New clothes for the playground

I finally went through the 9-12 month clothes I had gathered for Oliver and sorted out all the outfits that would still work.  Previously I had prepared for a feeding tube (so no onesies, zip-up jammies, etc. - his tummy needed to be easily accessible), but not a trach.  No more t-shirts now either!  Jammies and shirts have to be all completely snap up.  Pants work OK, but snap up is a bit easier because of the oximeter probe on his foot.  I kept this one outfit because I just really liked it, and the collar was big enough to be clear of the trach  and for me to get it on him by pulling it over his legs.  He looks so dressed up compared to wearing jammies all the time!

We also got him into his swing for the first time since we've been home.  He woke up for a bit when we put him in and he got really interested feeling his toys in front of him.  He's big enough now that his little arms can reach the tray.  I think the more upright positioning will be good for him and the support of the swing will help his hands find the toys on the tray.  I'm really excited about having a new way to let him play!

Test results

We heard the results from the big genetics test finally today.  They looked at over 200 genes, all the ones that we know deal with metabolics (about 75 of those deal specifically with mitochondrial function). We sent off for the test back in October; it has been a long wait.

The results did not show any abnormalities.  Aside from a few, very minor "spelling" errors (which would be expected in anyone's genetic sequence and which would not cause any trouble near the degree of the severity of Oliver's case), Oliver's gene sequence looked normal. 

This was a hard blow for me today.  I didn't realize just how much I was hoping for a diagnosis.  Not because of any information it might give us but mostly because I wanted a name.  I wanted to name the enemy.  I wanted to name it and identify it and distinguish it from my son.  I wanted a name to pray against, to sink my growling teeth into.

I haven't gotten to speak to the geneticist or the metabolics doctor yet.  Hopefully I'll hear from them in the next few days and get to unload my many questions about what it means and where we head next. 

This is at least our eighth genetics test since Oliver was born.  A mitochondrial disease may still be the best natural explaination for Oliver's condition, but maybe his specific kind has just not been identified yet.  I'll post an update after I hear from the doctors. 

Thank you, as always, for your continued prayers and support.  The little notes, unexpected gifts, and blessings of service to our family is so nourishing to our souls, thank you, thank you.

He came back again

I had to resuscitate Oliver again yesterday morning.  He was back to "normal" again immediately after the incident, but it wiped me out for the rest of the day.  I took a long hard nap in the afternoon!

The trouble happened while were changing the ties that hold his trach tube in place.  We change the ties and wash his neck daily and we always take precautions to prevent the tube from coming out while the ties are off, but this time it slipped out and he did not recover easily.  The details are below for those interested:

I had already removed the old ties, cleaned his neck, put new ties and foam on, and was trying to tighten the velcro tabs around his neck when the nurse said his color wasn't good.  I laid his head back down saw that his face was indeed turning dusky purple.  We soon realized that his tracheostomy tube had come out; we didn't notice it previously because by that point I had put the new lyofoam piece around the trach tube so we couldn't see the trach tube underneath it.  Our nurse was holding the trach tube in place, but Oliver was being especially squirmy in spite of being swaddled.  The ventilator alarm did not go off, probably because the tube was being pressed against his neck still as the nurse thought she was still holding it in place, so there was enough resistance in the tube that the ventilator machine still acted as though it was attached to a patient.

Thankfully I was able to immediately put the trach tube back in easily on the first try (Oliver's tube is flexible so usually it requires another tool to put it in easily) and we quickly started "bagging" him (using a football-shaped balloon-looking device that lets us give Oliver manual breaths through his trach.- the "PR," or pulmonary resuscitation, part of "CPR").  His color worsened, turning to a mottled blue, and his vitals (heart rate and oxygen saturation) kept dropping on the monitor.  I waited for him to revive for as long as I felt comfortable and then had the nurse call 911.  While she talked to the dispatcher I did two brief sets of chest compressions because by now the oximeter probe had lost his pulse so monitor was just blinking.  I kept praying, "Please, Lord, not while Joel's away, not now, not yet..."  Shortly after the second set of chest compressions he suddenly turned pink and started squirming again. 

We welcomed the paramedics a few moments later.  Even though Oliver was back to normal again by the time they arrived, I was still thankful for them assess him and check to make sure I had not damaged his sternum or other parts of his chest when I did the compressions.  They did not detect any obvious damage, and I was reassured later in the day when I spoke to our pediatrician that it is very unlikely that I caused any damage because he is still so young and his bones are still soft and somewhat pliable. 

I am so thankful that we had a friend helping us with the girls that morning.  As soon as Oliver was stable I went into the other room explained what happened, and then let them come into the living room to watch the paramedics arrive and check Oliver.  Nora hung back at a distance with our friend, but Elsa found the whole situation very interesting and I had to ask her just watch quietly because she wanted to keep talking to the paramedics!

Joel has been out of town for work this week, so I am especially thankful that Oliver pulled through ok again.  Thank you, again and as always, for your on-going prayers, support, and encouragement.

 

It caught the sunlight

...but no flies yet.

 

 

 

Putting her feet up

Her babies must have worn her out with such a busy day.  Good thing the "crib" is the right height for a foot rest:

 

"Is it time to get up yet?"

The photos are from different mornings, but the question is daily.  

 

 

 

The answer is almost always "No, dear, it is still VERY early,"

 

I usually send her back into bed, quietly, so to not wake Nora, but sometimes she gets to stay up and snuggle as I enjoy my tea and quiet time and keep and eye on Oliver.  It is a lovely way to start the day.

Valentines

Honestly I have never been fond of Valentines Day myself, but the girls have gotten pretty excited about all the hearts and little cards (and candy!).  Elsa ran into the room before breakfast and exclaimed that Oliver had "kisses on him!"  She proceeded to explain that today she was magical and when she kissed him "stuff came out of him" (her arms were making fountain-like movement). 

The girls also made him breakfast in bed - tea and a brownie!  Sounds like a good breakfast to me!

Nora played him a song too. 

He's holding steady still, but insurance and pharmacy issues have been invading my morning hours for the last few days.  Thankfully we have several great "cacoon" nurses who are helping us get everything in order. 

Happy Valentine's Day, we love you all! 

A "high" chair for Oliver

No seizures since last Wednesday!  Oliver's had a pretty easy last several days but we've been watching his heart rate closely.  Soon after the seizures stopped his heart rate frequently hovered in the 80s (rathoer than his normal average of 100 beats per minute), and occasionally would spontaneously drop as low as the 50's for a few beats.  We (I mean his team of doctors and us) stopped one of his medications that has the effect of lowering his heart rate (a beta-blocker prescribed for his cardiac arrhythmia that he may have outgrown by now anyway).  This has helped, but then his heart rate started to creep a bit too high, so we will probably start back on the medication but at a lower dose.  Thankfully, his last few days have been easy!

Elsa wanted to hold him today so I put her up in his crib for a while.  She LOVED rubbing his head and playing with his hair.  I think he loved it too - it put him right to sleep!

 

And Oliver got a new "high chair" of sorts today!  I found an awesome bar stool on Craiglist - awesome because it was the right height, the right price, sturdy and heavy for little girls to climb, and the style even fits our living room!  Thank you God, thank you Craigslist!  Now we have a comfy spot to sit next to him and for the girls to reach him.  Elsa's showing him his Valentine's Day card from my mother:

Away

For Christmas Joel gave me several weekends "away" throughout the year (yep, he's smart and sweet, and mine!).  So when he told me to "go away" this past weekend, it was not in exasperation but rather with an insight that I benefit from times of quiet to rest, pray, recollect my thoughts, and seek God's direction.  And sleep in.  So I stole away to a simple but lovely bed and breakfast in Ashland (about 20 minutes south of us - not too far, but just far enough).  My headaches stopped, and I got to read more than 3 lines at a time!  I also loved the yellow door to my room.

Coming home a world of alarms, medications, ear-piercing squeals of protest, and persistent requests for sweets was like facing a breaker wave, but my God is a strong tower and He never lets go.  The days feel long and hard, but there is such joy in living.  Joel just finished giving Oliver his medications and then joined the girls in their silly sing-song romp around the room, snatching them up each in turn for tickles and goofyness.  (Why is the best time to play always just before bedtime?)  It all got quiet for a moment - they must be getting ready for bed - and here comes Nora, in her favorite activity of streaking through the house in her two-year-old birthday suit, stopping for a moment to proudly strut her round tummy and I ask her, "Are you going to show Daddy how you can go on the toilet?"  She looks suddenly surprised and OH! she looks down and pees on the floor, thankfully the wood and not the carpet.  I call Joel for help, we rush, laugh, hold the child in place as an old towel comes out to clean the floor and catch the drips.  Eventually jammies are convinced to zip all the way up and they now are reading bedtime stories in the living room, so Oliver can hear too. 

My reminder line for this season is "Life is not an emergency," from Ann Voskamp's writing that worked so hard on me last year.  We have plenty of emergencies, but life is not one of them.  Life is a gift.  Not the cliche "live, laugh, love" line, but a moment by moment giving of pure grace, given by our passionate Father who bought our freedom from burdens at the steepest, unimaginable, once-and-for-all price.

Seizures

Last night (Sunday, Feb. 3) Oliver started having seizures again.  He's been on a maintenance seizure med for about three weeks and had not had a seizure for over a week and a half, but starting last night around 7pm he's had over 27.  Most have been moderate but one of the last ones dropped his oxygen saturation to 43%. 
We called the on-call doctor when the seizures started last night but unfortunately it must have been a newer doctor at our pediatric group and he was not familiar with Oliver and not comfortable giving us counsel about how to change his medication.  Of our three choices (the on-call doctor said to go to the ER for tests, or we could do nothing and just watch him have seizures all night, or we could increase the dosage of his seizure medication on our own), we choose to increase his medication on our own.  Our own pediatrician had just made a house call earlier Sunday afternoon and had said several times that we were on the low end of the dosing range for Oliver's weight, so we gave him a slightly increased dose from what we had been giving him, in keeping with the incremental increases that the doctors had ordered in the past.  The seizures seemed to ease up slightly, but still continued throughout the night. 
We called and talked with a different doctor this morning and he agreed that what we chose to do was fine, and he even increased the dosage again since the seizures had not stopped.  The seizures have persisted so the doctor just instructed us to use the "rescue" seizure med to break this series or cluster of episodes.  Essentially it is a fast acting valium, which will probably wipe him out in a deep sleep for a while.  We pray and hope that the seizures will stop to let his little body rest. 

*** Update: the first dose of the valium helped but did not completely stop the seizures so we just gave him an additional dose as per the doctor's instructions.  Hopefully this larger total dose will help him. 

***Another Update:  Tuesday morning - we gave Oliver the Valium again at 1am, but each time it wears off his seizures come back with a vengeance, as frequent as every 10 minutes.  Please continue to pray for Oliver and for us and his doctors as we try to figure out how to help him today.

***Finally: Tuesday afternoon his seizures became gradually less intense and finally seem to have subsided.  Hopefully the current dose of his medicine will keep them under control and let him (and us!) rest.  Thank you all so much for your prayers over the last few days!