Focus

Yesterday's readings at mass were particularly moving.  I had debated whether or not to go, since I would have to take both Samantha and Josh, but I felt moved and the timing worked out for us to be there on time.  So, I packed everyone up and off we went.  

The readings were:  Acts 14: 21-27, Revelations 21: 1-5A, and John 13: 31-33A, 34-35.

As you might imagine, it can be easy to lose focus at times as Alli's stay in the hospital grows longer.  Her condition bounces back and forth.  We have a newborn and Samatha at home.  Not to mention just the ordinary life challenges that come up from time to time.  Yesterday was a time at mass to regain focus.

The Acts of the Apostles covers the time after Jesus died until Pentecost, when He leaves the apostles for good and assumes His position in Heaven.  You might imagine that these guys were a little panicked, as they were left to continue the work Jesus had started and build his church, which would ultimately become the Catholic church.  The same work that ultimately led to His demise.  So in the reading yesterday it says..."It is necessary for us to undergo many hardships to enter the kingdom of God."  Paul and Barnabas proclaimed this to the other apostles as a means of encouraging them to stick with their work of conversion and church building, as the reward in the end, to enter the Kingdom, would be well worth their sacrifice.

Then the reading from Revelation.  Revelation which I have often viewed as the scary chapter of the bible, until recently, paints the picture of what the Kingdom of Heaven looks like.  The reading yesterday says..."Behold, God's dwelling with the human race.  He will dwell with them and they will be his people and God himself will always be with them as their God.  He will wipe every tear from their eyes and there shall be no more death or mourning, wailing or pain, for the old order has passed away."

Finally, the reading from John, which takes place after Judas departs from them.  Jesus commands the disciples to love one another.  That is how they will be known as His disciples.

So, how did this help me?  Well, following the logic, from my perspective, it says - Ok, Megan, you are on this Earth and you and Jason have been tasked with some immeasurable responsibilities and they have, at times, brought great pain and caused great suffering.  Greater than you ever imagined you both could endure.  But, hang in there.  The reward is great.  It is all about getting to the next chapter and being in a place that is truly paradise, without pain, suffering, death, and mourning.  So, stick with Me, and while you're handling these unfathomable challenges, make sure you love each other and those around you.  I will know you are doing my work if you lovingly take care of each other, as I care for you always, and your reward will be great.  

So for all of the times I have sat in church, somewhat directionless, yesterday was a time of renewal - and Samantha managed to be pretty well behaved - doubly rewarded!

We ended last week with some challenges.  Alli was reintubated and put back on the ventilator on Friday morning.  They are now going to perform the series of tests they had hoped to perform when we were admitted back in February.  Since Friday, she has had a 24 hour pH probe to test for reflux, a bronchoscopy to examine the condition of her lungs, and an MRI of her brain to check for any potential impact from the hematoma and resulting procedures.  In the next couple of days she will have a cardiac catheterization to look at her heart function.  At the conclusion of this, we will have a meeting with each of her specialists to discuss where she is medically and how each of these systems impacts her condition.  As of right now, the most compelling result was yielded from the bronchoscopy, which showed her airway collapsing immediately when the pressure support from the ventilator was removed.  Her tone is such that she is not able to keep her airways open without additional support.

So, we are hanging in there with her and comforting her as best we can through these many tests.  Please pray for her and us.  

Status Update

Yesterday marked 2 months in the hospital for Alli.  Unbelievable.  Today is the first time in a long time that I have spent an afternoon alone with Alli.  Jason had some meetings at work, so he gets to take some time away from the hospital, which is a good thing.  It just so happens that today has been a more challenging day for her.  They are watching her like a hawk.  She is back on the full face bi pap mask today.  We are hoping to avoid having to reintubate her.  Outside of that, Alli has been making great progress with her bedside PT and OT.  She obviously isn't able to go to rehab until her oxygen is stable, but we are trying to get her as prepared as possible while she is still here in ICU.  Since starting with the PT and OT she has started to bring her hands back to midline, she is rubbing her eyes and trying to put her hands in her mouth, she is trying to roll on her side, and she is slowly building core strength and working on head control.  So, we are hopeful that the more we accomplish at the bedside here that maybe we can knock off some of the early milestones from inpatient rehab.  She visited with the speech therapist yesterday and they worked on some oral motor skills to give her some positive stimulation around her mouth.

Joshua celebrated his 6 week birthday on Friday.  He continues to do well.  He is bringing his hands to his mouth and no longer appreciates the tight swaddle.  He likes to move his arms a good bit and keep them up by his face while he is sleeping.  His sleeping has been a little off and on, but I attribute that to a little growth spurt.  

Samantha continues to keep us on our toes.  Yesterday she informed me that she was the queen of the household and that Meggie (her nanny) is the king.  We'll let her believe that for a little while, although Jason informed her that he was the king of everything at dinner last night.  She seemed ok with that.  She also informed me that she lives on the Planic Earth.  There must have been some discussion at school or at home regarding Earth day :)  She has become much more expressive about her feelings.  She tells me when she misses Alli and Jason and we talk about that for a little while.  Sunday night she came downstairs after I had put her to bed and told me she didn't like being upstairs alone, so Josh and I went upstairs and now I try to make sure I am upstairs more at night.  She also loves to sing showtunes.  We have reduced her tv time and increased her pandora radio time.  So, now I catch her singing Let's Go Fly a Kite and Do-Re-Mi around the house.  It is also a stitch to listen to her sing Supercalafragilisticexpealidocious around the house.  

So, for now, please continue to keep Alli in your prayers.  As of this afternoon she is starting to show some improvement and it would be great if we could avoid reintubating her.

Alli was Extubated!

Alli was extubated first thing this morning.  So far she is on bipap and doing well.  She is currently working with the physical and occupational therapists.

Everyone else is doing well.  Hopefully we are continuing on the very long road to recovery!

Update

Alli has had a quiet weekend.  The cultures they drew on Friday show no growth so far.  There is a possibility that whatever she had/has we caught in the early stages and the antibiotics have taken effect. She hasn't spiked a fever since Friday.

Jason and I took SJ and Josh out to dinner last night.  Then, I was able to go back to the hospital.  As a special reward, Josh managed to sleep from 8:00 until 3:30 am.  Amazing!  I think Jason might be a new person :)

Will report more when I have more information.

Back at Square One...

It was not a good night for Alli.  When Jason went back to the hospital after dinner she had a new nurse and a new respiratory therapist.  Neither of them has worked with Alli since she was admitted back in February.  Under ordinary circumstances we struggle with this because they not only have to develop chemistry with us, but they have to develop chemistry with Alli and get caught up on her extraordinarily complicated situation.  In the midst of that, she was continuing to have oxygen desaturations that were seemingly unexplained.  She also had an increase in her heart rate.  Before Jason left they had her back on the bipap mask.  Around 1:30 in the morning they called to let us know that they needed to increase the settings.  In the meantime, they drew more labs, got a chest x-ray (I'm surprised she isn't glowing in the dark by now), and performed an echo to make sure they didn't miss anything on the one performed earlier in the week.  They also let Jason know that if the situation didn't improve, they would likely have to reintubate her.  At 5:30 this morning, they called to say that they had intubated her.  She wasn't responding to the increased bipap settings.  Since then she has started to run a high fever.  Their current operating hypothesis is that she has an infection.  They have already sent off blood cultures.  They are going to get a urine culture.  They also sent off a respiratory panel to rule out a potential respiratory virus.  There is the potential for infection from her PICC line (which has been in for over a month).    They are currently treating her with a broad spectrum antibiotic.  Once they know the origin of the infection then they will be able to tailor the antibiotic to the specific bacteria (assuming this is bacterial in nature).  It will take at least a day for the cultures to grow.  So, we'll just have to be patient in the meantime.  We will keep you posted as we know more information.  Please say some extra prayers for her today.  She has really been through a lot (that might be the understatement of the century).  We know she can fight this - as she has proven so many times before that she can get through these setbacks - but we are understandably concerned about the toll this is taking on her.

More to come...

Rehab

Ok - we will let you know when we actually get to rehab.  Alli's oxygen has been a little unstable yesterday and today, so we are going to postpone until she is straightened out.  Hopefully will only take  a couple of days.  What a rollercoaster!

Rehab Postponed

We did not make it to rehab today. Hopefully will go tomorrow morning.

New Beginnings

Yesterday marked a new beginning.  My mom and dad packed up and headed back to Michigan.  We are officially on our own with our family of five.  My parents couldn't have left us with a more solid foundation.  They were so amazing - everything they did - helping us keep up the house, keeping Jason company at the hospital, making meals, entertaining Samantha, soothing Josh so I could get some extra sleep, what seems like hundreds of loads of laundry, grocery shopping, errand running.  Really, we couldn't ask for anything more.  It was so sad to see them go.  They have been here through some pivotal points of this experience.  I wish they could be here all the time.  Actually, I wish we could be around all of our family all of the time.  It is increasingly difficult to be so far away from family (mine and Jason's).  Regardless of Alli's situation, it would be nice to be able to attend regular family get togethers, in addition to the baptisms, weddings, graduations, and other major life events.  I digress.

Today marks another new beginning.  Alli will be leaving the CICU and heading to inpatient rehab at Scottish Rite.  This is amazing.  She has already had some bedside PT and OT and we are seeing great progress from that.  We are so anxious to see what she will accomplish with focused therapy every day.  Since my last update they have weaned her off of bipap during the day to the high flow nasal canula.  Yesterday they were able to take her down to the regular nasal canula.  She is still on bipap at night to give her lungs some extra support.  This combination seems to be working well for her.  They will continue to wean the settings while she is in therapy.  I am hoping they are able to wean her off of the bipap before she comes home.  She should be moving some time this afternoon.

Josh is doing well.  He had his 1 month appointment on Monday.  He weighed in at 9 lbs. 5 oz. and 22.25 inches long.  The great news is that I no longer have to wake him up at night to eat!  He is sleeping a solid 4-5 hour stretch at night - which is glorious!  He is making good eye contact and starting to track.  I noticed yesterday that he followed me with his eyes a few times.  He is building good head control and bears down weight when his feet touch a surface (I'm pretty sure this is still reflexive, but good nonetheless!)  He is getting some tummy time during the day.  He doesn't seem to mind this, especially if he snuggles in for a short nap.  He has some great smiley moments and is making some sweet cooing sounds periodically.  All in all, he is doing great!

Allergy season has hit Samantha (or a spring time cold - but I think/hope it is allergies).  As soon as the pollen hit over the weekend she started with a runny nose.  I have enjoyed spending more time with her since I have been home with the baby.  She does a LOT of talking these days.  She is interested in knowing everyone's name, their parent's names, their ages, etc.  On the way to school this morning she told me about our house being built out of brick, similar to someone else's house, and different than her nanny Megan's house, which is green.  She likes to talk about almost anything - except what she did at school during the day.  She used to come home and report back about 1 or 2 activities.  Now she tells me she did nothing.  I know this isn't the case, and eventually she warms up and tells me something about her time at school.

Our nanny, Megan, is getting married this weekend, so we will have a new nanny working with Samantha and Josh while she is away.  Nicole is coming to us from our good friends, Tracey and Victor.  We are excited for her to be here and to have some back up for Megan.

Ok - we will have more reports from rehab!  Thanks for hanging in there with us!  We really appreciate all of the kind things people have done to help us out, especially the meals, gifts/hand me downs for Josh, and certainly the prayers.  We couldn't keep this up without you!

This picture is from yesterday - it is the first time she has been dressed in 6 weeks!