1

Our Christmas Miracle

Matthew had a rough week last week! Sunday his vomiting rose to a new level, as did his unhappiness. The poor baby was just irritable all week long. He didn’t want to be held. He didn’t want to be put down. He was tired and wouldn’t sleep. By Wednesday, I noticed a significant decrease in the number of diapers I was changing and that very few of them looked wet at all. We needed to head into the hospital to re-do some of his lab work (to keep him up to date on the transplant list), so our super Dr V had us stop by to look him over. Everything looked fine and his labs didn’t show any signs of dehydration. We went home. That night I slept  three and a half hours. The rest of the night I was trying to console a very unhappy Matthew. The next night I slept for one hour and only because Rusty held him for that hour. The next night, I slept for 40 minutes. Poor Matthew just kept crying. No amount of rocking or swaying or bouncing or swaddling would calm him. At 5 AM, I picked him up and noticed his hands were hot. After checking his temperature 4 times to confirm that I was taking it right, I woke Rusty up and told him that Matthew had a fever of 103. Of course we panicked. We’ve been told that fevers are dangerous. Poor Dr V got an early morning text and as we waited for her to respond we got ready to head to the hospital. Dr V  suggested a one time dose of Tylenol (Tylenol is digested by the liver and we don’t want to irritate his liver) and to wait an hour to see what happens. So we did. His fever came down a degree in that hour. We waited until 8 for our pediatrician’s office to open and then Dr V  called to set up an appointment for us to go in and get Matthew checked out. We went in at 9:10 and Matthew’s fever had already risen to 105. His nurse panicked and I quickly messaged Dr V, who again swooped in to keep everyone calm. She called the office, talked with the doctor, and they worked out a plan. In office tests were run for the flu and for Strep and Matthew was given a dose of Motrin. The tests came back positive for the flu and we were sent off to the ER at our favorite hospital. I spent the entire day in the ER. Matthew was so dehydrated that they had to push 300 ml of IV fluids through him before they were able to start the IV pump. His condition requires that multiple blood samples be taken to make sure that everything stays in check. For hours, he cried. Then finally he began to settle. And, as is typical of an ER, every time he settled someone would come in to check something or give him something. Around dinner time, he was admitted to the hospital and moved up to a room. For most of the day, his fever hovered between 101 and 102, but shortly before bed it finally broke. He stayed in the hospital until Sunday, but his fever never came back up and he continued to remain hydrated. The doctors knew of his vomiting problems and were hesitant to let him out of the hospital until they were sure that it wouldn’t cause him to become dehydrated again. Consequently, they started him on continuous feeds. It worked well for a while, but at 10 hours in he vomited. Rusty tells me it was ugly. The nurses were nervous. He apparently shot 6 feet out of the bed while lying down. But, since his numbers were all stable and Dr V approved, they let us go home.

So. Here is the miraculous part. During it all, during a week of diarrhea and increased vomiting and then a day of a fever, Matthew’s ammonia never rose above a normal level. In fact, the highest it got was in the 30’s. As if that wasn’t enough, Matthew hasn’t vomited one time since leaving the hospital.

102

God has blessed us time and time again. As we leave 2013 behind us, we have so many things to be grateful for.

For the pediatrician in his birth hospital that caught the first signs of Matthew’s elevated ammonia.

For the NICU nurse who worked her butt off for 8+ hours trying to pull him out of his ammonia induced coma and settle him safely into a medically induced coma

For Dr V and the DC team who collaborate to manage Matthew’s care

For the team of PICU nurses who ensured that he was under their watchful eye 24/7 for over 3 weeks.

For the many friends, family, and strangers who have given financial and spiritual support

For Matthew’s amazing sisters, who dote on him like he’s their little baby doll, who, when they wake up, ask first where Matthew is; who won’t go to bed without telling him good night and wishing him sweet dreams.

For 7 amazing months with Matthew, watching him grow and break boundaries, for 7 months to love him.

For getting through our first fever without any further damage to Matthew’s brain.

We look forward to 2014, to many more miracles, to a new liver and a chance at a long life for Matthew.

0

How?

Over the years, I have seen many special needs children cross my path: at the grocery store, the park, the mall, in my classroom. If your eyes are open, you see them. I could never help but ask myself “How do they do it? How do those parents deal with a child that needs that much attention?” Granted, I had no idea what a special needs child required in terms of care, especially in comparison to a ‘normal’ child., but it seems like it would be a lot. I couldn’t help but feel pity for them and be thankful that I didn’t have a child like that because I just couldn’t handle it.

Soon after getting married, Rusty and I took a marriage bible study course, trying to start our marriage off on solid ground, on godly principles. I remember one night, the wife of the group leader saying something to the effect of “Don’t ever tell God, ‘I can’t handle X’ because X is sure to come your way.” For her, it was infidelity. For me, I immediately thought and then quickly pushed away “a special needs child.” Now, I’m not completely sure that this is really how God works. But, I do know, that He pushes us beyond what we think we are capable of. I never thought that I would be able to handle what has been handed to me. I honestly don’t feel like I’m handling it at all. And, truly, there are days where I do everything that I can to avoid doing what needs to be done for Matthew, because I feel like if I’m not mixing bottles or measuring medications then he’s ‘just a normal baby’ again.

So, ten years after that bible study group, I find myself in the grocery store.. at the park.. in the mall.. in church, and I’m getting that same pity filled look. “Poor her. I wonder how she does it? And with two other kids, too!” I’ve even been asked how I ‘do it’. I’ve spent a good long time trying to figure out how to answer that question. How do I get by? How do I function and take care of the girls and the house and all of that other day to day stuff? The best that I could come up with was, “I don’t have a choice. I just do what needs to be done.” Which is true, but it isn’t the entire truth.

This past Sunday, our Pastor introduced his sermon with an excerpt from a Charles Spurgeon sermon. I couldn’t tear myself away from the screen. The words he was speaking were the words that I had been searching for. How do I do it? I’ll tell you. Immanuel. God with us. It is God alone, that has kept me standing. God alone, that has kept Matthew stable. God alone, who carries each and every special needs child and their parents, whether they know it or not.

Here is the video that was shown last Sunday: God with us. It is less than 4 minutes long. Watch it. It is powerful.

That video made me wonder about the rest of the sermon. I did a little digging and found the entire sermon. It’s LONG. If you want to read it you can find it here. Below are a few excerpts from that sermon that are still echoing around in my head. Little reminders of how I manage to get through each day.

“Believer, He is God with you to protect you! You are not alone, because the Savior is with you! Put me in the desert,
where vegetation grows not—I can still say, “God with us.” Put me on the wild ocean and let my ship dance madly on
the waves—I would still say, “Immanuel, God with us.” Mount me on the sunbeam and let me fly beyond the western
sea—still I would say, “God with us.” Let my body dive down into the depths of the ocean and let me hide in its caverns—
still I could, as a child of God say, “God with us.” Yes, and in the grave, sleeping there in corruption—still I can
see the footmarks of Jesus! He trod the path of all His people and His name is still, “God with us.”

“Immanuel.” It is wisdom’s mystery, “God with us.” Sages look at it and wonder. Angels desire to
see it. The plumb-line of reason cannot reach half-way into its depths. The eagle wings of science cannot fly so high and
the piercing eye of the vulture of research cannot see it! “God with us.” It is Hell’s terror! Satan trembles at the sound of
it. His legions fly apace, the black-winged dragon of the Pit quails before it! Let Satan come to you suddenly and do you
but whisper that word, “God with us”—back he falls—confounded and confused! Satan trembles when he hears that
name, “God with us.” It is the laborer’s strength—how could he preach the Gospel, how could he bend his knees in
prayer, how could the missionary go into foreign lands, how could the martyr stand at the stake, how could the confessor
acknowledge his Master, how could men labor if that one word were taken away? “God with us,” is the sufferer’s comfort,
is the balm of his woe, is the alleviation of his misery, is the sleep which God gives to His beloved, is their rest after
exertion and toil.
Ah, and to finish, “God with us” is eternity’s sonnet, is Heaven’s hallelujah, is the shout of the glorified, is the song
of the redeemed, is the chorus of angels, is the everlasting oratorio of the great orchestra of the sky! “God with us”—

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Roller Coaster: Part 2

When I write, I go over everything in my head first. I actually plan what I’m going to write several times in my head, then I type it out, and proof-read it a few more times. Yesterday’s post, underwent this same process. At  the end, I wasn’t happy with the post but I couldn’t quite figure out what was missing or wrong, so I posted it anyway, as life was calling to me. A few hours later I figured it out.

The post was not what it was intended to be. I was trying to give background information and got lost in the details. Somewhere in all of that typing my original intent was lost. I’d like to clarify, for my own peace of mind.

First, all of that rambling about when the spit up started and what we’ve done about it had three purposes. One, to let you know what’s been going on. Two, to help explain why I’ve been unable to blog in a while. And three, to explain why doctors appointments, or venturing out of the house for any reason at all, can be tiring, and how that adds to the roller coaster.

Secondly, I missed the mark a little bit in my explanation of our typical doctors appointment. Honestly, I’m not sure what the point of that was. I think I just got on a roll with the complaining and kept going, completely unable to stop the runaway snowball.

Yesterday’s post was not supposed to be a list of complaints, as the title indicates. It was supposed to share the emotional roller coaster that I’ve been riding for weeks and weeks. The ride looks something like this: I spend time with my beautiful son. I love him and see all of the amazing things that he can do. I watch him grow and I am completely astonished by him. Then we have a series of doctors appointments in which Matthew does not show them these same skills. Because they didn’t see it, they don’t understand what he is capable of, and so, they tell me all of the things that he still needs to over come. For the next several days, all I can see in him are the things he is not doing and I’m sad for him. I’m sad that he has so much work to do, that I have to teach my baby to touch his toes or put his fingers in his mouth. I wonder if he will ever catch up, if he will ever be able to use his hands correctly or talk or eat.. the list goes on. Things look more and more hopeless. But then his therapists arrive and they share all of the good about Matthew and I can once again see those things in him.

I’ve been on this ride for a while now. It wasn’t until talking this over with one of his therapists the other day, that I even realized what had been happening. Of course his doctors don’t know his capabilities. They see him for a matter of minutes, after he’s been poked at, when he’s tired and hungry and cold, when he’s distracted by his sisters. His therapists, on the other hand, have an hour with him, in his home, while his sisters are otherwise occupied. Seeing the back and forth of my emotions and realizing the cause of my stress gives me power to control it. I don’t have to be on this roller coaster any more.
So, I’m sorry for that complaining rambling pointless post yesterday. It was not what I wanted to do. I did not set out to make it look like all of his doctors are horrible.  I like Matthew’s doctors. True, there are some I like more than others, but they are all wonderful to him. They truly care for him. They each have a specialty that he needs.

If only they could keep to a schedule better 🙂

2

Roller Coaster

It has been a while since I have posted here. It isn’t because I have run out of things to say, or tear jerk-er posts. I have easily drafted five or six posts in my head. But, these last several weeks, probably close to two months, have been chaotic. I think I posted on Healing Matthew’s Facebook page a while back about his decline in oral feeds. Well that was just the beginning of a long, mysterious road that we continue on today.

I’ll start at the beginning. Matthew was progressively taking more and more volume by mouth. Then sometime around 3 months he began vomiting after his feeds. We ran through all kinds of theories. The first time he did it, we were in DC, so maybe it was the stress of being on the road and out of his normal environment. Then, as it continued at home, we thought “Maybe it’s because of his medicines” and played with giving him meds before food, after food, with food, one at a time, etc. Could it be motion sickness? Too much food? A milk allergy? We thought of it all and we tried it all. We met with a Pediatric GI and had an Upper GI X-ray done. We consulted with his transplant doctors, his pediatrician.. any doctor who might have something to say. We added Prilosec to his list of daily medications, then doubled the dose, then tried another medication, then weened it out when it only made things worse. And during all of this, Matthew grew to dislike food more and more. He stopped drinking his bottle. Then he stopped taking his paci. He swatted at your hands if you touched his face. He doesn’t put his hands or toys in his mouth.

Now, this isn’t just any old baby spit up problem here. I’ve been caring for infants for 14 years. I’ve seen spit up. Poor Matthew, isn’t ‘just spitting up’. Here’s your gross picture: He’s projectile vomiting 20-40 ml every time he eats. Flying out his nose, splashing off the walls, puddling on the floor, vomiting. You’d think he had been out partying too hard the night before 😉 It’s scary for him. It’s scary for us. He’s left gasping for breath, shaking, crying, confused, and needing yet another clothing change.

NG

4 Months Old

Finally his doctors convinced us that the NG tube could likely be the source of his woes and that we should allow them to place a PEG in his stomach. Well long story short, we get to the surgeon’s office and she tells us that he’s too little for a PEG and needs a G-tube (which I DID NOT WANT). At this point, we are desperate, so we agree to the surgery. Matthew comes through the surgery like a champ. His ammonia levels never spiked. In fact, he left the hospital at a lower level than he entered at. He recovered like a champ too. I was ecstatic. He wasn’t spitting up. His ammonia was holding steady. Everything was as it should be. Until he was given his formula. He vomited about a half hour into his first formula feeding. It’s been business as usual ever since. He has to eat. He cries because he doesn’t like the food or knows what is coming. He settles. He falls asleep. He pukes. He cries. I cry. He settles. I clean up the puke. We start all over again.

This past month also brought with it follow-up appointments with a bunch of his doctors. I think we averaged 3 appointments each week. I like to say that our appointments are a bunch of ‘hurry up and wait.’ I get up early, pack several changes of clothes (that spit up thing again!), pack meds, his next feeding, his pump, and a change of clothes for Ruth (Could potty training take any longer?). Then I get the girls out of bed, shove something at them that doesn’t really pass as breakfast, send them running out the door and into the car. We wait in traffic. We park in the parking deck. I carry that baby carrier on one arm, the 20 pound diaper bag on the other while corralling the girls through the deck, across the campus, and to the security desk at the hospital (90% of his appointments are at the hospital). Then I try not to lose any of them in the crowds as we make our way to the doctors office of the day. We wait and wait to see the doctor. A nurse weighs Matthew, measures his length and head circumference, and checks his blood pressure. We shuffle into a room where I go over his meds and dosages. The nurse leaves. We wait. A doctor homes in, asks about his meds and dosages, tells me how far behind other children he is and sends us home. It’s now 1:30 and our appointment was at 10. So we rush home, shovel down some food and shuffle off to naps. Repeat the next day, except this time the doctor is going to shrug their shoulders at the ‘spit up’ situation not being resolved, or they are going to suggest another surgery, or say ‘just keep on keeping on’ or ‘that’s what we would expect to see given his level of brain injury’. I rarely leave these appointments smiling or thrilled with the information I’ve been given. More often than not, I’m wondering what the point was. Why did I drag my tired and hungry kids out of the house for that? Did I really need to hear, again, that Matthew isn’t perfect? Did he really need to be weighed again? I mean, can’t we just call the other doctor in the building and ask them what his weight was? It isn’t like it changed in 24 hours.

We do that 3 times a week and then we meet with his therapists in our home. We love his therapists. They come in and hold him and talk to him like he’s a ‘real baby.’ They spend an hour with him. They spend an hour with me,  telling me all of the things that he CAN do. They tell me and show me all of the things that a baby his age should be doing and then they show me how Matthew can do those things too. They tell me what he needs to work on and show me how to help him do those things. They spend time with the girls. When those appointments are over, I always have a smile on my face.

We’ve heard over and over again from friends that “Matthew is perfect.” And, while I know that they mean well, it’s difficult to hear. He’s not perfect. I could rattle off a list of all of the things wrong with him. Goodness knows, I’ve heard it enough times. I’ve seen it enough times. And when they say “He’s perfect”, my mind unwillingly runs down the list of imperfections. But, he IS perfectly Matthew. He is exactly how God intended for him to be. He’s an amazing little fighter.

Physically and emotionally, I am exhausted. I am looking forward to this lull in his appointments. I am ready for a break from the roller coaster of “he does this, he doesn’t do this.” I am looking forward to staying home and taking time to focus on his therapy, to focus on his sisters, on letting their relationship grow, on watching the girls love him and care for him. I want to spend my days hugging him and hugging his sisters and thanking God for every little moment that He has granted me with them, instead of running from one place to another.

6 Months Old

Matthew’s transplant awaits us. I’m hoping to sneak in a little rest  and get in a little more blogging before it comes. Not that I won’t be blogging with transplant! You will all be kept in the loop as that progresses. For now, we wait; Trying desperately to be patient, as we are both anxious and terrified for the changes that the surgery brings.

(Transplant is another emotional roller coaster!)