevers. All of her cultures have come back negative but the docs insist on maintinaing this crazy course of antibiotics. Oh- they took her PIC line out and managed to get a peripheral IV done by the transport team (the ones that fly the helicopter…so cool). She is now on ampicillin, gentacillin, vancomycin and sephapim..I mean really? Last night, after many hours of observation, her IV infilitrated, so the docs had been pumping her full of antibiotics, even though she completed her 10 day course. They did this because they knew that IV was not going to make it through the night. it was taken out at about 9:30 pm. They called down to transport to get another IV but were told that Gabi’s veins were just not strong enough to get another line in. So, they decided to wait until tomorrow, meaning today. At about 11 pm, a fellow came in and I asked what he was doing and he said he was going to put an IV in…what?! I said ” I don’t mean to challenge you, but I don’t think so…” He wasn’t too happy, but I expressed my concerns that she really doesn’t need all these antibiotics…it’s just a fever for goodness sakes! So, he went back to talk to Dr. Hagan and they agreed to give her one oral one, but not to do another IV. So, I will be on a vigil watch today so they don’t poke her.

They are also ordering an ultrasound of her kidneys because her blood pressure is a bit high. Apparently kidneys produce a hormone that affects blood pressure according to the amount of blood flow. So, if her blood vessels carrying blood into her kidneys are constricted, then it could be producing too much of that hormone. She is on a dose of captopril at 5ml, raised from 3 ml in the past week to relax her heart and vessels to lower blood pressure. We’ll see what the results say.

Her demeanor is great, she is tolerating her feeds well. I really hope and pray we are still on track for a Wednesday home coming.

Thanks for all the support. We love you all.
Love,
Teri

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Rough Saturday

Gabrielle had a rough day today, but the docs are still planning on a Wednesday discharge date! Gabi spiked another fever yesterday, so they really need to get her PIC line out because it is a source for infection. But she still needs to receive antibiotics intravenously. So, they had to try and put in a peripheral IV in her wrist or foot. 2 docs have tried but were unsuccessful. They are waiting for the transport team to come in and try to get a line in now. They are supposed to be the best at putting in IV’s. Poor thing has been poked so many times today. Her hematocrit level was a little low today They gave her additional blood to boost her red blood cell count up. She may need a transfusion every 2 weeks or so, but we can do that at our weekly clinic visits. She is still throwing up, but only a few times a day. She continues to gain weight, which is great news.

I am very grateful to my Mother for going up to stay with Gabi today while I stayed home and had much needed time with big Ethan and all the kids. We had our block party tonight and our neighborhood is so awesome and supportive that I really didn’t want to miss that. We all had a great day. Poor little Gabi had a rough one, but she’ll be here soon enough! Thanks Mom. I love you.

Our friends need prayers and hope desperately. Little Carsyn is fighting for her life. She has some bleeding in her brain and it appears to be getting worse. Her incredible parents’ hearts are breaking as they watch their little girl suffer. I pray that they find peace and can trust in God that whatever does happen, God is holding them all in the palm of His hands. Their website is caringbridge.org/visit/babybuchmann
Love,
Teri

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A blog I follow…

Gabi is doing well. She had a great night and so far a great morning. 2 more days of the antibiotics that are causing her awesome diarrhea and of course extreme diaper rash.

I often get extremely overwhelmed and frightened when I think of Gabrielle’s future. The kids that have survived with her HLHS are just reaching their 20’s and few have reached their 30’s. We truly have so much faith in research and technology. Who knows, in 20 years they could be growing new hearts. But when I get afraid and overcome with tears, I turn to my faith. I have complete trust in God that whatever does happen, we will all be OK. I pray for strength for Ethan and myself and my children that we can be strong and live the best life we were meant to live, whether that be one more year or 50 more. But I still worry. I worry about all the surgeries in front of us. I worry about Gabi getting afraid…I worry about facing her death. I worry about my 3 older children facing their sisters’ death. I worry a lot. Then I read this:

Do you trust God? If you were asked this question, your immediate response would probably be, “Yes, I do trust God.” If you were also asked: Do you ever worry? Your answer would probably be, “Yes, I worry sometimes.” My friend, let me say that if you truly trust God, then you would never worry. If you choose to worry in any situation then know that you are not fully trusting in God.

Trust God or worry. Those are the two choices you have in every situation. Trust God and be at peace. Worry and experience stress. Your choices are that simple and you will make your life as peaceful or stressful as you choose to make it. Trust God and be at peace. This is all that is asked of you. Yet, over and over again, you choose worry over trust, and make your life a living hell.

- James Blanchard Cisneros, You Have Chosen to Remember: A Journey From Perception to Knowledge, Peace of Mind and Joy, p. 128

Now,this does not mean to sit on our butts and do nothing. As my Grandma always said, “God also gave you a brain…use it.” We still have free will and He expects us to make good choices.

I have been following a blog entitled Living With Eden about a man named Paul Cardall. He was born with a significant heart defect and has been waiting for a transplant heart for a year. Well, he finally got his heart and is doing well!! His writing is so honest and full of life. His trust in God is so inspiring. When I was pregnant with Gabi, I often woke up thinking I was living a bad dream. Every time I went to the doctor, I kept thinking he was going to look at her heart and say, It’s a miracle, her heart looks fine. But that never happened. And I couldn’t believe that I was going to possibly face my worst fear. The death of one of my children. And we controlled everything that we possibly could. We chose the best doctors we could find after so many interviews and appointments. But when she was born, I have never been so terrified. I said I trusted in God and everything is in His hands, but I really didn’t know what that was. I now know that we cannot control anything. Our lives are so incredibly vulnerable and God is the only one that can provide comfort. And to face our exhaustion and our fears everyday is only temporary and I repeat to myself “Thy will be done.'”

I don’t mean to say that Gabi is not doing well, because she is. But her heart will never be “fixed.” And I think of Carsyn who has gotten a new heart and is still struggling. And a young boy at age 19 named Logan, who was 3 doors down from Carsyn died a few weeks ago. He received a transplant and begged his mom to let him go after so many complications. To trust in God that whatever happens to my daughter and all of our precious new heart kid friends is all we have. Our culture has trained us to be so afraid of death, I am going to choose not to be afraid and trust.

Paul Cardall’s website is at mytricuspidatresia.blogspot.com/. He is truly an inspiration and has a darling family…

John 6:63
The Spirit gives life: the flesh counts for nothing.

Love,
Teri

Look at my cheeks!  Yes, Docs I am gaining weight just fine.

Look at my cheeks! Yes, Docs I am gaining weight just fine.

Look there's a hand!  Does that belong to me?

Look there's a hand! Does that belong to me?

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Comments { 4 }

Tuesday or wednesday

With the risk of jinxing it, Dr. Hehir said they are looking at a discharge date of next Tuesday or Wednesday!!! We are so excited! Of course, next week we have a ton going on with preschool starting, snack days, homework (that the neighbor boys can’t do!) Thomas’ birthday…and I have to be here, at the hospital, all the time to do all the cares before they will let us go home. Gabi has to have a car seat test where she has to tolerate being in her car seat for 2 hours. Both Ethan and I have to take a CPR class…lots lots lots happening. But praise God, it is all good things!

We are so blessed and so thankful…

Please continue to pray for Carsyn. Her family is so strong and so positive and their faith is so inspiring. Carsyn is strong, I know she will pull through this. But she is tired and needs all the support we can give her. Their website is caringbridge.org/visit/babybuchmann Hang in there Buchmann’s!
Love,
Teri

Comments { 2 }

09-09-09

HAPPY 3 MONTH BIRTHDAY GABRIELLE!

She is doing great! No fevers yesterday, but they want to continue the course of antibiotics for at least 10 days, which will bring us to Saturday. They will culture her again, if it comes back negative they will take that PIC line out and wait another day to make sure everything is OK, then we are out of here!!

She remains at continouss feeds, which means she will be connected to a feeding pump all the time, but I don’t care…she will be home. Ethan and I joked about getting a plastic tarp to put under her because she is still throwing up quite a bit. She has gained weight for about 5 days straight now, so the docs are happy. She is up to 5.17 kilos. Thomas’ 4th birthday is next Friday. I am praying that she will be home so we can celebrate as a family. How awesome would that be!

Please PLEASE pray for no more infections and for her to continue to gain weight. We cannot thank you enough!
love,
Teri

Comments { 3 }

10-14 days

That is what one of the IC docs told Ethan this morning when he asked about going home. The course of antibiotics is 10 days, different from the original 7 day course that they told me. After that, the need to wait 2 days to get the results of a new culture to make sure the infection is gone. Then they can take the PIC line out and then we can take her home! That is, if nothing else happens until then. We are trusting that God will provide this grace for us. I know it is in His time and I feel like the time is almost here.

Thanks for all the love and support.
Love,
Teri

Comments { 3 }

Just when you think…

Just when we think we can’t take anymore, God continues to bless us with a great night and good morning. I have talked to several dear friends this morning and I feel sooo much better. I got to walk Ethan Jr. to school this morning and every time I call the nurse at the hospital, she says Gabi is having a great day. It’s amazing what a little fresh blood can do for her. I think I need a tranfusion sometimes. She continues at her goal feeds…27 cc’s at 24 calories. She has only thrown up twice in 12 hours, so the docs are happy with this progress.

Still no mention of home yet, but the antibiotics will continue until next Wednesday, so we’ll see next week brings. There is a light and the sun shines today!

Love,
Teri

Comments { 2 }

Getting blood but feeling better

Thank you all so much for the support and prayers. I know God has put you in all in our life to carry us through this time. We are feeling better today and so is Gabi.

She is having a good day so far. Dr. Rao ordered a blood transfusion for her today and explained to me that because they have taken so many cultures from the infection the past few days, she hasn’t had time to reproduce enough. Her hematocrit levels are low, so more blood will help her so her little body can worry about other things…like her stomach issues. Which she is doing great with! She is up to 27 cc’s an hour at 22 calories. 27 cc’s and 24 calories is her goal, so she will be there by later today or tomorrow. Then they will give her a few days of this and then try bolus feeds, which is more like 45 cc’s every 3 hours or so and then a continuous drip at night. She is still on the antibiotics, which are pretty strong, but no fevers so far today and it seems like she is feeling a little bit better.

I had a great visitor today! Gabi’s Great Grandpa Danstrom came up this morning and it was so great to see him. He always has wonderfully inspiring stories about his childhood and raising his 5 children. It was nice for him to see where we spend most of our time here…made me feel a little less lonely. God sends his graces in unsuspecting ways. Thanks for the visit GG! We love you very much.

No mention of home today, but I know we have 6 more days of the antibiotics and hopefully by then the feeds will be under control. Her glenn is going to be in October, so even if we get a few weeks…even one week at home, we will be so thrilled. I prayed last night for strength and a good nights sleep for me and Ethan. Even though I am not physically with my husband right now, I know Jesus is uniting us in His own special way. Our special little girl is His gift to us that I wouldn’t trade for anything. And I know His grace shines from above through all of you. So, even though I haven’t responded to each one of you or returned all of your phone calls, please know I hear them and read every message and I can’t tell you how much they all mean to us. I think of all of you all the time!!

Love,
Teri

Comments { 2 }

Infection

Last night was a difficult night.After rounds, I talked to Dr. Rao and we decided to go up on the volume instead of the caloric density of the formula first. So, the nurse increased the feeds to 25 and she was doing OK and sleeping in my lap for about an hour when she started to get a little squirmy and she didn’t look that great…kind of dusky. Her heart rate was climbing to about 175 while she was resting, then it went to 185ish then up to 190’s while she was resting. That is when I reached for the call button. The nurse listened to her and her blood pressure was up to 125/90 with a mean of 95…quite high. Her respiratory rate was increasing to about 90 breaths per minute. The nurse went to get Dr. Rao and left for just a second when her heart rate soared to 210 while she was resting. I pushed the call button again but the alarms were already going off. Another nurse came in and took her rectal temp and it was 103.5. The nurse put some ice on her neck and Dr. Rao ordered a dose of captopril to lower her blood pressure, vancomycin and sephapim (2 antibiotics), some tylenol and to stop her feeds. I put her down on the bed when the lab girls came in to draw blood and by that point, she was quite lethargic. Her heart rate was up to 220 by this point. They got the blood and a urine sample and were on their way. I held her until her fever went down and she was comfortable for a while.

This morning the blood cultures came back positive. She has an infection from her PIC line. The treatment is vancomycin for 7 days. They want to take that PIC line out, but now they need it to treat this infection. SO, they are dependent on the source of the infection! Crazy. Today her heart rate is still elevated, but much better. They are keeping a close eye on her. They increased her feeds today to 25 cc’s an hour and by the end of the day, she will hopefully be at her goal amount of 27. Then they need to increase the calories from 20 to 24 per ounce. Hopefully she will tolerate this.

We are feeling pretty down these days. School has started and it is beautiful outside…we just want our family together. Other families have come and gone and yet we are still here. But I know it could be much worse. Gabrielle is still with us, many families have had to let their children go home to Jesus. So, I am very thankful, but still we pray for strength to persevere.

Please continue to pray for Carsyn and her family..she needs to pee more and is having a cath done today, which can be quite invasive. Her website is caringbridge.org/visit/babybuchmann

Thanks for all the prayers,
Love,
Teri

Comments { 9 }

Holding steady

Gabrielle is having a great day. It seems that if they go REALLY slowly with her, she does a lot better. She is taking 23 cc’s per hour of Portagen-prostamil mixture now and has been doing well all day. At night rounds, Dr. Rao and Laura, the cardiac NP, debated about either increasing the calorie concentration or go up on the volume. They decided to go up on the concentration. So they will increase the calories from 20 per cc to 22 per cc. Hopefully she will tolerate that and actually gain weight by tomorrow. She didn’t loose any today, but stayed the same as yesterday. I think she is at 4.65 kilos. The lipids are still on and she is still on pepcid for reflux and sulcrafrate used for treating ulcers. Her blood pressure was high so they did a chest x-ray to make sure there was no fluid buiild up in her left lung, but the x-ray looked clear (phew!), so they increased her dose of captopril and she remains on digoxin, aspirin and the lovanox injection.

She is smiling a bit more frequently, although the scowling and nasty looks are her more common facial expessions. Poor girl. I keep telling her all about home and her brothers and sister that are anxiously awaiting her arrival…not to mention her Daddy. We’ll get there in God’s timing.

Love,
Teri

Comments { 2 }