Update March 10, 2013

Let's see, where did we leave off?  The birth of Joshua Grant.  Jason and I made a quick trip to Egleston on Friday morning to participate in rounds with Alli's care team in the CICU.  Once we finished, we headed over to Piedmont to welcome our new bundle of joy in to the world.  Joshua was born via c-section at 12:25 pm.  He weighed 7 lbs 15 oz and was 20.5 inches long.  As is sometimes the case with c-section births Joshua took a big gulp of amniotic fluid on his way out and needed some time to clear it out of his lungs.  So, he spent some time hanging out in the transitional nursery until he was able to clear it out and breathe more normally.  He has been in the room with me ever since.  We have been doing a lot of sleeping and eating.  My mom has been staying with us at night and has been a great help in getting Joshua settled and back to sleep after nursing.  Samantha has been able to visit and hold Josh every day.  She corrects anyone who calls him by a name other than Joshua.  It is pretty cute. Below is a video of her holding him for the first time.

Alli has been well cared for at Egleston.  Jason has been going back and forth between the hospitals to spend time with me and Josh, as well as Alli.  Things took a turn for her today.  We had hoped she would be able to be extubated, however, they have been struggling to regulate her hemoglobin and hematocrit levels.  After trying a number of therapies they did a CT Scan today and found a hematoma in her brain.  Jason called me to report the finding and to let me know that she needed surgery right away.  They took her back this afternoon and she made it through the surgery.  They were able to remove the clot as well as to cauterize some other areas in the brain that were bleeding.  The hematoma was likely caused by the heparin they gave her to help with the blood clot in her leg.  They will now be monitoring her in the PICU instead of the CICU.  She will be followed by the neurosurgeon and they will continue to consult with cardiology regarding the treatments she was receiving in the CICU.  The neurosurgeon feels confident that she could make a good recovery.  Please say some extra prayers for her over the coming days.  They removed a piece of her skull to help with the swelling.  It will be reattached once they feel confident that the swelling is no longer an issue.

Everyone else has been doing fine.  I am recovering from surgery.  3 surgeries in 3.5 years has definitely taken its toll and this one has been a little slower, but I am feeling stronger every day.  My mom and dad have been a huge help with Samantha and keeping things together at the house.  Linda went back to Miami today, before the situation with Alli arose.  It was so nice to have her here when Josh was born and she was able to spend some quality time with Samantha and Alli throughout the week.

We will keep you posted on Alli's status as it continues to evolve.  Thanks for all of the extra prayers and support!

Warm Snuggles

Today is a day that I have not looked forward to since we brought Alli back to the hospital.  On the one hand, I know she is in good hands with the doctors and nurses in the CICU.  On the other hand, I have been the constant in her medical care since she was born and it is difficult to relinquish that role to someone else, even for just a short period of time.  I actively participate in her care, even when she is in the hospital, and it makes me nervous to not be part of morning rounds and here to observe what goes on throughout the day, especially since this visit has been the most volatile.  Nonetheless,  I can't be in two places at once, and so we'll move forward and work together, and Jason will assume that role starting tomorrow.

This afternoon, our nurse and doctors agreed that I could spend some time holding Alli.  So, after her afternoon CPAP trial, the nurse and 2 respiratory therapists helped get Alli out of bed and she snuggled on my chest for almost 2 hours.  It was the one thing I wanted to make sure happened before I left her and it meant so much that they worked so hard to make it happen.  It was no small feat getting her in and out of bed with all of her various lines and tubes.  It was so peaceful sitting there with her while she slept on my shoulder.

In general, today was just an ok day for her.  She continues to progress through the CPAP trials, but they are having a hard time weaning her off of the dopamine (helps to regulate her blood pressure) and some of her other levels have been difficult to regulate.  She also spiked a fever tonight that they are trying to bring down with tylenol.  She also hasn't fully woken up.  She has moments of awake time and movement, but it is taking a long time for the sedative to work its way out of her system.

Earlier today I was able to spend some quality time with Samanatha.  It has been taking a long time for the CICU team to get through morning rounds, so after we finished up Alli's rounds, I went home to see what SJ was up to.  We read some books, did some puzzles, and had a lunch date at Panera (she - who am I kidding - we like the Macaroni and Cheese).  I was happy to have some alone time with her before the baby comes.

Our little guy arrives around noon tomorrow.  He has been snuggled, squished, and smothered by both of his sisters over the past 9 months.  I imagine he'll have a few things to say about it once he arrives.  Samantha has been talking to him periodically.  She calls him 'little man' and has introduced herself to him many times.  They have very sweet conversations.  She is so excited to meet him...as are the rest of us!  We are excited to introduce him to everyone tomorrow!

Goodnight!

Beads of Courage

Alli has been collecting beads since she was first admitted to the CICU at Egleston in November of 2011.  Each bead represents a medical challenge she has had to overcome, primarily cardiac related.  She has beads for everything from an overnight stay in the hospital to needle sticks to her open heart surgery.  As of yesterday she has earned over 300 beads primarily from her cardiac admissions.  That does not count her PICU stays.  When I get the chance, I will post a picture of her beads.  Sometimes I pass the time in her hospital room by arranging and rearranging them.  Someday they will help us tell her, and others, the story of what she has medically endured over the course of her life.

She continues to make steady progress.  Last night they did their first CPAP trial to determine how well her lungs function without the assistance of the ventilator.  She will continue to have these trials over the course of the next 24 hours.  The objective is two fold - 1. to restrengthen the lungs to be able to breathe on their own and 2. to determine her level of readiness for extubation. 

The physical therapist came by for a visit yesterday afternoon and is working with Alli on stretching and range of motion.  She will continue to make visits during our stay to help Alli get back on track from a PT perspective.

The plan for today is to remove her chest tube, continue CPAP trials, and adjust her formula to be less calorically dense, but maintain the same level of vitamins and minerals.

Slow and steady

Alli had a relatively uneventful day yesterday.  Jason's mom flew in from Miami and was able to visit with Alli for a brief period of time before she joined my parents at our house.  They turned off Alli's paralytic around noon yesterday.  By the time we left for dinner, around 6:00, she was starting to respond to stimulation.  We saw her feet move and she was starting to lightly grasp my finger when I put it in to her palm.  As her body continues to wake up we will see how she reacts.  It isn't uncommon for children, both consciously and subconsciously, to fight the ventilator.  If that happens, then there is an additional sedative they can give her to lessen the impact.  Ultimately she will need to demonstrate that she can breathe over the ventilator, so they have to be careful not to over medicate.  It is a delicate balance.  They made some additional progress on the ventilator settings yesterday and started to wean her off of the nitric oxide.  Her feeds continue to gradually increase by 5 mL per hour.  She is now receiving 20 mL per hour via her nj tube.  Yesterday's chest xray showed improvement of her pneumothorax, therefore they were able to start vest treatments every four hours to keep the secretions in her lungs loose.  Her right side continues to show some haziness.  They are monitoring that and making sure to suction what they can.  Otherwise, it may just be some atelectasis that needs to resolve.  Atelectasis can be caused by mucus plugs in the lungs.  The pulmonologist felt that there were likely some plugs deep in her lungs that he wasn't able to get with bronchoscopy.  So, continued respiratory therapy (vest treatments) should help to loosen that up so that the lung can more fully expand.  We hope to see these signs of improvement continue each day.  The process of weaning from the ventilator can be very complicated, therefore we expect there will be some setbacks along the way.  Her most recent lung and urine cultures show that her bacterial infections have cleared.  So, it is a matter of the rhinovirus settling down and letting her lungs heal as much as possible at this point.

Progress Continues...

Today was a good day for Alli.  Her sats have been in the 90's all day and her other vital signs have been more or less stable.  They were able to wean her epinephrine down to zero and are working on weaning her dopamine.  She is extraordinarily sensitive, so they have been up and down on the dopamine throughout the day.  They have started to adjust the settings down on her ventilator.  So far she is tolerating the changes well.  They started her on feeds today at 5 mL per hour and will slowly increase to eventually get her to 35 mL per hour.  Since they are feeding her directly in to the intestine they have to feed her at a much slower rate.  We are very encouraged by her progress to this point and are looking forward to seeing it continue through the night.

Good night!

Playing the odds

With great risk comes great reward.  Today we faced, by far, one of the most difficult decisions a parent will ever have to make.  Alli's condition has been progressively deteriorating over the course of the week.  Nothing has been working.  So, today they presented us with our final option, a bronchoscopy.  A bronchoscopy is basically a deep cleaning from the inside of her lungs.  They put a scope in her breathing tube that has suction attached to it and they insert it in to the lungs and attempt to break up secretions.  There was a good chance, based on Alli's status immediately prior to the procedure, that she wouldn't tolerate it and we would be out of options at that point.  We decided to move forward, as we wanted to buy her as much time as possible to get over her various viruses and infections, and it was becoming clear that there was little else they could do outside of this.  Fortunately, Alli got through the procedure, they were able to clean a good amount of secretions out of her lungs, and her vital signs have shown great improvement.  For right now she is back on the conventional ventilator and tolerating it better than she had been previously.  Hopefully this progress continues through the weekend.

My doctor appointment went well.  There are currently no signs of imminent labor.  So, it seems as though our little guy is staying put for the time being and will make his appearance as scheduled next Friday.  They have told us they can be flexible with timing if necessary.  Our doctor is on call all weekend, so he can do the c-section at any time.  For right now, we are sticking with our original plan.

Samantha's parent teacher conference went well.  She is described as a leader in her classroom and enjoys helping her classmates when appropriate.  She does various kinds of work throughout the day.  According to Miss Chandra, she enjoys the practical life activities in addition to the ones she tells us about - the pink tower, brown stair, and cylinder blocks.  They are working with her on tracing sandpaper letters and she has expressed an interest in learning how to tie.  So, they are working with her on the early steps of how to tie a bow.  All in all, a good report.

We'll continue to keep you updated on the latest as we are able.  Thank you for all of the prayers for Alli.  I am hopeful that she cleared a hurdle today and that we will keep moving forward.

Goodnight!

Staying the course...

That was the underlying message from morning rounds.  Alli had a relatively good night, which we were hoping would translate to a good day.  There was some discussion about transitioning her off of the current ventilator to an oscillating ventilator, but only if necessary.  We got the call late morning that they did make this transition.  The oscillating ventilator is gentler on the lungs, but requires her to be continuously paralyzed.  It is also not great for improving overall oxygen saturation in the blood, which is what we are starting to see now.  Her heart rate and blood pressure are good, but her oxygen saturation levels are low.  So, now they are debating putting her back on the original ventilator.  To be perfectly honest, the details behind how the ventilators work and the oxygenation process are somewhat confusing and hard to explain.  The moral of the story is that both methods can be effective in some ways and ineffective in others, which makes this a frustrating process when trying to achieve stability.  It appears as though her UTI is clearing up.  Given that, they now feel comfortable giving her IV steroids to help reduce inflammation in her lungs, which may also be contributing to her low oxygen levels. 

I have my last OB appointment tomorrow.  Hopefully it is as uneventful as our previous appointments.  I asked Jason today if he thought we should try to move the delivery date.  As you might imagine, it is unnerving to think about leaving Alli in this condition, not knowing when I will be able to get back in to see her.

We also have Samantha's parent teacher conference tomorrow.  It is our first opportunity to meet with Miss Chandra and we are looking forward to hearing her back fill some of the details of Samantha's time at school.  We hear a lot from Samantha about cylinder blocks, the pink tower, and the brown stair, but I suspect she is up to other things and I can't wait to hear all about it.

We will update more tomorrow.