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!