Saturday, February 28, 2009
If you still want more details, keep reading. From the time I got here at around 6:15 this morning, Dexter has been having seizures every five minutes or so. The PICU docs said in rounds that they would wait on neurology's decision about seizure-controlling meds before deciding on extubation. So the funny older neurologist guy came by and was examining Dexter. In the process, he had Dexter's diaper off and discovered it was messy. The Doc grabbed a wipe and started taking care of it; I tried to step in and change my own son's diaper, but he protested and accused me of thinking he couldn't handle a little diaper change because he was a man, at which point Dexter squirted a fountain of number one all over the place. As the doc groaned and grabbed a diaper to control the flow, Dexter let out a nice green number two before the doc could get a diaper under him. The nurse and I were cracking up. The good doctor was so confident in his diapering skills, and darling Dexter put him to shame. But still, it was good of a neurologist to be willing to do a little dirty work.
Sadly, the neurology consult was nearly as messy. As Doctor M said, so far, Dexter has "giggled" at all the medications they've given him. He's afraid that the only way to completely stop Dexter from seizing is to knock him out, which he of course sees as a non-option. So they can increase the dosage of the maintenance medication and see if that will reduce their frequency, but it's unlikely to completely stop them. And he said the seizures are definitely not helping Dexter's brain recover, and they're probably damaging his brain further. Basically, neurology is saying that they can't fix him. But the doc did agree with me that extubating him and getting him home ASAP is the best thing for him. Seizures can be managed on an outpatient basis.
So I was encouraged by his recommendatin to extubate ASAP, but when the PICU team put him on another pressure support trial to see if he's ready for extubation, they did a blood gas and his carbon dioxide levels came back way too high and they said it wouldn't be safe to extubate him today. But I just want to bring him back home! I haven't held Dexter since Monday. I can't even offer him the comfort of snuggling with mom through all of his suffering. Why isn't he breathing well enough on his own??
Please continue to pray for Dexter.
Friday, February 27, 2009
Early this morning, they took Dexter off of milk again in preparation for extubation. But here it is 2:30pm and he's still intubated. The respiratory therapist gave him a pressure trial, and he didn't want to breathe on his own. She tried again, and he didn't show that he was ready to take the reins of breathing. So she's supposed to be back again soon to try once more, but if he's not ready then, it'll be pushed off until tomorrow, again. He's responsive and seemingly back at baseline; I can't figure out why he's not showing them that he really does know how to breathe. But when has anyone been able to figure out little Dexter?
I had really been hoping to get Dexter home today or tomorrow. The continued seizure activity and ventilator dependence is NOT what I needed. But when I turned on Aaron's laptop and went to lds.org, I read the title of President Monson's March message, and could tell that it was exactly what I needed. I didn't even get past the second line where he quoted Jacob--I went to that reference and cross-referenced it and was reminded that the most desirable gift from God is not the removal of trials (as much as I desire that at times!), but feeling His love. Simple.
"Look unto God with firmness of mind, and pray unto him with exceeding faith, and he will console you in your afflictions, ...O all ye that are pure in heart, lift up your heads and receive the pleasing word of God, and feast upon his love; for ye may, if your minds are firm, forever." (Jacob 3:1-2)
"Yea, it is the love of God, which sheddeth itself abroad in the hearts of the children of men; wherefore, it is the most desirable above all things." (1 Nephi 11:22)
I'm now seeking after a "firm mind."
When I typed "firm mind" in the lds.og search engine, it brought up the talk "But If Not" by Elder Wickman from a few years ago. I remember the premise of the talk being about Shadrack, Meshack, and Abednego's faith that they would be saved from the fiery furnace, but if not, they would still be faithful to God. That seemed quite applicable, so I clicked on the link. But I hadn't remembered just how specifically the talk was designed for me as I sit here by Dexter's bedside until I read the first two paragraphs. Check this out.
I feel such a reassurance that God is aware of me.
Thursday, February 26, 2009
Yesterday they said that his hematicrit is low, meaning he doesn't have enough red blood cells. Why? Because they've taken so much blood to run every test that the pediatricians, endocrinologist, metabolic doctors, and neurologist have ordered. Today Dexter's resident doctor informed us he was to the point of needing a transfusion. So you have to give him blood because you took his blood? It's hard not to think that he'd be better off at home in his bassinet!
This morning Dexter was having seizures increasingly frequently. The neurology team came by and Dexter was very cooperative--he showed them exactly what he'd been doing, and they confirmed that he's having seizures. I was telling the doctor about how the onset of his seizures last week was correlated with increased sleepiness, and he was telling me the irony of seizures. Seizures can make a kid tired, so it's good to give them medication to let the brain rest. But seizure meds also make a kid tired. Alas.
And in case any of you are wondering what's actually wrong with Dexter, so are we and a lot of really smart specialists. It still seems to be all questions and no answers beyond "his brain didn't form quite right and doesn't function quite right."
Tuesday, February 24, 2009
Another thing that has everyone confused is Dexter's Sodium levels. When they ran all the initial tests in the ER yesterday, his Sodium levels came back dangerously low. Yep, he was hyponatrimic. They said that could be an explanation for the onset of seizures and the unresponsive behavior. They gave him a load of Sodium via an IV, and by last night, the levels were back to normal. But as they've run through the list of all the things that might make Na drop so drastically, none of them seem to fit. He hasn't gotten significant amounts of free water, he doesn't fit the picture of cerebral salt wasting, his thyroid tests were normal so they don't think it was an ADH imbalance. Essentially, they said they have no idea. And even weirder, they said he returned to normal levels from extremely low levels with hardly any intervention from them. They didn't quite understand how he could have corrected so quickly. But Aaron, the lab guy, has despised the chemistry analyzer in the lab since they got the new machine upon moving to the new hospital over a year ago. That Cobas 6000 (that's the name of the machine) was always giving wacky Sodiums; I remember him ranting and raving about it and getting home late because he was retesting every Sodium back when he was s full-time lab guy. Last night when they had to repoke Dexter about 7 times to retest the Sodium because the numbers were a bit wacky, Aaron declared that his rage against the Cobas was now "getting personal!!" Again, it seems that Aaron knows a bit too much for his own good.
Monday, February 23, 2009
22. Aaron's professor was merciful and emailed Aaron "strongly suggesting" that he not take his test Wednesday. Whew--he was supposed to study all day but only got in about 20 minutes today. What a relief.
Sunday, February 22, 2009
Are you ever burdened with a load of care? (YES!)
Does the cross seem heavy you are called to bear? (Uh-huh.)
Count your many blessings, every doubt will fly. (Sounds good!)
And you will be singing as the days go by. (OK!)
So here goes naming those blessings one by one. (In no particular order.) When you start to think about it, there really is more to be grateful for than you can count.
1. I'm grateful for Jesus. (When things got tough yesterday, I told Xander and Elodie we were going to play the Name-What-You're-Grateful-For Game, and this is the first one Xander said. Anyone wonder why Christ admonished us to be like little children? And Elodie's first one was, "I'm grateful for Mommy." Both of those answers melted my heart and put things back in perspective.) I really am grateful for Christ's loving mercy and generous offering of forgiveness. It's pretty easy to see your weaknesses when you're under pressure, and I've been reminded daily how much I need Christ's Atonement.
2. Xander. As I just mentioned, Xander is such a blessing to me. As I was filled with concern looking at Dexter, tears were starting to form and Xander asked, "Why are you sad, Mommy?" I told him I was worried about Dexter, and Xander gave me a big hug and said, "I'll say a blessing for Dexter" and then offered the sweetest prayer. "Aaaaah" (in your best baby shower gift opening tone) is about all you can say.
3. Aaron. I could devote a whole Monette-lengthed blog to this one (which I may do one of these days, so remind yourself to skip it if you can't handle the sap), so I'll just say that he is the strength I need. I feel so blessed to be his wife.
4. Bananas. Ever heard that they get rid of headaches? They really do work.
5. Technology. Like the means to pump milk out of me and into Dexter since he can't do it himself.
6. Aaron has a job that lets him work whenever he can and they pay him good money for it. And he's in school to learn the profession of his dreams.
7. Dexter wriggled his back a little when I was holding him and massaging him today--he's a touch (pun intended) more responsive today than yesterday.
8. Aunt Melayna lives close.
9. Grandma and Grandpa live close.
10. Generous, supportive, thoughtful friends.
11. Chocolate that's 75% off after Valentine's day.
12. Tax returns that return more than you paid because you're in the starving student phase of life.
13. Elodie ate her vegetables at dinner without a fight (and without chipmunking them for an hour or more after dinner).
14. The young women I teach at Church thoughtfully participate in the lessons every week. I love them!
15. The Comforter.
16. Elodie's positive attitude when she was out-both-ends sick for 5 days last week. Every time I asked her how she felt, it was, "I'm fine, I'm better, I'm not sick anymore." Although hearing "Mommy, please hold me" for the 200th time that day reminded me that she really wasn't feeling as great as she claimed.
17. The motivation I needed to keep one of my New Year's Resolutions: writing in my journal at least once a week. Meredith told me that blogs count as journaling back when she was convincing me to start one, so woo-hoo! Unfortunately my goal about being a better housekeeper hasn't come to fruition quite yet.
18. Weather warm enough for a picnic at the park last week.
19. Ice cream. Mmmmmm.
20. Uplifting music.
OK, like I said, there are far too many to count so I'll stop there to enjoy the blessing of a cozy bed so I have the energy I need for the week!
Saturday, February 21, 2009
When the occupational therapist came for her first visit this week to work with us on Dexter's oral feeding, those myoclonic jerks were completely disrupting his ability to stay latched on, let alone suck-swallow-breathe. And then he got really sleepy after just a few minutes of being awake which didn't help him either. She wondered aloud if the myoclonus was interrupting his sleep so much that he could never actually get rested, making him completely exhausted all the time. And the physical therapist, who came on Thursday, saw how difficult he is to calm and how he doesn't appreciate the changes in position that physical therapy generally entails. She affirmed that Dexter is a tricky one and said she'd try to come back next week with more ideas.
Wednesday, Dexter got his first dose of the medicine, which is a type of Vitamin B, that the neurologist thinks may help reduce the myoclonic jerks. Thursday the neurologist called and talked to us about what she's doing to try to get a diagnosis. He's going to get a spinal tap as soon as possible to run more tests, and she wants him to meet with a metabolic specialist. I shared our concerns about the increased frequency of myoclonus, so at least she's aware of that.
Then Thursday evening I noticed something new and disturbing, and once again when I asked Aaron to confirm what I thought, he unfortunately agreed with me: these new episodes look seizure-like. He gets completely rigid; every muscle goes tense, including face muscles; his eyes pop open looking very distressed; he purses his lips and makes spit bubbles while his hands do this rhythmic movement. It's scary to me and rough on him--he makes this little whimper afterwards and kind of sputters and coughs. Oh, Dexter! I haven't timed how long they last, but it seems like a long time to me. In reality it's probably 30 seconds or so. Friday I called to talk to the neurologist about it, and the nurse I reported to said she'd pass it along and call back if anything needed to be done right away. We haven't heard anything.
Today, Dexter's myoclonic jerks are very infrequent. Maybe the medication is kicking in. And he doesn't cry and arch his back when I change his diaper or mess with his G-tube. Or when I yank tape off of his cheeks. Or when I gave him his first real bath since his surgery (the steritape finally all fell off yesterday, it was about time!). Being more tolerant of being messed with might sound like a good thing, but not when he's as limp as a rag doll and completely unresponsive to such aggravating stimuli. It was so scary. And he looks so pale today. The neurologist said this medicine wasn't supposed to have side effects since it's just a vitamin. But Dexter's his own little unpredicatable man--maybe this is his reaction to it? Or is it just the course he was already on since we'd noticed his symptoms getting worse this week? Who knows. I wondered if I should take him to the emergency room, but what answers would they be able to provide? I wish it wasn't the weekend so I could bring him in to the neurology office. We're praying that we'll know what we need to do for him. We put our trust in the Lord and hope that he'll get more responsive soon.
Tuesday, February 17, 2009
Wednesday, February 11, 2009
Elodie got a little sick right after we brought Dexter home. Thursday we took her temperature with an axillary thermometer and she had a little temperature--38.2. The next morning I was commenting to her that she didn't seem to have a fever anymore. She pointed to her armpit and said, "Yeah, I had a fever in there."
Xander is into quantifying things lately. After dinner, we were eating the ice cream generously given to us with the dinner. Xander wasn't satisfied with the size scoop I gave him. "No, I want a lot! I want 83mls." He defnitely has his ears tuned when I'm talking about his little brother. I mean, he and Elodie pretend that their baby dolls go to the hospital "to get surgery."
If only he was that agreeable to the bottle feeding attempts. When he is in just the right wakeful yet calm yet hungry mood, he does really well (really well being a relative term describing the condition in which he only gulps and forgets to breathe 2 or 3 times at the beginning and then takes more controlled yet very intermittent sucks while remembering to breathe and stay latched on until he wears himself out). As you may have guessed, Dexter is not in just the right mood each of the three times I attempt to bottle feed him everyday. On Friday, the morning and afternoon attempts were so frustrating for both Dexter and me that I nixed the evening feed altogether. It was so disheartening to see him doing worse than he had been a week before. When my dear visiting teachers came over that evening to bring me dinner, they asked the simple question, "How are you doing?" and I started to cry. I tell ya, when someone is too nice to me, the floodgates open. Well, I recovered and regained perspective, and Saturday and Sunday I was more careful to notice when Dexter was ready to try the bottle, and the feeds went really well (see above). Since then, he's had his shining moments and his gagging moments. I'll just sum up by saying that Dexter has DEFINITELY confirmed our decision to have the surgeons install that G-button. He couldn't survive without it.
Wednesday, February 4, 2009
Tuesday, February 3, 2009
Monday, February 2, 2009
While we're on the subject of Elodie, just look at how much she's benefitted from going to other mom's houses everyday. My friend Kara, who is an experienced mother of a daughter, managed to get Elodie not only to cooperate with having her hair done, but also to somehow leave it in longer than 5 minutes--it stayed in the WHOLE DAY! Kara taught me her tricks so hopefully my daughter can now look a bit more respectable and girly, despite the fact that she barely has enough hair to get in her eyes. Yep, these are the first real pigtails of her life. Thanks, Kara! And thanks to all of my great friends from Church who have taken such good care of my kids everyday! It feels like Zion to be surrounded by such unselfish, pure-hearted people! You are all an answer to prayer!