Allison's Page:
This is the day that the Lord has made. Let us rejoice and be glad in it!
3/17/2009
Please forgive the lengthy gap between postings here. We’ve had a fun and very eventful year. Allison just had her two-year follow-up visit at the Children’s Hospital in Denver last Friday(March 13th), and everything is looking very good. Allison has had a very eventful senior year at Ogallala High School, and has vigorously participated in Drama and Speech, as well as Spanish. Allison has won “Student of the Month” honors in both Speech and Spanish this year, and has earned membership in the National Spanish Honor Society. Allison is looking forward to Prom and Graduation, which is coming up in early May(graduation is May 9th).
We enjoyed a nice long weekend in Denver this past weekend, where we shopped for a prom dress for Allison, as well as just enjoyed the change of scenery for a few days. Allison’s next clinic visit will likely be in late May or Early June. It’s hard to believe how quickly time has gone by since transplant. Many friends have come into our lives as a result of the extraordinary experiences of the last two years, and we just want to say how humbled and proud we are to have so many people who smile and scramble to give hugs is worth so much to our spirits. We’re very thankful to all for your continued prayers. We have ample proof that God hears our prayers and yours.
God Bless.
7-15-2008
It's been a long time since we gave everybody an update, and apologies to everyone for that. Things have been going very well. Allison is strong, growing to fill out her frame, and is now measurably taller than her mother. She got her learner's permit and has been driving back and forth to the grocery store and around town as she tries to make up for the lost time. She is just under a month away from entering her Senior year at Ogallala High School. Medically speaking, we have been thrilled at ah and every turn with her continued good reports. Allison now goes for clinic visits every three months in Denver, and it is hard to believe that it has been over a year since we got home from Denver.
Friends and family have visited. We have pretty much been sticking close to home, aside from the clinic trips to Denver, and the past year has been uneventful in many ways. It has been a thrilling year, as Allison got to participate in Speech and Drama fully this year, and she has enjoyed the normality of life this last 12 months.
We'll try to post new photos soon. Thank you all for your continued prayers.
9/04/2007:
Well, Labor Day weekend is now behind us. It was a good weekend, and was altogether too short. Allison continues to do very well. She is enjoying school, and Friday night's football trip to Sterling went very well. Most of the weekend was spent enjoying family, watching some movies and getting a good workout on the Wii. We are waiting for the fall temperatures to arrive, as summer has been persistently pushing the thermometer well above 95 these last several days. Allison will be heading to Denver next week for her stress test and her 6-month heart cath. This is normal routine post-transplant testing. We pray for positive results and a good report all the way around. Susan took a bit of a nasty fall last Friday and hit her head on the sidewalk. She did not need stitches, but she was left with a huge knot on her forehead and persistent headache. Please pray that she feels better soon.
Thanks for all of your prayers. We'll update again soon!
8/29/2007:
Back to School! Allison's first week back at O.H.S. has been good, and uneventful. Getting re-acquainted with class-mates, and getting back in the learning mode. And getting ready for some of the things she has missed so much. Like drama, photography class, and football season. The Ogallala Indians will be at Sterling, Colorado Friday night. If you can't make the trip, be sure to tune in to KMCX 106.5FM and listen as JJ calls the play-by-play. Allison will be right there, helping keep stats and spot for us in the booth.
You can tell the seasons are about to change, as the sun sets earlier and rises later each day. It's a stark contract for us...when we look back on where Allison was this time last year. It has been a very eventful 2007. And as we wind our way into the fall, we remain continually grateful and blessed. The people of Ogallala and the surrounding areas have been so supportive and kind to us. We hope you can see by Allison's pictures and by seeing her in person, what a difference you have made in our lives.
Happy Labor Day from all of us!
8/21/2007
So much happens so fast that we lose track of time. Here it is...school starts this week. Allison is all set and ready for school. Her last clinic visit went very well, and our next trip to Denver will be on September 13th and 14th, as we get ready for a stress test on Thursday and Allison's 6-month heart cath on Friday. Allison is looking so much better with every passing week. She is at a healthy weight, and is catching up with her classmates physically. For the most part, she faces very few restrictions on on her activities.To put it plainly, A lot of people are going to be very impressed when they see Allison back at school this fall.
In addition to the great news about Allison, we also wanted to get you updated on some of our friends we made while in Denver, and ask everyone to please pray for them as they face their hardships. We'll start with Linda:
who got her heart about a month before Allison got hers. Linda had to be flown back to Denver from her home in New Mexico to deal with some problems. Please pray for her, and for her family.
Next, please pray for Sammie:
from Cody, Wyoming. Her baby boy Carter was born prematurely back in February, and he has some heart issues. He is going to see the pediatric cardiologist in Denver this week. He will likely require some open heart surgery, and depending in how that goes, he might also be a transplant candidate. Sammie is a hard-working single mom who is also worrying about her 2 and 5-year-old daughters, who are staying with relatives while Sammie tends to Carter in Denver.
Also, please pray for Joseph. Joseph is 12(a fellow heart-transplant recipient), and lives in New Mexico. He's been back in and out of the hospital in Denver, and we need to pray for him and his family as they try to get him over his latest bout with rejection.
Also please pray for our dear friend Almira and her son Arsen. These are wonderful people from Armenia, who have endured 5 years at the Ronald McDonald house, while Arsen(just turned 10) has gone through well over 60 operations. Pray for encouragement and that God will comfort and continue to pave their path for them, and that they will glorify God though their testimony and their steadfast faith.
Also, please pray for our dear friend Kathy
as she tries to get back to work while dealing with a difficult pregnancy. She is back to working the late news cast, but is not quite ready for the 100% daily grind. Pray that she continues to get her much needed rest and that she and baby do well.
8/06/2007:
Here we are in early August, and things are going splendidly well. Allison is getting ready for school, as she enjoys the last couple of weeks of R and R at home, with her dogs, and as we get through the dog-days of summer. We've been staying busy getting little things done around the house, and we are getting ready for another clinic visit on Friday the 10th of August. We're also looking forward to a visit from Allison's Uncle Tim and cousin Colin this weekend. The year has really flown by thus far, and it is incredible to think that it is almost back-to-school time. January seems like yesterday to Susan and JJ. When we left for Denver in January, it was icy, snowy, cold and wintry. Now it is HOT, MUGGY, and everyone is looking forward to the cool-down that usually comes in September. And, of course, when the calendar gets close to September, we get ready for FOOTBALL season. As you may or may not know, JJ is the radio voice of the Ogallala Indians, and he gets pretty jazzed about this time of year as we get closer to the actual start of the season. Allison will be doing some stats-keeping with JJ this fall, so that will give us some good quality-time together. Be sure and tune in for the games, beginning August 31st as the Indians go on the road to take on the Sterling Tigers in Sterling, Colorado. We'd like to take a moment to thank everyone who continues to keep us in your prayers. The year has been overwhelming in terms of the love and kindness so many have shown us, and we want you all to know that we're forever grateful.
7/17/07
It's amazing how fast the time flies by. Allison is doing very well. She has been busy with friends and making up ground with school work. She will be completely finished with that in the next week or so. Her friend from Chadron, Alaina, is visiting with us for the next week or two. Allison spent a couple of days in Chadron with Alaina's family and got to see Fur Trader days. Allison has another clinic visit this Friday in Denver. Please continue to pray that all goes well.
6/28/07:
Well, it's been nearly a week and things are beginning to settle down at home for the Jones family. Allison is doing well. She's been getting re-acquainted with her dogs, and just beginning to get back to a normal existence for a 16-year-old who is out of school for the summer. All of us are finding it quite nice to just be able to take a few breaths! More pictures to come soon(as soon as we can find the camera).
Ciao for now!
6/22/2007:
Allison is home in Ogallala! She has been released and is very happy to be back! More to come.
6/18/07:
The news has been nothing but good since our last report. Allison continues to improve, and as a result, we are looking at one last heart Cath procedure on Thursday, June 21, and then Allison will be coming home to stay on Friday. The days have flown by the last few weeks, as we try to prepare for the big homecoming. I have been trying to remodel the upstairs of the house to eliminate old carpets, as well as old fixtures that have out-lived their welcome. The last few days have been very busy, and we are pleased to have Gramma Jones and her friend Nancy from Arkansas here to help us clean up and get ready for Allison's return.
Please continue to pray for us, that we can maintain our strength, and that the procedure on Thursday goes very well. And as always, thank you for all of your prayers and support.
6/08/07:
Progress! Allison's PIC line was removed this morning after her blood work came back and showed good improvement. Allison's protein levels are UP and she has done this all without any IV's. The outlook is promising, and we can now seriously start talking about when she can come home! She has a cath procedure scheduled for June 21st, and hopefully, prayerfully, she will be able to come home very shortly thereafter.
This is truly an answer to prayer.
Allison and Samantha, sitting at clinic...just two 16-year-old heart transplant recipients chillin'
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Allison with Heather at Alameda East 5/14/2007 Below...Allison with Dr. Kevin T. FitzGerald, Dr. Heather Hadley, Dr. Robert Taylor,
Allison in Scrubs gets ready to see the operating rooms at Alameda East
Allison at Dusty's Garden at Alameda East
May 11, 2007: Allison and JJ take in a Rockies game at Coors Field(They lost to the San Francisco Giants, 8 to 3):
Barry Bonds hits a foul ball in
the 2nd inning(he was 0 for 3 and was intentionally walked once)
6/06/2007: Wow...it has been another week already. Allison continues to show good progress, and we are counting the weeks, hoping and praying that we can be home before the end of June. Susan and Allison appreciate the Ronald McDonald house, but it's not home. The days and weeks are dragging by as we wait, but we trust that soon we will get to come home as a complete family. Once Allison is released to come home, she will still have weekly clinic visits, for a while, and then they will be every other week, and eventually monthly and so-on. It was very good to be able to bring Allison home for a visit over the Memorial Day weekend, but makes it difficult also, because she misses home so much. The dogs are missing her as well. Meanwhile, JJ is trying to get the house ready for when Allison and Susan can come home, and trying also to maintain things like the grass-mowing, as well as every-day things like laundry and dishes, vacuuming, et cetera. The hardest part is just missing the girls. It's hard to believe that it is already June. Allison has spent all but a couple of days this year away from home. It's hard to put into words how exhausting this kind of life disruption can be on your body, and your mind. At the same time, we are now looking back nearly three months since her surgery date, and don't ask me to explain how I am still standing upright, because short of the obvious, that God has provided us with strength and perseverance, I can't explain how we came through it all. It continues, as we wait for certain milestones to come. We are hopeful that soon they will remove Allison's PIC line, and start talking in terms of Allison preparing to go home. All in good time. Thank you all for your continued encouragement and prayers.
5/31/2007: Well the last week has been quite interesting for Allison. She has gotten good reports from her latest clinic visit. Allison has been doing more things each week, and last week she got to visit the Denver Zoo. She also got to visit the set of 9News, and watched the whole telecast on the set. She met many of the personalities we've watched for years on 9-news, including Kathy Sabine(again), Adele Arikawa, Bob Kendrick, Mark Koebrick, Kim Christenson, Kirk Montgomery, and Ashton Altieri. As a special treat, Allison was allowed to come home to Ogallala for a couple of days over the Memorial Day weekend. She got to re-connect with her dogs, and visit with many friends who came by to visit. It was a short trip, but it was very good for her. We're coming down the home stretch now, and hopefully will get tome come home for good around the end of June. Thanks for your continued prayers. 5/22/2007: A clearing on the horizon Today was Allison's usual Tuesday clinic. Blood was drawn, EKG, Echo-cardiogram, and a visit with the nutritionist and with our transplant coordinator. Some of the numbers looked good, and one number was a bit off. In the past, hooked up to IV's providing her nutrition, Allison's numbers would sometimes be hard to interpret, because she was leaning on the crutch of IV nutrition. Today's numbers reflected that there is still some work to be done on completely healing her belly, but at the same time, some of the numbers were good enough that some of her meds could be reduced, while an occasional infusion of protein(albumin) might still be necessary to supplement her system. In some ways, today's clinic was probably the hardest one we have yet had, mainly because Allison has been trying so hard to do everything that the doctors and coordinators have been asking of her, trying to exceed their expectations and her own, and the albumin number is probably the single number we pay the most attention to. It was very hard on her this morning, and Susan and I each fought back tears seeing Allison so frustrated. Her one goal is to get well and get home to her own room, her dogs, her friends, and her life. At 16, and having already been here for four months, she needs encouragement now more than ever. You can e-mail your well-wishes to Allison at this address: allisonjones@charter.net Thank you all for your continued prayers.
5/14/2007: A big day for Allison, Monday we headed to Alameda East Veterinary Clinic, which is featured on Animal Planet's Emergency Vets program often. Allison is a huge fan, and was, as the pictures clearly show, thrilled to meet all of the doctors, Vet. Techs, and friendly staff. The facility is remarkable, and the pictures tell the story better than I ever could. Allison is doing very well. We are truly in the home stretch now, as we hope to come home some time in June(a.k.a. NEXT MONTH!!!!!) Your continued prayers are most appreciated. God bless!!!
5/11/2007: Finally Allison and JJ got to go see a Colorado Rockies game at Coors Field. It was a really fun day, even though the Rockies lost 8 to 3. We enjoyed the experience very much, and I was very impressed with the facilities at Coors Field. It is a top-notch baseball park, and the weather could not have been better.
Meanwhile, Allison is doing very well, and we are optimistic that she will get to come home some time in June. We are all ready to come home to Ogallala, and we are hopeful that we continue to make progress. Allison is looking fantastic, and she looks forward to seeing the dogs, her friends, and her own bedroom.
Thank you for your continued prayers. God Bless you all.
5/02/07: Prayer needed for Allison's friend Samantha. She had a transplant a few weeks ago, and has had to be re-admitted a couple of times, and this morning she passed out and they had to rush her back to the hospital, so please pray for Samantha, and her whole family.
Also please pray for our friend Sammie in Wyoming. Her baby boy Carter is having trouble throwing up after his feedings, and has lost weight. She thinks he will likely be back in Denver soon. Also please pray for her daughters Amanda and Emily, as they will likely have to stay with relatives while Carter goes back to the hospital. This family lives in Cody, Wyoming, and it is a very long trip for them to make to Denver. Sammie is a single mom and she needs our prayers and support.
Meanwhile, Allison is doing well, as we reported yesterday. She is in good spirits and is gaining ground daily. JJ has been in Ogallala working on the house, trying to make preparation for Allison's homecoming. The spring has been a moist one, and the grass is growing(OK, the WEEDS are growing), it is becoming a very lush spring. The dogs, Lucy and Sabine have been missing Allison and Susan. Many thanks to Gramma Jones for keeping watch over the house and the dogs for us.
5/01/07: Allison is making good progress each week, and this week is no exception. Allison's protein levels are improving steadily, and she is down to 12 hours a day on the IV's, which means that they will slowly begin to wean her off of the IV over the next few weeks. Allison's spirits are up, and she sounds and looks fantastic. She is still going to clinic twice a week, and staying at the Ronald McDonald house. Susan celebrated her birthday yesterday. I would have baked a cake, but the fire department said that would be a fire code violation with all those candles.
We are so looking forward to the day we get to come home and be a whole family in Ogallala. Denver has been a great place for what we are going through, but there is truly no place like home. Allison misses her friends, school, her dogs, her own bedroom, and all the other things associated with home. We're counting the weeks until that day arrives, and it will arrive soon. It's amazing what you can endure when you don't have a choice.
Thanks again to all of you who have prayed for us.
4/19/07: Allison continues to make progress. She is eating more, and they have backed her IV's down to 14 hours a day. This means they are pleased that the protein absorption is improving. Allison is feeling better each day. She still gets a bit tired when she has a big day, but is gaining energy and looking better each day.
Allison is also getting back to studying, as she races to catch up with the rest of her class. Her whole school curriculum is on a laptop computer, and she and her friend Samantha Moore are studying together since they are both in 10th grade. Allison is enjoying getting to know fellow transplant patients and discovering that she is not alone in the life-long struggles she has had. It helps to have people you can relate with, and she is learning that there are lots of kids with similar conditions.
This week, we were all shocked by the tragedy at Virginia Tech University. It is easy to feel depressed when you watch the evening news these days. It seems bad news travels very fast. But we are comforted by the reassurance we have in our personal relationship with Jesus, and his promise to never forsake us. It does not mean that life will be easy, but it is our promise of a way through the trials and tests we face each day. As parents, we have learned that even the hardest moments when worry parks itself right at the doorstep, we are comforted by our faith in Christ, and by his assurance that no matter what happens, he walks with us.
Physically, the experience of seeing our daughter through a heart transplant has been among the most difficult things I have ever encountered. There is nothing in the owner's manual about how to cope with that kind of situation. I do have to marvel at the fact that God chose to give us Allison when he did. Had we lived even 30 years earlier, technology would not have been so advanced as it is now. I think it is miraculous that the timing of our lives seemed to be steering us to this. And through the trials, and the long days of waiting and worrying, God is faithful to provide a way for us.
One thing we know for certain is that there is good news for anyone who calls on the name of Jesus. It is easy to forget that in this crazy world we live in. Let not your hearts be troubled. As you remember us in your prayers(for which we are eternally grateful), please remember those families affected by the Virginia Tech tragedy. Also, I would be remiss if I didn't also ask you to remember the families of the Oklahoma City Bombing victims, which was 12 years ago today. It is easy to forget as the years pass, but those souls still need our prayers and God's comfort.
God Bless!
4/14/07: Allison continues to bounce back. She has ventured out of the Ronald McDonald house, going out to eat, visiting Cherry Creek Mall, and she sounds and looks fantastic. Allison still needs your prayers as we try to get her system back on track absorbing proteins from her diet.
She is also preparing to start catching up on school work.
Thanks to all who have prayed or who continue to pray for Allison and our entire family. We appreciate it more than you know, and we are seeing prayers answered on a daily basis.
More to come.
4/09/07:
It was a good Easter...and we celebrated here at the Ronald McDonald house with some beef brisket and had fun with many of our new friends here in Denver.
We enjoyed visiting with Brittney and Michelle Andres. Brittney had a heart transplant 16 years ago at Loma Linda. Brittney is a great encouragement to many transplant patients, as she is thriving now. She and her mother visit many transplant patients here in the area, and try to encourage families and help them see a good light awaits at the end of the tunnel.
Allison is doing well, eating more and more normal foods, and hooked up to the TPN and Lipids and Albumin 20 hours a day. She is gaining ground, and we are encouraged by the bright spirit she takes on each new day with. All this 16-year-old wants to do is get well so she can go home and be with her dogs and her friends. With your continues prayers, we know that day will come soon.
Thank you and God Bless you!
Prayer Alert for Samantha Moore!!!
4/07/07:
Please pray for Samantha Moore, from New Mexico. Samantha will be 16 on Tuesday, and had a heart transplant last Tuesday April 3rd. She has had a few complications come up, and she needs everyone praying for her. She is a wonderful young lady, and at present she is quite depressed and needs encouragement. We all know that the Lord can move to lift her spirits, through the presence of the Holy Spirit, as well as through the people who work in the Cardiac Intensive Care Unit at Children's Hospital.
Please pray for every doctor, every nurse, every janitor, every hand that has anything to do with her care. Pray in the name of Jesus Christ that she will be supernaturally protected from any infections, any illness or pathology of any kind, as well as any foul spirit that attempts to approach her. Let us pray, in the name of Jesus that Samantha be encouraged, strengthened and that the Lord's healing will come upon her with great swiftness and remain upon her as a testimony to the power of the Lord to heal and to fortify any and all who will call upon his name.
Please do not hesitate. Please feel the moving of the Holy Spirit and pray now for the complete healing of Samantha Moore, and also for the uplifting of her mother Ruth and her entire family back in New Mexico.
Let us also pray for her brother and sister in New Mexico, who also have heart conditions, and let us demonstrate that no matter what the illness, no matter how many or how bad, that no problem is larger than our Lord and Savior Jesus Christ. Our God knows no limits in his healing power. He's big enough to heal and provide for any and all who call upon him.
Let us be bold in our witness, and let us proclaim that our Lord and our God is REAL, and that our faith in Jesus on this Easter weekend is CONFIRMED by the miracles we see before us this day. Let us agree in one faith that Jesus is our intercessor, and that God is even now providing for Samantha and her complete recovery and restoration. All this I pray for in the mighty and matchless name of Jesus.
4/07/07: Allison is back at the Ronald McDonald house with us. She is on IV's for nutrition 20 hours a day, and we will assess on Tuesday how this is working in getting her belly healed. Otherwise, she is doing GREAT. She looks good and sounds good. We've met so many fantastic people here in these past two months, and as the time goes by, we keep adding more and more people in our address book, and in our hearts. We've been getting to know so many young parents, and it's been a long time since we've been around so many babies. Annika(pictured below with Allison) got her new heart on Tuesday, and the reports are good. Samantha(from New Mexico) also got a heart late Tuesday. We've got one more kid waiting for a heart, so please pray for him. Today we are bidding a fond farewell to Sammie from Cody, Wyoming, as she heads home with her son Carter. Susan and I have unofficially adopted Sammie and Carter. We pray that they have a safe trip home and God's blessing for them once they get home. 4/04/07: The days continue to go by slowly here at the Ronald McDonald house. We are very grateful to have a facility like this one, but there is truly no place like home, and we all miss our dogs, as well as our friends and the pace of life in Ogallala. As we have learned through just being here for over two months now, you can adapt to just about anything when you have to, and you almost forget what life was like before. For Susan and Allison, there has been no chance to go home for a few days to re-charge and re-connect with home. I have managed a couple of trips home, but have found it very hard to be away from Susan and Allison for more than a day or two. We have been quite busy with not only work, but with clinic appointments. Allison had three last week, and has another scheduled for Tuesday morning. We had to re-admit Allison to the hospital Monday evening, as the doctors were concerned with the protein and mineral levels in her system. They also did a heart Cath procedure Tuesday, which looked good. Allison is still eating food and doing well, but they want to boost her protein and nutritional levels so she is on an IV feed of TPN and proteins(Albumin). She will slowly get wiened off of that, but better to be sure. Hopefully, we will have her out Friday some time. More to come. 3/30/07: We continue to go day by day here in Denver as Allison continues to recover from surgery two and a half weeks ago. One thing that we can tell you is that although the surgery went well, and Allison has made progress, we still have a lengthy road in front of us. We are going to be here at the Ronald McDonald house for another three months(or very nearly) as doctors adjust Allison's medicines, and try to make sure she is healing well, not rejecting her new heart, and gains ground with regard to her ability to absorb all the nutrients she needs just through her diet. Although Allison is doing relatively well, she is still pretty weak, and has lost a good bit of weight since surgery(She is about 93 pounds now). Allison also has problems with keeping some of her medicines down. She takes a LOT of medicine each day. Some of the anti-rejection medicines are pretty harsh on her stomach. As time goes by, we trust that her system will get used to taking these medicines. Meanwhile, we have about a half-dozen different devices/alarms set so that she takes her medicines at exactly the right times. The routines will go on for the rest of Allison's life as far as taking anti-rejection medication. We're still working on getting her everything she needs to heal her digestive system, which was in very bad shape before surgery. Allison was very sick before surgery, and it will take a while for things to get back in proper balance after 16 years of having a bad heart. Without being graphic, we can tell you that Allison's digestive problems were the equivalent of someone being anorexic, and as such, most of the nutrients and the foods she ate would simply pass right through her without being digested or absorbed. This created a scenario where she was emaciated. Her system had very low levels, almost non-existent, of Calcium and Potassium. Her bones were quite weak, and she was almost always in great pain. Her pain was also greatly irritated by a case of the Shingles. Her intestines were failing because of the abnormally high pressure in the Inferior Vena-Cava(the large vein that carries blood back to the heart from the legs and torso/tummy area of your body). This also adversely affected Allison's liver, and that is one of the reasons she had a longer recovery time in the hospital, because her liver could not produce some of the clotting agents the blood needed for the bleeding to be stopped in her chest. I've tried not to be mellow-dramatic about Allison's condition pre-surgery or post-surgery. As her father, I tend to be optimistic and to believe that everything will be OK. That has worked for a long time. But if I take a few steps back and look at the big picture, that is to look back at the last two+ months, it is a little bit overwhelming. There is nothing routine or even remotely natural or normal about someone cutting open my daughter's chest, removing her heart, and replacing it with someone else's heart. It's not like taking your car to the Express-Lube. The process is a lengthy one, is a stressful one, and it is not over once the last suture is in place or the last staple is removed. To be clear, Allison is recovering, but she is not turning cart-wheels or jogging 5 miles a day just yet. It is sometimes easy to forget that she was a very very sick child, and that her healing process will indeed take several months. Being out of the hospital means that Susan and I have to tend to Allison's needs where nurses and their assistants did before. We are happy to do it, as it is pure joy to be able to spend more time with her and to hear her snoring at night. We are optimists about Allison and her prognosis...largely because we are faithful that God will continue to sustain her(and us) through this phase. We try to stay as up-beat as we can, for our sakes and for Allison's sake. The news from Denver is good news. That being said, we're all still quite tired and drained from the experience. Please keep us in your prayers, and know how much we appreciate your kindness. 3/29/07: Allison is getting stronger every day. She is looking better and better, and the doctors are pleased. She is eating real food, and is absorbing proteins into her system from her diet nicely. We have been going for more walks, and her spirits are good. We woke up this morning here in Denver to a surprise snow storm! About 6 inches so far and more falling. We should have known it would snow, because all the weather forecasts said it would not snow until tonight! Meanwhile, back home, we understand that we got some heavy storms last night. Fortunately, nothing blew away at home(we think). 3/25/07: Allison is BACK in the Ronald McDonald House in Denver. She has been discharged, and will have three clinic visits this week(Monday, Wednesday and Friday). She is looking good, and the doctors are happy with her progress. She is eating some solids and while she is not eating steak or pizza yet, but is keeping down soft foods well, and is asking for some of her favorites from home, like Dad's home-made tuna-casserole. This is a huge huge day for us, and we could not be happier to see our girl at home(here at the McD house). But you know what they say...Home is where the HEART is. Indeed. If all continues to go well, we will hopefully have Allison home by the end of June. We appreciate everyone's continued prayers. Allison is tired, but she looks GREAT! More soon... 3/22/07: We may get her out of the hospital and over to Ronald McDonald house tomorrow. Susan and I have been over at the hospital almost all day today and yesterday getting ready for this. She is eating solid food and is looking great! At the risk of sounding lofty or sentimental, I want to share some thoughts with everyone about the experience thus far, and about how through each step, each day, we have seen a divine plan come to its' fruition: When we arrived at Children's Hospital on January 23rd, we were truly amazed at the provisions that had been made for Allison. It was amazing to think that the facilities, the equipment, the nurses and doctors, the volunteers, the support staff and the Ronald McDonald House were here and waiting, as if built specifically for Allison and us. In fact, that is very much the case. People we had never before met had already been used to build it all, and to prepare it all for us when and if the need arose. Some people might want to call that good planning, but I call it a gift and a miracle from God that our specific need was met at a specific point in time without struggle or angst. If we had to go through the trials which we have, it is at least a comfort to know that provision had been made for us at this time, many years ago. At the point where your need is met by God's grace, it can be called no less than a divine act of providence. The weeks and days chronicled on this web page have provided some detail, but my words fail to paint the picture fully. But let me try to look at the big picture for just one minute. I find it ironic that the most difficult days of our journey coincided with some of the coldest days of the winter. On Valentine's Day, 2/14/07, it was the coldest day of February. That was the day chosen by Student Council members at Ogallala High School to jump into the icy waters of Lake McConaughy. 14 inches of ice chopped through, a front-end loader to remove the massive ice, and then 58 people jump in the lake for Allison. It was near that time that Allison was recovering from her heart catheter procedure(the first one) and the news was very inspiring. Now to the day she received her new heart. After being told that the pager 'never' goes off during the day by Alison(transplant coordinator at Children's hospital), about 20 minutes later, it went off. You would have to be very familiar with Allison's history to know that you can never say 'never' with her. And so that call came, and the rest is plain to see. Here, just 9 days after surgery, we are talking about getting her out of the hospital in the next day or so. It is not a co-incidence that these are the first days of a new spring. Spring is all about new beginnings, about new growth breaking through after the long cold winter. As a father, I am proud of the progress Allison has made. Susan and I are equally joyful and incredulous at the speediness of the recovery. And now we reach the spring-time. A time of replenishment, a time of aspiration, a time of anticipation of the promise of brighter days just ahead. Sure, Susan and I might have a few more wrinkles and grey hairs as a result of the struggle, but we've also seen the remarkable kindness of strangers, and the amount of compassion and support from our home town of Ogallala has done much to renew us and to encourage us through each challenge thus far. I'd never wish this on anyone, to have to worry over a seriously ill child. But if you find yourself in that position, wherever you may be, I pray that you find the same kind of love and kindness waiting for you. It will come from the most amazing places. It will humble you, It will also fill your heart with gratitude and the realization that you are never alone when you travel with Christ as your constant companion. He's planted angels all around us, and many of those angels seem oddly familiar in Ogallala, Nebraska. To all our angels who answered the call for Allison, may you be richly blessed. More to come. _________________________________________________________________________________________________________________________________________ 3/21/07: Great news! Allison has moved out of CICU(Cardiac Intensive Care) to the third floor(CCU/Critical Care Unit) and is making HUGE progress. She is walking, she is down to one IV, which should be gone in the next few days, and her last Chest drainage tube, which should come out in the next day or two. She is also now on a soft bland diet(she will get mashed Potatoes and gravy for lunch today!!!). She is excited, and doing great! They may take out some staples and stitches in the next couple of days. All in all, Allison could be coming to the Ronald McDonald house early next week! We hope you enjoy the photos...more will be coming soon. __________________________________________________________________________________________________________________________________________ 3/19/07: What a glorious report we have for you. It begins last week, of course, but it may not seem glorious at the beginning. Last week Thursday, Allison became unresponsive and unable to awaken for more than a brief second, and could not speak. We were, of course, concerned. The nurses and doctors were pretty sure she was OK, but for whatever reason she was not waking up. When she was moved for physical therapy or respiratory exercise, she would suddenly become quite combative and then disappear again. It was theorized that for whatever reason, Allison's system was not purging the morphine she had been given after surgery for her pain. Her kidney and liver were just not removing the drug from her bloodstream, and so the more doses they gave her, the more effect it had on her. So, this continued all day Friday and all day Saturday. Finally, in the wee hours of the morning on Sunday, she woke up, acting normal and talking normally. She has improved immensely since then. She has one chest drainage tune remaining, she has been taken off several of the medicines she was being fed intravenously, and she is now able to get up and walk to the bathroom(with assistance). It looks promising that we may get her out of the hospital in another week or possibly less. Needless to say, Susan and I are very relieved, and we know that the Lord has kept his hand on Allison, and on us. God bless you all and I hope you enjoy the pictures. _________________________________________________________________________________________________________________________________________
3/15/07: Not much news today. Allison continues to progress. She has experienced some arrhythmia which is not uncommon for heart transplants. Aside from that, Allsiosn is getting 1/2 cup of ice chips every hour, and she is doing breathing exercises. She will likely remain in CICU for a couple more days. She is not up to having visitors, as she still has chest tubes(drainage tubes). The doctors are pleased with Allison's progress, and we are very thankful for all the care-givers who do such a terrific job keeping and eye on vitals, and encouraging Allison(and us) every step of the way. Many people have asked if we know anything about the donor or how the heart became available. One of the rules in the world of organ transplant is that the recipient's family is not allowed any information about the origins of the donor organ initially. After one year, we are allowed to send a letter to the family(anonymously) and if they choose to respond they have that option. This is of course to respect the privacy of both the donor and the recipient. So, no, we don't know where the organ came from, but we are thankful regardless. Allison enjoys hearing from you via cards and letters, even emails...we print those for her. Please keep praying for Allison's recovery. More to come. ________________________________________________________________________________________________________________________________________ 3/14/07: Allison was extubated at about 12:50PM, and is now awake and talking and asking for ice chips. She looks great and the doctors are very pleased with her progress. What an amazing difference 24 hours can make. She is still in pain, as was expected, but her new heart is beating strong, and her oxygen saturation on room air varies between 97 and 100%. Which means she is NORMAL for the first time in her life!!! Thanks to everyone again for all your well-wishes. God Bless you all!. ____________________________________________________________________________________________________________________________________ 3/13/07: The day of the miracle: Hello All, I will try to give you the Reader's Digest version of today, with just a little pre-history so it can be taken in context: A week ago Tuesday(March 6th) Allison was discharged from Children's Hospital, and moved in to the Ronald McDonald house with her mother and me. We had gone through training to administer her IV fluids here, and were just settling in for the long waiting process. Since Allison was admitted originally on January 23rd, she had virtually no solid foods and was strictly rationed on a clear-fluids diet. This morning we had our regular clinic visit with her transplant team at the hospital at 8:00. She came back to the Ronald McDonald house at about 10:30. At around 10:45, Susan's cell-phone rang, and it was her Transplant Coordinator nurse, whose name just happens to be Alison. She informed us that their was a potential donor heart and that we needed to come to the hospital at 11:30. When we arrived, everything became a bit of a blur. By 11:45, we were under the impression that it could be 8 to 10 hours before surgery, if it were to happen. After a very quick bite of lunch, I decided to come back to the Ronald McDonald house to try to tie up some loose ends at work. I had gotten about 5 minutes worth done when my phone rang again. It was Susan, telling me that they had reserved the O.R. for Allison for 1:30PM. This was at about 1:00. I raced back over to the hospital, and again, things became a blur. Nurses checking vital signs, doctors coming to talk about risks, and finally, word that the donor heart was good and that surgery was on. By 2:00, they were wheeling her into the O.R.. At around 5:00, after much preparation(IV's started, chest prepearation, etc...)they actually opened Allison's chest to proceed with the transplant. The procedure went very well, with no unanticipated complications. There were some anticipated complications, but the doctors seem confident that they have the situation well in hand. The largest of these complications is bleeding in her chest, mainly caused by all the scar tissue they had to go through from her first surgery, and the fact that her liver(due to her heart condition) was not producing as many clotting agents. This condition is not unanticipated and will improve now that Allison has a new heart(it may take days, or weeks to fully be corrected). They are giving her medications to allow her blood to clot as needed, and also making sure they don't create unwanted clots elsewhere in her body. Finally, at 11:00pm, after 9 hours, she was out of Surgery. Susan and I got to see her briefly, and she is currently a bit swollen around her face and neck, which is normal for these operations. She is intiubated, and breathing with the assintance of a ventilator, again, normal for the hours following a transplant. Her new heart is beating on it's own, and though she was losing some volume of blood through her chest, the bleeding is slowing down, and they are encouraged by that. It is hard to believe how quickly this all came about. Heart transplants are complex, and these people are very good at what they do. The amount of preparation and the number of people involved is mind-staggering. The best way to describe it is like a NASCAR pit-crew. They converge on the patient, knowing in advance what their needs are, and they work in unison, each taking care of his or her responsibilities, and then, if all goes well, the patient goes speeding out of the pit. In our case, the exit from pit row will take some time, but it is still amazing to see how so many people know their jobs so well and are unphased by the magnitude of what they are doing for the patient and their family. To all of you who have encouraged us, prayed for us, and helped us in so many ways, thank you for being a part of this truly miraculous day. We look forward to a speedy recovery, and if all goes well, we should all be back in Ogallala some time in late June. Thank you all and goodnight. JJ ______________________________________________________________________________________________________________________________________ 3/12/07: Not much news to report medically. Allison is holding her own, and settling in here at the Ronald McDonald house. Susan and JJ are learning how to hook up her IV's each night so she can take in her nourishment . We hook her up for 12 hours and then un-hook her in the morning. Allison had a very nice visit from three of her class-mates from Ogallala on Saturday. Thanks to Ashley K. Allen, Wanda Johnson, and Samantha Bates. Thanks to Judy Allen for driving them here for a visit. Allison is learning how to shoot pool, and has also shown interest in air hockey, though she can't play for long before she is tired and has to rest. The wait continues for Allison's new heart. We are praying it comes soon. Allison is keeping her chin up, but she is also clearly in need of this heart. She tires very easily, because her heart is simply not able to keep up with her body. Some of the medication she is on also tires her out. It is the Millrinone which is helping her most as we wait. She has to be hooked up to it 24 hours a day. Allison has clinic visits at Children's transplant clinic twice a week on Tuesdays and Thursdays. So far the doctors and nurses and counselors seem encourage about how she is doing. Please pray a heart will come soon. We would also like to say thank-you to all of the people who have sent cards, letters and emails. Allison is truly encouraged by your correspondence and it lifts her spirits each time she gets mail from home. As parents, Susan and I are very thankful as well. We look forward to positive news, and soon! _________________________________________________________________________________________________________________________________________ 3/06/07: Finally, some news to report! No, we still don't have a new heart, but Allison is expected to be released from the hospital today, and she will move in to the Ronald McDonald house with us. This will be a very welcome change for Allison, as she was growing quite tired of the hospital room. We will be schooled on how to flush her central line, and how to keep her Millrinone(heart medicine) pump running, Allison is up to 1250 milli-litres of liquids per day, and will stilll be getting nutrition intravenously 12 hours per day, but she will have much more mobility during the day and there is much more to do here at the R.M. house. We continue to pray for a heart soon. We'll have more pictures soon and will keep you posted on progress, Meanwhile, we are clearing out all the stuff from her hospital room, and will spend the next few days getting settled in. Allison's new address will be: Allison Jones c/o Ronald McDonald House 1300 E. 21st Ave. Room 2F Denver, CO 80205-5218 email: allisonjones@charter.net __________________________________________________________________________________________________________________________________________ 3/2/07: Allison is maintaining at a good weight according to her doctors, and seems to have shaken the effects of last week's infection well. She is getting tired of the hospital room, and we are hopeful that soon she can come to the Ronald McDonald house, where she can enjoy a change of scenery and have more to do. Allison truly enjoys all the cards and letters people have been sending. She is very thankful to everybody and looks forward to being able to thank everyone in person some day soon. We're still waiting for the pager to sound, and people ask us often if we have any idea how long it might take. Honestly, there is no way of knowing. It could be a day, a week, a month or 6 months. There is simply no way to predict these things. Please pray that there will be a perfect match for her soon, and also please pray for the many other children in our circle of friends here at the R.M. House who are also waiting on miracles. We miss Ogallala. We are especially thankful to Allison's Grandma Jones who is watching over our house and our dogs while we are here in Denver. Thank you for your continued prayers. JJ, Susan and Allison
2/26/07: Allison had a minor setback last week when her central PIC line got infected. It has since been removed, and the infection is cleared up. Meanwhile, Allison is now able to enjoy clear chicken broth, which is as close to solid food as she has gotten in a month. Allison is maintaining her spirits by staying occupied with arts and crafts, reading, watching movies with her friends on the Block, and text-messaging her friends back in Nebraska. In case you missed it, Allison was on the news on ABC Channel 7 here in Denver Saturday night, as they did a brief report on the dip-in-the-lake fund-raiser. Allison misses her dogs, Lucy the Labrador, and Sabine the German Shepherd terribly. I am sending a couple pictures of the dogs so that she, as well as all her friends, can see how the dogs are faring. Thanks to Gramma Jones(Jean, JJ's mom) who is watching the house and taking good care of our pooches while we are in Denver. And thanks to everyone for your continued prayers. JJ, Susan and Allison 2/21/07: Things are fairly status quo today medically speaking. The doctors are now indicating that it is more likely to be another week before Allison gets to come to the Ronald McDonald house. Allison is feeling fairly well, and is ready for a change of scenery. This morning, Allison got a surprise visit from former Denver Bronco Ed McCaffrey. McCaffrey is Allison's favorite football player(she even has an Ed McCaffrey jersey). Ed was very gracious and he is a genuinely nice person. Allison was delighted to see him(as you can see from the pictures). Susan and JJ are getting used to the surroundings in Denver and have met many other parents here at the Ronald McDonald house. Many are going through similar ordeals as we are, but most are young parents who are dealing with things we dealt with 15 years ago, so we have found that we can help and encourage them as they face the unknown. The weather here in Denver hints that Springtime is not that far away. We're hoping that it is a very good spring. More to come.
2/16/07:
Allison had a tough day yesterday, just a little bit tired of the same four walls and nothing to eat. It is natural for a 16-year-old to feel that way, and once she got it out of her system, she was fine. Nothing new medically, just more of the same. Allison is getting stronger, and walking more these past few days. That is a good thing. Today(Friday) Allison got a surprise visit from Colorado's favorite American Idol, Ace Young! Ace is a very nice guy, who just happened to be in the neighborhood, and was kind enough to come and see Allison, and he even sang her a belated rendition of "Happy Birthday". It is amazing how a 16-year-old with red hair can blush. We're all holding up as well as could be expected, and we are very thankful for the Ronald McDonald House. We've made many firends here, and we all share a common bond...we have kids who are sick. Of all the stories, all the faces, and the kids we see, it really is amazing to see how many people come to help asking for nothing in return. We are still waiting for the pager to beep. Sudoku, crosswords, and work. Three ways to make the time go by. Thanks for all of your prayers and support. JJ, Susan and Allison 2/14/07: Well, today I was informed by reliable sources that several dozen people jumped into the icy waters of Lake McConaughy. Thanks to the gang at KOGA/KMCX radio, Mary Pierce at the Keith County News, the entire Ogallala High School student council, as well as the faculty and student body), the Ogallala Fire Department, and numerous others who have volunteered their time and effort. If I have forgotten to mention you by name, please know that we are very grateful. Here in Denver, we rely on our friends to keep us informed of news from home. The amount of people responding to the call for help is more than we could have ever imagined. There is something happening through this experience that we are in the middle of, which is miraculous in my estimation. Everywhere we go, people respond with such kindness...I can't adequately explain it. From nurses coming by on their days off to watch movies and visit with Allison, to people from all around the region, sending best wishes, and prayers. It's never something you want to go through, but if I must go through this, I am so thankful for living in Ogallala, and getting to know so many people care and pour out their hearts to Allison. We are truly blessed by everyone's efforts. Now, medically speaking, Allison's situation is fairly unchanged. The doctors have determined that Allison's nematosis is still happening, so she can't have any solid food. She is still on clear liquids and they are feeding her via IV. Allison's spirits are very high, and she again wants to express her thanks. She loves reading the cards and letters that keep coming every day. She even gets visits from therapy dogs(like Valerie, the Yellow Lab seen in the pictures). We now just wait for the sound of a beeper, and find ways to make the hours and the days go by one at a time. Blessings to all.JJ, Susan and Allison
2/12/07: This past weekend was a very good one for Allison and the family. Allison is now officially on the national transplant list, as a 1-A. This means she will be near the top of the list when a good match is found. Over the weekend, Allison was allowed to start drinking more, and was allowed to drink more than just water. She has enjoyed some juice, some yogurt smoothies and she is very happy about that. Her spirits are high, as cards, letters and e-mails continue to pour in from all around. Allison has made some very special friends here at Children's Hospital, and she has been watching a lot of DVDs(She and her mother watch Pride and Prejudice nearly once a day). Meanwhile Allison has gained a few pounds back, and the doctors are pleased with her progress. We are hopeful if this continues, that we can bring her to the Ronald McDonald house and they can treat her as an out-patient. She would require oxygen, and would need to go to the hospital once or twice a day for some intravenous medication. The goal here is to allow her to increase her activity level a bit, and see how she does eating real food, and not being nourished by IV. The experience we are going through is teaching us much. The process of heart transplantation is complex, and it would not be possible without the help of many doctors, nurses, volunteers, and most importantly, donors. Our hope is that we can help raise awareness about organ donation. The need is great and organ donation is perhaps the greatest gift any person can give to another. We appreciate the help of so many around the community, including the Ogallala High School Student Council, teachers, students, and so many others. The word "thanks" seems inadequate. But we mean it sincerely. More to come.
2/09/07: Progress can be difficult to measure, but we can honestly report that we are making progress with Allison. She is now able to drink more liquids, and if all continues to go well, she may even get some solid food in the next few days! Today the doctors took Allison back to the Cath. lab to try to close up a couple of collateral blood vessels. The procedure is taking longer than anticipated, but thus far the reports are good. The doctors, nurses and Susan and I have been pressing Allison to get on her feet and to sit upright more. She tires pretty quickly, but is slowly moving more, which is vital to keep her muscles from atrophying and to guard against her lungs developing problems. Susan and I are settling in for a long stay here at the Ronald McDonald house, and are daily amazed at the great people we deal with both here and at the Hospital. And of course, there is the outpouring of help and well-wishes coming from so many back home in Ogallala. In case you were not aware, the student council at Ogallala High School started a fund-raising idea...and it appears that next Wednesday, Valentine's day, a lot of people from our local area are going to be jumping into the icy waters of Lake McConaughy. Donations have been pouring in, and the help is very much appreciated. Susan and I will not be able to be there for this event, but we trust that the event will be well recorded on camcorders, as well as photographers and so we hope to get to at least see the spectacle that way. Words fail us when we see the generosity and compassion of our community. People seem compelled to want to help in any way they can, and we are humbled by the concern so many have shown. We hope to return home to Ogallala with a healthier daughter some time in the coming months, and when that day arrives, we will look to celebrate and say "thank you" to so many of our friends...those we know, and those who we do not know. More to come... 02/08/07: It's been a long week for Allison-
and for her Mother, as two weeks of constant tending to Allison in the
hospital has gotten Susand and JJ pretty tired. Allison is now able to get
some very needed rest, and with that, hopefully her Mom and Dad can also rest
up a bit, as we prepare for the next phase in this process. Allison is coming off the last of
her anti-biotics today, and with that, she will officially be placed on the
national transplant list. This will be a very involved process. I wish I
could tell you all the details on how they go about acquiring a donor heart,
but it is very complicated, and so we simply trust the process, and as we
become able to wrap our brains around it, we will share as much as we can. Friday the doctors plan another
catheter procedure on Allison, to close up a collateral blood vessel that
grew between her aorta and her lungs. They are doing this in preparation for
the transplant surgery itself. This will assure less in-chest bleeding during
the transplant. By all indications, the doctors
seem confident that Allison will find a heart soon, though they really can't
hazard a guess, since there are so many variables involved in the process. Susan, Allison and JJ would like
to express our deepest appreciation to all who have expressed their
well-wishes, and to those who have donated thus far in the effort to raise
funds. We are very deeply touched by the kindness of both friends and
strangers. 02/06/07: Allison
celebrated her 16th birthday Saturday February 3rd, and had quite a day! Tuesday, January 23 2007: |
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