Tuesday, October 30, 2012

Busy days

So the past couple of days have been busy. We have been busy getting ready for Mason and Mason has had some busy days tying up some loose ends. Yesterday, he got his first immunizations, another echo cardiogram to check the clot in his heart, worked with speech and physical therapy, and had his skin stretched and re-stitched because his neurosurgeon was concerned with how everything looked. Today he was irritated and over it and wanted everyone to leave him alone and let him sleep. We are thinking he possibly might come home sometime early next week so we have been working hard to get everything ready. Things have been a little hectic but we are excited and still praying that this is actually going to happen and that everything is going to go smoothly. We are also praying that he feels better tomorrow and is more like himself. They have condensed his feeds to being given over 30 minutes and he is still working on food by mouth but today he did not want it and was pushing it away. He just wanted to sleep. They are also continuing to wean his oxygen flow down as well and he is doing ok with that. We continue to appreciate your prayers as we are preparing for this exciting time!

Sunday, October 28, 2012

Step by step

Mason is getting closer and closer to coming home (we continue to pray)! They are working on weaning down his liter of oxygen and today he was on .7 liters at around 40%. It is looking more and more like he will come home on oxygen which is fine by us because that is what we were expecting anyway. He is eating like a champ! They have condensed his bolus feeds to being given over 1 hour and he is taking 3 bottles a day. This afternoon the nurse offered 30 ml and he took it all (they have just been giving around 10 or 15). He does great at pacing himself and taking his time which is unbelievable considering he just started taking a bottle last week. We are so thankful. There is a site around the shunt that his neurosurgeon is concerned about. The skin is red and inflamed and it looks infected. If it isn't better by tomorrow then the plan is to cut the skin around the area, stretch it, and re-stitch it just to be cautious. He will also send off the skin for culture and Mason might go back on antibiotics if the skin is infected just to be precautious. So this might keep us from going home so soon...I am sure we will find out more information for certain tomorrow. Still we are glad he is being cautious. Better safe than sorry! Other than that his labs look great. Platelets were 308! We are blessed and ready for this boy to come home!
He loves sitting in a bouncy seat!

Thank you

We are so appreciate for all those out there who are supportive and reaching out to help us out. We have been overwhelmed by prayers and support. We are thankful to Jen Denis for organizing the fundraiser site: www.indiegogo.com/babymason. We have been very blessed. We are also grateful for all of those who came out and participated in the Masquerade for Mason. We had a great time and it was so good to meet some of you who have followed Mason's story. Below are some pictures from the event:

Corbin and his buddy, James had a good time dressing up and participating in Mason's "party."

One of the vendors, Good as Gold,  has offered to schedule another CASH FOR GOLD event since many people mentioned they did not know this opportunity was available or forgot to bring their items. They will be at Sarah Vaughan's house this upcoming Thursday, November 1st from 6:30 to 8:00 pm. This will be a drop in style event with nothing for you to buy, only CASH for you to make. Not only will this be a great opportunity for you to get "CASH FOR CHRISTMAS" but Good as Gold will also be donating a percentage of the total dollar amount they purchase to Mason. Sarah Vaughan has graciously offered to host this at her home at 3809 Hunt Chase Drive in Greensboro, NC. Liz Cagno, Good As Gold Event Manager, is available to answer any questions you may have prior to the event, and we ask that you please RSVP to her by Wednesday, October 31st. She can be reached via email at liz@goodasgoldparties.com or call or text her cell number 336-394-6400.

A benefit fly-in is also being held on Nov. 10th at the CCRC field in Mason's honor. We are also thankful to K/C Hobby who is sponsoring a $500 gift certificate raffle. We are so blessed and so thankful to all those who are helping us in our time of need. God does provide! Below is more information about the upcoming events.

Saturday, October 27, 2012


We were so overwhelmed and thankful for everyone that came out to the Masquerade for Mason last night. A huge thank you to my good friend, Sarah and her husband, Robert who put on the event and organized everything and catered the food. We greatly appreciate it! I will do a more in depth update later.

Mason continues to do great. They are condensing his feeds and getting him closer to coming home. It might be sooner than expected if everything continues to go well ( which we continue to pray it will). We are overwhelmed, excited, and scared! It is a lot to think of taking care of this boy all by ourselves! Some of our friends and family have spent the day helping us organize and get things together. Please continue to pray for smooth sailing from here. Labs tomorrow! Will keep everyone posted when we are certain!

Thursday, October 25, 2012

A possible date

Mason got to start back on his feeds again today and he was happy! He took 2 bottles and did well with that (just 10 ml). The dr. asked me when I wanted to go home...she would like to try to get him off of oxygen and he is on minimal (usually around 25% and back on .9 liter today I think after surgery) so that could probably be a goal. He needs to get to bolus feeds and continue to see how he can do with taking foods by mouth and then I think we are good. She said by thanksgiving should be no problem! Yay! So much to be thankful for. We are excited and ready for this boy to be home! Please continue to pray as we prepare for him to come home and for him to continue to do well! To Him be all the glory!

Wednesday, October 24, 2012

News from surgery

Eye surgery went well. He was optimistic and will recheck next Tuesday. About an hour after surgery Mason had had enough of his breathing tube so they extubated! Yay! Praise The Lord and thank you for your prayers.

Prayers needed

Mason is having eye surgery this afternoon at 1:30 or 2. Please pray for a successful surgery and quick recovery. Thanks.

Tuesday, October 23, 2012

Possible bump in the road

Mason is continuing to do well. He is on .8 liter of oxygen still hanging around 25-28%. Therapy came up to assess him and he did pretty well with his bottle. He is tolerating his bolus feed well and they will probably condense it some more tomorrow. He is beginning to get hungry and cry when it is time to eat which is a good thing. The only possible bump in the road is his eyes. He has eye exams every 2 weeks and today the dr. saw something questionable enough that he wants the surgeon to come and take a look at it. The surgeon should come tomorrow so please pray for some miraculous healing. He has been at ROP stage 3 so I am thinking we might have to have surgery, especially if he wants a second opinion. Other than that everything seems to be going well. We thank you so much for your prayers!

Sitting in my bouncy seat dressed up in my tiger outfit that Corbin picked out for me. What a big boy!

Monday, October 22, 2012

5 months old

Today Mason is 5 months old. He is growing up (even though he is still only 1 month adjusted). He is doing excellent. Labs were great and they pulled his PICC line because he no longer needs it. He is taking all of his medicine by his g tube and today he took his first bottle. He did great and they said that he could have 2 a day 5 cc full and speech was supposed to evaluate today but she ran out of time. She said just to watch for signs of aspiration (like gagging, eyes watering, etc.). Below is a video of his first bottle:

Mommy and Daddy got to feed me my 2 bottles today!

He is doing so good! Today they weaned him down to .9 liters of oxygen and he is still requiring around 25% which is minimal. He is becoming bossy and will let you know when he is NOT happy! I do believe he is wanting to come home. We are so thankful he is doing so well! Looks like we better be getting things together because it may not be too much longer before we are bring this boy home!

Mason is trying to disguise himself so he can sneak out of the NICU. 

Sunday, October 21, 2012

Busy weekend

We have had an action packed weekend full of celebrations, baptisms, and showers. Mason, on the other hand, has not had an eventful weekend and for that we are thankful. He is now up to full continuous feeds and doing well with that. He is breathing well and is down to 1 liter at around 25%. He LOVES his boppy and prefers sleeping with his head propped on that as opposed to his mattress. He continues to suck like crazy on his paci and tomorrow he should have a speech eval to see if he is able to start taking food by mouth. We are very excited! Please continue to pray for no infection and smooth sailing from here, as well as, healing of his body (especially his brain). Everything is going great and we are so thankful! Hope you all had a great weekend as well!

Friday, October 19, 2012

Numbers and thanks

Tonight I am borrowing a post from my mom that she put on facebook because I think it really sums up all of what Mason (and us) have been through in the past almost 5 months. He officially turned 1 month old on Tues. (adjusted age). It is hard to imagine he is only supposed to be about 1 month old and how much he has already been! He is doing really well and we are blessed and thankful! They decided today to change his feeds to continuous (even though he was tolerating the bolus so far) in an effort to get him back to his max feeds quicker. They are going to increase him by 1 ml every 3 hours so he should be back to max feeds by the end of the weekend. Then they will condense down to bolus feeds. He continues to recover well from his surgery and he is breathing great! We are so thankful for the numerous prayers and how many people are supporting us in any way possible (by prayers or organizing fundraisers). Several friends of ours have organized events such as www.indiegogo.com/babymason, the Masquerade for Mason (on Oct. 26th), and the Mason Matthews benefit fly in (on Nov. 10th). If you are interested in any of these events please click on the link or look at the flyers below that are attached in this post. We have been touched by how many people have reached out and sent messages of encouragement. Although people say our sweet boy and family have touched their lives just KNOW that you have also touched our lives as well. We continue to pray every day for the health of our child, the healing of his complete body, and we greatly look forward to the day that he will come home.
Written by my mom:

Numbers...to reflect on.
23 weeks...4 days. That was Mason's gestational age when he was born.
1 lb 5 oz...that was Mason's birth weight.
27-40%: That is the odds we were given that Mason would survive. This was prior to any complications. Mason's complications include (bilateral cranial bleeds grade 3 and grade 4, PDA valve, perforated intestines, retinopathy of prematurity, meningitis, pulmonary hypertension, chronic lung disease, ruptured central line causing life threatening fluid in abdominal cavity, UTI, sepsis, peritonitis, meningitis again, hydrocephalus).

80%: That is the odds we were given that Mason would have significant neurological deficits if he did survive. This was prior to any of the above complications.
4: The Number of surgeries Mason has already had in his short life. This does not include other procedures (such as EVD insertions x2 done at bedside, placement of central lines and PICC lines).
150 days: That is how old Mason is today.
1000's: The number of prayers that I know have been spoken for this special child.

We would love to meet you all that have spoken prayers for our sweet child. We humbly thank you for all the prayers that have been spoken each and every day. 

Thursday, October 18, 2012

Lets eat

Mason graduated to a crib today and got to start feeds through his g tube. They are starting him off at 5 ml every 3 hours and increasing them every 12 hours as long as he is tolerating them. I got to hold him for awhile and it was so nice. We are so thankful he recovered well from this surgery! So now we just work on breathing and feeds and pray he doesn't get an infection and hopefully come home sooner than later. He is finished with all of his antibiotics. Therapy is starting to work with him and will hopefully start working on feeds by mouth. He is sucking like crazy in his paci which is good sign but time will tell. We sure are ready for this little boy to come home.

Wednesday, October 17, 2012


Look who has no breathing tube!

Mason had a good day. He was READY to get rid of the breathing tube and was not happy. After he got extubated he then decided he was ready to eat again. He fussed and fussed and fussed. I have never seen him fuss so much. He had to have a CT scan and x-ray just to check the shunt placement so he had quite the busy day. Everything is looking good so we are very thankful. Hopefully he will be able to start feeds back up soon. He is ready! We are thankful that he is doing well and making a quicker recovery than normal!

Tuesday, October 16, 2012

Surgery update

Mason made it out of surgery ok. His shunt is in place and is draining to his belly. The g tube was able to be placed with a scope so they didn't have to reopen his incision which is good. All else is well. Now we just pray for a non eventful recovery and for him to wake up and start breathing on his own again! No infections and for the shunt to continue to work. Thank you for your prayers!

A new beginning

Today marks a new day. We are praying and hoping that this will be it. The surgery that gets us home. I am hoping the last surgery ever but we have been told that probably won't be the case. It has been a long road for sure and we are ready for our boy to be home. As he went back for surgery this morning, Josh and I went up on the top floor (where we have gone so often with Corbin to play) to watch the sunrise. A new day, a new beginning. This is our prayer.

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
Bless The Lord o my soul.
Worship your holy name.

Monday, October 15, 2012

Surgery at 7 a.m.

Mason's surgery has officially been scheduled for tomorrow morning at 7 a.m. He is going to have the VP shunt placement, g tube, and circumcision. They are putting in a g tube because Mason has not taken food by mouth.  He probably will be ok but we don't know that so in an effort to get us home sooner they are going ahead and putting one in. His dr. says we could spend a long time working on taking all feeds by mouth so she would rather him have a g tube and go home sooner. Fine by us.  He spent the day just resting up and getting ready. He had a cranial ultrasound which showed a definite decrease in the CSF in his left side. Due to the latest ultrasound, his neurosurgeon is pretty sure that the right and left are NOT communicating. So in the future if the fluid in the right side of his brain becomes a concern then we will have to have another surgery. Another surgery is likely anyway because the percentage of shunt "fails" (due to infection, clog, etc) is 50% and Mason's percentage rate is even higher due to the protein, etc. from the resolving of the brain bleed. Prayers are also needed for healing after the surgery, getting of the vent, and for Mason's brain to take off and grow. The excess fluid on his brain has affected its growth and now his brain needs to catch up with his head. We know this can happen with prayers and through God anything is possible. I will definitely keep everyone posted on his progress tomorrow. The entire surgery is supposed to last around 2 hours including all procedures and he will likely be pretty out of it through tomorrow. Thank you so much for your prayers. We are ready to get over this procedure and get our little boy home!
I sure loved snuggling with this little boy today. Had to get some time in since it might be a little while before we can hold him while he is recovering from his surgery. 

John 16:33 These things I have spoken to you, that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.

Sunday, October 14, 2012

Waking up

So instead of resting up for his big surgery day (on Tues. still don't know an exact time) Mason is waking up. I think because of all of the excess CSF (cerebral spinal fluid) that has been on his head plus all the seizure medicines he has been on Mason has been out of it A LOT lately. Well, now he is making up for lost time. He is so wide awake and very active. They told us that now when he lays on his belly he will pick his head up and change sides trying to get himself comfortable. Pretty impressive considering (technically) he is only 3 weeks old (adjusted). He was wide awake the whole time we were up there today sucking on his paci, looking around, and taking in all of his surroundings. What a great site to see! He has had a little bit of an upset stomach today which has also lead to a red bottom. The tummy is probably coming from a long effect of the antibiotics he has been on and it is just upsetting his tummy. He would definitely let you know when he had gone because he was NOT happy and his bottom is pretty irritated. His pre-op labs today were good and he is doing well. Almost 200 ml of CSF has drained off of his head since last Monday. He has a cranial ultrasound scheduled tomorrow to gain more information before the surgery and to make sure the drain is still working correctly but I believe it is! We are thankful for our sweet boy and hopefully for a good surgery and quick recovery!

All ready for Halloween, dressed up in my tiger outfit that my brother picked out for me.

Pumpkin patch and zoo weekend

Corbin has been really wanting to go to the zoo all summer and we have been pretty busy with Mason so we haven't had a chance to go yet. Well, since Mason is doing better and all we decided to head to the zoo on Saturday. Corbin had a fun time and enjoyed seeing the animals. His favorite was the monkey because we got there at feeding time. He enjoyed sitting with his daddy and watching the zoo keepers feed the animals. The momma monkey had a baby and he liked to watch her carry the baby around. He saw ostriches, rhinos, giraffes, zebras, monkeys, birds, elephants and bears. Below are some pictures:
We could see the elephants from afar.

Daddy and Corbin riding the rhino. Corbin is a little fearful of animals at times and needed the comfort of his Daddy with him (even though it was a statue).

Didn't have to talk him into getting into the helicopter. This boy LOVES his vehicles!

Daddy and Corbin checking out the monkeys.

Today we took our annual trip to the pumpkin patch to get our pumpkins. Corbin was very excited to help us pick out the perfect pumpkin. He really likes the ones with the wart looking things on them. He had a blast! We are thankful we were able to spend some time with him this weekend and do some fun fall activities! Ready for both of our boys to be together!
Cheesing in the pumpkins. He has become quite the poser!

 Look, one that is my size!

 Family pic minus Mason. We'll get one next year!

Happy boy with his pumpkin! Can't wait to carve it with him this year!

Friday, October 12, 2012

So very thankful

Mason is doing very well. He is gearing up for his surgery on Tues. by resting, awake time, eating well, and growing. They tried him on 1 liter oxygen today but he got a little tired so they ended up going back to 1.5. His EVD is draining great and his head finally feels like it should. They also confirmed from his MRI that the clot that was in the vessel is resolving itself which is great news! So hopefully the one in his superior vena cava is resolving as well. He has been pretty awake while I was there and when Josh was there this afternoon and really wanted to suck on his passy. Josh said that when he  would hold it and he would be happy but when he stopped he was not happy. He is doing great and we are so thankful for this and for continued prayers for his upcoming surgery. Praise be to the Lord for all the wonderful things he is doing!

Thursday, October 11, 2012


Mason had another great day! They increased his feeds to 22 ml/hour and his EVD is draining great. His head finally feels like it should which is great news. He was wide awake and looking around and enjoying sucking on his passy. He has also started rooting around which is good to see. He went ahead and got a blood transfusion to prepare him for surgery on Tuesday. Platelets were at an all time high-220! All other labs looked good. He is on 1.5 liters now and tolerating that. We are so thankful that he is doing so well! We are blessed!

This little boy was SO wide awake it made his Mommy not want to leave today!

Below is a flyer with more information about Masquerade for Mason. I have been asked if dressing up in costume is required. It is optional but welcome if you would like. Feel free to come out and shop and we would love to meet everyone who has prayed for us and our little boy. We are so very thankful for your prayers and love for our family. It means so much to us all and your support, love, and prayers are what have gotten us through all of this. We are ever grateful. 

Wednesday, October 10, 2012

Sweet little boy

Mason had another uneventful day. He rested some and was awake some. He is breathing ok now on 2 liters and is handling that. He does great breathing when he is awake but when he drifts off to sleep he gets back into his bad habit of short and shallow breathing. His EVD is still draining well which is a blessing. The results of the cranial ultrasound showed a slight improvement of less cerebral spinal fluid (CSF) and from the ultrasound it does look like the left and right side are communicating (which is good news). Shunt surgery is officially scheduled for Tuesday and we are hoping to get him circumcised and to get a g tube put in at the same time. We have labs tomorrow to check everything but he is doing well. We are VERY THANKFUL for good days and pray that they continue. It is nice to see this little boy wide awake! Below is a video. Hard to believe he is almost 5 months old!

Tuesday, October 9, 2012

Masquerade for Mason

A good friend of mine has been nice enough to put together a fundraising event for us. Here is some information. If you are interested in purchasing tickets to attend or buying from some of the vendors that are going to be there then please contact: Sarah Vaughan at (336) 392-9618 e-mail: s.vaughan.slp@gmail.com

Mason had an uneventful day today. A LOT of fluid has drained off of his head with the new EVD. He worked with OT and Speech today and did well with sucking his passy and was actually turning his head to noise and looking around wide awake. He had a cranial ultrasound today to try to compare to last weeks so it will be interesting to see what it says. As for now, shunt surgery is scheduled for some time next week. He continues to tolerate his feeds well and everything else is going ok for now. We appreciate your prayers as we prepare for upcoming surgery and for continued healing of our sweet boy. 
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Roman 8:28

Monday, October 8, 2012

Crazy day

So much for an uneventful MRI day. Atleast the MRI in itself was uneventful. Mason had an MRI at 10:00 this morning and his nurse noticed this morning that his EVD had come out of his head. The only thing that had been holding it in was tape (since all 3 sutures had come out on Friday). So neurosurgery was called to see what they needed to do. In the meantime, Mason started having seizures again (where he stops breathing and his stats go down into the 30's and 40's. His phenylbarb level was around 57 this morning and that on top of all of the fluid on his head was causing problems. By this time he was having them pretty often and they put him back on CPAP to see if this would help and called neurology to see how they wanted to adjust his seizure meds. They ended up loading him again with Kepra and increasing his dose to help him with his seizures instead of increasing the phenylbarb since they are still wanting him to be awake. By this point, Mason's new neurosurgeon had come up to put the EVD back in at his bedside. Apparently this was all a blessing in disguise because the old EVD really hadn't been draining out that much and the cranial ultrasounds were still showing a large amount of fluid on his left side. When the new EVD got put in 30 cc immediately came pouring out. Hopefully that will help with the seizures as well! He also had had a chance to look at Mason's MRI from this morning and said it actually looked better than expected (other than having a large amount of fluid on the left side). With a psuedomonas infection you would expect some holes in the brain (from the bacteria) and multi-pockets of hydrocephalous (which I thought had shown in the cranial ultrasounds). But the MRI did not show either of these. So that is really good news. Prayers are working and we are thankful. After the fluid release and the addition of seizure medicine Mason did so much better. It had been a busy day and he was exhausted! I think we all are too and hoping for a restful night!

Sleepy boy!

Sunday, October 7, 2012

Weekend update

Mason is doing good and is waking up more and more now that they are weaning him off of his seizure medicine some. When we got up there this afternoon he was trying to pull out his PICC line which is no good! He is back to his old tricks! They were finally able to weigh him since the EEG was removed on Friday and he weighs 8 lbs. 3 oz. So they increased his feeds to 21 cc/hour and he is doing great with that. An MRI is scheduled for tomorrow and they have weaned him off of CPAP and put him on high flow nasal canula to see if he can just do that with his MRI. Please pray for smooth sailing and good results with that tomorrow. We always tend to have WAY too much excitement with MRIs for some reason! He is still destating some depending on how he is laying and we are always watching out for any seizure like activity since they are weaning his medicine and have taken him off the EEG for monitoring. Hopefully he will continue seizure free. The tentative plan is for Mason's shunt surgery to be on Friday but we will see what happens since we are trying to switch neurosurgeons. Please continue to pray for all of this and for healing. We greatly appreciate all of your prayers, comments, and advice. It means a lot to us that you follow and love our little boy as much as we do.

Friday, October 5, 2012

Moving forward

Mason loves his "Mighty Mason" outfit from Aunt Tiffy and Uncle Nick.

Mason continues to do well and is tolerating everything. He is at full feeds as of now (20ml/hour) and they are going to be able to weigh him tonight because the EEG is gone. They are going to work to wean his phenylbarb so that he will wake up more and just monitor his seizures (since most of them are clinical). Our meeting ended up being more informal than expected and was interesting. We are probably going to try to switch neurosurgeons because we feel this is a better fit for us and more importantly for Mason. The plan is to go ahead and put in a shunt soon. The shunt is going to be difficult and Mason will probably have numerous shunt surgeries because of all of the complications he has had (infection/meningitis). It doesn't look promising as far as that goes but we believe that prayer can do wonderful things. If you could pray specifically for healing, especially in Mason's brain we would greatly appreciate it. It is also complicated because the tubing goes in Mason's stomach which has also been operated on. So all in all a complex case. It is necessary that Mason's abdominal cavity be able to absorb the CSF (cerebral spinal fluid) that drains from his brain. There are also multiple pockets of hydrocephalous which also further complicates thing. But nothing is too complicated for our God. And we believe that He is in control of this whole situation. 

One of his sweet nurses, Cydney, made this for him! Check out the little ghost feet!


Last night we took a trip to the fair. This was Corbin's first trip that he can remember. We went up to see Mason (per Corbin's request) and then headed to the fair. Corbin enjoyed some fair food (hot dog and red velvet funnel cake) and then we rode some rides. Corbin enjoyed petting the animals (camels, goats, boar, porcupines, and cows) and had a BLAST riding Buckwheat the pony. 

This was the best picture even though it is a little blurry. After he got off he got so excited and said again.

Then we went to ride the merry go round and Corbin thought this was so much fun. He wanted to go upstairs and ride on the top but we convinced him to stay down so we could get pictures. He also was a brave boy and rode the big ferris wheel and thought that was fun. He wanted to ride all of the rides again. 

Mommy and Corbin on the carousel.


Corbin was a trooper and stayed up WAY past his bed time. He was still excited talking about it this morning when he woke up. He is growing up so fast I can hardly believe it! He is such a sweet boy and is so loving to his family and especially his baby brother. 

A quick update

Mason had a good day yesterday. I didn't have a chance to update last night because we took Corbin to the fair. He had a blast! We have our family meeting at 3 today. Please pray for us. Other than that Mason is up to full feeds, breathing well, has been seizure free, and is starting to wake up. We had labs yesterday and his platelets were the highest they have ever been---199! Neurology said his brain patterns  have improved as the week has progressed and he has woken up. They aren't completely normal but he is encouraged. So all in all a good day. Praise the Lord! I will post a more detailed update hopefully tonight after our meeting.

Wednesday, October 3, 2012

Don't give up

The other day as I was driving home from the hospital this song came on. Again, I feel like God was speaking to me. These past couple of weeks have been hard and we have been struggling but we will get through this by God's grace and through prayer. We are never going to give up on our little boy just as God never gives up on His children.  Please listen and remember that no matter what you are going through that help is on the way:

Mason is doing pretty good. They were able to wean his phenylbarb down and he didn't have any seizures. They are going to leave the EEG just to monitor within the next couple of days. They are checking his level tomorrow and that will give them more information. His feeds are going well and he will be off TPN tonight which is great. He is taking the majority of his medicine in his feeding tube and is able to get his supplementation (like vitamin D) since his feeds are almost to full. He has still been pretty out of it today but has woken up some. He has been having problem with his breathing (it has been short and shallow) which usually wasn't a problem with his but it has been since this last episode where all of his medicine poured into his belly. Well, PT and OT worked with him today and she noticed his lower back is really tight and asked me to massage it just to try to help him relax his muscles. Well, it was amazing to sit and watch him breathe SO much better when I did this so I really think his back must be really tight which is causing the problems with his breathing. 

As for neurosurgery's plan we are having a family meeting on Friday at 3. Please pray for us as everyone prepares for this. We are hoping that all of his different teams will attend in hopes of coming up with a plan for treatment, mainly his hydrocephalous. Please pray that this will be a good meeting with a gaining of a treatment plan for our son. We will definitely update you once we know something. We are so appreciative of all of your prayers. We believe help is on the way and we won't give up on our little boy. 

Tuesday, October 2, 2012


The good news is Mason is doing ok. He is tolerating his feedings and is breathing ok still (even though he is really sedated). We also found out today that he had not had anymore seizures for a 24 hour period. So for all of that we are thankful and God is good.

The down side is that I got some mixed stories today. Neurology came and told me that from their point of view they are pretty certain that the increase in fluid is what caused Mason to have seizures. He was glad that they did the cranial ultrasound because it gave them the information they needed to know. He is going to leave the EEG on and decrease his phenylbarb maintenance dose just to see if he can tolerate that and wake up a little. So his idea was that neurosurgery needs to do something to control the fluid. So when neurosurgery came up he said the EVD is draining fine and that this may just be how Mason is and he may not need a shunt. Which would be good news if there wasn't fluid pushing on his brain that neurology thinks is causing the increase in seizures. So we are having mixed emotions. Thankful that the seizures have gotten under control right now and that everything seems to be going ok. But frustrated from the lack of communication between all the disciplines. If some fluid needs to drain then we want it to drain! We aren't ready to give up on that yet. So please pray for us and for everybody to get on the same page.

Monday, October 1, 2012


Well, Mason's seizures continued today. Neurology came and said they had improved but they needed to increase his Keppra to see if that got it under control. Most importantly they needed to figure out why he was having more seizures. They did a cranial ultrasound today as well so hopefully that will give us some insight. He has not had any drain out of his EVD (drain) in his head for several days so I am hoping that this might be related. I also did discover that the CSF (cerebral spinal fluid) that I thought was a contaminate was not. One of the bacteria was (gram positive cocci) but the pseudomonas did grow out again. So Mason will be on 3 more weeks of antibiotics. The other cultures did not grow out anything else again. Other than that Mason is doing pretty well. His platelets were the highest they have ever been (149) and he is tolerating his feeds well. He did finally wake up a little bit and was looking around. It was good to see him be awake again. He has been in such a medicine stupor but it is necessary right now in order to get these seizures under control. Please continue to pray for healing, for these seizures to get under control, and for the dr.'s to be able to determine and fix the cause for the seizures. Here is a video of our sweet boy today:

Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28