{fear}

[this is the post in which so many of you will see that I am really not as strong as you think I am]

This weekend, I read a post on Band Back Together and it was like a light bulb went off in my head... definitely a defining moment for me.

I spoke with my psychologist today and she confirmed what I already knew... I am suffering from PTSD, anxiety and panic attacks.

Here is where I attempt to become transparent... Any time Pierce sleeps longer than he should or later than he should, I internally freak out. Recently, Pierce slept until just after 7am (not normal for him). While most parents would gladly welcome an additional hour of sleep, I laid awake from 6am on.  By the time 7am rolled around, I was in a full blown panic attack - heart racing and pounding, feeling like my sternum would give way at any moment and my chest would rip open. I laid there thinking those thoughts... you see, after you've watched your child turn blue and stop breathing, after you've watched your child turn blue and go limp countless times, after you've watched your child choke on things he likely shouldn't... your thought process changes - at least for me it has. I lay there thinking "what if I open his door and he is blue"... "what if I open his door and he is dead" - (as I type these words, my heart is pounding). And while I've been reassured that because of what I've been through, those thoughts are normal (for the circumstance) - what I say next, isn't normal. It takes me minutes - at times a couple, sometimes almost 10 minutes - to gather enough strength and courage to open his door... because I have this image of my blue baby stuck in my head... I am afraid that when I open his door, that's what I will find. And that fear paralyzes me.

Tonight I told George that I needed to tell him something but I was afraid that he would think I was absolutely crazy (because really, how normal is that thought process?) I was so hesitant in sharing with him, but I reluctantly did. I started talking and explaining the fear that paralyzes me... that puts me into a panic attack... I began to say "I don't want to open his door because what-if... what-if" as I was biting my lower lip because I didn't want to cry... I just flat couldn't get the words out... he looked at me and said "you don't need to say anything else, I feel the same way. I have the same fear." And as good (I know, maybe not the right choice of wording) as it felt to be validated, it felt that bad, knowing that he feels the same way - because it's a horrible way to feel. He explained that's why he checks on Pierce 3, 5, 10 times a night (we both check on the boys several times a night). Now with that said, his fear isn't as extensive as mine. He doesn't become so scared that he won't open the door... but he still fears the worst. He also said that it's becoming less of a big concern and more of a smaller one... his biggest worry with Pierce as of late, is him choking - we've been dealing with it much more than we'd like - let's just say, performing the Heimlich 3 times in 7 days aren't the greatest of odds.

I hugged George. I thanked him for not thinking I was crazy. My heart was hurting that he carries the same fear as I do. I thanked God for truly giving me my perfect soul mate.

I hate this fear. I hate the unknown - I am such a control freak and I feel as though know I have such little control over all of this... and I don't like it... not one tiny bit. But I do as I have to... I put my brave face on. During our crisis moments, I am grace under fire. I run on adrenaline. I do what I have to take care of my baby... to advocate on his behalf. And it's tough because to look at him, Pierce looks like your normal 17 month old - his insides just don't match his outsides. But I have my moments, where it all breaks down... and when fear creeps in like a thief in the night... I try not to let it steal anything, but clearly, sometimes it does.

bumper cars - missed memo?

I apparently missed the memo that I would be involved in a game of bumpers cars yesterday...

Pierce had an appointment with pulmonology at Children's. He had a clear (!) chest x-ray with NO sign of lung disease. He still has a residual cough (mainly at night) from his upper respiratory infection. Dr. L thinks it's one of two things: (1) he's had multiple lung infections and he wheezes from time to time (especially when he's sick) - so the night-time cough could be an asthma-like cough or (2) with viral (respiratory) infections you can experience asthma like symptoms for 4-5 weeks after the infection subsides... so for now, he will receive a breathing treatment at night, before bed. Dr. L wants to see us back in September when "lung season" begins. I am imagining that we will be on a 2-4 times a year checkup pattern with him. He stated that if he ever sees a problem cropping up that he will let us know how he thinks it will play out ahead of time so that we can make a decision in a non-stressful environment. He reminded me (in a kind, not fear-mongering way) of the down sides of mitochondrial disease (ie G-tubes, serious breathing difficulties, etc). He seems to be very intelligent (you can tell he knows that he is but he reels himself in avoiding arrogance) - he was the Director of ICU at Children's for 25+ years. Long story short - I REALLY like him and I am glad to have him on Pierce's team.

On our way home, literally about 1 mile from our house, we were rear-ended --- seriously, being in a car accident with my child had always ranked in my top 5 mommy fears. With this accident, I knew it was going to happen when I looked in my rear view mirror. Poor Pierce was sound asleep - the scream my baby let out on impact was horrifying. When I knew the impact was inevitable, I kept thinking "I am going to get out of this car and give that person a piece of my mind... how could he hit me? And with my baby in the car? What part of stopping couldn't he understand?!" --- and after Pierce screamed all I thought was "How quickly can I get out of my seatbelt and get him out of his carseat?" It took a good 10 minutes to console him and it broke this mama's heart. A state trooper came out and wrote a report.

Pierce seems to be having some anxiety with getting into his carseat. It has happened four times now - he freaks out and doesn't want to get into his seat. I am a little sore. I must have clenched my teeth because my jaw hurts in addition to my neck, shoulders and lower back.

I filed a claim this morning. At first the (at-fault) driver's insurance company did not want to replace both carseats but one simple statement changed their mind: "... that's fine. I would like a written statement from your company accepting full liability and responsibility in the even that Brice's carseat were to fail us in the future." Carseat safety is a huge thing to me - I refuse to take any risks with my children's lives.

At the end of the day, I am so thankful that our car was significantly damaged and that my baby and I were not seriously injured.

More Labs

[Before I go into the details of Pierce's labs, I want to welcome my new readers from Kelly's Korner --- and a special thank you to the moms who've reached out because they've been in my shoes before.]

I received a large portion of Pierce's most recent labs - we're still waiting on his CoEnzyme Q10 and Carnitine levels and Organic Acids (those are sent out of state).

Pierce had an upper respiratory infection that started 2.5 weeks ago but he has vastly improved since then. When the URI started he was hoarse, wheezing, sounded very junky, had tennis-ball green nasal discharge, a not-so-lovely cough and mid-grade fever that would come and go. On Memorial Day, I took him into the ER because he started sounding like a bullfrog while breathing - the ER doc heard lots of upper airway congestion but couldn't hear anything in his lower lungs. He said something could have been going on but because we were already doing 3-4 albuterol breathing treatments daily, he couldn't be certain.

He still has an occasional cough - nothing like what it once was or near as frequent - and we can still hear a bit of congestion when he's breathing. I was surprised when I saw his WBC (white blood cell) count...

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

His platelet count has been high on his last two sets of labs - in addition, his lymphocytes (lymphs) have been high and his neutrophils (segs) have been low  ---

6/7/2011

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

3/7/2011

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

Yesterday, I spoke with Dr. P (allergy/immunology). She informed me that platelets are an acute phase reactant - so a high level can indicate a reaction to infection or inflammation. Neutrophils guard against bacterial infections, and are found in the blood stream, which allows them to respond quickly to trauma and move to the site of infection or inflammation. A low neutrophil count can mean depleted or compromised immunity. Lymphocytes are T cells and B cells - they form part of the adaptive immune system, B cells create antibodies in blood which are used to kill foreign bodies, while T cells help in the activation of cells that will neutralize threats. Low neutrophils and high lymphocytes generally signal a viral infection - the elevated count is a result of the body's attempt to fight the infection. So something is definitely going on inside of him at the moment. The good thing is that his body is semi-responding the way it should - he just doesn't have the antibodies he should to fight off infections.

His neutrophils were low and lymphocytes were high in both March and June. His WBC count was normal in March and high in June. Dr. P plans on doing another CBC when she checks his titers after the Pneumovax23 vaccine. If his lymphocytes are still high, they will look deeper into it - whether it's his T-cells or B-cells, etc.

I also expressed my concern over the Pneumovax vaccine and his age (according to Merck, it's safety and effectiveness has not been established in the under 2 population). Dr. P reassured me. Early childhood vaccines are protein conjugated because that's what the immune system recognizes when it's still developing. Pneumovax is a polysaccharide vaccine - typically young children respond poorly to this. The hope is that since Pierce's immune system responded poorly to protein-conjugated vaccines that his body will mount a different (positive) response. I feel better knowing that he isn't going to have some sort of negative reaction to Pneumovax - the only negative reaction would be his immune system not responding to it and us having to move on to a different path.

For now, we are keeping things a bit more low-key until he receives the Pneumovax vaccine (even though it's not a guarantee then) - we are staying away from large crowds - especially lots of kids, any one sick or recently sick, etc. I am just so thankful that he hasn't been more sick than he has.

That's all for now - a mountain of laundry and two little crazies are calling for me :)

Have a wonderful weekend!

{four}

Four years...

1460 days...

35,040 hours...

2,102,400 minutes...

11 years together

one "surprise" wedding

3 pregnancies

one loss

2 births

2 sons

one death of a parent

5 four-legged furry animals

3 turtles

2 jobs

2 vacations

one major diagnosis

many hospital stays, surgeries, procedures, results

buckets of hope

steel beams of strength

hundreds of tears

ten thousand laughs

never-ending love

one promise of forever

June 9, 2007

the day I said

I do.

the day I said

I will hold you when you fall...

I will laugh with you and smile with you...

I will stand by you no matter what...

I will love you for the rest of my life...

I will honor you and cherish you...

all the days of my life.

titers and vials and more

Yesterday, my sweet little man had his quarterly follow-up with genetics. Since I don't feel like getting all fired up again, here's the annotated version:

After almost 45 minutes in waiting room with screaming toddler, our brazillant nurse crossed my path (not her best move) and I wanted to drop-kick her for her craptastic attitude... fast-forward another 45 minutes, doctor finally joins my terroristic toddler... he immediately apologizes for the "unacceptable wait time" (his words, my thoughts --- someone double booked his 9am slot - mind you, our appointment was scheduled for 3 months... sigh)... I express my dissatisfaction with his nurse... he acknowledges that "changing the system is hard, but he's diligently working on it."... we move on to the real reason for our visit - sweet Pierce. I tell him about our ST's concern with his decrease in words - he says we are probably seeing some regression but the positive thing is that he will progress back up. Mitochondrial disease has it's ups and downs - like a roller-coaster. I told him that we saw allergy/immunology and that Pierce's IgG levels came back low. We discussed Pierce's history of pneumonia, (several cases of) bronchiolitis, wheezing, neb'ing, etc... he thinks we need to add Pulmonology to our (ever-growing) list of specialists. He also said that Pierce is anemic - his levels aren't critically low. We are adding Poly-Vi-Sol to his daily regimen of medications/supplements. If that doesn't help, he may need elemental iron. We waited forever and a day for his labwork (due to miscommunication... again)... his left arm pooped out after {barely} two vials (I knew it would as soon as they stuck him because of the way his blood was flowing...)... his right arm was such a champ... 8 vials of blood later, one teal bandaid, one red bandaid one orange and one grape lollipop, two glittery Elmo stickers and we were FINALLY out of there... a whole 3 hours later.

Stats --- 23lbs 4oz (16th% weight) and 78.9cm (20th% height)

I received a phone call today from his allergist/immunologist team. they received his titers back... not so great news.

Pierce received his Prevnar (PCV7 - now it's PCV13) vaccine at 2 months, 4 months and 6 months of age; at 15 months, a child receives a Prevnar booster. A child's immune system is typically where it should be against the 14 most invasive strains after the first 3 Prevnar vaccines... Pierce's is not. 

They want to see at least 7 of these serotypes greater than 1.29 --- as you can see with Pierce, only 2 of his are... and just barely. Because of his low titers and low IgG levels, they are going to give Pierce a vaccine called Pneumovax 23. They said his body will (or should) mount a different response to this vaccine. Approximately 6 weeks after, his titers will be re-checked. If his levels are still low, we will discuss our next step (possibly close monitoring of his infection levels or straight on to IVIG). [side-note: I am slightly nervous about this vaccine seeing as how it has not been established in the under 2 population... Pneumovax23]

It's so hard seeing this sweet, smiley-faced boy that looks a-okay on the outside but really isn't on the inside... that's all for now... I feel depleted... but in 30 or so minutes, that sweet smiley-faced, blonde curly haired boy will be calling my name... and showering me with wet open-mouthed kisses... and that my friends replenishes my spirit.