Tuesday

 

She wants to hold onto things now.  Here is her left hand holding  her hair.  Her right hand is never far from her ladybug.

 

An hour in the bouncy chair while doing her trach collar time and an hour in the tumble form in the afternoon.  Bella is doing so well. 

      

 

She looks so grown up to me here!  Where is the baby? 

 

 

Bella gained last night to 5.3 kg.  Slow, consistent weight gain!  So far, so good on the switch to diurel from Lasix.  That’s good.  Tomorrow is her hearing test in the morning and then they want to pull her PICC line.  So I asked (since I usually get angry when they stick her little foot) if they could DC all of her labs then.  And, surprisingly the doctor was fine with that.  All of her labs from yesterday looked wonderful.  Good.  One less worry.

I am now doing her trach care by myself – yeah!  I just tack that on with her bath and other care.  The discharge planner has been working with us (what a good feeling!).  They are working on finding a pharmacy that will compound her Pulmonary hypertension meds and give her liquid Viagra.  We have our equipment company and our nursing company.  They are working out hours.  Everyone is comfortable with us going home because we have taken advantage of all of this time in the PCU to figure out all of her care.  My confidence is growing.  I am still nervous about the transition and having strangers in our home, but we’ll adapt.  Tuesday or Wednesday of next week!!

Shawn, our wonderful librarian, stopped in today to say hi.  That was a wonderful visit.  Her Uncle is at Methodist hospital and could use some prayers.

The eye doctor has been by to see Bella again.  The movements of her eyes are so much better than when we were in ICU, but they are still present and we are off all narcotics.  So they would like to see an MRI.  It does a better job looking at the brain stem and cortex of the brain.  Hmm….

Sorry this post is late, but I wanted to wait until after I changed her trach.  I did it!  I, Shelly, changed her trach for the first time today.  Honestly, it wasn’t that bad.  Thank goodness.  Now barring her getting sick or plugged, I don’t have to do that again for a month.  Yeah!

Monday

1st – to answer a few questions.  Yes, I do her hair every morning, not the nurses.  I give her a bath, do her wound care, g-button care, and do her hair.  It’s a lot of fun!  I love how dark it is – and there is so much of it to play with!

 

 

 

 

 

She is on 30 calorie formula, plus bene-protein, plus corn oil four times a day – for a grand total of 140 calories per kilo per day.

Her blood gas was showing that she was being a little over-ventilated, so they have gone down on her rate.  She is doing very well with her trach collar (when they take her off the vent and she just gets O2).   That is wonderful!  They have deflated her cuff and plan to change it out to a trach with no cuff.  (Huge – shows how much she has improved.)

Her weight today is 5.22 kg.  They are going to switch her over to Diurel from Lasix – less toxic.  Her hearing test is on Wednesday.  Dr. Graff is this week’s Attending.  She is wonderful.  She has been our attending on some of our sickest days.  She said today that Bella gets the prize for “Most Improved!”  :)

Discharge plan for July 8th is still being discussed!  I am getting antsy.  She looks fantastic, so let’s go.  I looked back and I had these same feelings when we were discharged last time.  I just couldn’t wait to get out of here.  It seemed like those last 10 days took forever!  I am trying to prepare myself to go home.  I feel like I can take care of her, but it’s so reassuring to know that I can just open the door and get help if I need it.  And…after all of this time, I have made friends.  I will miss the sweet people here that take care of my sweet girl.

Beautiful Video

Lacey is a very generous and loving woman.  She is the mother of Jaxson.  In her spare time (!!), she makes blankets for babies and kiddos with medical problems.  She made one for Bella.  She put together this video.  Thank you Lacey for the kindness you show and the hope you give.  Enjoy!

Make video montages at www.OneTrueMedia.com

Sunday Visitors

It’s the weekend and that means Daddy time with Bella.

Bella has been doing very well this weekend and has been smiling and laughing with me.  It is wonderful to see her doing so well. 

Today Shelly came up with Lizzy and Joy to see Bella.  They enjoyed their visit and it was good to have Joy see her sister again.

Trach Trial

Another success!

What a wonderful couple of days!  I think they should mildly sedate the parents whenever they do a procedure on their child – exhale!  breathe.  Yes, people do laugh at me here.  :)

Here the RT is taking her off the vent.  Then she just has a small flow of oxygen (30%) in the new blue tubing – but no pressure like a ventilator.  Can you see her just thinking, “OK, ladybug, so long as you are here.”

These are her stats after about 10 minutes.  Yeah!  Everyone is congratulating themselves – we knew she could do it!

Then about 15/20 minutes in, she started to cry and look at me with the “Mama, fix it!” eyes.  Concerned.  Worry.  Her respiration rate got pretty high, but her heart rate stayed around the 140s, so the pulmonologist said to keep trying.  Ugh.  Worry.  Concern.  So I picked her up and held her and talked to her.  And the sweet thing settled down.  I told her stories about Lizzy’s dinner last night, about what her big sisters did yesterday in Utah, about her birthmother and how she would call her “popet” (probably misspelled).  She settled right down and went to sleep.  She managed for one hour.  She did it!  Her respiration rate is a little high, but she did it!  Way to go little one!

  So how Dr. Mallory does the wean from the vent (once we are home and things are going well) is this.  He does the trach trials for one hour once a day.  Then after a while, he lengthens the amount of time until one day we will be off the vent during the day.  One day we will be off the vent totally.  Yeah.

Meet with the Primary – A Plan

Our current attending felt that Bella would be better served with a primary Intensivist ( that’s a Critical Care doctor that is consistent).  So she asked Dr. Sur to be our Primary.  Dr. Sur is a brilliant physician.  She is extremely thorough.  She grills the PAs.  Someone told me that she has seen many a med student tearful after talking with her.  That being said,  I like the choice.  She listens to me, but she doesn’t just do what I say.  I know that sounds crazy since I have been fighting for doctors to listen to me for so long.  I have learned enough jargon and some do what I tell them to do.  I don’t think I have enough knowledge to be making these decisions.  I want to be listened to.  I want my opinions to count.  But I want someone who understands all of the body’s functions, problems, and complications to make the final decision.  We now have a primary Pulmonologist as well – Dr. Mallory.  And we had already chosen our cardiologist when we went home after heart surgery.  So now we have a team.  All of them are excellent.  Bella is in good hands.  Now when she comes back to TCH (she will at some point they have told me), she has a team in place and new doctors don’t have to get to know her every couple of days.  This team makes the big plans – the attendings do the daily peddling that responds to the acute problems of the day.  But there will be consistency.  I wish they had done this three months ago.  She agreed it would have been a good idea, but better late than never.

One big problem is the pediatrician.  We need one.  So they are going to get us in with Dr. Lewis at the Special Needs Clinic here.  Dr. Sur says that she is excellent – that is high praise from her.

We “officially” have a plan.  I have said this before, but the team has meet, so now it’s official (I hope :)  ).  We went over all of her big problems, all of the long term problems, and all of the short term problems, as well as some housekeeping things (like catch up immunizations).  What it all boils down to is that Bella needs to gain weight. She is 5.28 kg today.  The day to day variations are not as important as the trend – to consistently gain weight.  If she can show an upward trend (and stay healthy), we have a tentative discharge date of July 8th or 9th.

Now, what about her diuretics and her trach trials?  Well, Bella has never been without her diuretics and she has had such a rocky road that they don’t know what her baseline is.  So that is a “we’ll have to see” answer.  The trach trials are going to happen.  Maybe even starting today.  She gets to try for one hour to breathe on her own a day – so either one hour at a time or two half hour times.  But no more than that.  Why?  Because if she is able to do it, it is an increase in effort.  She will burn more calories.  We will be here longer.  So the plan is to see what she can do, but never let her get to distress- good.

She needs to grow.  For her chronic lung disease and her pulmonary hypertension, she needs to get bigger.  What if she doesn’t show an upward trend in the next two weeks (I think she will), then we have to revisit and come up with a new plan.  One that explores why she isn’t gaining. 

I feel like she is in good hands.  I feel like if I lost my notebook, she would still get good care.  That is a good feeling.  Having a discharge date, that is fantastic!!

Asleep with her ladybug.  Some kids have their security blankets or their teddy bears.  For Bel, it’s this lady bug.  They have long, in-depth conversations.  :)  Thanks Ann.  She adores it!

 

During PT, Bella is getting better every day.  She is smiling and interacting with people.  It’s a wonder to watch.

Bronch is done!

So many wonderful things to share!

1st – The attending tried a new drug, pintobaritol – and it worked!!!  She only required two doses and she was totally out.  Good bit of info to keep in the back of my brain for later.  It makes her BP go pretty low, but she is totally out.

2nd – The bronch went so well.  She has the most beautiful bronchia I have ever seen!  They were glisten-y  and white.  The human body, God’s beautiful creation, is a wonder to me. 

3rd – She was fine with them turning the PEEP down to 5 – no trouble whatsoever!!!  :)  Translation – no malasia!

4th – Dr. Mallory, the expert here on Pulmonary Hypertension, was recalling how very sick she was when she came in.  He said, “It’s like God knows who she is and loves her.”  Yeah, it’s like that.  He called her scope a miracle.

5th – She has reserve.  I have been told for months that she has no reserve.  She has some now!  :)   :)

6th – Dr. Mallory would like to try some trach trials.  (Dr. McPherson isn’t going to be happy.)  I am thrilled! 

The RT told me earlier today that when she is sleeping, she doesn’t over breathe the vent – translation – she only breathes when the machine tells her to, but when she’s awake, she has spontaneous breathes.  So, she is looking more and more like a very good candidate for vent at night and humidified collar during the day (in time).

7th – Dr. Mallory said that she is the perfect example of a DS baby – how they have to get both the heart and the lungs working correctly.

I am so thrilled!!  She is doing so well.  I have alternated between the happy dance, excited jumping, and tears.  This is so amazing to me.  Last night I was talking to two of the PAs.  We were talking about how well she is doing.  (They told me they had orders for her transfer back to ICU already written which they kept in the back of her binder – and they threw them away yesterday!)   I was recalling how badly she was doing – looking at caskets, planning the funeral, having “the talk.”  And now all of this.  I got to thinking.  I must have remembered it all wrong.  She couldn’t have been that bad, so I went back and looked.  Yes, yes, she was.  I am so grateful that she is here and doing so very well.  I am grateful for miracles.  I am grateful that she was given the time she needed.  I am grateful!  I thank thee Father.  I thank thee for Bella.

 

 

Smiling as the sedation starts to wear off

Thursday

Big day – today we are going to do our bronchosopy and try bolus feeds. 

The doctor said if the bolus feeds don’t work, no one is to be disappointed because sometimes it takes several tries before it’s successful.  If this time doesn’t work, we’ll try again around Labor Day.  Wow.  This is a very conservative doctor.  So we’ll see how it goes.  I had the PA double check and they only removed the fundus from her stomach, so we should have the capacity to handle the increased volume, but will her tummy want to?  Now that’s a different question.

They want to get her off Lasix sometime (not today) and start her on Diurel.  It’s less effective, but also less toxic on the ears and kidneys.  So we’ll see.  We have been on Diurel before, but never without lasix.

The Bronch is this afternoon.  That will tell us a lot.

After the hearing test on Monday, the doctor wants to remove the PICC line.  Since there are no other tests or needs for IV access anticipated, the risks will begin to outweigh the benefits of the PICC line.  I wish they would leave it till we left, but I think I’m going to lose that battle.

So, then the question.  What stands between us and going home?  Weight gain.  She anticipated 2 to 3 more weeks – ugh!  She wants 5 to 7 days where they don’t have to do anything to her.  She wants her to be 6 kg.  We are 5.1 today (she gained 0.06 kg last night!)

Finally, though, doctors are talking to each other and we are about to hand out the boxing gloves.  Pulmonology wants to wean the vent more.  Critical Care wants her to grow to like 8 kg before any more weans.  Critical Care will decide when we go home.  But the CC doctor admitted to me that Pulmonology will ultimately win because she’ll be outpatient and then pulmonology will be the ones following her.  So, craziness.  Ultimately everyone wants what’s best for Bella.  They just have different strategies to get her there.

For Fun

The light bulb burned out in the projector that so often entertains Bella while she lays in her crib.  So I thought we’d try the bouncer.  I think it was a hit.  We need to work on that tongue!  :)

I am so pleased.  She is doing so well.

Wednesday

First, our little adventure, and then down to the nifty gritty of her daily life here at TCH. 

Yesterday, pedi surg got back to us about her g-tube being replaced with a mickey (g-button).  They felt that given her complications after having her g-tube placed and her fundo, that they wanted to wait two full months……but not from that surgery …from her exploratory surgery where they removed part of her stomach, tried to drain the abscess and did the partial fundo.  So, July 22nd.  I, for one, plan on being home by then.  What does that matter?  Well that means coming back here to TCH – and as long as we are vent dependent we will travel to and from doctor’s appointments in an ambulance.  Sounds like a lot of hassle for a 5 minute procedure, but what can you do?

Well, if you are a 7 1/2 month old baby girl who likes to hold onto to wires,  you can get ahold of the g-tube that Mama has so pain-stakingly kept out of your reach and yank the whole thing out, stitches and all, right after Mama leaves and the PAs and RNs are switching for the night!

That is one way to get surgery’s attention.  Then they might consent after all and give you that mickey button – one month before they wanted to. Crazy girl!  :)

In other news, she lost weight again, but I expected that, since she couldn’t eat without her g-tube.  Now that her mickey is in, she is getting feeds again – and at a higher rate.  She was positive 300 last night.  Her lungs sound a little coarser, but not wet.  What a blessing that she is doing so much better.  Before, being that positive, she would be in respiratory distress now.  But she is doing well.  She has also been started on baby aspirin to thin her blood a little.  Her bronioscope (sp) is scheduled for tomorrow. 

More fun pictures:

She is finally starting to use her hands!! I am so excited!  I placed her ladybug right next to her hands.  When she moves them, she hits the ladybug – and she likes it.  So now she is starting to voluntarily (versus involuntarily) hit her toy!  Yeah!  She won’t reach for it yet if I move it away, but baby steps.  Yeah Bell!

 

Our good friend Linda was in town.  She came up and got to hold our sweet girl.

 

 

 

From PT today.  I love her eyes!  There is so much in those eyes.

A Plan

The pulmonologists just left.  They have spoken with the Attending and would like to continue to try and wean the PEEP.  They want to do a broncialscope (probably spelled wrong).  They will go down and look at her airway and see once and for all if she has broncial malasia.  They also would like to try a HCT – I think that stands for humidified collar trial.  That is where they take her off the vent and see her “work of breathing.”  Wouldn’t it be wonderful to not have to be on a vent all the time?  We’ll see. 

Add in the hearing test and the button and we should have a busy next 2 weeks.  But…the exciting part is 2 weeks.  I have heard 2 weeks for 6 weeks now.  But the difference now is that I’m starting to hear the same things from different sources – wahoo!  The pulmonologist said he’d like to see us leave here at 3 months – July 8th.  A new day to circle on my calendar!

One Giant Step

Today we put Bella on her home vent!  It was a little touchy at first.  Her heart rate went up and her respiration rate went up, but she was still sating beautifully.  Evidently all vents feel a little different, so it takes a little time to get used to it.

Bella looked so good this morning!  She was in the best mood.  She even smiled – a rare occasion.  I’m hoping to catch one of these fleeting beautiful moments on film one of these days.  It is beautiful!

 

 

Bella asleep – she likes to kick off her blankets.  :)

 

 

 

   Laugh if you will, but in addition to the discharge chart, I have my own list of goals written on the wall.  It has helped.  Today in rounds the Attending told me that one of the doctors has agreed to be her Primary Intensivist – like a Primary Care Doctor here.  Wahoo!  Someone that will be consistent.  We will still have a new Attending every three or four days, but they will answer to this consistent doctor.  I am excited about this.  I’m hoping it will help.

Oh, and they are talking about increasing her calories from 110 to 140 or 150.  We’ll see.  She did gain last night.  She’s now at  5 kg.  Consistent weight gain, baby.  That’s what we need.

Monday

 

Becca holding Bella.  This is the first time Bec’s been able to hold her since Easter.  She was really excited.

 

  

Sitting up and looking around – We decided to try clothes again.  This time I went for short sleeves, no legs.  We’ll see – I’m hoping.

 

 

Look at how long her hair is getting!

  

 

 

 

Our home vent!!!  Another step closer!!!!

Bella had PT and OT as well today.  Our Social Worker came by to do her post placement report.  I am grateful that she came up here to the hospital, but that is where Bella is.  Good steps.  All good steps.

She did lose weight again – 4.87 kg.  :(  They have increased the volume of her feeds.  Grow, baby, grow.

Sunday

1st – Happy Father’s Day Jason!

Sounds like Bella did well for her Daddy yesterday.  She usually does!  :)  Today we are going to Lasix only three times a day (my fingers are crossed) and they are going to see if they can’t get the O2 down to 25%.  Yeah!  And because she is eating steadily again, her weight is increasing.  Good.

Which brings up the important questions – What are the magical settings on the vent that will allow us to go home?  The attending smiled, probably knowing that I was going to ask that question.  The highest PEEP that they would be OK with would be 7 (probably tomorrow – depends on that Attending).  Her O2 will be fine.  But her rate needs to come down.  The RTs have also told me that her i-time probably needs to come down.  Bella is still on continuous feeds, so I asked if that was a show stopper – and no it is not.  She can go home on continuous.  So….my glimmer of hope is getting brighter and brighter!  :)

Saturday

Well it is the weekend again and Bella is doing fairly well.  She is down to a PEEP of 8 and 30% FIO2.  That is good.  They will continue to drop the PEEP every 3 days or so. 

It has been a fairly boring day for Jessi and I with Bella but that is good as she is just doing good.

Hope for more boring good days! :)

Friday

New attending.  She is here through Monday.  She took a very thorough look at Bella.  We looked at nutrition as well as weaning from the vent, the methadone, and the diuretics.  Her weight is down to 4.85 kg (10.7 lb).  7 month olds should not be in size 1 diapers.  Failure to thrive is one big reason we are still here.  Her PEEP is going down to 8.  Her methadone will be discontinued tomorrow.  And she wants to re-examine her diuretics, but she wouldn’t be an Attending if she didn’t.  All attendings freak at her diuretics.  We’ll see.  I am hoping for good things – like successful baby steps towards home.

One crazy thing about all of these weans is their methods.  We will decrease her PEEP until her lungs start to collapse, then we will know how high her PEEP needs to be.  We will decrease her diuretics until her lungs start to fill up with fluid, then we will know exactly how much diuretic she actually needs.  Isn’t that kinda like asking the question: How close can I put my hand to the fire before I get burned? Answer:  I’ll move my hand closer and closer to the fire until I have a burn and then I’ll know exactly how close I can get to the fire.  I wish there were ways to figure this out without putting her at risk.  The good thing is these are the last few questions before going home.  Yeah!  They have to find her new baseline.  Not an easy task.

Her pulmonologist says that she is doing so well that trach trials aren’t far away – I think the doctors need to talk to each other more.  But I am glad that she is doing so well. 

Bella had PT and OT today.  We are already starting to see some improvements from the daily PT.  One of her goals 2 weeks ago was: Hold head in midline for 10 seconds with minimal support.  That was passed off today! 

I meet the medical director of the home health agency we will be using.  As well as the RTs for the new medical supply company we will be using.  Someone asked me the other day if I just sit here all day, bored.  That would be a “No!”  There is always something going on. 

Fun pictures of Bella today:

 

No Clothes

What a busy afternoon!  Arabella heard that her friend, Jaxson, was eating at 10 cc’s an hour and decided her 22 was way too fast.  So she stopped processing any food.  Her doctors decided to hold her feeds for a while and re-check.  Nope, she was still not interested in eating, so they continued for another hour of no food.  Her stomach contents finally started to go down in volume and she was re-started at 10 cc’s an hour.  Imitation is the highest form of flattery.  Here’s to you, Jaxson.  Hang in there little guy!

Back in our naked ICU days, I said once that Bella was not going to be used to clothes when she finally escaped this place and was allowed to  look like a human again.  I should watch what I say.  Bella does not like clothes.  She gets too hot.  She has had a temp of 99.8 all day.  Finally the nurse suggested we strip our girl and miracously 98.6.  Ugh!  This will be fun.  You can only run around in a diaper for so many years, then we’ll have some modesty issues to deal with.  :)

Our new medical supply company, that is IN NETWORK, came and meet me today.  We ordered way too much stuff.  I hope I have room for everything!  I completed my first vent training class.  He was amazed that I knew what volume support, i-time, and pressure support are.  We’ve been here a day or two.

And what was Jessi doing while I was training?  Sleeping on the window ledge.  :)

Clothes

Today I decided she could wear clothes.  I looked through her dresser and found something with snaps for all the wires and tubes.  I think she looks wonderful!  It was the hit of rounds.  :)

The doctor is playing with her diuretics again.  Hopefully we will find a couple that everyone will like.  Her potassium is low and she was positive over 200.  Her weight is down to 5.08 kilos, but she was NPO (just IV fluids and meds) for half the day – for 2 days in a row.  The doctor reiterated to me that she needs to gain weight.  They have her up to 110 calories with the 30 KCal formula and the extra protein and the extra oil.  It’ll come with time.

And I found out yesterday that Apria, the medical supply company we have been using, isn’t in network.  Oops!  So I have a hefty bill for that feeding pump, pulse ox, and oxygen tanks that have been sitting in my house since April not being used.  Oh well – teach me to ask more questions!

 

Jessi holding Bella

 

 

 

 

Jessi and Bella snuggling

Wednesday

This morning I meet with the account manager of a home health agency.  Next step is to meet the medical director.  All steps in the journey homeward.

Bella had the ABR hearing test done today.  She needed to be sedated for this.  Good luck!  You can tell when an Attending doesn’t know your daughter well when he says, just order a second dose to have at the bedside if you need it.  After 2 does of sedation, she got through the first part of the test and woke up.  So then they tried to figure out what else they could give her to keep her still for another hour.  Not easy with Bella.   She is so used to sedation that she requires so much more than normal.  So far the results are: right ear is fine.  Left ear is showing some abnormalities.  That’s why it’s so important we do this 2nd test.  Is there really a hearing loss in the left ear or not?  I knew that Lasix could effect hearing, but I didn’t realize that the Gentamicin could cause hearing loss.  The audiologist made it clear that she doesn’t necessarily have any hearing loss, but that her screening is abnormal on the left side and we need to take a closer look.  After almost three hours, the Audiologist suggested we re-schedule.  We’ll either have to have the attending here or have anesthesiology come and help.  Where are my anesthesiology fellows when I need them?  :)  Bella got so mad when she felt the first effects of the sedation.  It took me almost a half hour to calm her down after everyone left.  Now she’ll probably sleep the afternoon away.  :)

Bella before the sedation wore off

I was reading through the audiologist’s referring documents and was sad to see the long list of diagnoses.  One I hadn’t seen before was: Respiratory Distress with Impending Failure.  Ouch.  I am so grateful Bella is a fighter.

Tuesday

Like Joy, Bella uses her feet like hands.  Here she is kicking her ladybug.  I wish she would use her hands and reach for toys, but that’ll come.   Her OT teased she’ll probably go to school writing with her feet so her fingers are free to suck  on.  :)  As you can hear, Lizzy is here with me today!  :)

 

Our current doctor has a background in nutrition.  So to him the most important thing is that she gets good nutrition.  He wants her to gain weight before he messes too much with the vent settings.  The lower the vent settings, the more she has to work, so the more calories she has to expend.   (Current weight 5.2 kg, weight on April  9th 5.2 kg)  There is truth to what he says, but I really wish there was more consistency in the plan.  Oh well.  He has increased her volume and added more protein and oil.  He did say she could go down to a PEEP of 9 and a rate of 26.  He told me that is it for the week for vent changes.  We’ll see.  I’m sure Bella will show us the way if we will just listen to her.

 

Lizzy reading

 

 

 

 

The three of us

The pulmonologist that specializes in pulmonary hypertension stopped by.  He said that a reasonable goal would be to decannalize (remove the trach) next summer!  Wahoo!