Ok...

So I guess I forgot how absolutely exhausting it is to sit in the hospital and do ABSOLUTELY nothing! I fell asleep and forgot to update the blog yesterday, and proceeded to take a three hour nap this morning. I'm sorry as I gotten quite a few phone calls and emails, so I have worried you guys unjustly. But I do have some good news. I think things are looking up.

• We did a urine specimen; and it was fine, not sure where the blood was coming from??
• Matthew is now 100% independant in the emptying his bladder department (at least since 10/30/10 @ 2pm). Just as quickly as the switch got turned off almost 2 weeks ago; it mysteriously got turned back on yesterday. So I guess I was wrong about the re-tethered cord thing. A hit to my pride; but I'll take it anyday over surgery for Matthew. Dr. P was right (again) and it sounds like it doesn't mean that this can't happen again. I guess the nerves can take up to 1 year to figure out what they need to do.
• We tried Matthew back on his feedings yesterday; and with in 1/2 hour he was wretching again. So it was back to IV fluids. And the retching quit. Until his 8 oclock meds. We put his meds in the j-tube also; and within 2 minutes of administering his meds, he started vomiting. He slept perfectly all night, with NO mucous problems and woke up this morning with CLEAR lung sounds. We gave 1/2 of his 8 am meds and he started violently retching. We let him rest about 1/2 hour and then I decided to be creative and give his medications in his g-tube (vs the j tube) to see if that made a difference. He absolutely did perfect with it.
  
• So we talked with the GI doc and the hospitalist this morning. We agreed to put all meds in the g-tube, and to try the j-tube for feeds 1 more time. If it doesn't work, we feel it is reasonable that all the excess mucous/retching is for some unknown, medically unexplainable reason linked to to the j-tube. Prior to the j-tube insertion, Matthew had issues with reflux/vomiting but not retching (they are two separate, very distinct issues). We will take out the g/j tube (at the bedside) and place a g-tube. If vomiting is still an issue (which it realistically may be) and as long as it is not accompanied by retching, Matthew will need a fundoplication surgery, in which to wrap the stomach around the top of the esophagus; which makes reflux not be an issue. The fundoplication is something we've tried pretty hard to stay away from, but we are reevaluating his need for this surgery. We are a couple steps away from that, and I am trying to take one step at a time!!

As I am sitting here writing this, Matthew's feedings have been restarted in his j tube for about 20-30 minutes. He is already starting to sound mucousy and is coughing. I have a feeling plan B (or P as I call it..we've been up and down the alphabet of plans with Matthew )will be happening at some point today.

As I was finishing typing this..Matthew threw up a ton of mucous. After 13 cc's of formula. 13 cc's. and now his tube feedings are off. The nurse is off to talk to the Dr. She will pull the g/j and put in a g tube.. we'll see how this goes.

Or Mabye Not

So Matthew woke up this morning, and immediately started retching, and retching, and then vomiting. And then vomiting blood. He didn't stop for over an hour. His food is off. He is getting IV fluids. We are waiting to see the doctors. And to top it off, when I catheterized him this morning, I got bloody urine back. We have no clue what is going on. Guess he didn't want to go home after all. I'll update later after we have a plan in place.

10/29/10

Well, mad mama got some sleep and was able to take on the day. I spoke with the neurosurgery resident in the early a.m. and said I would like to speak with the neurosurgeon. He said he would do his best to get him up here to talk to me.

The residents all rounded and there was not much new to talk about. Matthew's vomiting, and inability isn't any better really, but at least we have a plan in place. We are going home with more medical paraphenelia than I know what to do with. We will be going home on some 2 new medications also, one for the vomiting, and also zyrtec to see if that helps with the amount of mucous (we are questioning allergies). We the hospitalist rounded, she was very surprised to see that Dr. P hadn't rounded. See Dr. P is a very good doctor, and a very busy doctor. But this was unlike him. She put a call into his office to say that we very much needed to speak with him before discharge.

Around 2 pm Dr. P came through. While I never got a straight answer as to why he didn't round any earlier than today, he gave me a good explanation of why he didn't think his cord was really tethered. It is a long explanation, and it has to do with gravity, and the way Matthew was laying in the MRI table, and the fact that the end of the nerves looked like they had some "slack" in them, and were not pulled tight, but rather just laying there. It's very hard to explain and put into words, especially when I had three nice diagrams drawn on the white board just to explain it. He says that he has never had one retether, and that it is virtually impossible, but he feels we should give it more time. He said patients such as Matthew can loose bladder function for a couple of months, and then regain it back. He is confident that since Matthew gained his ability to pee back so quickly after surgery, it should not be a problem again, but it takes time for the nerves to fully heal. He believes that as his bladder function comes back, his bowel function will follow suit.

So all in all, it sounds as if we will be cleared for discharge in the morning. We have a lot of teaching with new equipment to do, and we also need to get an EKG before we go home, as the new medication he is on can affect the heart (wonderful!..not really). I would guess it will be late afternoon, before we get back on the interstate and head for home, but oh, it will feel so good to be there.

The picture above is from this stay, and taken with my cell phone; and I have a few others that I need to take off my cell, but am too tired to do so right now. It will have to wait until another day :)

Mad mama

I told myself, I wasn't going to do it this time. I was going to be the sweet, but direct mom, who didn't let her temper get the best of her. Well, I lasted 6 days. This evening, my temper has gotten the better me.

See this morning, around 6 am, the neurosurgery resident came to the floor and said that Dr. P (our neurosurgeon) doesn't really think Matthew's cord is tethered, even though the radiologist said it was, and that Dr. P would be up today to explain what other tests we needed to do to confirm one way of the other.

Then the other specialties started floating through.

1st the primary resident, then the GI resident, then the pulmonologist. While the pulmonologist was in the room, Matthew performed one of his coughing/puking/retching episodes, as if cued to. The pulmonologists remarks were "wow that's really impressive". Not what you especially want to hear, but I was so thankful she was able to see what he has been doing at home. She thinks that he has a good strong cough and has the ability to cough up what he needs to, but not get it anywhere. So she ordered a pulmonary vest for him, which is similar to the percussion therapy, and "cough assist". I'm still learning about this, but essentially it helps Matthew by emulating a cough. It pushes air into his lungs and then pulls it back out. It has pressure settings. (Note to self: I need to take pictures of these things). She thinks our vomiting episodes may be actually issues of mucous and not feedings. So we will have our work cut out for us at home. Breathing treatments twice a day, vest treatments twice a day and then cough assist twice a day also. Along with meds and such. My morning routine just got a bit longer.

Next the the GI doctor accompanied with the GI resident, and they had no new plans for today. They were happy with the new things pulmonary had decided and helped with his Robinol dosage. Robinol helps dry secretions, and Matthew didn't need as big of a dose as they were giving him. So we halved that, and that seems to be helping.

Then the hospitalists rounded. They thought from their standpoint that late today or early tomorrow would be a good time for dismissal AS LONG AS we could get a plan on board for Matthew's urinary retention/possible re-tethered cord. They felt we had adequately addressed the vomiting issue; even though he is still vomiting some, we have an idea of why, and how to help him minimize this. We decided to up the rate of his feedings ever so slightly, as to give Matthew some time off of the feeding pump.

Shortly after lunch, urology rounded. They were comfortable with the plan for Matthew; cath as needed until we can resolve the urinary retention, and see our urologist in Lincoln.

Then we waited. And waited. And waited. And the longer I waited, the madder I got. See if we are going to do something about this tethered cord, whether it's there or not; we gotta get ON THE STICK! Tomorrow is Friday. Nothing of value happens in this hospital over the weekend. No MRI's, no surgery unless ABSOLUTELY emergent. We needed to get any further testing scheduled as soon in the day as possible; because Fridays are busy in the OR with everyone trying to get things done before the weekend.

At 6:30, when we had seen no neurosurgeon, I knew we weren't going to. I asked the attending resident, and her basic response was that we couldn't make Dr. P come see Matthew. I understand that, but how about a phone call. You can call on your way home in the car. I just want to have a plan. A plan that gets this fixed for Matthew as quickly as possible, so we don't permanently lose bladder function. A plan that doesn't have us sitting in the place it is easiest to get sick (i.e. the hospital) any longer than we need to. I'm not real excited about sitting here all weekend, but I'm not excited about having to come back for more testing after discharge. I'm impatient. The field of nursing I work in doesn't allow for anything less than quick decision making and making things happen in a timely fashion. It makes it harder for me to sit and be patient. And even harder when it's MY BABY. And MY BABIES bladder and pain control.

I plan on getting some answers tomorrow. Sooner vs. later. Asking some VERY pointed questions to Dr. P (if we get to speak with him); hopefully with tack and grace. But in the mean time; I'm gonna sit here and steam and simmer. Cuz this mama is mad.

10/27/10

Matthew is asleep; sleeping so peacefully. That has been one thing I have furiously protected while in the hospital. The nurses have been told that midnight-6 am is sacred. No interruptions, no vitals. Everyone has been so good; if they need to do something in the middle of the night, they are so quiet, if fact I don't even hear them. Matthew has kept his schedule so nicely; which is something that doesn't always happen in the hospital.

Today, Matthew's MRI was scheduled for 2:00 pm. Around 9 am the anesthesiologist came to talk with us. He said we were going in 10 minutes. I was a bit shocked but happy to get the MRI over and done with. Matthew was back around 12:00 and did wonderfully for the procedure.

Here's the updates for the day:

Urology: did not come through today. Kidney US was fine as reported by the hospitalists (they are like the general pediatrician while you are in the hospital). We don't need anything further from them.

Pulmonology: did not come through either. His CT scan was okay from yesterday, and we have started Matthew on CPT (chest percussion therapy), which basically is a machine that is put over his lungs and vibrates. It helps shake the gunk out of his lungs so he can cough it up, thus helping prevent a pneumonia. We will go home with one of these devices.

GI: we started Matthew's feedings back up after the MRI, and GI is starting a changing out a med with a new medication that will hopefully help with the vomiting cycles he's been having (called "cyclic vomiting") This med comes highly recommended by his Minnesota epilepsy doc. He says he sees this help a lot of kids that have similar issues as Matthew. We also adjusted calories for Matthew with the help of the hospitalist, as she feels he is getting too many calories; and gaining weight too quickly (first we can't gain weight and then we gain too quickly; geesh)

Neurosurgery: The resident came through this afternoon. The hospitalist had me come out to the desk to read the MRI while we were figuring out calories for Matthew, and the result came back saying he had a tethered cord AGAIN!! This would explain why he hasn't been able to empty his bladder again, and is having "poopy" issues. His symptoms mimicked those he had this spring prior to his tethered cord surgery. I was told by the neurosurgeon last week the recurrence of his type of cord tethering was "virtually medically impossible". Leave it to Matthew. The resident stated he would relay this information to our neurosurgeon, Dr. P, and get back with us. I waited all afternoon, with no site of Dr. P. The nurse finally called the resident around 7pm and he told the nurse that Dr. P would be by in the morning, but that he did not agree with the radiologist's findings, and will maybe do a "prone MRI" (Today's MRI was a "sacral and lumbar MRI".) I was really hoping to see the neurosurgeon today and get surgery scheduled ASAP; as in tomorrow. I'm not sure what will happen with this tomorrow.

From a vomiting standpoint, Matthew has done well. No vomiting for 48 hours and he is at his full strength of feedings for home. The hospitalist asked me today if I would be okay working on upping the rate from home; as his current regimen he is off the pump for 6 hours during the day. I excitedly said yes. So if it weren't for the whole bladder/questionable tethered cord thing, I think Matthew would be ready for discharge tomorrow. But I also want to get to the bottom of the urinary retention stuff too.

This evening, Steve went to parent teacher conferences, and I got to join in via speaker phone from Steve's phone. It was wonderful to hear all the good things my kids are doing at school. Their grades are good, and the teachers all had such positive things to say about them. It made the end of my night great!! Steve took them out for ice cream afterwards to celebrate. I am so proud of my kids!

As I sit here tonight, I am reminded of where were a year ago. Today started the anniversary of Matthew's 40 day stay in the hospital last year. That was a very scary, scary time for us. Tomorrow will be the day 1 year ago when Matthew was emergently taken to the PICU and put on a ventilator because his seizures would not stop and he was so sedated that he couldn't breathe on his own. I went back today and with tears in my eyes, read about our day, and relived it in my mind. What a scary time. Even though we are in the hospital, I am so glad it feels different this time. SO GLAD.
Here is a link for those of you who would like to re-read (or read for the first time;) the ordeal that started 10/27/09

Hospital stay

We are in hospital again :( We've been here since Saturday. Matthew has been having issues with vomiting again. They started last week, and progressively got worse. He was even vomiting with pedialyte. So by Saturday, the GI specialists felt like it was time for him to be admitted (we were in phone consultation with them daily.) Once here at the hospital, it was decided that we should try to "rest his gut" for a day or two. Sunday was a quiet day, with IV fluids running, and only small amounts of retching.

Monday was a flurry of activity. We had so many doctors and specialists in to see Matthew. We are trying to determine why he is vomiting. Many times before he vomits, he is coughing violently. Is he coughing due to reflux? Or is it respiratory? Or is it dysmotility? (the inability of his food to move from point A to point B) Is it a combination of the above? At the same time this is happening, Matthew's body also decided to quit allowing his bladder to empty, so we are cathing him. He also is having a hard time having a bowel movement. It's not a constipation issue, it's an appropriate consistancy, it just won't come out. So he is being complicated. Thank goodness (so far) his seizures have not flared up.

So yesterday, he got a chest x-ray (due to the coughing, and "junky" sounding lungs); and a CT scan of his brain to check shunt function, and a modified upper GI, to make sure his feeding tube was emptying in the proper place in his intestines. All of these tests came back fine; other than some atelectisis of his lungs, which we see frequently.

Neurosurgery is consulting to make sure his spinal cord has not re-tethered. They say this is pretty impossible with the type of tethered cord he had, but they also said that Matthew doesn't always follow the rules. They also say that the nerves that control the bladder and bowel that were affected from the cord tethering can take up to a year to straighten itself out. And during that year bowel and bladder function can ebb and flow {great...not what I wanted to hear}

Urology is consulting due to the neurogenic bladder. They would like a kidney ultrasound to make sure his kidneys are not being affected by the urine holding (when we cath him he can have upwards of 8-11 ounces in his bladder,which is alot..so we want to make sure we are doing exactly what his kidneys need, especially since his kidneys are a bit abnormal)

GI is trying to figure out why he is vomiting, and they are handling his feeding strengths and rates. The plan yesterday was if he didn't tolerate his feedings, they would stop his feedings in his feeding tube and he would go on TPN (nutrition in his IV) for 5-7 days and we could have been looking at a longer stay. So far we are avoiding the TPN

Pulmonology came in today per my request, because a lot of the vomiting seems to be a result of coughing, and mucous production. Does he have allergies? Is he aspirating? Why all the mucous and where the heck is it coming from because it's not coming out his nose, and he doesn't have pneumonia.

Those are the basics in a nutshell. Although I may have left out a few things since during this posting, I have been interuppted three times with different medical personel visiting. It's a busy place, this little room of ours.

We are going to do a MRI either today or tomorrow to check his spinal cord, and a kidney ultrasound today. Nothing else that I know of is scheduled. I will sneak in a nap and hopefully some quiet time with Matthew.

In our free time

My boys have found a fun way to entertain themselves. They found an extra piece of flooring my husband used to remodel our main bathroom, and starting having fun with it. I can't remember which boy started it, but it has provided hours of entertainment.

Some would say this is dangerous; but they are boys. And they are having a lot of fun. And it's fairly innocent; so I say, go for it!

Weighty boy!

Last week we took Matthew for a follow up appointment to his GI doctor. They are helping us with his formula, finding the right amount of calories for him and helping us with his reflux/vomiting issues.

Matthew weighed in at 27 lbs 15 oz. and was 33" tall. When he left the hospital 4 weeks prior to that he only weighed 23 lbs 5 oz and was 31 1/2 " tall. So almost 5 lbs in one month! Crazy!!

Now that he is off of the keto diet, he is not so limited in his calories, and we can give him better nutrition. So good, that we have had to decrease the calories just a bit because we do not want him to continue gaining 5 pounds every month. He feels solid now though, which is good. He seems stronger too. And I am happy that he seems so much more happy.

We're still working on seizure control, but we are not quite there yet. We go to Minnesota in a couple of weeks to see his epileptologist and are hoping to fine tune his medications.

Comments

Recently I read this post written by another special needs mom who talked about being her child being "secretly disabled" when he was little. One of things she talked about was the comments she would get about her son when he was little. I have to say that sometimes this is one of the hardest things for me. See in our home, in our world, Matthew is well, Matthew. He looks and acts normal to us. Well, his normal. I often forget what outsiders see.

Take for instance; last week, I was getting a couple things at Target and took Matthew with. He was in his stroller (wheelchair) WIDE AWAKE, and the clerk made the comment; "Wow, he is sacked out! What a great way to be able to get all of your shopping done!" I just smiled politely.

And then the other day, Mason had forgot his lunch and I had to run it to him at school. His room is fairly close to the front door, it's a small school, and I was in a hurry. So I didn't put Matthew in his wheelchair. I just grabbed him and carried him in. At the front door, a man I didn't recognize said "Wow, he couldn't get any limper if he tried!" Well. What do you say to that?

I just don't know what to say. Katy, said it in her comments section so well. She said she is not hurt or offended, it makes her feel uncomfortable, and likened it to when people call you the wrong name by accident. I hear these comments so often, that the "human-ness" in me wants to set them straight. But I know they don't mean ill-will to their comments. And I know the right answer is, that I am supposed to use these comments as education moments. I mean, I could pull everyone that says something aside and give them a 15 minute speech about Matthew, but that could be very cumbersome and uncomfortable for the reciever or my message. I just usually smile politely and keep going. I mean, they are noticing him right?? Which it is pretty hard not to notice his amazing cuteness :) :)

I am not ashamed of Matthew, quite the contrary. And I'm not looking for sympathy by writing this. I'm just putting my feelings out there, because, by judging the comments written in Katy's blog; I'm not alone. A lot of us deal with this. And writing is the way I process things. So thank you all , for my free therapy session. :) I think I feel better.

If you have time, read the post I linked to above. Then read the comments. It's a good read. Promise.

Big Brother

Mason is 7 weeks or so into 1st grade, and he all of the sudden has exploded in his reading ability. It is unbelievable. The other day, he found one of Matthew's books, "Silly Suzy Goose", and started reading it to him, while I was cleaning Matthew's room after his nap. It was so adorable. And Matthew LOVED it. We need to do this more often!

Brotherly love. So tender and sweet.

Thank you Jesus, for my sweet boys!

Crafty girl: Part 4

I'll be occasionally updating my "crafty girl" series as I make new little creations. I have a bunch to show off in the next month or so.

When we moved into our new home, I was so excited to have a spare bedroom. We have a place for company to sleep, and, I have my a sewing room. I've been able to do a bit more sewing, because I can leave my machine up and work a little at a time. Before, it sat on the kitchen table and had to be put away when not in use.
Last month my cousin had a little girl. And no little girl should be without a pretty dress. I whipped this little dress up below and shipped it off. I thought it turned out sooooo cute! And it was oh so easy. I can't wait to see her in it next summer!

What do you think??

Church campout

This last weekend, our family (minus Micah, he spent the afternoon and night at a friends house) spent the whole day Saturday out at one of our church's campgrounds with the Adventure club group. Adventure club can best be likened to a Christian form of Boy scouts or Girl Scouts group. It is for 1st-4th graders, and they learn all kinds of things, and earn badges and honors for their accomplishments.

The day was chilly. We got out to the camp early, and had worship around the campfire. Then the kids all went off with their leaders for a scavenger hunt and nature walk. They also took rides on the rope swing. Matthew and I stayed back, and stayed warm around the campfire.

We ate a potluck lunch at the lodge, and spent the afternoon visiting, staying warm and letting the kids play, and work on honors in their groups.

Then evening came and it was time for another campfire (although, I'm pretty sure this fire was lit all day) and a hot dog supper. After supper we gathered for worship.

Oh, how I LOVE worship around a campfire. Matthew loved it, too. He smiled and cooed through the whole thing.

Mischievous grin from the cutest 6 1/2 year old I know!



And then...bring on the marshmallows! Can't be a complete camp fire with out marshmallows!
That one looks a little toasty, Megan





As the sun went down, it got REALLY cold. Matthew and I snuggled in.


And Steve, well, Steve stayed crouched close to the warm fire.....

Roasting marshmallows and dough boys,

and by the judge of Mason's face in the picture below....
snitching someone else's doughboy's too :)

We had a really good time. And when it got too cold and everyone else was talking about "roughing it" in their tents with the forcasted low temperature of 37 degrees, we packed up our goods and our kids, and jumped in our already running van and headed for our nice comfy beds.

WHO?????????..................................

told my baby.....

It was okay to grow up and look like a


Toddler??

What's new in Matthew's world

• Going off the diet has been hard on Matthew. While his Gastrointestinal system thanked us greatly, his brain did not. He was having in an upwards of 25-30 seizures a day. We tried a new seizure med, and it didn't touch them; in fact it made them worse. So we're weaning off that and waiting for some lab work to come back to see what the next course will be for Mr. Matthew. Weirdly, around Wednesday, we saw a drastic decrease in seizures, for no apparent reason. We wonder if his body was going through withdrawals, or if they will pick up again, like they were before.

• Since being off the diet, Matthew has put on over 2 pounds. He is 25 lbs 10 ounces. And I can tell! He is getting HEAVY!
  

• Going hand in hand with the stopping of the ketogenic diet; we have been able to take Matthew off 3 medications he was having to take because of side effects of the diet. That is a very welcome thing!

• Matthew currently has a horrible cold. At first we thought it might be allergies, but now, I've got the sniffles and a sore throat. Bummer.

• Matthew is finally getting teeth! As of last month, he was only sporting 4 little front teeth, and was breaking through a molar. Today, he has the two on top, 5 on the bottom, 1 molar on top that is poking through and the molar on the bottom. The bad part is the molar on the bottom came in VERY crooked. We now have an appointment to see a special needs dentist in December to talk about his particularly peculiar mouth. He doesn't even seem too extra fussy about it.

• We are working on oral feeding again. He currently gets 4 "bites" a day. He HATES silverware, but doesn't mind mommies finger too much, so that is what he is using for his utensils. Baby steps, baby steps.

• Matthew has all of the sudden found his voice again. He is cooing a lot and such a happy guy, even sick with a cold. We went out to a camp out this weekend (more on that later this week) and while singing worship songs around the campfire, Matthew could NOT stop smiling and "singing" along. He absolutely loved it.
  

• We have increased his standing time, and braces wearing time. He is currently in his stander 1 hour a day, and in his AFO's (ankle-foot orthotics.."foot braces") 4 hours a day. He doesn't seem to mind one little bit, and we are seeing the benefits of stretching his heel cords in his braces. We can now get his feet almost at a 90 degree angle. {Tight heel cords are one the things that easily happen to children and adults who are not walking or upright}

• We are in the process of changing home health companies, because our favorite nurse left to go to another company. We found out last week that we too, can change companies and follow her. We are so happy!