We have created a new website to keep you all updated about Peter and what has been going on in our lives. You will also see a new update there when you visit the page! Please visit this new website/blog for future updates.
A Good Friday update for Peter’s prayer warriors: A number of people have contacted us recently to ask how Peter is doing and to encourage us to send out another update. Life stays pretty full juggling the pastorate, Peter’s home health care and other responsibilities, but we still want to testify to God’s faithfulness, as we anticipate celebrating this Sunday that He is risen indeed:
Peter’s recovery has slowed markedly, but he has days when he is super alert, watches us closely and responds to therapy we attempt with them. His left hand remains trembly and imprecise, but continues to be his chief means of communication. If you hold an apple or banana before him, and ask him to take the apple, he will usually reach out and accomplish this, even though it may take him a while. We have tried moving from objects like these to letters and words, but still his responses to those kinds of requests are pretty sketchy. He is also very free to smile and hug friends who lean down to talk with him–he always seems to appreciate that.
For those of you who pray for us, we are asking the Lord to move us to a new home, which includes some sort of “mother-in-law” quarters. Our plan would be to rent out the extra room to a couple of college guys, bartering “rent” in exchange for a number of hours of Peter’s care load. The last few months have been quite taxing to Doug, as he assumes the heavy part of Peter’s care when others are not present in our home. So he works as a pastor all day most days, and then comes home at 5, when our caregivers usually get off, leaving Doug the lion’s share of care from 5 pm-10 pm, when the night nurse arrives. It can make for draining days.
All this to say, that when we are drained, the Lord is very punctual in sending us encouragement, often in the form of someone letting us know of their prayers, and often in the form of someone offering to stay with Pete so we can go out, and often in the form of eternal perspective we get through the Word of God.
Peter’s life dramatically differs than what we expected for our son, but we know his ultimate desire when he could speak was to be useful to the Lord. We do believe, though for the Lord’s sake, Peter has been killed all the day long, and his young life regarded as a sheep to be slaughtered, (Romans 8:36ff) that the Lord makes his life an offering of useful service to Himself. Peter’s journey with brain injury requires just as much or more emotional work as physical work, and daily we fight for joy. And we do it with these Romans 8 truths of the crucifixion and the Resurrection.
“Days of darkness still come o’er me, “Sorrow’s path I often tread, “But the Savior still is with me, “By His hand I’m safely led.” Trusting in the Wondrous Story, Selah Helms
To Peter’s Prayer Team:
Some of you have been asking for an update on Peter. It has taken a while to get one out as Doug and I were really behind on things when we returned home from Cincinnati, so thanks for your patience.
Peter is doing very well without the trach, though the doctors told us not to get rid of our trach supplies for two months, just to make sure that he can manage long term without it. We will return to Cincinnati at the beginning of May so that the doctor can scope his repair to check the status of its healing.
He does seem more comfortable without the trach. He sleeps better at night, and he seems much more relaxed in general. It makes me sad to think how uncomfortable he was for so long with that thing in the wrong position.
Also, the intensity level of his daily care has lightened significantly. It is less taxing to care for him without having to suction him every few minutes. Even though someone still has to be with him, the house is more peaceful.
Some have asked whether this means that Peter can now be admitted to formal rehab. The answer is a little complicated. The barrier that the trach presented to his getting rehabilitation is now removed, and we are so grateful. But in order for Peter to receive the most benefit from a program of rehabilitation, he would need to be able to improve daily on repeated skills. Because he is still so inconsistent on his daily responses, rehab would not profit him as much until he can build daily on learning new skills. We continue to hope that Peter will come to the point of readiness on his level of consciousness to receive inpatient rehab treatment.
In the meantime, we are receiving in-home speech therapy–building on the limited oral skills he has right now, like receiving small bites of pudding-consistency food and swallowing–as well as in-home physical therapy and some occupational therapy. More on this later.
When we cross paths with those of you near and far who ask about Peter, you cannot imagine how greatly you encourage our hearts to persevere. Thank you so much for sharing this journey with us.
It has been a long time since we have written an update on Peter, but we continue to be thankful to you who remind us you still pray for Peter and for us. Here are some of the current issues he and our family face:
He has an appointment with the specialist in Cincinnati (we have referred to him in previous posts). If Peter is approved for treatment, we will go to the Children’s Hospital there in mid-January to have his airway scoped and hopefully repaired with the eventual goal of taking out the trach. It’s all a waiting game til this appointment.
His left arm continues to “come back to life.” He will give his dad a goodnight hug (Doug spends the hour from 9-10 pm every night with Pete, praying with him, encouraging him and interacting with him). He can grab a swinging ball, give you a fist bump, rub Winston’s head and sometimes wave goodbye.
While these are all still minimal responses, any degree of feedback he gives us makes it easier for us to feel connected with him when we care for him. He still has many days where mentally we can see he is far away from us. Those days are still hard, even though we know to expect them.
Andrew, Peter’s oldest brother, is getting married just before Thanksgiving. This has kept our family in a bustle of activity over the past several months, but Peter has seemed grateful to be adding AmyRose into the family. She’s a cheerful gal, and he always perks up when she enters the room. For those of you who may not know, AmyRose joined our church and became friends with Beth and Peter when she came to Southwestern Baptist Theological Seminary to earn her masters in music. Andrew met her when he flew down to help with Peter immediately following his accident.
Currently, the Lord has covered Peter’s physical needs abundantly with several caring and competent helpers, and we are very grateful. It has enabled us to prepare for the wedding without too much stress and to attend to several other things in our lives that have been neglected for many months. Thank you to the many who continue to devote their time and prayers toward Peter’s care.
Finally, Selah has completed the book on our journey with Peter, tentatively giving it the title Peter’s Sermon. It is in process of being edited, and she hopes to begin talking to publishers after the first of the year. We will let everyone know how it progresses, for those who are interested in a copy.
Please join us in prayer for these things.
There is much to pass on to Peter’s brothers and sisters in the Lord who have been praying for him these past two years. We need your prayers now more than ever.
We have received three rather bleak pieces of information in the past two or three weeks, since Peter returned home from Baylor.
1. The update on his surgery—We consulted with the specialists in Boston and in Cincinnati regarding the reconstruction to repair his trachea upon learning that the original trach tube was placed in the wrong position. One of the specialists told us he would not recommend surgery for Peter right now, because the recovering patient must be somewhat participatory in this very painful and extended series of surgeries. Since Peter is still not able to respond consistently to commands, and since he still has no effective means of communication with us, he said the chances of success would not be high enough. The other specialist motioned us forward, but was unclear about the effects of the surgery on Peter’s overall condition. So the two specialists disagreed. At this point, we are still praying about the decision, but do not want to rush ahead. We plan to talk more with the specialist who feels comfortable doing the surgery.
2. The report from the rehab doctors at Baylor—The doctors were very encouraging to our family. They said they’d never seen a family do better at giving their loved one a chance to recover from brain injury. They said that the four to six hours of therapy a day that we had faithfully given him since his accident had provided his brain every opportunity for stimulation. (We of course told them that Peter had quite a large team backing him that made this possible).
But they also said, that given the two years out from the injury, with as little progress as Pete has made so far meant that, statistically, he would probably not come to the point of ever being ready for formal rehabilitation. This was hard to hear. (To explain further, Peter’s condition is termed “minimally conscious.” This means he is not comatose, not vegetative, but occasionally alert and responsive to commands, visual and auditory stimuli. A minimally conscious person must progress from a Rancho level 3 to level 4 to qualify for rehab programs. Level 4 means the person responds consistently to verbal commands. Though Peter has increased the variety of responses he gives over the months, he has never come to daily consistency. There have been times we felt that he was so close and almost ready, but then he takes dips and is unresponsive for several days).
The doctors encouraged us not to give up on Peter, because minimally conscious people can still
“wake up” just like people in comas and make a good recovery, but the chances, humanly speaking, are much smaller now, less than 10%. They told us we needed to pace ourselves, not wearing ourselves out, because Peter may need us for the long haul. They suggested we cut back on his therapy to give him enough for a door to walk through if the Lord so chooses to wake him up, but little enough to keep us long term healthy and available to him.
3. Peter’s long term health care—Another jarring note hit our ears this week when we were told that the source of funding for which Peter receives nursing and his doctors’ care will come to an end when he turns 21. Peter turned 20 last week. Since the benefits he has received are for children, once Peter turns 21 next year, as an adult, his benefits will be drastically cut, eliminated, and compromised, making the nursing care he receives in our home virtually unavailable. Other medical care he receives would then be unavailable to him. We have no more private insurance available for this.
To give you an example of how this works, since Peter has a trach, someone has to be up with him all night long. The manpower it takes to care for him all night long, and then to care for his nursing and therapy needs during the day rings up to enough work for about four or five full time people.
Well, lesson number one is: we are and have always been wholly dependent on the Lord during this journey with Peter from A to Z. Here is more to trust Him with.
Second, we pray that the church universal can respond, not only to Peter’s need, but to that of many people throughout the country just like him. We would like to be a catalyst to help Christians become aware of the healthcare needs that will become alarming crises very shortly given our current healthcare system. Our sanctity of life ethic is at stake.
Three, we ask you to pray for sustaining grace during this walk with Peter. We will need it every day. In John 9, during the story of the man blind from birth, the disciples ask Jesus, “Lord, who sinned, this man or his parents?” Jesus answered, “Neither, but this happened that the work of God might be displayed.” For that man’s life, God’s work was to glorify Himself by healing the man.
In the apostle Paul’s life, the work of God displayed was to show the sufficiency of His grace for Paul as the Lord refused to take away Paul’s thorn in the flesh. His power was made perfect in weakness. Pray for Peter and the Helms family that the Lord would do a work of sustaining grace in our lives to keep us joyful on our journey with Pete, thereby glorifying Himself that way. He is worthy of our bearing this trial. We still would gladly receive it if the Lord chose to glorify Himself by Pete’s healing.
Finally, it’s a comfort to know that Peter himself, when he could talk and think, eagerly desired to be active in the prolife cause. As a mom, I always desired usefulness for the kingdom in my children. Perhaps the Lord will make Peter’s life very useful in the cause of Christ and in the cause for the sanctity of life. That is my ultimate desire: his usefulness to Christ.
Our son Caleb just recently took a group of guys from his church to play paintball at a course operating south of Dallas. While there, they struck up a friendly conversation with the operator of the course. The young man thought that Caleb looked familiar. As they talked, the puzzle pieces fell together and the young man said, “Oh, I know your brother Peter. Our family still prays for him.”
A few days later, Doug and I had a date night out. Doug wanted to see a documentary and we had to travel to a neighboring community to find a theater that carried it. When we walked into the theater screen room, a couple motioned us up to sit beside them. They were old friends we hadn’t seen in a long time. They were with two other couples from their church that, according to them, are still praying for Peter.
Then, Saturday, I had a chance to slip away and do some shopping (on tax-free day) at a local department store. A woman stepped in front of me and said, “Selah?” She also was a long-time acquaintance I hadn’t seen in years. We visited for a moment and she asked about Peter. She reminded me that her church still prays for Peter, then she ended up volunteering to come help once a week with Peter’s exercise sessions on the mat. We had just lost our Monday mat crew, and she and her husband happened to have Mondays off, a perfect fit—a providential fit.
So we testify, that in the heaviness of this journey with Peter and as we learn to walk each day by faith, the Lord continues to send His encouragement, His comfort, His provision, and His people.
To all of Peter’s faithful prayer warriors: Two days after his sister Beth’s wedding, Peter was admitted to the rehabiliation program of a Dallas hospital to focus on getting his trach out, with the goal of longer term rehab options.
While there, we have learned more about why it has taken so long to get Peter’s trach out and why he has faced so many obstacles preventing its removal, as well as so many associated problems that have made his respiratory care more difficult. The short explanation is that the trach was originally placed in the wrong position during his first operation (it was inserted it a few days after his accident). The original surgery placed it directly through cartilage in his trachea, destroying that part of the structure of his airway. Now the plastic trach tube has become, defacto, a part of the structure of his airway. Without it his airway would collapse in on itself.
To correct this initial mistake, the doctor has recommended to us that Peter undergo a series of reconstructive surgeries to potentially repair his airway, with the goal of eventual trach removal. We have been told that this procedure has only a 2 out of 3 success rate, due to the unpredictable nature of how cartilage repairs. (It has no blood supply and therefore heals very tenuously).
This reconstructive surgery is a several step process that could take up to a few months. It is also a very painful one, as the surgeon would remove a part of Peter’s rib cartilage to graft into his trachea, making Peter feel the same pain as a broken rib would cause.
After much discussion with the doctor and prayer, we feel that Peter’s longer term comfort, care and health would be facilitated better with the proposed surgery. Peter still has yet to make the leap of progress that would make rehabilitative treatment most effective. There is still very little he can do on a consistent basis.
1. That the Lord will open up the way for Peter to get this surgery.
2. That the surgery won’t set back his long term progress and recovery because of the weeks of recuperation and pain control.
3. That the surgery will allow him to regain more control of his upper airway, opening the possibility for Peter to regain skills of speaking and eating if he continues to recover brain function.
4. That the surgery’s rate of success would be determined more by the Lord’s favor than by the chances expressed to us.
Our hearts continually ache for Peter, who has had to face so much suffering these past two years. Doug encouraged me and our children a few nights ago, with the thought that God has chosen that Christians face in this world all the same struggles and heartaches that people of the world face, so that it may clearly be seen the difference in the attitude of the response. He does not always choose to protect us from suffering, just to give us grace to walk through it. If Peter has to suffer so much, please pray that he and his family will know the presence and sustaining power of the Lord in this arduous journey.
We hope to post a bigger update later, but for now we wanted to let y’all know that Peter is at Baylor for 3 weeks of rehab. The goal is to remove his trach. Please be praying for a successful trach removal as our time there is limited, and the trach must be out in order for Peter to receive more rehab. Thank you so much!