Home

Sorry to not update for a bit, but we are home. It has been a fairly painful recovery for Matthew and I have spent a lot of time cuddling him in the last few days. I was unable to hold him all day Friday, and most of the day Saturday. We kept him pretty much sleeping for those two days. Saturday afternoon they took his catheter out after he urinated around the tubing. I couldn't believe my eyes. I went to turn him from one side to the other and his whole diaper and bedding was wet. So they figured they could take it out. He's been on his own ever since. No more catheterizing him. The doctor told us it could take up to 3 or 4 months for it to come back and it came back immediately. That is a direct answer to prayer. I pleaded with God to allow him to be able to pee again. I couldn't stand doing that any more. It was too much for my momma heart to take.

Saturday night, as he started waking up more, we noticed a big increase in the amount of mucous he had. Given the fact we'd kept him down for 2 days, his lungs had a nice build up of junk to get rid of. A couple times respiratory therapy had to come up and deep suction him to help clear his lungs. That seemed to help, and they allowed us to go home on Sunday. When we got home, it became evident that he still needed some help with suctioning as he was unable to get his lungs clear on his own. I called the doctor to see if we could get a home suction machine, but they wanted us to go back to the ER to be suctioned and then send us home with a suction machine.

When we got to the ER, they called the pediatrician, and he wanted us to spend the night (grr...) and then get us a machine in the morning and we could go home. So we hunkered down for the night, and bright and early, they got started on getting us the equipment we needed. We left early morning and the minute we got home, Matthew and I snuggled into the recliner for three more hours of sleep.

Matthew has been in pretty good spirits today, but you can tell he still has quite a bit of pain. We are liberally giving him pain medicine and trying to keep him comfortable. He has been sleeping a lot, too, which is to be expected.

I already feel the surgery was worth it, even if the only benefit we see is his ability to empty his bladder on his own. The pain in his legs should also lesson as his nerves in his back continue to heal.

Out of Surgery....

Matthew's surgery was a success. His white count was normal today, which is unheard of from him (this one is a miracle in itself...Matthew white count is NEVER normal...praising Jesus for this one) and so surgery went on as scheduled at 5pm. When we arrived at 3pm for surgery, he had just woken up from a nap. We got checked in and as soon as we were able to sit and relax, Matthew started smiling. And while he was in the pre-op area, he had two wet diapers (which he hasn't been able to do for almost a week). He was making a liar out of us :) He looked great this afternoon, but we knew the surgery still needed to be done.

He left preop right at 5pm and around 6:45 Dr. Puccioni came out and told us surgery was successful and that the philum (this is the end of the spinal cord that is tethered or adhered to the bottom of the spine) was very thick and VERY tight. He had a hard time getting his instrument even underneath it to cut the tethering. So definitely the surgery was needed. Because the philum was so thick, this could make his recovery a little more painful, but luckily our doctor believes in giving lots of medicine to keep his patients as comfortable as possible.

We got to see our little man again around 8:15 and he has been sleeping soundly ever since. I guess he was pretty sleepy in recovery, but when we met him up in the room I started talking to him and even though he kept his eyes closed, he smiled at me three times. It was nice to see.

Matthew needs to be on bed rest for the next few days, and not held at all, unless absolutely necessary. They want him to lay on his side and they will turn him every four hours from one side to the other.

We may not know for up to 3-4 months what damage to the nerves from the tethering will be permanent and what he will regain. We are mainly hoping for him to be able to empty his bladder on his own, and to not have leg pain. Anything else that comes from this will be an absolute added blessing.

Okay, off to bed..I better sleep while he is.

Happy Birthday Matthew and surgery plans

Matthew is two today!! Happy Birthday sweetest boy! We love you!

And surgery is scheduled today for 5 pm. His white count was elevated on Tuesday (which can indicate infection) and if it is still elevated they will consider canceling surgery. This would be devestating as Matthew continues to be in alot of pain through out the day. He has no signs of infection throughout his body and has had elevated white counts in the past for no particular reason. We are specifically praying for a lower white count and a safe surgery. If all goes well, we should be in the hospital through the weekend. I will be updating facebook regularly and my blog most likely late tonight.

Thank you to everyone for your continued support.

Today....

was a rough day.

Matthew has been very uncomfortable. I'm guessing this tethered spinal cord is getting the best of him. As the tethering gets worse, the nerves that control the lower part of the body are stretched, which causes all kinds of problems. He is unable to empty his bladder at all. His legs spasm in pain for minutes at a time. He screams for hours on end. He is either sleeping or screaming.

We had decided to celebrate Matthew's birthday tomorrow, per all the comments in the comment section. But with all the pain he is having, he will not be interested in celebrating, no matter what day it is.

I'm been having a big time feeling sorry for myself day. I've been in a poor mood today. I've cried at the drop of a hat. I've been angry. It just makes me crazy mad to think that just when we get one thing taken care of, another problem pops up. And not getting much sleep last night makes it even worse. So here I sit, still feeling sorry for myself. Not ready to take on the next 48 hours, much less the recovery period after surgery.

I'm hoping for some sleep tonight and a better day tomorrow. We had 1 doctor appointment, lab work and a chest xray today, and a doctor appointment tomorrow. Mason graduates from preschool tomorrow night. And then surgery. Yes, I think I can. I think I can make it.

There are some things a mother should not be expected to do to her child

Number one on my list is putting a urine catheter in your child 4 times a day

Matthew's ability to empty his bladder has gone to almost non-existant.
Which is causing him a great deal of pain.
I can only imagine.
But catheterizing him is not a walk in the park for either one of us, either.
And I'm drained. Emotionally at least.


Oh, and did I mention we're moving?
Yes, instead of holding my crying baby right now; I'm supposed to be packing boxes.
Three 1/2 weeks and we'll be closing on our new house.


Oh and the best news of all.
They just called me and canceled his surgery on Friday.
The doctor is going to be out of town.
They have no other time available than Thursday.
Thursday happens to be Matthew's birthday.
So instead of cake and candles, we will go to the operating room instead.
Happy Birthday to YOU, Matthew.

And the results are in....

Matthew had an MRI of his spinal column yesterday morning to check for a tethered spinal cord . In the last month he has been having some weird symptoms. He started not being able to empty his bladder until it was very full, so full that he was VERY uncomfortable until his bladder would just finally overfill and he would get rid of some urine. He also in January started having constipation issues that we blamed on the ketogenic diet. He also was born with a sacral dimple. and the beginning of the year we noticed a hemangioma (a raised reddish area of skin) on his back. I had remembered reading on Sherri's (a friend of mine) blog that they had tested her son for a tethered spinal cord and had read up on what that meant. All these symptoms matched up with a spinal cord tethering diagnosis. The way to get a definitive diagnosis is an MRI of the spine, hence that's what we did yesterday.

Matthew had to be sedated for this procedure and 1/2way through the procedure they called me from the OR and told me the doctor decided he wanted to do a more in depth MRI and to use contrast. I knew at this point they had found something.

Sure enough when the doctor finally was able to meet with us in the office, he said that Matthew had a very large tethered cord, and that it would be an easy fix. The surgery will take around an hour and he will need to stay a minimum of 48 hours after surgery. He could do the surgery as soon as Tuesday, but since Matthew's birthday is Thursday, I figured he wouldn't want to spend it in the hospital. So we scheduled the surgery for next Friday...exactly 2 years (to the day) that Matthew and this same Dr. were in the operating room together and he was putting in his shunt. Sort of poetic. I guess.

On a side note; we don't always get very much good news at Dr.'s visits, so we soak in compliments however we can...Yesterday, Dr. Puccioni questioned if he a shunt. When I said yes, he commented how nice of head he had for a "shunted head". He was quite impressed. ...Thank you..I'll take that as a compliment :)

New toy

Early intervention brought Matthew some new toys. They are all activated by switch so Matthew can learn to control of his toys and cause and effect. This little toy below is a toy that normally hangs on a crib. It has a monkey and other jungle animals that move and it plays music and has lights. These type of crib toys are Matthew's favorite. Look at him studying this intensely.

The purple button is the switch that makes it turn off and on. He is starting to get the hang of it. We are playing with it everyday.

See how much he loves it?

****Matthew is currently in MRI as I am typing this; he having an MRI of his spine. Matthew has been having issues lately with urine retention, constipation and can be common for kiddos with neuro problems to have a tethered spinal cord. This is what they are looking for...we are actually hoping they find something because it will hopefully alleviate some of the issues he is having****

Cayman update

Click here to read an update on our friend Cayman.

URGENT!!

Edited at 9:33

Cayman is out of surgery, her shunt is draining to the outside of her body and she is now extubated (off of the breathing machine) and awake. The doctors also think she may have a blood clot. This is the last text message I've heard from Kristen. She and I will hopefully talk this evening and I will post more. Thank you so much for praying for her!! They are an amazing family! God is good!

Original

I've put this on facebook and I feel the need to put it here. I don't have alot of details but Matthew's friend, Cayman is VERY sick. She is on life support and life flighted from her home town to the University of Michigan. They think it may be her shunt...She is very sick and is in surgery right now, but they are concerned about her making it through surgery. Please pray with me for this family. They are very dear to my heart.

Thank you!

My oldest

Turns 12 Today!
Happy Birthday Micah!