"The time has come," the Walrus said, "To talk of many things:
of shoes and ships and sealing-wax, of cabbages and kings,
and why the sea is boiling hot, and whether pigs have wings."
- Lewis Carroll
"For now we see through a glass, dimly; but then face to face: now I know in part; but then shall I know even as also I am known"
- 1 Corinthians 13:12
We've been home for over a month and we are so thankful to be back in our familiar surroundings.
These catch-up posts will not be the most eloquent but hopefully they will give a good snapshot of our lives since we left Portland. There's a long post about Oliver, and lots of little posts with photos since we left Portland.
We ended the year by putting off the work of settling back in order to just enjoy Christmas, and we started the year with a 911 call and a lost-but-started-again heartbeat. We're learning to coordinate nursing schedules, new medications, palliative care nurses and pediatric specialists, medical supplies, respiratory support services, physical therapy/Early Intervention, state and federal support programs and insurance policies, not to mention giving priority to maintaing a marriage, toilet training (Nora) and learning to read (Elsa). Many friends, old and new, have come to our home to pray for Oliver and our family.
It has taken me a while to catch up here mostly because our days are just so full and we are so tired. I know I have also put off posting some nights because so often, at the end of long and exhausting day, it is especially difficult to want to put into honest words the events of the days and the deep emotions that accompany them.
So, yes, I am weary and grieving, but I also continue to be surprised (even though shouldn't I know better by now than to find it surprising?) by God's sustaining gifts and perfect comfort.
Like this: Who, even after a long day of alarms and phone calls and a disaster of a dinner, wouldn't find themselves smiling and even belly laughing at this moment captured by my friend who was helping us that night:
When people ask how things are going I find myself often saying something like "Oliver is keeping us busy." It is true - much of my day is spent dealing with medical issues like desaturation episodes, seizures, managing his secretions, or doing routine cares for him, or with the logistical side of managing his equipment and care. But I think it has also been an easy way out; an answer to satisfy the question without really getting into the complicated details and the stormy emotions.
So here's a recap of the last month and a half - I know Joel has been sending out some emails along the way so I'm going to try to summarize briefly, but I know that can be hard for me to br brief!
In the week and a half before Oliver was discharged, we had seen him suffer several setbacks that indicated he was not able to recover as much as we had originally hoped from the respiratory failure that caused his admission. He had sprinted for up to five hours off the ventilator, but it wore him out after several days and by the time we came home he was "riding the vent" (meaning he was letting the ventilator do all the work of breathing for him) almost exclusively. He also had some trouble with both his metabolic and respiratory acid-base balance, and his hypertension returned. It took some time to re-balance his electrolytes and carbon dioxide, and we finally found a "cocktail" of meds that controlled his hypertension, so thankfully his team was able to get him in as good as condition as they could by our planned discharge day.
We got to ride home in an ambulance for the 6 hour trip home to Medford. We may not have made it home on our own because we discovered that there was a leak in his ventilator circuit (the breathing tubes) during the whole trip. We should have noticed it before we left the hospital room, but I think there were so many doctors and nurses seeing us off that it was overlooked. During the ride to Medford he had significant trouble breathing, but we thought it was because we had to disconnect the ventilator for a few moments as we got him into the ambulance, and because he was not used to being in his car seat for so long. So, by the time we got home and realized that his ventilator has been leaking the whole time, Oliver had put up a long, hard 6 hour fight to keep breathing mostly on his own. It was another set back for him, and took him a good week to mostly recover. I say "mostly" recover because he improves after crises events like this but never fully recovers to his previous condition.
When we first arrived home Oliver was put on a mattress on the floor for the first 24 hours or so until we figured out how to arrange his crib and our living room. The girls had come home two days before us to stay with friends, and joined us the day after we arrived with Oliver. That week, while Oliver was recovering from his trip, both girls got terribly sick, one after the other, with and awful stomach flu. Our church family has been completely sustaining us with cleaning our home before we arrived, stocking our fridge with food and meals, helping with our children, and many other blessings.
In general Oliver's condition is somewhere between stable and slowly declining. Since we've gotten home Oliver needs more oxygen support (he now needs 3 liters/minute rather than the 0.5 he needed when we first got home), has been aspirating much more, and has started having seizures. The seizures probably started back in November, but they were so mild that we didn't recognize what they were at the time, and they never happened when a doctor or nurse was in the room. He's had one very bad seizure, and then started having frequent, moderate seizures that were followed by a drop in his heart rate and oxygen saturation. He's been on seizure medication for about two weeks now and so far it has been controlling his episodes.
Thankfully we've only had to call 911 once since we've been home so far. On New Years day Joel and I were changing the ties around his neck that hold his trach tube in place (a daily care for him), and we think what happened is that the tube must have twisted or moved in such a way that it stimulated a vagal response. When the vagus nerve is stimulated is can cause a drop in heart rate, and a strong reaction (like what Oliver does) can lead to a cardiac arrest. All of a sudden Oliver's oxygen saturation plummeted and his heart rate dropped. We did one intervention after another, just as we had done and observed in the hospital, but nothing helped and he turned blue, pale, and completely limp. The pulse oximeter lost his pulse. We got him out onto the floor, I "bagged" him (forcing breaths into his trach tube using an ambu bag) while Joel did chest compressions. Just as the paramedics approached our door, Oliver suddenly turned pink, stretched, opened his eyes, and pooped. The whole ordeal lasted about 5 minutes, and we estimate that he was without a heartbeat for maybe most of that time. Praise God that we were calm through the whole thing. We've experienced so many crises with Oliver that we are familiar with how to help him, and also God has continued to grant me a peace about trusting in his plan for Oliver's life.
He's rather sleepy most of the time, but still does wake up some, especially when we get him out of bed to play and do his exercises. We let the girls lay in the crib next to him sometimes and they frequently are pulling up a stool so they can see him over the crib railing.
Oliver's current condition as a "medically fragile child" qualifies him for 16 hours of in-home nursing support a day. We are so thankful for the help for caring for him, and we are doing our best to adjust to living with additional people in our home. Our nurses care for him eight hours overnight and for eight hours during the day. We let them do most of the "medical" cares for him so that we can focus on just caring for him as mommy and daddy, and it also lets me try to keep up with the girls and our home.
Sometimes I wonder how much Oliver is aware of what is happening around him, but the infant teacher and physical therapist from the Early Intervention program were encouraging when they visited yesterday. I only can see how Oliver's condition has declined, and how much less he can do compared to a normal 10 month old baby. During their visit they taught me how to recognize his intentional motions and how to see when he's enjoying a activity. They could discern that when he dropped his toy, his hand tried to find it again, and I would have just thought he was squirming and wiggling his fingers. They also noticed him still trying to find us with his eyes, even though he cannot see anymore, and confirmed that he LOVES having us rub his gums (he's teething too!). He's also quite tickle-ish, but I knew that already :) He also loves being held, and relaxes in our arms and when I "Shhhhhh" in his ear.
He can't vocalize over his trach, but we think he still tries sometimes. I thought I'd post a "flashback" video of Oliver and the girls about a month and a half before we went to Portland. The videos are pretty good examples of how they would play together during those precious few months between when we got to take the apnea monitor off and when we began our unexpected PICU stay. He was developmentally delayed at that point, but was considerably more active compared to now.
We should get the genetics results back from Baylor University any day now. It won't change Oliver's condition, but there is something about having a name for the trouble, and being able to see where the problem is.
We carry on day by day, sometimes hour by hour. There are some times when I feel like we are just "getting through" this season, but God has been gracious to give me so many daily reminders and encouragements to continue to live intentionally and fully in the midst of my situation, not just in spite of it. We don't know how long this season will be, or how it will end or what challenges we have yet to face, so I am thankful to have a peaceful resting place in my Savior and Sustainer, who promised to walk with us, guide us and comfort us through our very real valley of the shadow of death.
We're working with the palliative care team with Ashland Hospice, and they referred us to a very kind hospice nurse who is collecting portraits of patients and their loved ones holding hands. She also blesses the families with other family photos as well. The girls almost cooperated!
Nora is such a little mommy. She LOVES her baby dolls. ALL of them. I think there are at least five of them that must be tucked in with her every night. She loves her "baby Auver" too.
My mom taught her how to do "chubby baby."
She likes to excercise her dollies when I do PT with Oliver,
and she thinks it is the best thing ever to get to help change Oliver's diaper.
All I asked her to do was to try on her new dress so I could send a photo to Aunt Emily. (Emily, I may have forgotten to actually send the photo - so here's the whole series!)
Well, really three castles, because my father is building a REAL one in Georgia. But since we don't get to see it very much yet while it is being built and since we live across the country, he built two for us over Christmas.
A gingerbread house?
Why would we ever be satisfied with a gingerbread house?
Complete with a Sugar Plum Fairy Princess.
The gingerbread castle only lasted a few short days until every turret was licked clean and eaten, so dad began a larger, more substantial project. We always played with cardboard boxes growing up, so it has been natural to enjoy every big cardboard box of medical supplies to its fullest, and we've gotten a TON of BIG boxes in the last month.
It is tall enough for Elsa to stand up in the middle,
wide enough for two little girls to have snack time together,
and it even has a "purple grape vine" that Elsa insisted grow all the way up to Maid Marian's window.
