Chase has Continued to Make Progress with Breathing

Over the past few days, Chase has continued to be able to breathe independent of his ventilator for several hours, including six hours today (Halleluiah!). Although the vent provides some pressure support to ensure that his lungs and airways remain open, he is triggering the breathing on his own and it seems to be getting better by the day. We’re very encouraged by his progress and hoping to slowly reduce the amount of pressure support so that he can soon be completely off the vent for periods of time.

Chase has also continued to be responsive lately, trying to communicate with leg movements from time to time. Some days he has more energy than others - today he picked out his movie by pulling his leg at the right time as Carol read the list of options. While we continue to get skepticism from the Neurosurgeon (who seems to think these are just reflex responses), we’re pretty certain this is cognitive, unless the movements just happen to be coincidentally timed repeatedly over several days. I guess Chase will just have to prove it himself someday, when he’s even more responsive and moving on command whenever he wants.

We are planning another prayers service on the first Sunday of the month, November 5th, at 3 pm. It will be held once again at the chapel of Holy Name Parish located at 630 Harmon St. in Birmingham, MI 48009. Please spread the word – we had about two-thirds of the chapel filled last time and we’d really like to keep the momentum going. We have no doubt that Chase’s Prayer Warriors are making a huge difference in his recovery and we are truly grateful for all your prayers and support!!

God Bless!

John & Carol
Chase & Barbara Ann

Chase Rejected his Doctor and Defied Medical Logic

Last Friday, Chase’s Neurosurgeon came over to assess his shunt site and drain the excess fluid. We were anxious to show the doctor how much more responsiveness Chase has had lately but he didn’t seem to want to cooperate. Over the course of about an hour, Chase wouldn’t budge or indicate the slightest response. Even when we did the breathing test again, he barely took one shallow breath over a few minutes, which was really concerning.

Of course, the Neurosurgeon took the opportunity to remind us that he was pretty certain that Chase could not be responsive since he is essentially brain dead. Although this wasn’t surprising, it was nonetheless very frustrating because we know otherwise, particularly given Chase’s recent improvements.

After the doctor left, I went back to see Chase and told him I was worried about him. When I asked if he was OK, Chase pulled up his leg (as he has in the recent past to communicate). I was extremely relieved (although frustrated with his lack of cooperation – I can’t blame him for not liking the docs who are trying to convince us to “give it up”). Then, I noticed that Chase was breathing over his ventilator so I changed the settings to allow him to breathe on his own, with pressure support to ensure that his lungs remained full. He managed to tolerate this for about an hour – the longest in quite a while. The following day, Chase triggered his own breathing for about 8 hours – simply unbelievable, given what happened during the doctor’s visit the prior day.

I called the doctor back and explained that it seems Chase just doesn’t want to cooperate with him and if he wants to observe for himself how well Chase is doing, we’ll need to use a webcam. We set this up over the weekend and it’s working; we’re also video taping Chase’s movements and breathing, which is continuing to go well. However, the shunt site is accumulating fluid again and will probably need to be drained soon – this might actually be a good sign in that we will be able to provide additional pressure relief. We’re having the fluid tested to get more definitive information on what exactly it is and where it’s coming from (although we believe it’s debris from the dead tissue, along with spinal fluid). We also know that the removal of the dead tissue is our gating factor to get the tumor to shrink and relieve the pressure on the brainstem – this drainage might represent progress with this key issue.

During our collective prayer session tonight at 9 pm EST, we’ll be thanking God for the continued progress that we’re seeing, particularly with Chase’s breathing. We’re praying that this will soon enable Chase to breathe completely on his own once again. Thanks to all the Prayer Warriors for joining us in this intention and supporting Chase’s recovery.

God Bless!

John & Carol
Chase & Barbara Ann

Chase is Continuing to Improve - Praise God!

Over the past few days, Chase has had continued movements in both of his legs on command – he uses them to answer questions regularly (although sometimes it can be confusing and frustrating, at least it’s interaction again which we didn’t have until recently). Carol is finding creative ways to play games with him again – you can imagine what it’s like trying to play Uno with the little Trooper, but at least he seems to be enjoying it and hopefully it’s lightening his day.

Chase’s breathing has also improved significantly – we’ve been slowly reducing the amount of oxygen supplied by his concentrator through the ventilator. A couple of weeks ago, he had situations that required more than 30 liters to sustain his saturation level and now he’s below 3 regularly. Sometimes he maintains his saturation level so well that we completely shut off the concentrator and let him breathe room air. This is starting to become a pretty regular daily occurrence. We’re also starting to back off on the use of the ventilator for short periods of time – just providing pressure assist so that he can breathe on his own with a bit of a boost of pressure when he takes a breath. He’s been slowly working up the amount of time he can sustain this from 15 minutes a few days ago to about 45 minutes today.

These are all extremely encouraging signs that Chase is recovering. The Neurosurgeon is planning on stopping by in the next couple of days to check on Chase and see these miraculous improvements himself. We’re also hoping to get him to drain the fluid that is starting to accumulate around the shunt area. Hopefully, that will help to remove more pressure and enable Chase’s nerves to continue “waking up”.

We are more grateful every day for these encouraging improvements – Praise God! Thanks to all the Prayers Warriors for remaining vigilant in supporting Chase’s recovery. We believe we are being rewarded for our faith and patience.

Lots of love and gratitude - God Bless!

John & Carol
Chase & Barbara Ann

Keep Believing in Miracles - They Happen Every Day!

Since returning from the hospital, over the past couple of days Chase has been more responsive and able to move his limbs and trunk. After we got such strong feedback from his doctors, including a Neurologist and Intensivist indicating their belief that Chase would never be responsive again (essentially “brain dead”), I was anxious to give them the great news.

According to the Neurologist, the movement of his trunk is considering “posturing” and an indication of brainstem function. Along with the movement of his legs, this is confirmation that he’s not “brain dead”, although he didn’t’ believe this was an indication of “higher function” from the cortex. Since his review of the MRI, which showed constricted blood flow to the cortex, he was convinced that the cortex was not functioning and irreparably damaged. He stated that any response of the cortex would be miraculous at this point.

I asked what kind of response we would need to see from Chase to confirm that his cortex was working and that he had cognitive ability. The Neurologist stated that this would require affirmative responses (not just limb movement, but on command repeatedly to specific requests). So yesterday we asked Chase to move his leg if he liked the movie we just played for him and he responded by pulling up his right leg (this is the one that had weakness first, several months ago). We then asked him several other questions and he used his right leg to respond. We reported all of this back to the Neurologist who was just amazed and astonished (this is truly a miracle in his medical opinion).

I reminded him of my comment from the previous day that despite whatever their tests showed, we were certain that Chase was still “with us” and that we believe he’s being healed by the grace of God. We pointed out that fortunately there’s no order of magnitude in miracles – anything is possible through faith and prayer. He understood our position and agreed to support us, although he certainly didn’t expect to see this kind of responsiveness so soon (if ever again).

Today, Chase continued to respond to questions – this time with his left leg. He seems to be regaining some strength slowly on both sides. The most important thing is that he’s demonstrated cortex functionality which means that once pressure is relieved on the brainstem from the tumor, he should regain the rest of his motor skills.

The other good news is that the tumor hasn’t increased in size at all over the past couple of months with more indications of the accumulation of dead tissue – this process is taking much longer than we’d like, but we’re committed to staying the course and supporting Chase’s recovery.

We believe that Chase deserves every opportunity for his body to overcome this illness. Thanks to all the Prayer Warriors for your support and continuing to believe in this miracle – it is unfolding before our eyes and the medical community will be gaining a deeper understanding and respect for the support Life when a patient is in this condition.

Lots of love and gratitude - God Bless!

John & Carol
Chase & Barbara Ann

Chase is Going Home!

Chase is finally going to be returning home, after a week at the hospital since the “run-in” with Protective Services. All in all, everything seems to have worked out, but this was more grief than we needed at this point. We’re just happy to be getting him back home in a “safe” environment that he’s comfortable with.

It turned out that the concerns about his lungs were somewhat unfounded – the hazy x-rays were because Chase needed more pressure and volume to hold open his bronchials. Since the vent settings were changed, he’s been doing much better and the x-rays confirm this. His bloodwork has also remained pretty stable, with hemoglobin in the safe range and improvements across the board.

The biggest concern we had about going through another hospital admission was related to how long it would take to get discharged and whether we would get resistance with taking him home. Since Chase has been fairly unresponsive lately (although he’s been moving limbs and even moved his head for me the other day), they were compelled to conduct a “brain death” protocol test which we suspected they would do. Fortunately, we got through this latest hurdle again, since Chase demonstrated that he was able to take a breath without the vent (although it was only a very short test). This was enough to confirm that he has brain function and enable us to get back home – hopefully for long enough for Chase to demonstrate solid evidence of recovery so that any other encounters with conventional medical practitioners will be without resistance for the treatment protocol that he’s receiving.

As regularly scheduled, we’ll be praying collectively today at noon EST, with the intention that Chase’s transfer goes smoothly so that he can get settled back in at home and get some deep rest again. We truly appreciate all the prayers and support for Chase and our whole family.

God Bless!!

John & Carol Sammut
Chase & Barbara

Chase is Still in the Hospital but Getting Ready to Return Home

As mentioned in the previous update about the Protective Services debacle, “all’s well that ends well”... we’re almost there in terms of a happy ending to this latest episode, but not yet. It turns out that there have been many blessings as a result thus far. First of all, Chase got the transfusion that he needed and it’s making a big difference – his hemoglobin is back up to around 10 +/- and it seems to be stabilizing. He’s also getting a lot of close attention to the electrolyte imbalance issue that has continued on and off for the past couple of weeks – they still don’t have a good answer for this yet, but we’re continuing to investigate by process of elimination. Chase has also had several lung x-rays with varying indications of issues – once again, they still don’t have a good explanation, but his oxygen saturations have improved after changing some settings on his ventilator and administering an IV antibiotic (in case this is infection related, which they haven’t been able to confirm).

We were close to being able to take Chase home a couple of times over the weekend, but decided to continue allowing the monitoring so that they could reach a more clear assessment of these issues and hopefully prevent any recurrence. Another benefit of the dropped charges by Protective Services is that it has brought to light for many other people a situation that could wrongfully occur – with the recent publicity of our situation, hopefully an investigation will take place that will cause the agency to use more prudence going forward to avoid putting others through this unnecessarily. In addition, we’ve gotten even more Prayer Warriors for Chase as a result of the word getting out – we received many messages from people who were outraged and are praying for our family, especially Chase. Apparently, the news clip got a lot of feedback and they want to continue to follow our story going forward.

So although we were tempted to pursue some other recourse, we’re choosing to “forgive and forget” and remain focused on our primary objective of getting Chase healed. With the help of our thousands of Prayer Warriors, we’re keeping the faith and believing that we will be rewarded for remaining vigilant in this crusade for Chase. Thanks for all the support!

God Bless!!

John & Carol Sammut
Chase & Barbara

We Overcame Ludicrous Charges by Protective Services

Last night, I was shocked to come to our front door to find a group of police officers along with two representatives from Protective Services claiming that they had a court order to remove our children due to allegations that we were conducted medical procedures that were endangering Chase. You can imagine my incredulous response – what?!, who?!, why?! The trumped up charges were so ludicrous that it was hard to believe they were serious – that we conducted unauthorized blood draws and gave him sea salt (when his sodium was dangerously low)?!

When I explained that everything that we’ve done has been under the supervision and guidance of licensed medical practitioners and provided documentation to substantiate this, their response was that “it doesn’t matter, we have a signed court order and we have to remove your children”... thank God I didn’t have weapons in the house, or I might be in big trouble right now. Instead, I had to swallow hard, showed them Chase’s accommodations, including his ventilator and explained that if this was to happen, we would need to use my back-up system (which they knew nothing about) and that he wasn’t in a condition to be safely transported anywhere. Eventually, they realized this and let me direct the transfer to Beaumont hospital, who I contacted and got them ready with pre-admission paperwork so that he could go right up to the Pediatric ICU unit that is familiar with his case. This actually went reasonably well, despite the fact that it certainly wasn’t necessary to have six officer escorts, a fire truck, ambulance, security guards, etc (including a security guard in our hospital room all night). I told them that if there was a legitimate concern, a simple phone call or meeting would have been sufficient to clear it all up – but that’s beside the point.

By Divine Intervention, Carol and Barbara were at a gymnastics class so they weren’t exposed to this madness, particularly since the warrant required the removal of Barbie as well. I just can’t imagine the needless trauma that would’ve caused her. We were able to get their approval to let her stay at her God Parents home (who are registered foster parents in the State of Michigan) while we worked to clear this ridiculous accusation up as soon as possible (another night with little sleep).

Well, as expected, when we provided our documentation to the court, the Prosecutors Office declined to even pursue any charges and requested immediate dismissal of the case, which the Circuit Judge agreed to do. In the meantime, we got more “excitement” than we needed with the situation that we’re going through. On the bright side (although it’s painful to overlook the gross negligence in their pursuing such a charge without doing the slightest reasonable diligence), Chase was able to get a transfusion, which he needed to pull up his hemoglobin and some help with balancing his electrolytes. Of course, we would have been happy to arrange all of this in an orderly fashion, if someone who had such a concern had the decency to discuss it with us.

It seems that the Henry Ford Hospice service, which we engaged for about a week and subsequently discharged from our case, started this ball rolling (probably feeling slighted by our dismissal). When they hinted a couple of weeks ago that they would be placing this call, we thought we had head off the issue by getting our Doctor’s orders reinstated and clearing the situation with them. Then when we went to follow-up with them about our arrangements for Chase’s ongoing care, they didn’t return our calls. Nevertheless, someone apparently went way out of their way to make things difficult for us and they are now protected under privacy privileges of the Protective Services agency. This is a real eye-opener and a nightmare that we wouldn’t wish upon anyone – fortunately, we got it resolved quickly and now it’s getting publicized – Channel 4 News will be featuring the story at 11 pm tonight. We’ll have to see what their “take-away” is, but in discussions with us they seemed just as flabbergasted as we were about this whole situation – just think about it, the medical establishment that was trying to convince us to “give it up and pull the plug” is now trying to protect Chase from being harmed by us since we’re administering medical care at our home?!?

Anyhow, as they say, “all’s well that ends well” and the final chapter of this crazy episode will hopefully be a safe discharge and return home tomorrow, or soon thereafter once Chase’s bloodwork stabilizes again. I’m just thanking God that he wasn’t harmed during this ridiculous sequence of events and we’re getting some help for a couple of days (although we can do without help under these kind of circumstances going forward). After digging some more into just what happened behind the scenes, we’ll need to find another way to get whatever assistance we need in a more practical way with trustworthy home service organizations – this is just another learning experience about our wonderful medical and administration system... Fortunately, Chase’s Prayer Warriors and Angels were there to protect him and our family once again. Thanks so much for all the prayers – they’re helping more than you’ll ever know...

God Bless!!

John & Carol Sammut
Chase & Barbara

Chase is Slowly Coming Around

We had another great prayer service for Chase this past weekend – it was extremely inspiring and uplifting for us, with about 70 people who joined us in holding Chase up in prayer to the Lord, as well as countless others who were there in spirit. We have no doubt that sessions like this are making a big difference for our whole family to get through this challenge. Although this process of supporting Chase’s recovery is requiring a huge commitment, it’s been worth every effort and we’re certain that it’ll pay off in the long run, regardless of the outcome. Another inspiring story that was recently forwarded to us can be seen on the following link http://cjcphoto.com/can/ - this helps to keep things in perspective….

Chase had a great weekend and has been fairly stable for a while now, other than a few isolated scary moments, which we’ve become pretty proficient at handling. He’s even started to move a bit lately – his right leg, trunk and head occasionally. He seems to be waking up a bit, which we’re sure will continue once he gets more energy as his hemoglobin rises again. We’re slowly making progress with a combination of nutritional supplements, epigen and IV albumin, all administered at home. We monitor Chase’s bloodwork ever other day and the recent results are very encouraging.

In the meantime, Chase is getting a lot of rest, which is what his body clearly needs to recharge the batteries and fight off this tumor. We’re doing our best to keep his spirits up by reading stories, playing music and movies, etc. Anyone is welcome to provide a compilation tape or CD that you think would be uplifting. Chase is probably getting tired of the ones we’ve been playing lately.

As regularly scheduled, we plan to pray collectively on Thursday at 12 noon EST for the miracle of Chase’s return to Divine Health. We’re also going to continue with the monthly prayer services on the first Sunday at 3 pm – the next one will be on November 5th. Thanks again for lifting Chase in prayer and helping us to keep the faith!

God Bless!!

John & Carol Sammut
Chase & Barbara