Sick, little girls.

Ali and Meghan are both sick with a respiratory virus. Both are running fevers. Meghan 100.1 Ali 101.2. I haven't been to sleep yet and have a full day tomorrow. Tired and concerned for my girls. Lord, please keep your hand on my girls tonight. Guide our new night-shift nurse and help her to make good decisions (like waking Mom when Ali needs me) on Ali's behalf. I pray that you watch over Meghan too and help the Doctors to understand why she is complaining of back pain.  I give this all back to you and ask that you help me to trust You and get a few moments of sleep.

Amen.

Nothing is a mystery to Him

I have been contemplating the removal of Ali's trach since the day it was put in. Wishing it out. Praying it out. Begging in my mind for this stinkin' piece of plastic/rubber/whatever to be removed.  August is our target month (although the Dr. would like to shoot for June) yet it continues to move. Constantly moving.  =(

Some days, I feel very optimistic that Ali will be successfully decannulated. It seems once I FINALLY give in to the optimism, something else comes around the bend. First it was the "webbing" that was removed last June. Then, it was her illness and aspiration of fluids in November. Now... now she is on the cap (breathing thru her mouth and nose instead of the hole in her neck) and things were looking SO promising. Until Friday night.

I called Ali's Pulmonologist to relay some information that I had previously neglected to do. Our appointments are chalked full of info and I didn't make a list of things to talk about (ALWAYS, make the list).  So, I called his nurse on last Monday and explained how Ali will go from zero oxygen at night to up to 2 Liters the next night and that it vascilates from night to night (Currently, she is on a liter. Last night, nothing).  I have felt that there has been an issue with her airway. Some sort of an obstruction. She is very positional at night (pull her up in bed, support her head in a specific way and her sats go up) and although it does not always STOP her from needing oxygen, it can greatly decrease the amount that she needs.

I also mentioned to the nurse that two days in a row, around the same time, Ali was having an "episode" while wearing the cap, while in bed for rest time. Ali is always awake, happy, playing in bed (sometimes laughing hysterically). After 30 minutes of being in bed, she will finally settle down and lay back on the pillow. She is WIDE AWAKE and yet, she would sit up, scared and start to pull at the cap. She was crying and yet I could not actually hear the sound. This means that air is being constricted/not passing well.  It is all very confusing. It is also very late and I am super tired so my description is not that great. But trust me... it's scary as I realized she was not breathing very well. Strange thing though... Her sats were about 99% and her heart rate was about 110. All great numbers for Ali. But, the oximeter also is slow to pick up when Ali "codes". You can only trust those machines so much.

Ali's Dr. called me and Scott while we were out to dinner. I talked with him for about 10 minutes and felt my balloon slowly start to deflate. As of right now... decannulation is questionable. He reminded me again of Ali's very, very bad lungs. Her BPD (lung disease). And now, as I though, a possible airway restriction. This could be a number of things related to her crummy lungs (atelectasis) or it could be as "simple" as a tonsillectomy. It could also be related to her tongue falling over her airway or it could mean that she needs a CPAP, which she has on her vent... which brings us back to decannulation or using the trach for a CPAP.

I can't begin to tell you how complicated it all seems. Yet, I KNOW it is so UNCOMPLICATED. The Lord already knows the answer and we are clinging to this. Honestly... I am processing it all. I can be a bit like a dog chasing their own tail in my efforts to plan our life. A lot rests on Ali being decannulated or NOT beign decannulated.  We should have more answers once we do a sleep study or sedated scope of her upper and lower airway.

It's just a lot to take in. Sometimes, I think... why I am "blogging" all of this. But, I know why. When I go back and read it, I can process it all a little more. And... I know there are other parents out there in our situation. I have been INCREDIBLY blessed by a lady named Ann and her son Jack (http://jack-schrooten.blogspot.com/) and her wonderful blog. I guess... in my own way, I hope to be a blessing to another person in the event they read this. To show that MANY have walked this path before us and many will after, as well.

There is always something else to write/talk about... but for tonight, I just needed a place to dump all of this; to revisit it later. And again, I shove it all back into the Lord's lap. I am so thankful to have a Savior who WANTS to carry this load for us. It's certainly to heavy for us to carry alone.

And.... here we go.

Scott and I knew the time would come that Ali would get sick with a cold while starting out on this cap. I just didn't think it would be so soon. She is coughing, sneezing and we are needing to suction here quite a bit more as of this evening.  True to form, a holiday is quickly approaching, therefore, an illness must be had.  =(  Such a bummer as it adds more stress in not knowing how things will play out. Will we make it to Grandma and Papa's? Will we need to stay home or "tag-team" with the kiddos? Will we end up in the hospital? One never knows and I try VERY HARD to just roll with it, remain positive and try to give it back to the Lord.

The big issue surrounding this illness is how well (or not) she can handle it while being capped. We are in the beginning stages of capping her so I am unclear as to how long to try her. I know the answer already; "Is she retracting? Is she needing more oxygen? What are her medication requirements?"  I know all of the signs and symptoms. I understand what to watch for. I just don't know how SHE will do throughout the process and this unnerves me.  But again... I have to just roll with it. Understand that life must stop for a few moments, hours or days as we help her to heal and put aside my to-do list.

I also spend a great deal of time stressing about Scott's work. We both can become stressed when we know that Ali is getting sick and it's more than I can safely handle by myself. I tend to be pretty conservative in my approach to Ali. I don't like giving her more meds than necessary but I also am the first to give it when warranted. I am a "slow and steady wins the race" kinda gal but am the first to push forward when I feel prompted.  It takes a lot for me to say to Scott that I feel "unsafe" with Ali at home. Partly  I feel that we have been well trained and honestly... I HATE going to the hospital. I appreciate the staff, feel that she is well cared for (most of the time) and enjoy those one-on-one moments, but it brings up emotions and stresses me to no end when it comes to the care of our other children.  Too many times Scott has needed to take a day off of work in order for one of us to be at the hospital while the others are being cared for at home.  Thankfully, THANKFULLY, we have wonderful parents, family and friends that step in and help us as they can.  If not, I don't know where we would be concerning Scott's employment. This weighs heavily on us quite often.  It's one of those, "we're trusting in You, Lord" kinda things as it's too big for us to carry.

Aside from all of this, we had a wonderful evening celebrating an early Christmas with Scott's parents and our family/extended family. It was fun watching the kiddos make gingerbread houses, eating way too much dessert and having a "White Elephant" gift exchange. I LOVE these gift exchanges. It's so much fun seeing what everyone will get and at $5.00 a gift, way more affordable, too!  All in all, it has been a really great night.

So... it's 12:52 a.m. and I am hoping to get  a bit of sleep while Ali is sleeping. Something tells me Eva will have other plans, however... 

One last thought... Consider those around you. Your family, friends, those "used to be" friends.  Life is precious and incredibly short. A person I love very much just lost her Dad this evening. Much too soon. Tonight, she is grieving his passing and the reality that his time here on earth is complete.  It is so true that we need to take the time to make amends. To connect with those that we loose touch with.  To say I love you once more. Give a hug. Take a chance and show your love.  Offer a bit more grace.

On that note.. good night.  <3 p="">

The next phase...

We have now hit the last and final phase of Ali's "devices".  The cap. 

When a person has a tracheostomy placed, it can be, as I have learned, placed for a multitude of reasons.  Cancer, paralyzed vocal chords, pulmonary hypertension, Bronchyopulmonary Dysplasia (which Ali has), certain syndromes... and the list goes on and on.  While some trach-dependant people will always require the tracheostomy tube, others go on to a "magical place" called Decannulation.  You hear of it. You see pictures of it. You dream about it and pray for it. But it's never a sure thing until that trach is pulled and the Doctor gives the final o.k. to LEAVE it out!

There are many steps to move towards decannulation, but it seems that in general, it follows this guideline.

1. Diagnosis made/Trach surgically inserted.
2. Discussion begins on when trach can be removed!
3. Many months later, person with trach (and sometimes vent, as in Ali's case) comes home with nursing care, equipment, medical devices and the hope of it all going away just as quickly as it came.
4. "Nose" or HME given to person to keep lungs moistened. Otherwise mucous plugs can develop and cause an obstruction in the airway. EVERY time Ali has "coded" it has been due to a plug or the trach becoming dislodged or BOTH. This is a scary situation and is the ONE thing that grabs my attention every time I hear "that sound" coming from her.
5. Moving on however... Person does well, might potentially need airway reconstruction (or some sort of surgery) and is then tried on the PMV (Passey Muir Valve). This is a device that attaches to the trach and allows air to pass over the vocal chords, thus allowing the person to speak. It is TRULY  amazing to hear that sweet, sweet voice and the laughter!! Ohhhh....the laughter is incredible! 
6. Once the PMV has been tolerated (with or without the hole punch in the disc) you are then, FINALLY, offered The Cap. Oh, HAPPY DAY!!  We have FINALLY arrived at the cap!  The cap seals off the tracheostomy tube. It prevents the person from breathing in thru their "stoma" (or the hole in their neck). It instead forces the person to breathe in and out of their mouth or nose, ONLY! After so many years of breathing via the trach, that has got to be a crazy sensation for Alicen.
7. Once the cap is tolerated for (in our situation) a minimum of 6 months, we can then move towards decannulation.  There are many steps in the process of pulling the tube, but I cannot speak to those as I have not gone thru them with my daughter (as of yet). But, I can imagine it will blow my mind!  My husband and I have never NOT seen Ali with some sort of tube running across her face, into her mouth or down her throat.  To see our daughter free for the first time in over 4 years would be wonderful!

As you can tell, it is a pretty intense, exciting, stressful and amazing time! Scott and I know the Lord has Alicen in His hand and He knows when (and if) the time will be right to move forward.  We simply have to trust Him and follow her lead.  We are hopeful for a date of end of summer/early Fall. But again... it's all in His time.

I am going to try and be a bit more faithful to this blog. Honestly... I'm not taking much time to edit anything or consider spell-check or even "grammar check" at this point. I want to simply jot down moments that I can look back on and remember where we were at this point in our lives.  I also hope that the little bit that I do post will be helpful to others. I tend to be pretty straight-forward about things so I hope it's some concrete info for others in our situation.

I was planning to type a bit about trach care and such, but a 3 month old is beckoning me.  Computer or Eve?  She wins.  <3 p="">

A quick post

It seems like I get an itch to post something on this blog once a year. Maybe to keep it "active"?  =)   A lot has happened over this past year related to Alicen's health and the well-being of our entire family. 

Last March, our world was rocked when Ali coded at our house. Our night shift nurse had just left for the morning and Scott quickly followed. All seemed well until I started her nebulizer treatment. And then it got ugly. It's a long, sorted tale and one I am too tired to write out at this moment, but I will follow up at some point.

Again, just touching base.  I plan to write more in the upcoming days as I feel like there is a lot to write about!  In the meantime, it's off to sleep. Or off to TRY to sleep as my 2 month old snores and startles herself at random, while lying in my bed.  So sweet.  =)

I can't STAND this!!

Can I just say how SICK and TIRED I am tonight with ventilators/trach tubes and the rest of this?  It has nothing to do with my love for our daughter and yet it has EVERYTHING to do with my love for her.  It has been a long 3 years for her. She has struggled in ways I have never known.  Tonight, she is down at Children's and is incredibly sick.  I am home as I was up with her last night and need to try to sleep for a bit in order to care for her in the morning.  I HATE that I am not with her but thank Scott so much for getting into the ambulance and going with her.  It's an awful feeling when your child reaches out for you out of the ambulance and you have to watch her drive off knowing she is crying and just wants her Mama. 

I am just DONE!!  I am tired and overwhelmed. I need to sleep. Mostly... I am just praying for the Lord's protection over all of us and for a moment of rest.

In Him, I find peace. Even when feeling the way I do right now, I know HIS will is perfect and that, while being frightened, I can give it all back to the Lord.  Not hang on to my feelings but trust that even if I am not there, God is ALWAYS with Ali (and all of my children and each of us).  I just wish I were there too...

A three year old with piggy tails!

When Ali was so sick and in the hospital that first year, I would stand by her crib and imagine what she would look like at age 3. I would picture her in little jeans, a stylish little shirt and her hair swooped up in the sweetest pig tails.  She made it to age 3 AND she looks just like I imagined her.  It's pretty amazing to see the Lord work so clearly and see His miracles day after day.  Really, they are all around us; God's miracles. But I don't think I took the time to seek them out or notice them before meeting Ali. I'd see the BIG ones but I missed out on so many of the little ones.  Three years later, I am thanking the Lord for the 6 miracles in mine and Scott's life.  Who knew one little person could help in re-shaping the way I view the world, my children and myself. I am a better Mama and wife because of the Lord placing Ali in our lives.

I can't wait to see how all of our children grow over this next year. I just wish my older ones would give me "permission" to write about them as often as I write about Ali.  They're getting older and want their "privacy". Too bad. There is so much GOOD STUFF to write about them!  =)