Not again Brida!

Brida has made it very clear that she doesn't like her feeding tube.  Last night as we were getting her ready for bed she pulled out her NJ tube for the second time.  Erin and I called the on-call high-risk nurse to see if she can call in the orders to the ER for a new tube placement.  She wasn't able to get the orders in after hours, but she directed us to the more local branch of the hospital in Riverton and said the ER department can write the orders and have it placed.  This was to save us time from having to drive the extra 20 minutes to Primary Children's in SLC.

We drove over to the Riverton Hospital and they registered us and checked us in.  After waiting 10 minutes, a nurse called us in and checked her vital signs, took her weight, and checked her out.  We were then escorted to another room where we waited another 5-10 minutes until a doctor came in to talk to us.  He then informed us that they couldn't help us there because their radiology staff left for the day.  After waiting another 10 minutes for release papers, we were on our way to Primary Children's ER.  I was a bit frustrated at this point since there were several opportunities in the communication chain where they could have told us they couldn't help us and limit how much time we wasted there.

At Primary Children's, they checked us in pretty quickly and we were able to head directly to radiology.  While we were waiting for the radiologist, I talked to the rad. tech about C-arms (the type of x-ray medical equipment my workplace develops).  I learned some things about their product preferences.

Brida had a tough time with this new tube placement.  The Radiologist had some difficulty getting the tip of the catheter in the jejunum, so it took longer than the other placements.  The whole process took about 20 minutes.  For some reason, the radiologist decided to put in a smaller catheter than the previous tube (from 8 Fr to 5 Fr*).

We eventually made it home around midnight.  Brida was wide-awake when we got home, but she eventually went to sleep and slept through the night.

Brida also had her first pediatrician appointment on Monday.  That went well.  She continues to gain weight every day:

   7/19: 3.77 kg
   7/20: 3.775 kg
   7/21: 3.79 kg
   7/22: 3.845 kg
   7/23: 3.935 kg
   7/24: 4.030 kg

(*Note: Fr stands for French units.  It is the standard unit for catheter diameter measurements.  1 Fr = 1/3mm.)

Thank You Kristin, Tami, Debbie, Laura, and Stacey

Thank you Kristin for the Chicken Taco Soup on Tuesday.  We've never had this before.  I wouldn't think of having tacos and soup in the same recipe, but it was quite good.

Thank you Tami for the Thai food on Wednesday.  This meal hit the spot for us adults.

Thank you Debbie for the Chicken Pot Pie and Peach Cobbler on Thursday.  If you are reading this, please pass on the recipe for the pie.  Erin has her own recipe that is a favorite of mine, but Erin wants to try your's because of the great crust.  

Thank you Laura for the Chicken Alfredo, salad, and cookies on Friday.  Every one in the family liked this meal.  The kids asked for seconds.

Thank you Stacey for the pizza, salad, and ice cream on Saturday.  The pizza was great.   My in-laws said it was "outstanding"

First Cardiologist Appointment and Second Swallow Study

Brida had her cardiologist appointment and swallow test on Friday.  Her cardiologist said she was looking good and her weight gain is "on track".  She had an ECG done and everything looked good there as well.  Brida did not appreciate all the wires though:

Brida failed her swallow study.  She was able to drink more than during her first study, but she eventually aspirated silently.  This means she will need to keep her N-J tube in until her next study on 8/3.

Earlier in the week, Brida had her first bath at home.  We had to take a picture for her future embarrassment:

We allowed Maggie to hold her sister for the first time this week.  The only problem with this was that she didn't want to let her go.  We will think twice before we do this again :-).

Brida went to church for the first time this morning.  She slept during the whole Mass.  Some friends from church got to meet Brida.  The unanimous opinion is that she is adorable.  This week Brida will be meeting with her pediatrician for her first check-up.

New Feeding Tube

Yesterday, Brida decided that she no longer wanted a tube down her nose, so she pulled it out.  She then took a car ride back to the hospital ER to have a new one put in.  Earlier in the day she was visited by her nurse who checked her out.  He said she was doing well and her heart sounded good.

Today she was visited at home by a speech therapist, who worked with Brida to get her ready for another swallow study at the hospital on Friday.  She said Brida is doing well and creating good pressure to swallow.

Brida is making good progress with her weight.  I am not convinced that today's measurement was accurate since it shows a whopping 140g increase in weight from yesterday, but we will know for sure tomorrow.

   7/16: 3.59 kg
   7/17: 3.62 kg
   7/18: 3.76 kg

Thank You Laurel, Karen, Cara, Carol, Callie, and Mike

Thank you Laurel for the Chicken Tetrazzini last Monday.  We all loved it.

Thank you Karen for the chicken wings and potato salad.  The celery and ranch dressing was a nice touch.

Thank you Cara for the Burritos and macaroni & cheese.  These have lasted us dinner and several lunches.

Thank you Carol for the lasagna.  I have also had this for several lunches and it tastes great.

Thank you Callie for the shepherd's pie, bread, and brownies tonight.  You picked out some favorites for each of us.

Thank you Mike and your son for mowing our lawn this weekend.  You guys went above and beyond by doing the edging and even doing two perpendicular passes with the mower.

First Weekend Home

Brida had a good first weekend home.  She gained a total of  90 g through Sunday, but she isn't very consistent with her weight gains.  Her weight measurements are below:
  7/14: 3.50 kg*
  7/15: 3.59 kg
  7/16: 3.59 kg
  * There was a +10 g difference between the hospital's scale and our home scale, so there was no weight gain between Friday and Saturday.

Brida has been doing a lot of sleeping and hasn't had any notable health issues.  Her O2 sat. levels have been between 75-90%.  Thankfully, she has been sleeping through the night for Erin and Sam, unfortunately Maggie didn't receive the same memo (she decided to wake and stay up at 4AM this morning).

7/13/12: +70 g...Time to Go Home!

Brida gained an impressive 70 g the past day.

  7/10: 3.43 kg 
  7/11: 3.41 kg
  7/12: 3.42 kg
  7/13: 3.49 kg


When Erin got to the hospital today, Brida's nurse notified her that they plan to discharge Brida today because of her good progress over the last day.  Erin was given the remainder of her trainings, including instructions on how to use the feeding pump and accessories.  


At around 5pm Erin and Sam started packing Brida's stuff up and got her in an outfit for the ride home.

Brida had an uneventful ride home.  Her sisters were very excited to have Brida home.  The nurse arrived at the house at the same time as Brida, so her sisters couldn't spend much time with her before they had to go to bed.


Welcome home Brida!

7/12/12: +10 g

Brida gained 10 g on Thursday.  No other significant updates for Thursday.

Deja Vu

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg 
  7/9: 3.41 kg 
  7/10: 3.43 kg
  7/11: 3.41 kg


Brida has decided that she likes the number 3.41 because her weight keeps going back to it.  The nurses bumped her calories back up to 27 kcal today to see if she can tolerate it now.


We got her kidney ultrasound results back today.  It looked like she has a mild constriction in one of her calices (tubes exiting out of the kidneys).  This could ultimately lead to an infection, so they decided to run another test in the cath lab.  Brida hated this and is starting to not like the radiologist so much.  The cath lab test confirmed the ultrasound results.  The conclusion is that they may have to put her on antibiotics at some point, but she should be OK for now.  The constriction may resolve itself in a year's time.  

Weight Gain

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg 
  7/9: 3.41 kg
  7/10: 3.43 kg


Brida gained 20 g in the last day.  We are hoping that this means she is back on track.  If she keeps it up, she may be able to come home by end of the week.  She hasn't had any spit-up episodes today either.  She has slept for most of the day.  They have zeroed in on 24 k-cal formula/milk at a flow rate of 21cc/hr. They will keep this steady as long as she continues to gain weight.


Brida had an ultrasound of her kidneys today to make sure they are functioning properly.  Results are expected tomorrow.  


Erin spent her afternoon with Brida.  Sam went back to work.  Sam and Erin visited her for a couple of hours after work.  Other than that, no more updates to report for today.

Still Trending Lower

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg
  7/9: 3.41 kg


As can be seen above, Brida's weight continues to trend lower.  We are now playing the waiting game as the nurses try to figure out her feeding schedule and calories.  She only spit up once for us today, which is a significant improvement over yesterday.


Here is a video from today when she had hiccups:

Additional Updates:

• Yesterday they took out Brida's last IV.  It got clogged and they decided that they don't need it any more since all the meds she is on can be given through the NJ tube.
• For the first time since surgery, they were able to drop her O2 flow rate.  This morning they dropped it from 0.12L/min to 0.06 L/min.  Then around noon they dropped it again to 0.03 L/min and she is maintaining her oxygen sat. levels around 85-90%.

6:00 PM Update:

• At around 4:00 they turned off her oxygen completely and her O2 sat. has not changed.  This is a good sign that she may not need oxygen when we get home.

Lost Weight Again

Brida lost weight again from yesterday to today.  This resets the clock from when she can be scheduled to come home.   The nurses are struggling to balance the volume of fluid and calories so as to help her gain weight, but not so much as to overburden her heart with additional demand.  Over the last three days she has lost about 40 g a day (she should be gaining 20-30 a day):

  7/6: 3.52 kg
  7/7: 3.48 kg
  7/8: 3.44 kg

They made another adjustment to her calories today and we should find out tomorrow if it has helped or not.  Her stools have also increased in frequency.  The nurses think it may be too much, which explains the weight loss.  She has also continued to spit up (emesis).  The spit-up wasn't as frequent or large as yesterday though, so we are hoping this is a positive sign.

Other than these two issues, Brida is doing well and is healthy for her condition.  She is also staying awake for longer and longer periods of time each day (30-60 minutes each time).

Today Brida was visited by her family, including her grandparents.  Her sisters are looking forward to having Brida at home.  They have been fighting over who gets to hold Brida first.

Thank You Natalie, Amy, Kristin, Lisa, Michelle, Julie & Sean, and Katy

Thank you Natalie for mowing our lawn last Saturday.  You can mow a lawn as fast as any guy I know!

Thank you Amy for the two meals this past week.  The pizza is the kid's favorite and tonight's lasagna and desert bread were also great.  What kind of bread is it?  I think it is carrot cake/bread, but Erin thinks it may not be.  It tasted great...can you pass on the recipe?

Thank you Kristin for the Asian Chicken Salad and cupcakes on Monday.  Erin and I brought leftovers with us to the hospital on Tuesday and it was a great lunch for us.

Thank you Lisa for the Beef Enchiladas and Quinoa on Tuesday. I've only had Quinoa once before (prepared differently) and this recipe tasted great.

Thank you Michelle for the Ribs, Potatoes, Macaroni & Cheese, and Cupcakes on Wednesday.  This was my favorite meal of the week.  Everything was full of flavor and was prepared like it was from a skilled chef.  You should consider starting a catering business.

Thank you Julie and Sean for the taquitos, bean salad, and cake on Thursday.  This was another great meal.  I loved the taquitos and Erin especially commented on how good the cake was.

Thank you Katy for meat and pasta dish, salad, and desert last night.  Erin and I brought leftovers with us to the hospital today and it tasted just as great as last night.

Thank you all for putting in all the effort to help us out during this challenging time for our family.  We know it isn't easy taking extra time out of your schedule to plan and prepare an extra meal (or mow an extra lawn), but it really has helped us and our in-laws make this a less strenuous time for our girls.  You have enabled us to spend more time with them (especially Brida) and less time thinking about and preparing lunch and dinner.  You are an answer to many prayers!

Slight Setback

Brida lost weight from yesterday to today, so her discharge has been delayed.  The earliest she will be discharged now is on Monday assuming she gains weight the next couple of days, but we are guessing it will most likely be Tuesday.  They also delayed the delivery of equipment to our house.

The nurses increased the calories in her feedings today to try to increase her weight.  She has started to spit up stomach fluids (twice when we were there today).  The nurses are tracking this, but we are told there isn't much we can do about it.  There is concern that if this continues she could aspirate these fluids, but they are taking an x-ray daily to look for fluid in the lungs.

No pictures today.  We forgot our cameras at home :-(

Discharge Delayed

Brida's discharge from the hospital has been delayed by 1-2 days.  They want to make sure she is gaining weight before she leaves.  She gained weight the last couple of days, but the staff wants to confirm the trend before releasing her.  They tell us she can be released as early as tomorrow, but possibly Sunday.

The discharge nurse has started the home health process.  We should be getting all her equipment delivered tomorrow.  The equipment and disposables will include:

• Oxygen tanks (portable)
• Pump for feeding tube and accessories.
• Pulse Oximeter
• Medications

A nurse should arrive at our house shortly after we do so that her feedings are not delayed.  The nurse will train us on using the equipment and make sure Brida is still doing well after the trip home.

Brida hasn't had any pain medications today.  She has been a little more ornery, but handling it well.  Other that that, there are no new updates on Brida's health.

Brida was visited by her parents and big sister Rosemary today.  Rosemary was given a special doll by the Child Life Specialists here for her to practice playing doctor.  She really liked giving it play injections and checking its blood pressure while wearing her face mask.

Getting Ready to Go Home

There is not much to report out today.  In celebration for the 1-week anniversary of her first surgery, Brida rested most of the day.  She didn't have any oxycodone and is doing OK with just Tylenol.  They do still have her on Zantac (as antacid for stomach) and Lasix (as diuretic to control liquids).  She will continue to be on these, Tylenol, and aspirin when she comes home.

In preparing Brida for the trip home tomorrow, the nurses had us do a car seat test to make sure she can tolerate sitting in a car seat for 30 minutes without affecting her vital signs.  She did well and slept most of the time.  The hardest part was getting her in and out (she didn't like that so much).  She also needed to have a shirt on for her comfort, so her first shirt was a baby hospital gown:

Tomorrow is another big milestone for Brida.  Erin and Sam are trying to get everything ready for her at home.  We are a bit behind the ball on this since we didn't expect her to come home a week after surgery.

Friday Discharge?

We heard today that Brida may be discharged this Friday if all continues to go well.  Erin and I are still trying to adjust to this thought. Today the nurses started to "train" us on caring for Brida.  The nurse reviewed how to use the feeding tube and how to administer medications and feedings.  The nurse also gave us a rundown of what to expect for the next couple of weeks.  We should be getting a call from "home care" people to schedule a time for them to setup our house with oxygen and the other equipment.

There has been no change in Brida's condition to report.  They are trying to wean her off of oxycodone, but she hasn't liked that so much...I probably wouldn't like it much either.  She is currently on 0.12 L/min of oxygen and they keep trying to bump her down a couple times a day, but her oxygen sat numbers drop each time, so they haven't been able to go lower.

Brida had a good visit from her sisters and grandparents today.  She was able to be held by her sisters for the first time.

Brida says Happy 4th of July! 

Discharge from CICU and Cath. Lab Trip Reports

Brida started her day with a visit from the speech therapist to check her drinking functions.  She has good sucking response, but the therapist wanted to do a swallow study under fluoro to see if she is aspirating any fluids (getting fluid into her lungs).  At the same time that Brida was scheduled for the swallow study at the cath. lab, the post-surgical floor found her a bed and they started discharging her from the CICU.

The radiologist (Dr. Hedlund) allowed Sam to join Brida in the Cath. Lab.

I told the radiologist that I work for GE Healthcare, but that I wouldn't hold it against him that he was using a Phillips machine.  Brida didn't mind this first trip.  She had a good helping of barium.  The results of the test were mixed.  She swallowed well, but after drinking for 20-30 seconds she fatigued and aspirated into her lungs a little. It was a "quiet" aspiration, which means she didn't cough when it happened.

After the swallow test, we went directly to her new room in the post-surgical floor.  The doctor visited and, as a result of the swallow test, decided to change out her NG Tube for a NJ Tube.  The only difference is that the NG ends at the stomach and NJ goes into her intestines.  The NJ will be better for her because she will be less likely to spit up and aspirate into her lungs.  Aspiration  would not be good for her since it can cause pneumonia and a much longer hospital stay.  The downside of the NJ tube is that she won't get any food in her stomach and will always feel hungry. Because of the aspiration, Brida will not be able to drink from a bottle until she increases in strength and has a second swallow test in 2-3 weeks.

Coming up to the floor, I also ran into Deacon Dale.  He came to visit after getting a little lost since Brida was in the process of being relocated.  Deacon visited us for a while and gave Brida a blessing before he left.

Brida enjoying her new room.

After hanging out in her room and being held by her dad, Brida was called down to the Cath Lab for the second time to have the NJ tube put in.  Both Sam and Erin joined Brida for this trip.

Brida did not like this trip at all.  They had to hold her down while the catheter was being placed.  She calmed down afterwards.

You can see the final catheter placement in the image above.


Room with a View and Alpine Fire:
Brida's new room has a pretty good view.  In the second picture you can see smoke from a big fire that is raging in Alpine (just SE of Draper).

Alpine "Quail" Fire

As a side note, does anyone know why they are calling this a "Quail Fire"?

Trip Report:

Laurent, FYI, I am totally using this as a working day and this post is serving as my two trip reports to the cath. lab.

RA Lines Out

They took Brida's RA lines (catheters to heart) out this morning.  We were able to hold her for the first time since the surgery on Thursday.  They had to give her another dose of morphine for removing the lines, so she was sleepy until the afternoon.  Once she woke up, she was looking around a lot.  Brida is digesting milk given through the feeding tube well.  Since the RA lines are out, she will not be able to receive TPN nutrients anymore. She will get all her nutrients from milk, and some occasional glucose through the IV when needed.

The nurses also notified us that Brida is now doing well enough that they expect her to be released to the post-surgical floor tomorrow.  The post-surgical floor will have l:3 nurse to patient ratio (compared with a 1:1 or 1:2 ratio in the PICU/CICU), but Brida will have a private room with a guest bed.

Before being released to the post-surgical floor, the Speech therapist will work with Brida on drinking.  They will probably do a swallow test using a radiolucent die under fluoro (live x-ray, hopefully using a GE/OEC C-arm :-) ) to check that her anatomy is swallowing properly.

Below is a video from today of Brida awake and looking around while being held by her dad:

Started Feedings

Brida started drinking again from a bottle today.  She didn't drink much.  They started her on 10 ml and they are increasing each feeding by 3 ml every 3 hours.  She drank 8 ml in the first feeding, 1 ml in the second, and 1 ml in the third. What she doesn't drink, they are giving her through a feeding tube (g-tube) which was placed this morning.  She seems to have the sucking down, but  she hasn't perfected the swallowing part.  They plan to have a speech therapist, who, as strange as it sounds, has the skills to help, work with Brida tomorrow on drinking.

Her swelling continues to get better.  Tonight they are stopping the morphine and switching over to oxycodone now that she is feeding.  Oxy is better in that it lasts longer with less side-effects, but it needs to be given with food since it can damage empty stomachs.  She is awake more often for longer durations each time (see video below).

They also took off the cerebral and renal oximeters today. If the feedings continue and she starts eating regularly, they hope to take the RA/PICC lines out tomorrow and then she can be held.

Sunday Summary:
We went to church this morning, had lunch, then we all (mom, dad, sisters, and grandparents) drove up to the hospital (in two separate cars).  Maggie fell asleep in the car, so Erin stayed with Maggie while Sam brought Rosemary and Mairead to see Brida.  The girls enjoyed their time with their sister (see video below).  They asked lots of questions and seemed to be good with the answers Sam was providing.  They also gave some interesting responses to questions Sam asked them (you have to see it in the video).

Sam then brought Rosemary, Mairead, and Maggie upstairs to play in the play room while Erin visited Brida with the grandparents.

Quote of the Day:
Dad: "Mairead, what do you think of Brida?  Do you like her?"
Mairead: "I like to touch her ear."
Dad: "Oh yeah? What do you like about her ear?"
Mairead: "It's a little bit feel moist."