Ugh!

I feel like we are living in two different worlds – besides home and hospital life – Bella just isn’t doing that great.  Her vent settings keep getting turned up.  She hasn’t been on these settings since before her surgeries.  The PCU docs keep telling me if she doesn’t turn around, she’ll have to go back down stairs.  We have done another STAT chest x-ray.  We’ll see what it says.

On the other hand, we are in the PCU – trach teaching land.  I am learning all about trach care and suctioning.   I am being quizzed about my plans at home.  I answer the questions with what I’ve figured out, but part of me is screaming – she’s breathing at 90 breathes per minute, why do we care?  Anyway, we finished her room last night.  I’ll have to post some pictures when I get home.  It is cute and functional – perfect for Bella.  I just really hope we can use it…..sooner than later.

Becca and Bella

Sweet Girl

Poor girl.  As her Attending said this morning, this isn’t going to be a normal round.  There will be many ups and downs with Bella.  Amen.  They always come back to Down syndrome and twitchy vascular bed/ air way. 

Yesterday she started desating, her respiration rate went way up, and she was tachy (heart rate up).  We tried everything morphine, holding, re-positioning, increased oxygen.  She finally got through it and went to sleep exhausted.  She did that twice yesterday.  She has done it again today.  The poor baby.  I hate to see her crying – silent tears break my heart.

She is pretty miserable.  She looks like she doesn’t feel good.  She is warm, but not all the way to a fever.  Poor thing.

As far as her belly and the Nitric, pedi surg is glad that things are looking better -  so is infectious disease – so they are going to let her try half strength formula at 10 cc’s an hour.  They are cautious.  The critical care doctors are trying to increase the protein in her TPN.  You can’t gain weight on a lot of precaution, and she really needs the nutrition.  Since she has increased oxygen needs, there will be no Nitric weans today.  We are just going to sit.

And since she is out of the ICU, OT and PT have been ordered.  They stopped by to assess her.  They will be working with her daily (M-F).  She definitely needs it.  We had to stop and suction in the middle of everything, but that’s OK.  That’s life with a trach.  She seems to be developing an oral aversion which does not surprise me considering all of the tubes and plastic that have been shoved into her mouth, nose, and airway the last 7 weeks. 

I love this picture!  Doesn’t she look like she’s ready to pray?  :)  This is her one trick – she can bring her hands to the midline – wahoo!

Thursday

  Our sweet Child Life Specialist made a point of allowing me to hold Bella today.  I have to admit that I love that, but I’m not sure how much she enjoyed it today.  I think she is still hurting – her tummy is still pretty yucky.

She tolerated her pedialyte at a rate of 5cc’s an hour over night and then today.  But Pedi surg. is not comfortable with her eating yet.  So she has been increased to 10 cc’s an hour and they will continue to check residuals (if there is anything left in her tummy).  The good news is that she can start using her tummy for meds, so sildenadil and bostenan can come back aboard.  Yeah – we’ll be able to start weaning the Nitric hopefully tomorrow.

Look at the ceiling in this picture!  Isn’t that fun?  She has a projector that projects some brightly colored images on the ceiling.  It is perfect for Bella who stares at the ceiling all day.

 

 

 

 

Suctioning her trach isn’t that hard.  I’m just amazed at how often she needs it done.

Wonder of Wonders!

This morning has been a flurry of good activity!

Pedi surgery has come and gone.  They removed the drain tube – ouch!  It always amazes me how long those things are.  It is now leaking pus too.  So she has the two open sites there that are just gross.  The drain to keep her tummy decompressed was removed (the one in her nose).  I can see her beautiful face again.

The ultrasound showed no improvement with our collection of fluid, her abscess. There is scar tissue throughout it, so it would be hard to drain (think of a honeycomb).  So they are going to give it two weeks of good antibiotics and see what happens.  They’ll repeat an ultrasound at that time.

They are starting her on Pedialyte at a rate of 5 cc’s an hour.  We’ll see how her tummy handles it, and go from there.  They say the inside of the tummy heals quickly.  I wonder how much of the stomach they had to remove.  I wonder how that will effect her long term.  Will she just eat frequent smaller meals?  We’ll see.

AND…….We have orders to be transferred to the PCU!!!!  Wahoo!Now I can continue learning how to take care of my baby.  I know that the protocol is 2 weeks in PCU and then home.  I also know that we won’t follow that because of this tummy issue – but – we are moving in the right direction!  WAHOO!!

Pulmonology wants to start very slowly, without stressing her at all, weaning a little on her vent support.  When her tummy is resolved, they want to go in and take a peek.  She acts like and is being treated like she has bronchial malasia.  They want to see if she actually does.  The pulmonologist and I talked for a long time about the plan now.  It looks like we are here for another 4 to 6 weeks to really get to know Bella’s lungs and what she’ll need.  Yeah!  A plan.  We have a plan!

So, good steps in the right direction!

On a different note, I have to say thank you to all of those who support us and share your blogs and kid’s stories with us.  We were prepared for the trach/gtube/fundo.  I am watching/listening to a little family across the PICU hall that is being presented with the trach option.  I am so glad we weren’t alone and unprepared.  So, thank you for sharing your lives with us.  It has been such a blessing.

Tuesday

It’s the beginning of the work week after the holiday, so we have a new Attending.  One that I don’t know, therefore one that doesn’t know Bella.  Oh well.

The infection doctors have added a new antibiotic.  As they continue to grow new bugs from her belly, they are trying to target exactly what she should be on.

Bella will have an ultrasound today.  They need to know if the fluid is going away.  That will answer the question they keep coming back to – to drain (again) or not to drain.  Hopefully we’ll get the answers we need from the ultrasound.

Today during rounds I basically asked “how much longer?”  I know no one can tell me, but if we are just sitting here draining and on antibiotics, but otherwise stable, can’t we do that in the PCU where I can start my trach care training? (what a lovely run-on sentence)

The answer is two-fold:

1. They want to get to the bottom of this stomach thing.  That is reasonable.  Hopefully the ultrasound will give us some guidance there.

2. She’s on Nitric.  But she is only on Nitric because of her tummy.  She can’t take her pulmonary hypertension meds because they are oral (they can’t be IV), hence the Nitric.

I am ready to go.  I think as soon as the new Attending feels comfortable with her tummy (I hope the u/s shows decreased fluid), we will be able to go upstairs!  Then on to our next adventure!

Monday

I will spare everyone a picture of her draining wound.  Let’s just say it’s gross and leave it there.

She is alert when she is awake.  Her eyes seem to be slowing down to me  - yeah!  Her hemoglobin was down to 7.4, so she is getting more blood.

Infection doctors and pedi. surgery are following her tummy wound.  They have her on three really strong antibiotics.  She will have a follow-up ultrasound and x-ray tomorrow.

The hope is for a nice, boring day full of draining and healing.

The Promised Grandparent Photos

Jason’s parents are down from Iowa.  They were able to go in and visit with our sweet girl. 

 

 

 

Bella has now meet both sets of Grandparents – yeah!

Sunday Update

The surgeon came by and looked at the incision area.  they took some Q-tips and probed the areas that were left open for drainage and did find some “wash” still there but no puss or abscess.  The Surgeon did say that it is too quick for a full abscess to form like the doctors thought was developing and that in the last surgery they did use a lot of “wash” to clean the area out.  they feel that the fluid in the area is just excess “wash” and that the area did not look that bad.  They are going to keep an eye on it but will let the area continue to drain and let the myriad of antibiotics take their course. 

So at this time there is not anymore emergency surgeries.

Just hoping that Bella and her fragile little body will cooperate with us this time.

Hang in there Bella Bug.

Sunday Bugs

Little Bella looks good today.  She is happy and playful but her incision looks a bit redder.  She has a gram negative bacteria growing in addition to all the others but this one is more resistant.  So Bella will be getting three different antibiotics.

We are waiting for the surgeon to come and look at the incision to determine whether to surgically drain the area of the abscess or if they will go to radiology and guide a needle in to drain it.  We don’t know when or how this will happen until the surgeon comes and looks at it.

They feel that the abscess has so many more bugs than normal due to the abscess being at the top of stomach near the esophagus where many more bugs can collect.  if it were the bottom of stomach it would be easier to treat with medicine due to less bugs that would survive to that point.

I have always called her my Bella Bug but did not think she would take it so seriously.

OK Bella,  lets get rid of the bacteria bugs!

Saturday

This morning Jason came up to the hospital and brought two very special visitors – his parents!  They got to meet Miss Bella for the first time.  :)  I’ll have to post the pictures later.

I ran around all morning doing my Saturday-pretend-I’m-the-Mom routine and then got to come up here and be with my girl.

Today Bella had a follow-up ultrasound.  It showed that she has some fluid building up in her abdomen - more abscess.  It is currently 3cm X 4cm.  So they are going to watch that and see if the antibiotics can fix it.  If not, they will have to drain it.  She has spiked a new fever this afternoon, despite her 3 antibiotics.  Her lasix is being decreased (not happy about that) and she will be getting another potassium bolus.  But other than that, she is awake, alert, and of course, beautiful!

A glimmer…..and an oddity

Just a quick note

It’s Friday, so the Attendings are rounding with each other as they pass the torch for the weekend.  Dr. Stein told me later that one of the Attendings remembers having a patient with DS that had the same eyes!  It was related to Methadone.  So the question, are we on too much or not enough?  Regardless…there’s hope!  Yeah!  Hopefully, as we wean from our narcotics, our baby will come back to us.

Dr. Stein, who could have been MY pediatrician – he has been practicing medicine a long time - says that he has NEVER seen a child go in for a fundoplication and develop the complications that Bella did.  They treat her so delicately here because she is so very delicate.  This is not the first time I’ve been told she’s a medical anomaly.  The surgeon that did Bella’s fundo came by to apologize.  That was very kind.  He didn’t need to do that.  He said that he doesn’t know what happened.  It was very routine.  They didn’t stretch anything.  Oh well, it just happened.  She is doing well now.  I am grateful.

Friday

 

Our very sweet friend, Lacey (Jaxson’s Mom), sent us this beautiful blanket!

It is so pretty!  Something new for Bella to hold onto.  :)

 

And it’s butterflies!  So thoughtful, truly, to remember that about our girl.  Can you see the edging?  It is so lovely – thank you.   I absolutely love it.   Look how big it is – and it’s folded in half.  Thank you Lacey.  We appreciate it truly!

Our CT scan came back with expected results – she has a very small head for her age.  Let’s be honest, while she’s 25% on the DS chart, she’s no where near the curve on the “regular” chart.  She has fluid in her skull and a small brain, findings consistent with DS.  But no masses and no bony abnormalities.  The next step is to talk with neuro ophthalmology – did you even know there was such a sub-specialty?  I am now clinging to the hope that it’s a medication thing and it will go away.

She continues to heal from her surgery.   The site of the incision doesn’t look very good.  It’s still pretty red and looks pretty angry.  Normally, she heals so quickly, but not right now.  She’s on three pretty strong antibiotics, so good nutrition and time is all they can do at this point. 

Not a very good day

Least you worry, Bella is doing fine.  I try to keep this blog about her, but today my feelings are coming through quite loudly.  She is the same as yesterday.  Same sats, same vent settings, same Nitric level, same everything, except a few more bradies.  She is just ticked about the large OG tube going down her mouth into her stomach.  She really hates that.  She is doing her darnest to figure out how to either chew it off with her toothless gums  or work that tape off with her little hands.  :)  Soon, my little fighter, soon.

 

She likes to rest her hands either on her OG tube or her trach.  I have learned to reattach that thing very quickly!

 

On the left side, she likes to rest her hand on her blue tube.  I can re-attach that one quickly too!  :)  It must be soothing to hold onto something.  I guess she gets tired of holding onto Mama.

Least you worry, her little hands are restrained unless I’m right here.

No, the one having the hard day is me.  On the day of her emergency surgery, I happily signed all the forms.  Yes, you have permission to remove my baby’s small intestines or her large intestines, or do a bowel re-construction, whatever, just fix her.  And they did.  They cut off part of her stomach and removed all the infection – and viola!  She was better.

But now this thing with her eyes has really gotten to me.  One thing I really love about Bella is her eyes.  She stares into my very soul.  She is so intense.  When I look into Bella’s eyes, I see intelligence and strength.  I see depth and insight that I can only glimpse the outside edges of.  When I thought her eyes were just withdrawing from her narcotics, it didn’t bother me.  She’ll be back.  Now what?  I feel stupid today.  I don’t speak eye anatomy or brain anatomy.  I don’t understand everything.  I feel dumb.  I am sad.  I want them to fix it.  Give me back her eyes.  Let me see into my baby’s soul again.  What if they can’t?  Then they can’t and we’ll move forward.  “And thus it is.  Amen.”

On the medical side of things:

We were supposed to have an MRI.  You can’t have an MRI on Nitric.  Nitric and large, powerful magnets don’t mix.  So we’ll have a CT scan in the interim.  We are also supposed to get a PICC line, since she will need IV therapy for longer than 7 days.  Oh!  And so much fun, she remembered all about bradys.  She has been showing off in that department today.  How fun! 

Someone weighed Bella sometime.  Her weight is now 5.4 kg or 11.9 lb.  So in the last month and a half she has gained 0.2 kg! That puts her at the 25% for weight on the DS chart.

Update on Crazy Eyes

The ophthalmologists have come and gone.  Structurally, her eyes are perfect.  Wonderful!

So, that leaves either something inter-cranial or a medication reaction.  Everyone is leaning more to the inter-cranial something.  So we will have an MRI tomorrow.  Since her trach has metal in it, they’ll have to change it out with a different type during the procedure.  Ophthalmology will start following us now.

Her fellow just shakes his head and calls her the troublemaker.

Seriously, I think we have had enough this week.  It’s Wednesday.

Sweet little one

Bella is resting well from her emergency surgery.  She looks so much better.  I am so grateful they were able to catch that quickly.  Poor sweet thing.  She obviously can’t eat anything for at least 5 days to let that poor belly heal.

She is getting magnesium and blood today in addition to her potassium.  They are also looking at her calcium and her thyroid function.  Her normal thyroid medicine is oral, so they are working on that as well.

Today, since every day there must be something new, the attending noticed her eyes during rounds.  She is having a oculogyric crisis.  Jason and I noticed it when they allowed her to wake up.  We just thought it was the narcotics in her system and when they cleared out, her eyes would settle down.  She used to track a toy and stare so intently into your eyes.  Now she’ll turn her head to sound, but can’t focus.  Her eyes do react to light, but she won’t blink to threat.  They have asked for an ophthalmologist to come and consult.  Hopefully, it’s nothing major. 

She was pretty sleepy when I took this.  She didn’t open her eyes very wide, but you can see her eyes jumping back and forth.  You can also hear that she sometimes has a little leak from her trach.

She is back

Our poor little girl.  We have talked with the surgeons.    Poor baby.  I will try to explain this since I don’t understand it that well.  In her fundoplication they took the stomach and wrapped it around the esophagus.  The fundus of the stomach is sutured (stitched) to hold it in place.  This makes it tight and hard (or almost impossible) to burp or vomit.  When they opened her up, they saw that where the fundus was sutured was necrotic.  That means the tissue had died.  And there was an abscess.  There was a perforation and lots of fluid.   They had to remove the dead tissue.  They removed the puss and cleaned everything up.  They re-did the fundo.  She has a drain. 

She looks wonderful!  Her skin was all marbled, even though she was stating well.  Now she has beautiful skin again.  Our fellow says we have earned a few more days stay here in the PICU.

To explain some of the tubes and wires.  She has a drain in her mouth.  It is draining the contents of her tummy.  Then there is the trach.  She has her leads to measure her heart rate.  She has a g-tube.  A drain.  A foley to collect urine.  Her blood pressure cuff.  Her pulse ox to measure her oxygen saturation levels.  While in surgery we was given a new double lumen central line.

Implications:  She now has a partial fundo.  Will it be able to perform the job that we need it to do?  We’ll have to wait and see.  But the fact that the tissue was dead explains why she was able to vomit this morning.  Her nurse and I looked at each other – shocked!  She should not have been able to do that.  Now we know why.

Her vent settings have been turned up.  She cannot have any meds in her tummy.  Most of her meds can be given by IV, but her pulmonary hypertension meds cannot.  So we are going back on Nitric.    They have re-started her sedation drips.  After she recovers, she’ll have to re-do all of her weaning. 

Please pray

Looks like we are headed back to the Operating room.  Our sweet girl has a pneumoperitoneum.  According to the internet and our doctors this means that there air or gas in the abdominal (peritoneal) cavity.

The cause is unknown.  Her body is reacting with fever and elevated white blood count.  Her platelets count is also decreasing.

First they are going to drain her stomach.  It is seriously distended.  They are going to place a tube through her nose and suction everything out.  Then they are talking about taking her back to the OR and take a look.  Please pray for our sweet girl.  Her doctor said, She never catches a break, does she?

We aren’t going anywhere

Everyone was hoping to boot us out of the PICU today, but Bella is comfortable here.  Oh well.  Our fellow calls Bella the little troublemaker. 

Bell’s tummy is even more distended and firm.  They are stopping her feeds again.  This time they will do an ultrasound and another x-ray.  Her fevers continue.  Her white blood count has gone up, so they are going to culture her urine and her central line.   They are running a liver panel.  They are scheduling another PICC line, since we aren’t going anywhere anytime soon, like home.  They are starting another broad spectrum antibiotic.  Pulmonology has asked that they not touch the vent settings until the tummy is resolved, so no more weaning on that front.  Her sedation is now off.  She is moving around.

The good news is, I guess, that I’ll have a little more time to work on the nursery at home.

Look!

I honestly can’t tell you the last time I held little Bella.  Look!

Since Dr. Jones changed her trach and removed the stitches, she is off fresh trach precautions.  Her other surgeon (I can’t spell his name  :(  ) came by and OK’d her to start eating again.  So her NeoSure 30 k/cal plus corn oil has been re-started – slowly (5 ml/hr), but we’ll get there.

Today’s nurse also went ahead and made us our trach bags and she kept turning down the oxygen.  Bella is at 25% FIO2 and a PEEP of 9.  Her tidal volumes are still 60.  Today has been a very good day!

Pink Princess

Lots to report today.  When I got to the hospital this morning, I grabbed a little breakfast in the cafe here.  The senior surgery fellow was also grabbing something.  She came over and apologized to me.  I though it is so funny.  Last week when she was examining Bella because her tummy was so distended, she didn’t know who I was.  She was speaking medical to me.  Fortunately, I’ve been here long enough to understand everything she was saying.  As she was speaking though, I thought, “She doesn’t realize I’m the Mom.”  Today she apologized and told me that she thought I was the resident.   She wanted to make sure I didn’t think she was being insensitive.  No, I personally would rather have the truth straight up than dumbed down.

The first thing I always do when I get here in the morning is my own personal assessment.  Then I ask the nurses how she is doing.  Today I noticed her little hands were bright pink and hot.  Her little toes were headed that direction.  Our poor anesthesiology fellow had no clue what it was.  I said it looks like an allergic reaction.  So we waited for rounds with the attending.  By that time (2 hours later) , the pink is all the way up her arms and starting to march across her chest.  It is across her checks and her ears.  Her feet are bright pink and it has crept up past her knees.  Her nose looks like Rudolph's.  Dr. Stein took one look at her and said, “What meds is she on?”  Turns out they started bactrim very recently.  So that has been discontinued.  And she will be given some Benadryl – and we will watch this.  So, note to self.  Bella has a sulfur allergy.  Do not allow sulfur drugs to be given to Bella, otherwise she turns into a little cherry.

I have the best nurse today.  She has the heart of a teacher.  She is allowing me to give all the meds that are through her g-tube.  She is going to teach me the trach care.  She is setting up our trach CPR class.  Yeah!  I love days like this when I can learn.

We are still playing with low grade fevers.  She continues on TPN and lipids until the surgeon clears her to eat again.  We are going down on our fentanyl and versed drips.  If all goes well, those should be off by tomorrow some time.  So we should be heading to PCU in a day or two.  There we have to learn how to care for our girl.  We are making steps toward home! 

We have been here 5 weeks, 3 days this stay so far.

Active Bug

Our Bella Bug is fairly active.  She is more awake now and the sedation meds don’t have as much affect.  She seems to be doing fairly well.  They are also reducing her sedation meds by half.

We did get the first trach change.  actually not a change yet on the tube but the surgeon came and removed briefly to check how she is healing and doing.  She is doing well and has the sutures removed and also is off of fresh trach precautions.

We are working to get her ready to move to PCU once she can get to the point of not needing the ICU care.  Hopefully within a couple days or so.

Plugged Up

Bella’s trach is healing well.  The doctor is pleased.  Tomorrow they will change that for the first time.  A big step.

Bella is still playing with fevers.

Besides her occasional desat and brady, her newest fun is in her digestive system.  Her poor little belly is distended, warm, and hard.  She has been NPO (no food) since yesterday when I first noticed her tummy problem.  Her x-ray shows that her bowels still have contrast in them from last week’s Upper GI.  So things are slow moving.  They gave her one glycerin suppository last night and she did stool, but nothing since then.  The surgeons will come and evaluate and we’ll go from there.  I feel badly because she grimaces when they poke on her belly.  Poor thing!

The Child Life Specialist made a trach doll for Bella’s sisters.  She also sewed in a little g-tube for them.

 

 

The trachs

 

 

 

 

The g-tubes

Thursday

Bella keeps playing with fevers, but she is much better than yesterday.  :)

They are trying to come down on her vent settings.  And they are looking toward changing her sedation.  They are starting atavan to go with her methadone.  They will slowly increase those while decreasing the fentanyl and versed.  

Heal, baby girl, heal.

What is a Trach?

A friend of mine asked me about Bella’s trach last night. 

The two sites below have some really good information on them explaining what a trach is and why they are necessary.

 

This little guy is well enough to not be on the vent, but his trach is still in place.  Some kids only need the vent at night.  We hope that Bella will get to this point sooner than later. 

 

 

 

 http://www.health.wa.gov.au/education/tracheostomy/tracheostomies.cfm 

 

This little one has had her trach removed.  It’s called decannalization.  It is a day we are looking forward to!  With all of her other scars, what’s one more?  We are so grateful she is alive and with us!

 

http://www.tracheostomy.com/

Wednesday

Bella is more comfortable this morning.  We do have soothing music playing and she has been resting.

The pulmonologists came and talked to me.  We are all talking about the process of heading home.  What an amazing place to be in!  How different than two weeks ago today when I was looking at caskets.  Both the Pulmonologist and the Critical Care Attendings feel that now Bella has had her trach, we are dealing with a new kid.  The Bella of the past is not the Bella of today.  One doctor said that because she was having to work so hard (a baseline of retractions and a Respiration rate of 60-70 when well) was causing a great deal of negative pressure in her lungs.  This is why the capillaries were leaking so much fluid into her lungs.  So with our new respiration rate of 30 and the ventilator, along with time for growth and strengthening of the muscles, the leaking shouldn’t happen as much.  We should be able to be off diuretics in a few months.  And they should be able to follow us clinically with visits further spread out (like once a month versus once a week with cardiology).  I must admit that I want to believe that.  I really do.  My experience doesn’t support that.  But I read this morning about learning from the wisdom of others.  I will try to have hope.  They did tell me that I will know, as her mother, even better than an x-ray, when she is not doing well.  OK.  We move forward into this strange new world with faith and hope.

Bella continues to be low on her potassium.  So they are having to give her a lot of extra potassium.  They feel the answer to that is to remove one of her diuretics (she’s on 3).  She was quite positive yesterday, but a normal person is positive.  And there was no x-ray this morning because of the fresh trach precautions.  I am concerned, and I have voiced it, but I am trying to have faith in this new plan of attack.  Oh, I hope they are right!

The difference a few hours can make………

Bella got very cold.  Her skin was dusty and marbled.  Her pulse ox was good, but her body was not matching the monitor.  Then she went trachy, 180s.   Lots of people were in our room.  Mama was extremely nervous.  When I watch all of those alarms going off, I can’t help but wonder if this is it.

She spiked a fever in the middle of all of this (102.1).   Her chest x-ray shows some fluffy lungs – they are going to re-think their reduction of the diuretics (ugh!).  Cultures have been drawn and two heavy duty antibiotics are being started.

We have been here in the ICU for a month.  Jason and I were holding our breaths that she wouldn’t get sick again.  We came down here with aspirate pneumonia.  We were on a course of antibiotics.  We had one day of no antibiotics before she got some bacterial thing.  The antibiotics for that finished at the end of last week.  We were pleasantly surprised that she didn’t pick up something else over the weekend.  She was healthy enough for her surgeries, and now here we are again.

Sweet girl.  I wish for you a moment free from pain and sickness.

Fighting Hard

Poor Bella.  One of the effects ( I guess the word is) of DS is that it’s hard to sedate these kids.  Bella has been on fentanyl and Versed for so long that their effectiveness is limited.  They don’t want to paralyze her (norm trach protocol till that wound heals), because they can’t properly sedate her – and it’s cruel to be paralyzed if you aren’t sedated.

So she is receiving a lot of PRN meds.  The doctor is starting Methadone in addition to the others.  We’ll see.  I wish I could take away this pain from her.

My doctor gave me Erma Bombeck’s, “At Wit’s End For Chosen Mothers.”  I thought it was sweet of him. 

Doing So Well

Bella is doing so well.  I love watching her breathe.  She is sating well. 

They have increased her sedation drips because of the pain from her incisions.  She spiked a little fever last night, but not bad.  It was half expected because of the surgery. 

Her right upper lobe has collapsed again.  Her dieresis was good from yesterday.  Her potassium is still low, so we’ll get a double dose this time.

I got to watch and ask tons of questions as they suctioned and changed the dressing.

The doctor said, God willing, she should be home in three weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Her Face

Remember she just came out of surgery and she has had tape and junk on her face forever, so her face is a little beat up, but here is our sweet, beautiful Bella!

Finished

She is all done.  Both surgeons have talked with us.  Everything went well.  She lost her PICC line, though.  Her leg was getting all marbled, so they are going to take out the PICC and we’ll see what kind of access she has when she gets back.  So, about another hour till we see her.

Interesting about that leg.  Dr. Salazaar, her heart surgeon, told the CVICU not to place a line in her groin.  He said that he has seen kids with DS gets those lines and their leg goes blue.  Their anatomy is just slightly different in that way.  Everyone that I have told that to has said, “No, that’s not true.”  And now here we are.  Oh well.  Learn something new every day.

I can’t wait to see her beautiful face!!

Update

Trach is in.

Our girl is doing well.

11:45

At 11:45 today Bella will go in for trach, fundo, and g-tube.

This is life-altering.  I am so excited, though, to see her face again without any tape or tubes on it!

We have a new attending, but we have been here so long that he is familiar with Bella.  We talked about tracheal/bronchial malasia.  We talked about chronic lung disease.  We talked about optimal nutrition and time.  Same thing we keep hearing.

But something new.  He asked who her pedi was.  Well…I found out from my OT that my pedi doesn’t take kids on trachs.  I’ll need to verify that.  He asked if we lived here in Houston, and the fellow said, “They live here (meaning the hospital   :)  ).”  They have an entire department here for Special Needs Primary Care.  So we’ll see.  Exciting that we are talking about pediatricians!  He was saying that with kids like Bella, it’s important to find a doctor that will not panic at every little thing, but will move quickly on the important things.

Looks like her potassium got a little low.  Her heart rate was really low, but she has received some potassium and has jumped back up to where she needs to be.

I’ll report later! 

Visitors

Bella had some visitors today.

Her sisters all got to come and visit.  They had to get all dressed up for the PICU in order to visit.

We also went to see the Ronald McDonald House where Shelly and I go to eat Lunch or take a break.  It has a nice outdoor area on the 4th floor that is nice to sit at.

 

--Jason

Another Awake Day & Some News

Bella had another awake day today.

Yesterday she had a PICC line put in and is a little sore from that.  Her heart rate would go up and she would get fidgety.  The nurse would come in and say that she is feeling some pain with the PICC line.  A little pain killer and sedative and she was pretty good.

With the sedative our little Bella has a hard time concentrating on looking at one spot.  Her eyes wander all over.  To me she must be dizzy from the way her eyes are moving.

A little before I left,  a doctor stopped in and wanted me to sign some paperwork for her upcoming Fundoplication and g-tube.  She told me that we are currently on schedule for surgery on Monday!

YAY!

Now we just need to find out what time on Monday and if they will be doing the Tracheotomy at the same time and day.

We should find out more tomorrow.

--Jason

PICC line in

Today’s exciting journey was to IR to get a PICC line.  I was kindly persistent and succeeded in getting a double lumen PICC line!  That means there are two access points for meds or drawing blood.  ICU wanted a double lumen, but IR usually doesn’t like to place them.  She is on lots of drips for sedation in addition to a lasix drip.  The lasix is incompatible with the other meds, so it has to have it’s own access.  We were looking at getting the PICC, but then having to have a peripheral IV.  She loses those so quickly and is such a hard stick, that I really didn’t want to go there.  So I did a lot of talking in the IR and they were so kind to give us a double lumen PICC – wahoo!  No more heel pricks.  Yeah.  The ICU team was so pleased when we came back to our room!  Our journey up and down was less eventful – they knocked her flat first and then just bagged her till they put her on the anesthesiology machine downstairs.

Another change is we are finally weaning the nitric.  We are at 0.5 and looks like we’ll have that off by the time I go home today.  She is sating in the 90s and doing well.

Her blood pressure is better, but her lungs are hazy.  Wish I hadn’t been right yesterday.  Oh well.

To re-cap this week:  We have made some good progress.  Bella has gotten off the paralytic and will probably get off the Nitric.  She got a PICC line.  After what will hopefully be a quiet weekend, we will re-access her nutrition, making sure that it is optimized, plan for and probably have surgery, and try to come down on her O2 levels and PEEP.

Pulmonology

The pulmonologist who specializes in Pulmonary Hypertension just came by and checked in with us.

Things he said:  He went back and talked with the doctor who did the heart cath.  The cardiologist was not surprised we have had such a rocky course based on her pressures and her cardiac disease.  He said if she hadn’t have had the heart surgery we would be in big trouble right now.  So, I am glad that is behind us.  He agrees we need the trach.  Looks like that will happen next week.  He is not confident we will follow the nice three week recovery/parent training/go home course that they have established here.  He feels she might take a while to come off the high vent settings.  She cannot go home on these settings.   Her FIO2 really needs to come down.  He did say that he thinks she is doing well enough to NOT have to go on Flolan right now!  (WAHOO!)  We talked about needing to find the perfect balance of fluid intake and dieresis.  We talked about her non-existent immune system.  We are going to need to make sure that she gets her immunizations, RSV shots, and flu shots.  And the rest of the family will need the flu shot as well. And, his words, we are going to have to be dramatic with the hand washing. (He says while miming someone washing their hands – very cute)  :)  He, like everyone else, says she needs time and to grow.  I asked him about things like probiotics.  He laughed.   He is foreign (couldn’t place his accent) and he admitted that where he was raised there are natural things that help, but there are some weird things out there.  He said to be careful and make sure that we tell them what we give her, so we can make sure they don’t interfere or interact with her meds.  Logical.

Her ICU doctor has temporarily stopped her Lasix drip.  Her blood pressure is changing – her systolic number and diastolic number are getting closer and closer, but her mean is staying the same and her heart rate is steadily increasing.  So?  Speak English.  Well, from what I got, her heart needs a little bit more fluid to work with.  So they are stopping the lasix to allow that.  This is obviously important, but it worries me.  When he walked off, I turned to the pulmonologist and said, “Well, we’ll see in the morning’s chest x-ray if her lungs are full of fluid or not.”  (That shows so little faith, doesn’t it?  Experience.)  We talked for a few minutes about this pattern she has of filling with fluid, working so hard to drain it, relaxing our efforts, and them filling again.    He said to me, “It’s that balance we were talking about.”  So true.  I’m hoping for good things, but nervous.  (I think that is my normal state, though.)  Again, the pulmonologist reiterated to me,  “Time, she just needs time.”

Why does time have to take so long?  :)

Big Exhale

Day to day is so different.  Bella is doing well.  I am so grateful.  Her nitric is down to 1 (!!).  Her FIO2 is at 60% and her PEEP is at 9.0.  She is sating in the 90s (!!).  She has only bradied  once.

We went down to have our Upper GI – required before the              g-tube/fundo.   Transporting a child on a ventilator and Nitric (even of only 1.0) is a process.  It takes some serious time to get ready.  Everything goes with you – every inch of that bed was covered with equipment and supplies.  They take everything they might ever need, in case they need it.  She was given a little paralytic for the procedure and trip.  She decided she had had enough once we arrived in the diagnostic imaging room.  She had to be bagged and she did come back up.  I am so glad that for whatever reason we get the anesthesiology fellows.  They know this sedation world – and I am grateful.   She had to have a breathing treatment and she got several doses of sedation during the procedure.  It was a bit scary to watch the procedure.  Not the Upper GI – nothing scary about that, but to watch my sweet girl and the monitor.  I wondered about Bella.  She has had so many good days in a row.  Then I start thinking, yeah, she is doing so well, let’s move forward.  And then I see how very delicate she actually is.  She is still very ill.  We have been trying to schedule her surgery.  It takes a while to get everyone together – general surgery, ENT, and anesthesiology.  Watching today I wondered if she’s strong enough.  AND I realized why they don’t let parents watch their children have surgery.  I wanted some versed for myself at the end of the GI series.  What would watching my child getting cut apart do to me?  Anyway, I will meet the surgeon tomorrow probably.  We are looking at next week sometime.

Rest well, sweet girl.

Happy Birthday!

Today Arabella is six months old!  In that time, she has been home 22 days.  I’m hoping the next six months sees most of her time at home surrounded by love and family.

In honor of her life, I put together a slideshow of Bella.  It only includes pictures since I meet her, so her first two months are pretty sparse.  It’s long, but don’t feel like you have to watch the whole thing.  I loved making it!  She is my sweet, dear, stubborn, beautiful baby girl.

Happy birthday baby!

Consider the Butterfly

"consider the butterfly. Wrapped tightly in its cocoon, the developing chrysalis must struggle with all its might to break its confinement. The butterfly might think, "Why must I suffer so? Why cannot I simply, in the twinkling of an eye, become a butterfly?" such thoughts would be contrary to the Creator's design. The struggle to break out of the cocoon develops the butterfly so it can fly. Without that adversity, the butterfly would never have the strength to achieve its destiny. It would never develop the strength to become something extraordinary."

Elder Wirthlin

my friend Krystal reminded me of this tonight…..

Bell is doing well

Bella continues to do well.  She is more sleepy today.  At one point she was getting agitated, so they gave her a little PRN sedation, but no paralytic.  She continues to cooperate with the vent.  They are slowly weaning on the nitric.  We are down to 10 and believe it or not, we are sating in the 90s!  Pulmonary ordered another ECHO. They would really like to get a number for her PH.

Brother Geddie, our friend and neighbor, stopped by today.  He is doing a month rotation here in the NICU as the Attending.  It was really kind of him to make it in here and check on us.  I appreciate it!  I was able to show off our cute girl and how well she is doing.  :)  Thanks Gwynn!

Let’s see, what else?  We went back up on her Lasix drip.  Her foley was removed.  She continues on a PEEP of 9 and FIO2 of 60%.  PICC line is being scheduled.  Our surgeries are a maybe for next week.

I overheard a conversation today that I was so grateful I was not the mother on the other end of the phone.  The doctor had to call and ask about doing one of two things.  Either placing  a trach or letting the child who is developmentally delayed just go home and be made comfortable.  Ouch!  That poor Mama.  I wanted to reach through the phone and hug her.  What a huge decision to make on the phone.  Poor lady.  Now I know why the doctor was so surprised when I sat down and frankly talked to him about a long term plan and if a trach was in our future.  At least they know where I stand.  I feel horrible for that family.  The nurse said they don’t push things like long term procedures and DNRs.  They try to ride things as long as possible before they have to do that.  Today Bella is having a good day.  Today that little angel across the hall of the ICU isn’t.  I pray that they will both be blessed.

My Favorite Part

My favorite part of her being quasi awake (she’s still on a ton of fentanyl and versed)……….

holding my hand.  :)

Evening rounds are complete.  We have lost our position of “sickest kid in the ICU.”  I feel bad for that child’s parents.

One of the evening shift doctors was asking about Bella’s PEEP (which is 9.0) and the attending and fellow both jumped and said don’t touch it.   She is down from 12, but she likes a high PEEP.  He said she is like a kid with bronchial mylasia.  Of course, a new term means I’m researching – and I agree, she is like a kid with bronchial mylasia.

It's a problem with the lungs in which the airways literally do not stay open they way they should, because they are mis-shapen or too weak.  Malacia literally means "soft", and in this case, the lungs are too not stiff in places they should be.
For instance, usually, a person's trachea has ring-shaped cartilage that keeps the lung passage ways open in between the contractions of taking a breath; when someone has traceal bronchial malacia, the trachea aren't elastic and stiff enough to bounce back to their correct shape when they should.
The same thing can happen with other structures in the lungs, including the tiny air sacs that should swell open and closed with each breath.  If they don't change their shape properly, they may be malformed -- bronchial malacia.
Typically bronchial malacia happens in premature babies, whose tissues haven't matured sufficiently to perform necessary functions for breathing.  Most of these cases have a good chance of sorting themselves out as the child matures -- if the child can be kept alive long enough.  Bronchial malacia can also happen due to chronic long-term disease or chemical exposure.  Genetic causes would be unusual but not impossible.

Happy News

Look who is awake!   It’s been almost 3 weeks since I’ve seen these eyes!  I missed them.

They stopped her Vec today and she didn’t fight the vent!  Her vent settings are still high.  They are going to try and wean the Nitric over the next two days.  If they are unable to, she will get Flovan.  If she can come off, then no Flovan – wahoo!!! 

The doctors had admitted to me that they didn’t know what else to do.  They were just supporting her.  I am so glad that it was just that bacteria, and now that she is over that, she is recovering.  What a happy thing!  Wednesday I was looking to see where we could buy butterflies to release at her funeral.  Today she is with me!  Praise and happiness!!!!

Do you know how good it is for this Mama to see her baby awake?  Happy dance!!!!

Let’s see…what else haven’t we told you?  She has had two more transfusions and she’s scheduled for her PICC line of Thursday.

The no change update

The doctors want to make sure she continues to do well so they are leaving her settings alone for the weekend.  She is doing well and blowing a few spit bubbles. (time to suction).

--Jason

Increased Scrutiny and a Glimmer of Hope

Walking out of the elevators from the parking lot, I had to pass a medical screening to be permitted into the rest of the hospital.  They are taking this very seriously.

Bella continues her new norm – playing with her vent settings, desating here and there, and having episodes of brady and trachy – but recovering from them.

The plan for the weekend is to try and let her ride it out and not do much to her.  On Monday the Pulmonologists want to talk to me about Flovan.  I’ve been hoping we could avoid it, but I guess not.  We’ll see on Monday.

Our one day of nothing major (or are we just getting used to this new norm) has sparked a glimmer of hope.  This morning I dreamed that Bella was propped up on pillows, we took out all of the tubes, she opened her eyes, looked at me, and smiled.  Heaven.

Yesterday I was able to talk to Joy’s therapist about Bella.  We talked about what kind of services she would receive.  We talked about her room.   It felt so good to be planning for the future – a good future.  On Wednesday, the doctor and I talked about dying.  I just needed to know.  He acknowledged that she was on that path if she didn’t improve.  BUT he told me, the team has not discussed it, which means we aren’t to that point yet.  Thursday she had a more stable day.  One glimmer, I’ll take it!