10.30.16

We definitely had some highs and lows over the last few days. Definitely a bit overwhelming for all of us. Over the last couple days we have seen Sammy gained a ton of motor functions in his limbs. His left arm he is moving all over the place without any stimulation, which was the limb that was having the least response in up until this point. Over the course of the day his movements became even more pronounced. He also rolled from side to side last night in his sleep, which is huge as well. We are not seeing many intentional purposeful movements, but any movement is great right now.

On Friday they tried to place a PICC line, which is a longer term central line for. However, that was failed. It made for quiet the emotional day. They attempted to place in both legs, but the line did not go where it was supposed to go, and ultimately they pulled it out later that evening. They may or may not attempt to place another PICC line. They also attempted to pull the foley catheter, but ended up having to place it back again after Sammy was unable to urinate on his own. Another stressor for the day.  The therapists all came for visits as well. We worked on oral stimulation during feeding therapy. They worked on sitting up and tracking with his eyes during OT/PT. They also did an ECHO test on him to ensure not issues with his heart, as his heart rate has been soaring upwards. Everything came back clear.  Friday was definitely a tough day.

Over the weekend we had a very rough couple of days. Sammy’s drain was leaking at the back of his head again, which means we had to lower the tube pressure down again. Again the drain is what is keeping us in the PICU for the most part. The drain must get removed for us to move to a different floor. Because it was leaking and taking the path of least resistance, not going though the tube, they had to put another stitch in place. So far there has been no leaking since, thankfully. They will slowly begin to raise the drain again (pressure in the drain) and attempt to get to a place where the drain can be removed. Or Sammy will have to have a shunt placed.

They did a few more tests over the weekend for him as well. They did an MRI which came back with no concerns. Everything looks as it does for being a little over a week post-op. They also did x-ray of his abdomen to make sure there were no more signs of trouble with his liver. Everything is coming back clear. Which is great.

He was experiencing a lot of pain/frustration over the weekend. It was really hard on us all. His heartrate was skyrocketing up in the 200bpm. I ended up asking to pick him up and just hold him, which helped calm him down quiet a bit. I ended up laying in the hospital bed with him for most of Sunday just to keep him calm. He did finally sleep well Sunday night. Hopefully we will have better days ahead.

PRAY for his continued healing. PRAY that they are able to wean him off the drain, so as to eliminate the need for him to have a shunt placed. PRAY for him to have peace and calm as he continues to become more aware of his situation. PRAY for all those that come in contact with Sammy. PRAY for us all as we face some tough decision ahead as we learn more about Sammy’s diagnosis. PRAY for continued calm and peace.

10.27.16

Another day of small improvements for Sammy and definitely a busy day. He had visits from OT, PT and speech/feeding therapist today. The feeding therapist did some apple juice today, but is concerned about his swallowing. She will continue to come back, but will be more focused on oral stimulation instead of working on getting him to swallow. As he is coughing and worried about agitating him with all the extra coughing. PT and OT came in together. They were working on getting him to track with his eyes more. He is not focusing well and his eyes are pretty much always crossed currently. They worked with some bells and used a few other objects to grab his attention to follow with his eyes. They also brought us a chair for Sammy to sit in as one of his positions through out the day. They would like him up more, but he slouches down and this chair will help keep him in a good position. They sat him at the edge of the bed again as well. So working towards getting him out of bed and moving around some. Still limited because of the vent draining fluid from his brain.

Neurology seems pleased with how he is doing. They will be keeping him on an anti-seizure medication for a while just as a precautionary since he was showing some minor seizure behavior. They will want a follow-up MRI as well just to make sure the brain swelling has decreased the way it is supposed to and that there is nothing else causing the limited function in his limbs, which is mostly in his left arm currently. His other limbs are doing better. He is moving around both legs a ton, but his arms are not moving around much, if at all.

Sammy still has an elevated pulse and they are not totally sure what is causing it, but can be a number of things. He did not have any more fevers today, thankfully. But is still on medications for a possible infection until they get the results back from the draws they did yesterday. He also had an ultrasound today of his liver. It is showing larger than normal, but no news about what they will be doing for that, if anything at all. The other thing done today was they moved his feeding tube from being an ND to a NG. So before it was going past the stomach, now they pulled it back into his stomach.

We still have not had a visit from oncology yet about the pathology results, so hoping for a visit tomorrow. However, the results did come back yesterday. But we will not know the full extent or a treatment plan until we see the oncologist that will be handling Sammy’s case. The tumor came back as Medulloblastoma. It is the best outcome of the possibilities that were presented to us. This is good news for him. It is a rare brain tumor, but is more common than the other alternatives. Medulloblastoma from our googling makes up about 2% of all brain tumors, and about 15% of pediatric brain tumors. The recovery rate can be good depending on the risk and stage diagnosed, which we do not have currently. We most likely will not have that information until after he has a spinal tap done sometime next week. That will help determine if the cancer cells have spread. So for now we have a name, a preliminary diagnosis. It is no longer a ghost, but something concrete. Medulloblastoma. And I would be lying if I said I was not terrified of the road ahead. All we can do is trust. We have no idea where this road will take us or what his future holds, all we can do is trust that there is a greater plan. One we know nothing about. For now , we have been prepared for the likelihood of both radiation and chemotherapy treatments.  To expect at least year. But nothing is really known. As we know more, we will share more. So for now we continue to wait, with our main focus still being Sammy’s recovery from his brain surgery. We can do nothing about the next step until he is recovered from this first step.

PRAY for continued healing and improvements as Sammy’s brain and body recovers from surgery. PRAY he does not feel anxious about all the new things around him and all the things ahead. At this point we have no clue what he is processing or how much he is really grasping of any of this. PRAY that he continues to take baby steps in his recovery, especially in regaining his speech and mobility in all his limbs. PRAY that the cancer has not spread and that his risk is low. PRAY our Sammy continues to shine through the fog, little by little. PRAY for little brother, Logan, as he continues to fight his this virus, so that we can spend time as a family again. PRAY for our hearts to stay calm and be lead to the land of “what ifs”, especially as we await answers and our questions grow with the news of his preliminary diagnosis. PRAY we are able to surround Sammy with a spirit of calm and peace. PRAY Sammy always feels he is safe and loved, never scared, afraid or anxious. PRAY for all the staff that are surrounding Sammy regularly and that they have clear thought in the treatment of Sammy and nothing is overlooked. We have been blessed with a wonderful staff that seems to deeply care for Sammy as a patient. PRAY for rest, for all of us. That we each feel refreshed and rested at the start of each new day.

10.26.16

Just another day in our hurry up and wait cycle we are currently in. He had a good day overall, not too much change in his condition. It was definitely a busy day for our little man. We had visits from Speech/Feeding and PT. He got to do some licks from a lollipop today and seem enjoy it. Still having some trouble swallowing. The physical therapist was able to move Sammy to sit up and him at the edge of the bed for a little bit. Which really seemed to do well with and enjoyed. His levels seemed to do better with the change of position. They are hoping to get him out of bed in the coming days, which would be wonderful.

Sammy did spike a fever during the day, which is a bit of a concern for possible infection. They drew fluid off the brain vent, urine and blood to send for testing to make sure not infection. So we have to wait 48 hours for the results from that. In the meantime they are giving him some extra medications to help with the risk of infection.

He did have some issues with the pressure in his brain and with the vent. He was having some leaking from the vent site, so the neurosurgeon had to add a stitch to help give a better seal. They also lowered the pressure level to help with the leaking. They are hoping to raise it back up over the next few days and eventually wean him off the vent. For Sammy to be moved out of the PICU he has to have the vent removed. So that is what we are working towards.

PRAY for continued healing for Sammy. PRAY that as he becomes more aware we are able to keep him calm and help him understand all that is going on around him. PRAY we are able to keep our focus straight and not get caught in the land of “what ifs”. PRAY that Logan continues to heal and get healthy, so he can spend time visiting with Sammy as well. PRAY for a continued spirit of calm and peace during his recovery.

10.25.16

Sammy was much more alert today, awake more of the day and seems to be more aware. He kept the EEG on all day and overnight again to continue to monitor for seizure behavior. It appears that he has had a couple of minor seizures that have lasted a few seconds. So they are keeping him on some seizure medication. Sammy had another MRI today, it was a shorter one that gives more general look than a really detailed look. They found that the brain is retaining fluid and there is a small build up. We have not learned what they will be doing for that situation just yet. They tried change the level of drainage from his brain to increase the pressure, but he could not handle the extra pressure, so they changed it back down. Sammy has been having some increased heart rate activity, so they are trying to find the source for the spiking and higher resting level.

We also had visits from PT, OT and Speech/feeding during the day. Feeding therapy went well. He had his first ever taste of soda, Sprite. He seemed to like it and worked well with trying to swallow it. She is also working on him with ice chips to get him swallowing. OT and PT will be doing more in the coming days as they remove the EEG from him and he is able to leave the bed. PT came back a second time yesterday and got approval to sit him up as long as stayed in view of the EEG camera. So Sammy got to sit up, supported, in bed for a little bit yesterday. He seemed to respond really well to the change in positioning.

We did also see Sammy make some intentional responses, such as a slight head movement for “no”. All baby steps, but going in the right direction. He has had decreased movements/responses from most limbs. His most active limb is his left leg. And his left arm is the least active/responsive. They believe what we are seeing is called Mutism. Which can occur in about 25% of surgeries like Sammy’s. We would see a decrease in speech, and also in motor response. They really do not know much about it, other than it is a rarely permanent. But his responses are likely falling into this category.

We still do not have any results back from pathology, we are hoping to hear Wednesday or Thursday. This will give us a better look at what our adventure might be for the long term. But for now our focus stays on the here and now. Helping Sammy recover enough to move out of the ICU and back onto the floor above.

PRAY that Sammy continues to improve in his recovery. PRAY for any anxiety he may be feeling as he becomes more aware of his surroundings and situation. PRAY his body is able to continue to rest and heal. PRAY for each of the staff that come in contact with him, that they have clarity and peace for their treatments and therapies. PRAY for us as we all grown more anxious about a diagnosis and hearing back from pathology. PRAY we are able to keep a spirit of calm and peace as we surround Sammy. PRAY that he feels God’s hand of healing and protection. PRAY for Logan to recovery quickly from the virus he has, and that all those who come in contact with him stay healthy.

10.24.16

Today was a rough day. It was not bad. Just hard. Sammy has spent most of the day in pain, especially as he becomes more awake. His condition is mostly unchanged. We tried to see about starting him on oral feedings, but he is not responding to swallowing properly. We will try again tomorrow with the feeding therapist. So for the time being he has a nasal feeding tube. We are hoping that him getting some nutrition will help him get stronger and make some more strides in his recovery. They are concerned about seizures still so they have upped the seizure medication and are keeping him hooked with an EGG for the night to monitor him. They are not really sure why he is having seizures, but definitely not uncommon. Just not a normal for where the surgery for him occurred. We are waiting to hear from oncology about the pathology results to determine his actual diagnosis. They might come back tomorrow, but by end of week if not. So just lots of waiting for now. Lots of praying and supporting our little guy any way we can. We are reading to him lots, as that is one of the only things we can really do with him right now. Hoping tomorrow is a better day for us all and that he makes some more strides forward.

Pray for his healing, that is is made whole again. Pray for his pain, that he can tolerate it with ease. Pray that he can urinate on his own, as he has had difficulty since the catheter was removed. Pray that the seizures are regulated and that they are not impacting his functioning. Pray he continued to gain back functions, that me is able to make more movements of purpose. Pray that we get to see our Sammy again, and not just a shell of who he was. We want to see him shine again and shine bright. Pray he is surrounded by comfort. Pray for us as we navigate this road unknown and that we can continue to keep a calm and peace around us.

10.23.16

This morning was amazing. We got a little peek at OUR Sammy again. He seemed to be with it a bit more and started to make some voluntary movements. Lifting up his arms and moving his legs, sticking out his tongue, and even lifting his bottom off the bed. He was pretty out of it still today. Most of the movements were in his sleep, as he spent most of the day asleep. But rest is one of the things he needs to fully heal. He thankfully has not had any more seizures. So very stable today, with minimal issues. Tomorrow they are going to talk nutrition, since he has not had food since Wednesday afternoon in all truth. As he slept during his ONLY time he was allowed to eat since arriving, which was on Thursday evening. Still our main focus is just on his recovery from the surgery and getting all his functions back.

PRAY that Sammy has an awesome night sleep and wakes up ready to wow us all. PRAY he continues to make steps forward in his recovery, so he can get out of the PICU. PRAY that we continue to be able to balance being parents to both our children and give them each the time they each need and deserve. PRAY we all stay healthy as the stress of the last 5 days weight on each of us. PRAY for the staff supporting our family and that they have a clear direction to go with our son with his care and treatment. PRAY for our continued calm and peace. PRAY we all stay focused on the here and now, and do not allow our minds to wonder into the months ahead and land of “what ifs”. PRAY all those who surround Sammy are able to encourage his healing in the best ways possible.

10.22.16

Today was mainly about just Sammy recovering from his surgery. It was a bit stressful as he never really became fully responsive today and is still quite out of it. He did take a few seizures today on top of everything else, so they started him on an anti-seizure medication. He took a much longer one tonight and gave him a bit of a different one to end it. It was not a bad one just twitching for almost 5 minutes.

We did receive great news following his MRI today. The neurosurgeon was very happy with what he saw and could not be happier with the scan. There is one possible area where tumor is left, but does not appear that the spinal cord is impacted. They will do another one in a couple weeks to continue to monitor the progress.

The new few days are going to be all about recovery and getting released from the PICU (Pediatric Intensive Care Unit). They really want to see him come out of his fog and also want the drainage from his brain to be stabilized.

We now have some more back up. Charles’ parents also arrived tonight. Which will be nice to have in addition to my mom being here as well. We got to spend some time with Logan tonight and he is staying with the grandparents tonight. It was nice to have our family whole tonight.

PRAYERS : Pray for continued stability for Sammy. Pray that the seizures are controlled and that he does not take anymore. Pray that Sammy begins to become more aware and starts talking and continues to show improvement. Pray for his healing and swelling to go down. Pray we are able to manage being there for both our children during this time. Pray Logan feels our love despite the focus on Sam right now. Pray for our continued peace and calm.

10.21.16 :: Surgery Updates

UPDATE 10/22/2016 @ 0630 : Sammy has been weaned from oxygen. He is responsive to a degree, but not fully awake. He has not talked yet either. We will be in PICU for the next few day, basically until they remove the tube draining fluid from the back of his head. We don't know much beyond that, but told to prepare for a month long stay at the hospital. Nothing will be done for the cancer until he has fully recovered from the surgery. Right now our focus will be on day to day recovery from his surgery. PRAY that his MRI goes well today and that they see what they want to see. PRAY Sam grows to be more and more responsive with no residual problems from possible damage during the surgery. We were told a laundry list of things that could be umpacted, from speech to motor functions. PRAY for his continued stability. PRAY for us as we transition Logan back into our home and care and that we can balance support for him during this long road ahead. PRAY for Charles' parents as they travel here today. PRAY for continued peace and calm to surround our family and Sammy.

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UPDATE 10/21/2016 @ 2000 : We are with Sam. We got to come back about an hour ago. He is still out, but is now off sedative. So just waiting for now. The rest of night will be checks by PICU nurses every hour. For now we wait. PRAY for this new transition for Sammy as he copes with all these changes. PRAY for us as his parents that we know how to best support him as he takes in all that has happened. PRAY he has a good night sleep and is able to remain in a peaceful, calm state. PRAY that over the next 24 hour we see all his functions return to normal, with no lasting nerve damage. There is a high risk of regression in multiple areas. PRAY for us all to sleep easy and get refreshed after a very draining 48+ hours. PRAY for Logan (our 18 month old) as we hopefully will begin to transition care of him. We are so thankful for our friend who has been able to keep him as apart of their family for these last 48 hours and into tomorrow.

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UPDATE 10/21/2016 @ 1735 : Out of surgery. We have not seen him yet. We spoke with neurosurgeon and anesthesiologist. Surgery went as great as we could hope for. He did loose significant blood and needed a transfusion. They were not able remove it all, but feel that future treatments will address anything left. There is no definitive diagnosis yet, and we will hopefully know more by Tuesday. We are waiting for okay to see him. He will spend a couple days at least in the PICU. PRAY for healing. Pray for a spirit of calm as Sam becomes more aware of all that has happened. PRAY that no issues arise during this immediate recovery period. PRAY we all are able to rest and continue to keep a spirit of calm and peace. PRAY the MRI in the coming day shows what they want to see. PRAY we are able to find direction for our next step.

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UPDATE 10/21/2016 @ 1545 : They are beginning to close Sammy up. He is still super stable. Expect another hour or so till surgery is complete. He will be in PICU for at least tonight. PRAY surgeons continue to stay focused and alert as they wrap up his surgery. PRAY they were able to remove everything needed for a healthy recovery. PRAY Sammy continues to stay stable. PRAY for our continued calm and peace.

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UPDATE 10/21/2016 @ 1435 : Sammy's doing great, super stable. Still working on removing tumor. PRAY for continued steadiness of those who touch Sam. For them to stay focused and energized. PRAY that they are able to minimize any damage to surround areas and the nerves in that area. PRAY for a clear diagnosis. PRAY for our own calm and peace. PRAY they are able to remove all the tumor necessary for healing.

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UPDATE 10/21/2016 @ 1230 : Surgery is going well. They are at the tumor and beginning removal. Sam is stable and has not required and blood at this point. PRAY for steady hands as removing the tumor. PRAY for minimal impact on nerves surrounding the tumor. PRAY that there is no issues with his spinal column. PRAY for a clear, swift diagnosis. PRAY for continued stability for Sam, for his vital organs to maintain stability.

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UPDATE 10/21/2016 @ 1135 : Surgery is under way. They are almost to the tumor site, and will then begin removal of the tumor. Sam is stable and doing great. PRAY for clear view of tumor and no complications in accessing tumor. PRAY for continued steady hands of all those who touch Sam. PRAY for minimal blood loss, as to avoid the need for a blood transfusion. PRAY for quick exchange with pathology in passing off sample of tumor. PRAY for clear diagnosis of the type of tumor. PRAY for continued calm spirits for ourselves and our family.

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UPDATE 10/21/2016 @ 1025 : First call. He is now in surgery. Nurse said he is doing great and pre-procedure went great. PRAY for Sammy's vital organs. He is on a breathing tube, which could cause heart failure. PRAY for these first incisions. They will be doing a craniotomy to access the tumor. Also doing small hole in back of head to reduce pressure and drain spinal fluid that has built up. PRAY for steady hands of all those touching Sam. PRAY for us to have a spirit of calm as we wait for our next update in about an hour.

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UPDATE 10/21/16 @ 0800 : We just left Sam as he is being rolled back. PRAY he takes well to the meds being given to keep him calm. PRAY for the anesthesiologist as the prep Sam to be put under and begin to hook him up to all the various lines. PRAY for the surgeons as the begin to prep him for surgery. Our next update will come once they start the surgery, which may be upwards of 2 hours from now.

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ORGINAL POST 10/20/2016 @ 1900 : As of right now Samuel will be going in for surgery at 0800 PST tomorrow. They are thinking it is a cancerous tumor. Just not sure what specifically it is. Between 2 types basically. The neurosurgeon has blocked out 12 hours for his surgery, but we don't know specifically how long it will be. And how they remove tumor may change based on what pathology determines the type to be.

Pray we all rest well tonight, especially for the surgically team.

I will try to update with specific prayer needs as we tackle the day tomorrow. Just have to trust God has a plan already there.

10.20.16 :: Initial Post

Please keep our family in your thoughts and prayers. Sammy was admitted to the hospital last night after discovering he has a mass on his brain during a CT scan. We unsure of what this all means. We will be learning more this morning after we talk to the specialist.

Update 10/20 - 0930 : Sammy has another scan at 1200, which he will be put under for. We will be meeting with specialists at some point this afternoon.

Update 10/20 - 1600 : The scan went well. He was a trooper. We talked to oncologist. She is preparing us for this to be cancer. Won't know until biopsied, but very likely the case. Sam will most likely be having surgery tomorrow. We hopefully will know the specifics of that later today. He will have at least a week of recovery in hospital, followed by several at home.