Grateful and Guilty

This is how I feel today.  I am grateful because Miss Bella is having a perfectly good day.  Her PEEP has made it’s way down to 8.  Her FIO2 is at 65%.  She has only bradied once – when the x-ray tech slide the film under her back.  (poor lady!)  But she bagged up eventually.  Yeah, yeah, yeah!  I am hoping this is the first day of an upward trend.

I feel so guilty because I am not with her today.  Yesterday the hospital passed out all kinds of info on swine flu.  The little one that passed away was in our unit, but not near us.  So then I came home and found out that my babysitter and Lizzy were very busy vomiting every thing they had ever eaten.  I spent all night taking care of Liz.  Kris spent all night hugging the porcelain throne upstairs.  So I stayed home today.  Bella cannot get this!  I (or Jason) have been with Bella every day since we meet her.  I keep calling the nurse.  I’m sure I’m driving her crazy, although she assures me I’m not.  My fellow called me and gave me a very thorough update.  He said they were shocked when I wasn’t there during rounds. (more guilt)  Tomorrow starts a new rotation (May).  We will be getting a new fellow.  My sweet fellow told the new guy that he was getting one of the sickest kids in the ICU and he better be on his A game.  He is a bit intimidated.  :)  He will grow to love her like the rest of us.

Afternoon Update

We have had several rough days lately, my poor husband has been working, and just getting reports from me.  He was getting more and more worried and then today decided that he couldn’t wait for his day with his Bella Bug, he needed to come and see her today.  Evidently, it was exactly what our little one needed.  She has been much more stable the last few hours.  They have been able to wean on the O2 down to 80% – so at least we have some wiggle room back.  She is sating in the upper 80s.  Jason was able to talk to the doctors himself and not get everything through a filter (me).  He is feeling better.  Bella is behaving better.  And I had someone to eat lunch with - Yeah!

The gram rods that grew in Bella’s tube were able to be identified and she is on the correct antibiotics for that.  The attending feels that with a bacterial infection, the kids do worse for 3 days and then start doing better.  Today is day 3, so we are ready to start doing better.

I have to thank everyone for your encouragement.  We so appreciate it!  Jason told me today that he would have given up all hope if it wasn’t for y’all that post and tell us that you were here and now you are home.  Thank you.  You offer us hope – and we are grateful!

Swine Flu and Puzzling Bella

We live in Houston.  The very first death from the swine flu (or the PC term, North American influenza) here in the US was right here in the medical center.  It was a sweet little 23 month old from Mexico who had come here for treatment. This of course makes you wonder about safety and what is being done here.  First off, all of the employees are being screened.  They have implemented a policy that ANY patient that comes in with any type of respiratory anything will be placed on droplet  - masks, gloves, plastic gowns.  I have overheard the doctors saying that they might make one pod (section) of the ICU just for the flu if it gets there.  It’s scary stuff, but hopefully it won’t be a problem.

Bella, on the other hand, is having problems.  She just isn’t sating well.  She is currently at 100% on her FIO2 with a PEEP of 11 and her Nitric is up to 20.  They don’t have much wiggle room left.  She is sick.  Her Blood pressure is trending downward, but the increased Nitric could account for that.  Her heart rate today (new trick) is trachy (going faster).  Chest x-ray shows the pleural effusion a little worse.  She is receiving excellent ventilation.  Her problem is oxygenation.  They are trying to optimize her nutrition, keep her negative (more out than in), and do whatever makes her happy.  Obviously, she continues sedated and paralyzed.

My Sensitive Soul

Bella had a pretty good morning.  Pulmonary says that her heart is fixed so she should be sating above 90, so add more Nitric and wean on the O2.

Her albumin and potassium are a little low.  So as I left for lunch, her albumin was starting.  I came back to her doctor bagging her and asking for atropine to be brought to the bedside.  I found out she was having a diaper change and bradied.  She did not code, but she thought blue and marbled sounded like a good idea.  Her x-ray shows a pleural effusion in the upper right lobe.  (The sad thing is that I can read the x-ray myself.  The things we learn in this journey called motherhood.)  She is a very sick little girl.  Two adjectives that people use all the time to describe Bella are sensitive and fragile.  The ICU team has decided that weaning on the O2 is not a good idea right now.  She is on some high pressure and 80% oxygen (down from her little episode). 

Then she had a brady and desat to 54 during an IPV treatment.  She used to love those – not any more.  Fortunately, she is recovering from these episodes.  She really does not like to be touched these days.

Results from the ECHO – pretty much what we thought yesterday, heart is functional, valves are competent, her pressures are a little worse – but still just good ole severe pulmonary hypertension  :)

Signs you have been in the hospital too long:

The new RT asks if you work here.

The x-ray tech knows your baby’s nickname.

The rotating volunteers in the Ronald McDonald House recognize you.

You are calling doctors by their first name.

So far,so good.  For the last 8 hours, Bella has been negative.  Good!  We have got to get rid of this swelling!

She didn’t like the echo, she kept desating.  So they had to turn her O2 up to 100% for a while.  We are slowly working down.  We are at 90 now.  They are going to leave her Nitric alone for now – maybe go down to 4 late this afternoon.  Her BNP is again higher, but still under 100 (83).  I don’t have the results of the ECHO yet, but I heard (and wasn’t supposed to hear) was she didn’t see much change from the ECHO on 7th.  We’ll wait for the final report to know for sure. 

The good Father came and talked with me today.  He prayed over our girl.  I’m not Catholic, but I surely appreciated the Father’s kindness.  He recognized my face and knew that we had been here a long time.  What a kind and gentle man.  He invited me to Mass on Wednesday, which I thought was sweet.

I am seriously considering staying over tonight – yes, that means sleeping in my super comfy chair.  Bella has been having problems every night and recovering during the day.  She needs a good night – several in fact.  :)

In case you are wondering, no surgeries, of any kind this week.

What are we missing?

Last night (and it had nothing to do with being on her tummy or her back because they hadn’t flipped her yet), she started to desat.  Her vent pressures got really high.  Eventually she ended back on the Nitric and Vec.  She spiked a fever of 102.3 and had diarrhea.  Samples of blood, ET secretes, and urine have been sent to the lab.  Her lungs are wet and wheezy.  And she is so swollen.

Her ET secretions grew some gram negative rods, so she has been started on 2 antibiotics.  Her total fluids have been reduced to 75%  of her maintenance level to see if they can dry her out a little.  He would also like to get an arterial line.  His plan is to go slow, be careful and be safe. 

He was off all weekend and was upset at how she is doing today.  The day nurses keep saying, we fix her during the day and they break her at night.  In those comments, I see how they are coming to love sweet Bella.  Everyone wants her to get better.

Strong

(Quote from Facebook)

Dedicated to my sweet girl…

You never know how strong you are until being strong is the only choice you have.

Hard Night and Quiet Sunday

They turned Bella at 11PM onto her back.  She was not pleased.  They worked and worked trying to get her to sat above her minimum requirement of 85.  When that didn’t happen, they finally had to start the Nitric.  At 1:30AM, they put her back onto her belly.

She is getting so big!  I can’t believe it.  At one point, I had a little baby.  :)  One good thing about being off the vec is she is able to move her fingers and twitch.  Her feet and hands were so swollen and now they are beautiful again.  Her little eyes are puffy now.

Today’s plan is to try and support her as well as possible while providing optimal nutrition.  They really want her to grow.  They feel that and time are really the best things for her.  They are trying to get her vent settings back down a little.  They are trying to slowly wean the Nitric.

She has a new trick.  Her heart rate will drop, down to the 50s or 60s.  Usually she climbs back up, but last night they had to bag her at one point.  Sometimes it’s associated with suction, but not always.  It’s alarming to me to watch both her ECG and her O2 start dropping and beeping.

The pulmonologists have increased her bostanen.  They did a test called a BNP ( measures how hard the heart is working – simple blood test) and while much higher than a week ago, is still within normal limits.  They have ordered for an ECHO, either today or tomorrow.  They want to get a feel for her pressures.  While the ECHO isn’t the best test for that, it’ll give them an idea.  They want her to have more diuresis and are considering adding another PH medication. 

They would like her to get a PICC line, but she isn’t stable enough to go down for that procedure.  She isn’t stable enough for another Heart Cath either.  She just needs more time.

It has been almost 8 weeks since her open heart surgery – on Tuesday to be precise.  I reminded them that it’s been 6 weeks since her chyllis(sp), so she can get off of the Enfaport and onto Neosure.  He wants to make sure she is getting the protein she needs to grow.

Bella  will be receiving her second transfusion of the week today.

I think that’s it – she’s beautiful!  I’ve never really seen the back of her head so well.  Her hair is getting long!  :)

Belly Time

Once again it is Daddy’s day with his Bella Bug.

This morning when I came in they had changed Bella from a pressure measured ventilator to a volume measured one to see if she tolerates it better.

She is still off of the VEC and is just sedated, so she does stir occasionally and seems to be doing fairly well.  They had her on 85% O2 when I came in and her sats kept around 85 which is the minimum they want her at.  they did go up to 90% O2 because she kept slipping to 83 or 84% on her sats.

When the doctors came through on rounds they asked if we had tried her on her belly.  They asked me if she has ever been on her belly and I told them I did not think she had.

They decided that they would try her belly as it takes some of the pressure off of the lungs and may help to improve her sats.  Once Bella was turned over her sats charged up to 91 to 92%.  We have backed down the O2 level to 85% and her sats are holding at 89 to 90. 

Way to go Bella Bug!

--Jason

Sedated and in a New Room

What an afternoon – Bella is not a fan of the vent.  Period.

It took a while to find the right level of sedation to keep her comfortable.  Lots of people.  Lots of opinions.  One stubborn little girl.

Then in the middle of all of that, ICU gets a new admission from the ER.  A little girl with diabetes and viral symptoms.  She has a fever and has been vomiting – and where do they choose to put this sick little girl?  Right next to my baby.  Mama was not happy.  Mama called the doctor and expressed her concerns (least you worry – outside the hearing of the little girl).  Bell’s immune system is not the strongest on the block.  We do not want any virus.  The littlest thing makes her very ill – and we aren’t in a good starting place.  Fortunately, our doctors agreed.  So as soon as Bell got comfortable, she was moved to a private room.  Ugh.  Moving a patient on a vent with more than 6 pumps is not an easy task, but I feel safer now.

I sit here all day and talk with nurses, RTs, doctors, and PAs.  I question.  I probe.  I seek more information and greater understanding.  And I get a lot of “I don’t know.”  “I can’t tell you the answer to that one.”  “That’s up to Bella'.”  When we were here for her heart, I got a lot of “everything will be better after her repair.”  I miss the positive tone, even if it was wrong. 

Oh well, realism is important.  “And thus it is.”

Bella’s Important Guests

My parents were able to come up to the hospital and visit.  This is the first time my Dad has met Bella.  So that was special.  Thanks for coming up  - I appreciate it!

An Unusual Blessing

(a cross-post, in case you read both our family’s blog and Bella’s blog)

Last night I had to leave the hospital a little early and take Joy to the doctor.  She has had a lot of drainage and had started wheezing.  I wanted to get her into the doctor before we had to deal with anything serious.  (In case you are wondering, she is going to be fine)

While I was at home, though, Kris and the girls were telling me that the lights had been acting weird.  Some outlets were working, some not, and the lights were going dim and then coming back.  Weird.  When Jason got home we started making dinner.  We started to smell this horrible metallic burning smell.  We called an electrician super quick!

We had a little problem.  One of the four main lines in our meter box had burned or something – it’s very confusing to me.  There was one tiny piece holding this large line up – that was why the lights were coming and going.  When the line was just right, some power was able to go through.  He totally disconnected that line, so we could be safe.  So then only half of our house had power.  We had no AC, no dryer, and no oven, but we also had no house fire!

This morning he is out there fixing that faulty wiring.  We are so glad that the house didn’t burn down and no one was hurt.  We are grateful it will all be fixed and safe.

But there is more to this story.  One question the social worker asked me was if we had power.  Well, yeah.  But no, this is a serious question.  Bella will be on a portable ventilator – and it is electric.  Some families get generators.  Fortunately after the hurricane we already have one.  But most families have to just load up and leave if the power goes out.  I am so glad that the wire decided to go ahead and break down now rather than after we were home.  Then I really would have freaked out!  So, a wonderful blessing.  I’m glad that’s fixed!

Friday, I think today is Friday

The days all blur together.  In fact I keep dating everything as March – and it shocks me every time that it’s April.  :)

Our Vec holiday caused quite a stir.  She decided to wake up.  She pulled out her feeding tube, chose to desat and breathe around the vent.  To say the least, she was paralyzed again when I saw her this AM.

He feels, though, that they can’t leave her paralyzed forever.  So her vec has been DC’d (discontinued).   We will see what we will see.  They could always increase her sedative if needed.  We’ll see what games Bella wants to play today.

Her central line is still in – it is incredibly positional.  So it didn’t work for night shift, but has for day shift.

Bella is having some important visitors today – I’ll post about that later.

They are talking to surgery again and scheduling.  She is having more stable days.  Hopefully she’s building up her reserve.

Another Day

Today the attending wanted Bella to have another vec holiday.  Just enough to see how long it would take her to start twitching.  So far we are at 2 hours.  It’s supposed to have a half life of one hour, but it depends on how long you have been on it. 

But consequently, she is taking longer to recover from her breathing treatments and bag and suction. 

Her central line won’t pull back.  What that means is that it’s not totally blocked – they can flush it (put stuff in), but nothing will come back out.  So they have given her some medicine to try and break down the junk that is accumulating at the end of the catheter.  It’s like a door – the door will open, but when they try to pull back, the door closes.  They have to try and get this line working.

Yesterday the social worker and then later the Clinical Care Nurse came and spoke to me about the trach.  I now have my trach book.  I have lots of material to read.  I have found others online that are living with this every day.  My hope is that I can get used to it.  We’ll just have to accept our new reality and move forward.  Bella will really need to be protected from germs.  Pretty much she will live in the living room.  There will be no church and very few, if any, social outtings.  But if it gives her body the support it needs so it can grow and she can heal, then good.  Her quality of life will be better at home than here.  She is receiving excellent care, but everyone deserves to go home and live with those who love you.

And as a memory for myself – this is my chair.  Where I spend all of my day:

Another day of recovery

It’s been a pretty boring day – which is GOOD when you are in the ICU!   She just lays here sedated and paralyzed, breathing with the ventilator.  She continues to be too unstable to even consider scheduling any surgeries.  The doctors say she needs time.  They are going to add diurel to her list of diuretics.

Yesterday they tried a Vec Holiday – a break from the vecuronium (the drug that paralyzes her).  Before they started, I asked for bets about how fast they were going to add it back.  (Mom!  What little faith! said her doctor)  Oh well, before I was even back from grabbing some lunch, they were filling a syringe with vecuronium.  She really isn’t a fan of the vent!  She tries to breathe over it and breathe when SHE wants to.  Have I mentioned she’s a stubborn little thing and wants to do things her own way?  :)

To Trach or Not to Trach, That is the Question

The pulmonologist came and talked to me about the trach.  This is a huge decision.  So we went over the reasons the trach would be beneficial for her.

First off is that she likes to sit with oxygen saturations of 88, 89.  With her pulmonary hypertension they really want that above 95.  95 is almost an impossible dream for our girl. 

Then there is the fact that her CO2 level is chronically high in her blood gases.  When she is doing well we see upper 50s. But usually we hover in the 60s or even the 70s.  This is making her edge toward being acidofic. 

So with her pulmonary hypertension and chronic lung disease, he feels that giving her the trach will allow her to have the support she needs.   The hope is that her lungs will continue to grow.  He said that it’s not true that you grow more alveoli – they do grow larger with you for the first few years of life.  Being a preemie, she’ll have less to begin with.  Having DS, she’ll have fewer.

The trach may not be a forever thing (!).  His guess, at minimum a year.  He did warn me that it could be longer.  But he told me that she could not go home at her current vent settings.  They are too high for a home vent. 

He said that with her pulmonary hypertension being as high as it is, we might be looking at more serious meds in the future.  There aren’t that many available.   She is on two oral ones right now.  Some of the others are administered through a catheter that is placed in the body.  That might be our future.

Once we are stable again, we are going to go back to working on dieresis and finding the perfect balance of diuretics for Bella.  She is on two right now and they are thinking of adding another.

This won’t be a short hospital stay he told me.  That I knew.  Our last 7 weeks was for her heart.  This stay is for her lungs.  I’m hoping we are done with major body organs by then.  :)

Today’s Plan and Weekend Miracles

Today’s plan is to try to wean the NO and increase her feedings.(slowly! on both)

They have decided that this was not a pulmonary hypertensive crisis, but probably some bug.  Amazing that a bug that didn’t even show up on the radar with anyone else that has been around her, almost killed my baby.  Poor sweet girl.

The doctor says she needs 7-10 days to recover from whatever it was before her surgery.  Our fellow is about to pass his boards for anesthesiology (he has been wonderful with Bella’s current state) says that an anesthesiologist wouldn’t do surgery on her till she was weaned from the NO – hence that directive.  So the plan is to try and schedule the fundo, g-tube, and trach next Tuesday or Wednesday if possible.  That gives her time to recover and get some reserve built up.

Today’s picture:

 

My major goal on Sunday (Jason was here and I was at home) was to find someone to watch my other children.  My sister-in-law has been watching the girls.  We are so grateful, but this has been ongoing for a very long time.  Since we aren’t going home any time soon, we needed to find something fairly permanent.  I approached two ladies.  Let’s be honest, I was begging.  I came home so sad.  I knelt and prayed.  There has to be someone Father.  There has to be someone.  I called my Mom and we talked (again) about every different situation we could come up with.  And then Mama had a thought.  There is a girl home from college – doesn’t have to go back till the end of August.  She called her.  Then she called me.  The miracle is that she was praying for a nanny position for the summer. A double blessing – 2 prayers answered.   So long story short – she will be living at our house Sunday night through Friday afternoon.  She will watch over and love on my children.  There will always be someone there.  Now if I need to go in early or late if doesn’t matter.  She can stay with us till the end of August, so when we go home and we are trying to get used to living with our new medical reality of a living room turned into a hospital room, I will have help.  Did I mention that she has experience with DS and already knows my Joy?  We are truly blessed beyond measure.  He is mindful of us!

Sunday Rounds Update

The attending Dr. and the group of doctors came by. 

Bella has responded to to bicarbonate and saline and the right lung has cleared up in the lower and central regions.  but now both right and left upper lobes are clouded.  He said this says there is no pneumonia but it is travelling mucus.  They will try the treatment again and do more frequent suctioning to try to get rid of the mucus.

The Dr. said that we would not do any procedures on her until she improves a lot more.  Her body just cannot handle a big procedure in its current condition.

I think the biggest thing right now is to get her lungs cleared up.  then we can work on preventing them from filling up again.

it is a really delicate balance but they are still narrowing down things.

-- Jason

Doctors have rounded

The pulmonologist came around and was surprised to see her vent settings – they are pretty high. Her chest x-ray looks worse than yesterday. He says she has an pneumonia. Poor little one.

I have now seen the x-ray myself. Her right lung is about 5/6 opaque. They are going to suction her. They are just adding bi-carbonate to the equation to help thin the mucus. She will desat because she’s Bella. We’ll see.

Unfortunately, she desated into the 70s (of course) – at least it wasn’t the 60s like yesterday. It’s been almost 2 hours and she’s still recovering. At least they didn't have to place the chest tube they ordered into the room. But did it work? Not really. They weren’t able to get anything right away and now there is all that extra liquid in her lung that will have to be suctioned out later when she recovers. What a vicious cycle!

She looks so good this morning

that I had to post some pictures.

 

Bella with her favorite lady bug toy!

 

 

 

 

She is a lot less puffy than she was.  The yellow tube is a feeding tube that goes into her small intestines rather than her stomach.  Once they start feeding her again, it should help with the reflux until she can have her surgery.

Overnight

She did alright.  Only one real desat.  Her blood gas came back that she was a little acidic.  They increased her respiratory rate – she just likes to breathe faster than the rest of us.  She is now on continuous albuterol.  They were using another medication, but albuterol is the only one that can be used continuously.  They were avoiding albuterol because it can cause arrhythmias in kids with cardiac issues.  Since arrhythmia is not a problem that she has, she’s been OK.  The monitors watch for arrhythmias – that is why we had that little ECG the other morning, but so far she has been fine.  Another side effect is increased heart rate, so she is now 160s to 170s.  So, a pretty good night.  Yeah!

How Can You Desat on a Vent?

OH Bella!  Today we have chased numbers.  She desats so quickly and recovers so slowly.  Every touch causes a desat and yes, she is still paralyzed.

They changed her tube.  There was an air leak.  This new tube is cuffed to prevent that.   I stayed for that, but really there were times I wish I was sitting nervously in the waiting room.   When the one doctor couldn’t get it in and he had to step out of the way, when her heart rate fell from 170 to 90, and when it took hours with the fellow and the RT working on her for her to recover, then I wished I was just nervous, but I couldn’t leave – not my sweet girl.   She is requiring hourly breathing treatments.   The word oscillator got thrown around again.

We have had a fellow all to ourselves today.  Miss Bella likes the attention, I guess.

They are more and more convinced she is aspirating.  When they pulled her tube, there was a bunch of particle-y stuff down on the bottom.  They have consulted now with a Dr. Jones who would be her surgeon.  She has got to get better than this though.

The attending rounded with tonight’s doctor.  At one point in the conversation he stopped me and asked me what my occupation was.  A mother with training as a teacher.  He says I seem very knowledgeable, but really, I go back to the fact that I am Arabella’s mother.  How could I not learn about what’s going on with our sweet girl?

This Morning

Bella finally stabilized.  She did not need the oscillator after all.  Thank goodness.  She did spike a fever last night of 103.2.  She is currently 99.5.  RSV and flu cultures came back negative.  She did grow some gram strains (or is it gram stains)  from her ET tube.  (I, for one, am not surprised.  She has always grown something in her tube every time she has been intubated.)  She fought the vent until she was paralyzed, so they will give her another 24 hours of being paralyzed.  Her lungs do sound better this AM.  They are going to work on weaning her NO as she doesn’t seem to need it.  She also lost her aterial line.  It lasted all of about 2 hours.

The junk they are pulling out of her lungs looks like it could be food particles.  They are going to go ahead and do the fundoplication.  This will tighten the muscle at the top of her stomach so hopefully she won’t reflux and aspirate.  It they start the process now, it should happen next week some time when she is better.

Right now her job is to ride this wave and get over this crisis. What a strong little girl you are Bella!

And thank you everyone for your kind comments.  Y’all have brought me to tears many times with your kind words and encouragement.  I really appreciate it!

Another Update

Bella isn’t having a great night.

Without boring you with venous and arterial blood gas numbers, I will tell you that her numbers are all off.  She is doing worse instead of better.  They have fiddled with her ventilator settings.  She was paralyzed at 9:30 PM.  This has improved her O2 sats to 93 to 94 (a ten point increase from before being paralyzed).

She is receiving IV Lasix in good healthy does.  They did get the arterial line.

If she continues to do badly (RN friends – our last blood gas was CO2 of 59 and O2 of 45 arterial blood gas), the next step is the oscillator.

Bella, Bella, Bella.

To understand more about breathing support, here is a list from the internet (http://www.sjmercyhealth.org/body.cfm?id=527):

Nasal CPAP (Continuous Positive Airway Pressure)
Nasal CPAP is often the initial type of breathing support that we use. It involves the use of nasal prongs or a mask that fits over the nose and gives the baby help by providing extra pressure when he/she takes a breath. Nasal CPAP is used for infants with mild or moderate breathing problems and those with pauses in their breathing (apnea).

Conventional ventilators
Conventional ventilators are used when infants fail to improve with nasal CPAP or when they are in significant respiratory distress. This type of respiratory support requires that an infant have a tube (endotracheal tube) placed in their windpipe. The tube is then connected to the ventilator. Conventional ventilators provide pressure directly to the lungs and can either assist a baby with their own breaths or provide breaths to babies that are not breathing on their own.

High Frequency Oscillator
When a conventional ventilator fails to provide an adequate amount of breathing support or when we become concerned that the conventional ventilator may be causing additional harm to the lungs we may change to a special type of ventilator called a high frequency oscillator. This type of ventilator also requires that a tube be placed in the infant’s windpipe. The oscillator ventilator provides constant pressure to the baby’s lungs that keeps them inflated with air. It then vibrates very rapidly which can often be seen by watching the infant’s chest wiggle.

Update

After working for an hour and a half, they were not successful at placing an aterial line.  They did get the central venous line though.

The attending came around and I jumped.  We talked about Bella.  We talked about long term.  This is not a life.  Taking six hours to recover from a bath is too long.  Desating to have a bowel movement is not good.  I talked a lot.  He listened.  Bless him.  Then we talked.  We talked long term.  He has no crystal ball, but we looked at her “life” and what we can expect.  We talked about the impact of Bella living in the hospital on our family.  We talked trachs and g-tubes. 

A team will be called together to discuss Bella and what would be the best for her.  Living from crisis to crisis is not how I want to live.  Finding ways, even drastic ways, so that Bella can go home and LIVE A LIFE is what I am seeking.  I want Bella to live as full of a life as possible.  I don’t see that happening living at Texas Children’s Hospital.  The doctor was astonished at two things.  One that I knew so much about these procedures.  I have many Moms with kids with DS that are sharing their knowledge and experience with me.  (THANK YOU!)  And two that I was being so proactive.   I think a long hospital stay and love does that.  We love you Bella.  Hang in there sweet girl.

Prayers Would Be Appreciated!

Bella had a good night.  9:45 AM she started to desat.  She often desats, but she is usually able to pull it back up.  Not this time.

She is now back in ICU.  She is intubated and on NO.  They are starting an arterial line and a central venous line.

My poor baby.  Upstairs in the progressive care unit, they felt she was having a pulmonary hypertensive crisis (same as when we were admitted).  The ICU doc isn’t convinced that’s it.  She didn’t respond to the NO the way they expected.  To add an element to the equation, yesterday afternoon they decided to stop her continuous drip feedings and start feeding her bolus feedings again.  The doctor is suspect of her feedings.  He thinks (as did the pulmonologists) that she might be aspirating her feeds.  Her x-ray was hazy.  There is also the chance that she has gotten sick with some bug.  We’ll see.

As far as her liver and bones, I discussed those with the attending this morning during rounds.  They were ordering a liver panel to look into that.  The bone looked like there had been some infection, but her swelling has gone down.  They want to do a follow up x-ray in a few days.  We’ll see.  It’s so low on the priority list right now.

I have to add – Lizzy was up here with me today.  Things were nuts – there were at least 20 people in our room at one point.  The child life specialist came in and talked with Lizzy.  She got her a teddy bear and they gave him an IV.  She was a God send during this crazy time.  What a blessing she was to us!

Answers and More Questions

We got here to the hospital at 7:45 Am, just as they were wheeling Bella to her swallow study.  The Speech Pathologist showed me the video and we discussed her findings.  She does not seem to be aspirating.  Her suck is still very immature, so the OT is now coming to work with us on that.

The lung doctors just talked to me.  Her CT scan showed several abnormal findings.  She has a lot of findings consistent with DS.  She has some small cysts along the outside of her lungs.  She has fluid in her lungs.  She has some areas that are overfilled with air.  All kinds of things.  They also found a strange finding on her liver.  We’ll have to see about that.

Her arm was hugely swollen when I came in this morning.  They did an x-ray and found  a strange result in her bones.  Don’t know about that one yet.

They feel that her BPD and pulmonary hypertension can be treated clinically if we can find the right balance of fluids for Bella.  They feel that her present crisises are the result of fluid overload.  She needs to get on less oxygen (she’s on 4 liters right now) and stop having desats and then we can go home.  They are still concerned that while laying down and particularly at night, she might be aspirating (her swallow study was sitting up).  They are considering a g-tube and another procedure that tightens the sphincter muscle at the top of the stomach.  We’ll see.

Compared to yesterday…..

What a day… and it’s only 3!  I’ll start at the beginning.

I had told Sammi that she could come to the hospital with me.  I have been sleeping at home because I can.  While Bella is in the PCU, the ratios are high enough that parents can leave if they need to.  Our family has been doing this for so long, that the stress cracks are showing up.  I may not get home till really late or I may have to leave at 5 AM, but there is something magical about Mama sleeping in her own bed, so I am trying to do that whenever I can.  In this unit, there are many kids on ventilators and other respirator devices, so cell phones are restricted.  Sunday I brought Becca up with me.  Yesterday was supposed to be this huge test day (didn’t happen), so I didn’t bring anyone.  Today we had been told might be a repeat of Monday because they were just going to try and fit us in.  Consequently, I had told Sammi she could come with me to the hospital.

When it was time to leave, Lizzy lost it.  She was so upset that she couldn’t go.  She was crying.  Joy was crying.  I was very close to crying.  Sammi relented and said Lizzy could come with us.  So I brought two kids with me to the hospital today.

After our hour and a half drive down here, we walked in to find a CPAP machine in her room – ugh.  The one night I don’t call to check on her in the middle of the night, she desats.  Her lungs filled up and they had to give her IV lasix.  She responded very quickly, and was doing fine when we got here.  The CPAP machine is here just in case.

A Spiritual Care person came by the room.  She was very kind.  She gave the girls cards so they could write or draw prayers on them.  They have a Tree of Hope down in the Chapel for the children’s prayers.  That was nice.  I have seen several pastors/priests here in the hospital.  I have seen them here late at night or during the day.  What a blessing to those in their care.

They decided to do another EKG because they thought they saw something over night.  That turned out to be just fine.  Then they walked in and said that we get to have our CT scan today after all.  Happy day!  Her CT scan went well.  The anesthesiologist said that she did well until almost at the end – then she needed some extra support to breathe, BUT she never had to be intubated.  Yeah!

We got back and got her settled.  Then she had PT.  Her sats actually improve when she is in a sitting position. 

I have talked to many lung doctors today.  We are increasing her calories per ounce.  This time to 27 calories.  With this change she will have less fluid going in.  Our hope is to find the perfect blend of intake volume and diuretics.  They are going to increase her lasix and are considering putting her back on diurel – so maybe up to 3 diuretics.

It’ll be interesting to get the results of the CT scan.  From my reading, this is all a delicate balancing act until she can grow some new lung tissue.  This is not a quick fix.  But the goal is to find the right balance of medicine and support so we can avoid these crisis episodes.

And what have Lizzy and Sammi done all day?  They have done their school work.  They have had microwave meals for lunch.  A child life specialist stopped by and brought them paints, games, and movies.  She made sure they understood all about Bella’s equipment.  She said that they encourage the siblings to come up.  It has been nice for them to see everything.  Once we are moved back to a floor, I will have to stay here and won’t be able to bring anyone up, but it was nice to have them here today.

Scary and irritating….

Bella has quite the little personality and she gets mad easily.  She hasn’t eaten anything since 3AM in preparation for this CT scan that is supposed to happen sometime today.

About 4:30 PM, she had had enough with waiting.  She was hungry and she was mad!  Long story short, her respiration rate shot up above 100, her sats were dropping, and she would not calm down.  Then I started to hear a new sound in her breathing.  I got the nurse, who got respiratory, who hear squeaking, who got the resident, who wrote for a breathing treatment.  What a wonderful thing albuterol is!  She calmed down, her color went back to normal, her respiration rate dropped, and her sats improved.  I knew she was better when she started talking to me and the RT and telling us all about her experience.  :)

Then at 6PM, the CT scan people called to say that the test wasn’t happening today after all.  Ugh!  After all of that and nothing.  Irritating.

Tomorrow we have to try again.  If she doesn’t have the test tomorrow, they will do it on Thursday.  Thursday is the day they do CT scans with anesthesiology.  Oh well.  We’ll do the best we can.  At least now she has an order written for PRN albuterol treatments.  Good to have.

BPD and CT

Lots of letters!  We ARE going to have the CT scan today – wahoo!  They just can’t tell me what time.   It’s 3PM, we still have a little time left before people start going home.  Yeah – I am thrilled.

The PA mentioned BPD to me.  Read about it here.  Doesn’t it sound exactly like Bella?  All the way down to the When to call the doctor (even the vomiting!).  I think we are on the right road!  Really it’s just me learning the right words to research – other names for BPD are chronic lung disease, which we already knew.  But it sounds like albuterol should be added to her list of meds.  I have been asked if she was on that several times.  And time.  Lots of time for her sick lungs.

Monday Morning

Bella slept most of the morning.  She was doing well on 2 liters of oxygen.  She woke up and we had to turned it back to 3 liters.  I am really looking forward to the CT scan.  We have to be fit in, so we are still waiting.

Despite her O2 stats of 89, Bella is comfortable.  Here she is talking to me:  She gets distracted by the camera and then by a noise off to the side.

We got a picture of Bella’s Easter outfit, but not her cute dress.  She has bunnies on her feet and a cotton tail on her bum.

She was originally scheduled for her ECI eval today, but we missed that one being in the hospital.  Last night a PT came and evaluated her.  She ordered for PT three times a week as long as we are here.  That started today.  This is Bella receiving her first ever PT!  She does alright sitting up with support.  She loves laying on her side – she’s been doing that since the NICU.  She is good about bringing her hands to the midline when she is on her side, but otherwise, not so much.  She has bad head lag, but her sternal restrictions are lifted tomorrow since tomorrow is 6 weeks post-op.  (Can you believe it?)

Easter Sunday

I would say Bella is a little worse off.  She has slept all morning.  Her sats are low 90s, high 80s.  She woke up once to have a bowel movement and cried and cried.  She was suctioned and went back to sleep.  Sigh.  The nurse turned her O2 up to 3 liters.  At least she is in a place that if she tanks, she can get the help she needs. 

The meeting for tomorrow may be delayed until after the test results have come back.  It is a holiday weekend, so there is no CV anesthesiologist in house today.  That means we have to be scheduled for the CT scan during the week and coordinate that with the anesthesiologist.  They want to wait to do the swallow study until she is feeling well so that they can get a good picture of what she is doing.

Becca came up to the hospital with me today.  We brought Bella an Easter outfit and an Easter dress along with some candy.  We had hoped to dress her up for a picture, but we’ll wait till she feels better.

We have moved

We are now in the PCU, rather than the PICU.  She has her own room, and she’s still on the same monitors, but the nursing ratio is 1:3 rather than 1:2 and vitals are taken less often.

When they did rounds today I asked why we were still here.   I needed to understand the plan, which I have learned they won’t share with you unless you ask directly.  She continues on 2 liters of O2 and continuous NG feeds (which have been great!  She only spit up once since we were admitted on Thursday!).  All of her meds are PO (by mouth).  I can do all of this at home.  But – they started bosentan (Tracleer) on Thursday and they need to watch that.  AND – this one I really like – Dr. Mallory (our PH doctor) has asked for a multidisciplinary meeting on Monday to talk about Bella.  It is hard to have those meeting when the patient is outpatient.  I’m hopeful they will come up with a good plan at that time of how we will attack this.

They want to do the CT scan of her chest and a swallow study.  The swallow study will help us understand her lack of eating and possible aspirations.  It might also lead to a g-tube.  We’ll see.  The CT scan will help us figure out how sick her lungs are.  Terms being thrown around: pulmonary hypoplasia and lung growth arrest.

It’s very interesting to me to learn more and more about Bella’s lungs.  Last year we were trying to adopt a little boy from Ukraine.  He was two years old and had a lung problem.  All of his paperwork was completed and in my hands one day late to submit to the Ukrainian government for the calendar year 2008.  The day I realized we were too late, I got the call about Bella.   As things have unfolded I have been amazed at how we have been prepared for Bella and her medical condition.  He does know what He is doing in all this.

An Easter Egg for our Bella.

Jason and the girls dyed Easter eggs yesterday. Jason made this one for Miss Bella. He also made this cute header and new layout for her blog - very cute.

Pieces to the puzzle

The doctors  are reviewing Arabella’s history and they are  wondering why.  Why was she hydrops?  Why did she have chroy-throxac (sp.) in the NICU?  What was going on with her lungs?  Then there are the awful chest x-rays.  The yucky spots seem to move around more like pulmonary edema rather than scar tissue.  Things they are pondering.

She looks beautiful!

This morning Bella looks great!  She is smiling and active.  She is trying very hard to tell me something with her intense eyes.  :)

I am so impressed with the ICU doctor.  She has an incredible memory!  And she calls me Mrs. Turpin.  The last time we were here (7 weeks long), I was called Mrs. Turpin only once.  I have learned to respond to Mrs. Hirsch very quickly.  :)

The doctor is encouraged that Bella is growing.  With how bad her lung disease is combined with the pulmonary hypertension, the fact that she is growing is a very good sign.  Bella is a puzzle and I am grateful that they are trying to figure her out.

The pulmonologist is optimistic that long term she is going to be OK.  He wants to do a CT scan of her lungs before she is discharged.  (Did you notice the discharge word???  We aren’t being left here indefinitely again.)  They are going to start weaning the NO.  He talked to me about DS and pulmonary hypertension.  20% of his patients have DS.  I had read that kids with DS have a higher rate of PH.  He talked to me about her alveoli – as did the pulmonary fellow last night.  The alveoli in the lungs is where the O2 and the CO2 are exchanged.  In most of us, they are like a bunch of grapes, but with her, it might be more like oranges.  What does that mean?  Less surface area for the gas exchange.  He has also observed with kids with DS that they have a higher chance of being born with underdeveloped lungs.  Combine that with her prematurity and hydrops and the lungs are just not as ready to handle their job.  There is also a chance that small blood clots might be hindering her lungs.  The CT scan will really help us see the structure of her lungs and what we are dealing with.

Pulmonary is managing

Cardiology, and every other department, has completed their rounds.  When he heard her name, Dr. Mott said (in a loud voice that carried all the way in here), “but she went home.”  Yes, we did.  Oh well.  I think a lot of people assumed that once her heart was repaired all would be well.  Not so.   Anyway, the fellow told her little team that pulmonary is managing her case and they are support if needed.  Yeah, music to my ears.   Her heart should not be complicating this visit. 

The pulmonologist feels, as one of our cardiology fellows did, that her little choking spells are her aspirating.  I told him about the reflux test that we did on March 2nd.  He still feels like that is part of the problem so we are back on Zantac.  And happy news – they have decided to allow her to eat again!  This makes one little 5 kilo baby girl a happy camper!  They are doing continuous drip versus bolus feeds to help alleviate any aspiration that might be occurring.

I have had wonderful doctors so far.  They have all listened to me!  Yeah!  At the beginning of next week, after we have recovered from this latest wet lung episode, we are going to a CT scan of Bella’s lungs.  The doctor wants to make sure that they get a very good picture of her lungs.  Sounds good to me.  Find the problem and fix it!  Then my baby can go home and live her life!

It was nice while it lasted…

We are back in the PICU.  Her respiratory rate and need for oxygen increased overnight.  So I called her doctor knowing what she would say.  We went to the ER who immediately had us in triage and then in a room.  We were admitted to the PICU.

I will share some more about our triage.  I did the triage.  The nurse typed.  I told her the diagnoses, her meds, the dosages and frequencies, and then what I wanted.  They moved us to the ER and I repeated all of that for what I thought was another nurse, nope, it was the doctor.  But he concurred with everything I said.  I guess it’s pretty standard protocol at this point.  I wonder what normal is sometimes.  When her respiration rate is in the 70s and her O2 is dipping into the upper 80s, and her heart rate is over 140, I’m OK.  She’s OK.  Then I see the faces of the nurses as they see her stats for the first time.  Hmm…. I wonder what normal looks like because this is normal for us. 

We are on increased oxygen and nitric oxide.  They have doubled her sildenafil.  I have talked with pulmonologists!  I am so excited to see them.  It’s like we are solving the second half of the puzzle now.  Her heart has been repaired and now we work on the lungs. 

I am hopeful that we can figure out a good treatment plan.  Hopefully one that keeps us out of the hospital for good!

Our current diagnosis besides trisomy 21, repaired AV canal, and pulmonary hypertension is hypertensive crisis.  She had fluid around her lungs again (Tuesday they were better – amazing what 2 days can do!).  So IV lasix and sadly, no feedings.  She is mad as a hornet that she can’t eat – granted she rarely eats orally these days, but her tummy is empty and she is letting us all know it!  It took them 2 hours to get a good IV and get the necessary blood for the labs – poor baby girl!

Hard Day

Oh Bella!  The littlest things are so hard for you.  A simple sponge bath took 6 hours to recover from today.  The O2 had to be turned up and she was so fussy.  She vomited three or four times.  It’s days like this that I look around and think that I need to make contingency plans for the kids for if and when we have to go back to the hospital.  My mind doesn’t want to go there. 

I watched Divine Design today – what else can you do when you are holding a baby that is attached by a 3 foot long tube to her huge Oxygen tank?  The episode was filling the “Make A Wish” wish for a little girl who has been in and out of the hospital her whole life.  That one got to me. 

Most of the information that I read online about pulmonary hypertension is about primary PH, not secondary or associated pulmonary hypertension (the kind we have).  So I’m having a difficult time learning more than basic information.  I told my sister-in-law that I wondered if Bella would ever get off of oxygen and she reminded me that I had wondered if Bella would ever get out of the hospital.  True. 

Time.  We just need some time.

All Day Cardiology Appointment

We left the house at 9:15 AM and walked in the door at 5:45 PM – at least we are outpatient!!!  Thanks Mama for watching the kids all day – and thanks Lizzy for helping me with the O2 tank.

Today we had an echo, chest x-ray, chem 10, checked our hemoglobin, and thyroid function – and waited and waited and waited.  The verdict?  The diuretics have worked – they have pulled the fluid away from her lungs – yeah!  Thank goodness for diuretics.  Her right upper lobe also looks better.  Her hemoglobin and electrolytes are normal.  Her pulmonary pressures, though, not so good.  Sigh.  Her sildenafil has been increased.  Her diuretics are going to remain the same.  Her methadone is going to stay the same.   The thought with the methadone is as she continues to grow, she’ll naturally wean herself.  She is tolerating her feeds.  I questioned that.  She is vomiting at least every other feed.  But the doctor said, she is gaining weight, so that is a really good sign.  She is calling in pulmonology.  She is going to conference with them and see if there is anything we should be doing in addition to the oxygen and the sildenafil.  And we will start seeing a pulmonologist in addition of our cardiologist.  There is still the risk if her pressures don’t go down or get worse of Bella going into right heart failure.  But right now she is OK, so we keep moving forward and trying to treat her lungs.  Time and the correct treatment is what she needs.

She did tell me that if I had been any other mother last Thursday, Bella would have been admitted to the hospital with Respiratory Distress.  I was grateful that I had earned her trust that I knew how to take care of my baby.

She did ask me if Bella takes any of her food by mouth.  Yes, some.  She was very excited!  She was thrilled that she had the energy to eat any at all.  Hmmm….sounds like I need to do more research on pulmonary hypertension.

That’s today’s report.  Bella has improved enough that we don’t have to go back downtown for 2 weeks – wahoo!

Happy Birthday

Arabella is 5 months old today!  She has been through so much in her short little life.  May the next 5 months bring healing for your lungs my sweet baby and unconditional love always.  We love you!

Yesterday Sammi made Bella a mobile made from paper!

Her video of the event:

I had to order new NG tubes this morning.  Did you know that little bit of plastic costs $15?  Our insurance company thinks she only needs 4 a month – granted these are the kind that are supposed to be good for 30 days, but they forgot to calculate in little hands that don’t want tubes stuffed up her nose.    Oh well.  Thank goodness for our HSA account. 

Hi Sister!

Update

Very carefully, we keep evaluating Bella.  We almost went into the hospital on Friday, but she is doing slightly better.  She is having more alert times, rather than sleeping all the time.    Her sats are great!  I haven’t had to turn up her O2 at all. She is still retracting, but it’s less than before.  She is still vomiting though.  We need this stomach bug to leave our house.  We are down to our last three to have it, so hopefully soon.

On a happy note, she smiled at me!  A good sign that she is feeling better.  And she is starting to take more by mouth.  She has taken about half of her feedings by mouth from me for the last three daytime feedings.  Yeah – an improvement!  Hopefully that will continue.

Sleepwalking a Dangerous Line

Sweet Bella.  We are walking a careful line between inpatient and outpatient care at this point.  Her oxygen needs have increased (from 1/8 - 1/4  to 1/4 - 1/2) and her respiration rate has increased.  Her x-ray yesterday showed fluid build up around the right lung and her upper right lobe collapsing again.

Her doctor has increased her diuretics.  Hopefully this is pull some of the liquid out of her.  We go back next week.  If she worsens at all, we go in for IV lasix.

Please pray that the diuretics will work.  This is a constant battle for Arabella.

 

Jessi helped me get to the doctor.  There is too much equipment for just one Mama!

 

 

I have to add a special thank you to Rachel for watching the kids for me.  This 30-40 minute visit was really two hours long, coupled with the 2 1/2 hours of drive trip, Rachel’s “short” babysitting event just kept getting longer and longer.

The doctor had given me Bella’s new script for her Methadone.  We were running so late that I thought I would fill it on our side of town.  Mistake!!!  I got home and Rachel (the wonderful RN that she is) helped me with getting Bella’s bed to just the right angle and getting the nasal cannula more secure on her face.  Then we talked about the methadone.  I only had one dose left.  Rachel watched the girls and I ran to Walgreens.  Walgreens doesn’t carry Methadone at 1 mg/cc concentration.  They could compound it and that would take 3 days.  We called all over.  No Methadone for babies in North Houston.  So, Rachel stayed with the kids and we drove back down to Texas Children’s Hospital to get drugs for our baby.  What a late night!  Rachel is truly a Saint!  Thank you!