New Blog

Since Parker returned home from his long hospital stay, there has not been much to report. He remains on oxygen and IV medication 24/7 and has been very stable. He did not grow at all for three months--just lost weight. He has finally turned that around and gained about half a pound!

For continued updates on Parker, go to Jen's blog at romney5@blogspot.com

UPDATE--PARKER'S HOMECOMING

Exactly five weeks from the day Parker entered the hospital for testing and an overnight stay, he finally returned home late yesterday. Jason phoned last night and said all was going well. Amy also returned home yesterday, so the family is going to try it on their own now. They are just relieved to all be home together again. Jason said Parker was all smiles as he returned home. I am waiting for an update from Jason or Jen with some new pictures.

For awhile we thought we'd never see this day. It is the love and prayers of family and friends that got us all through this ordeal. A long road lies ahead and no one really knows where it will lead. One thing for certain though,we have all gained a great deal of faith and courage which Jen and Jason will need as they adapt to Parker's continuing health-care needs. I recall a statement I have often heard: "That which does not kill us makes us stronger." I am definitely stronger in many ways than I was five weeks ago and I believe most of the family would say the same.

UPDATE

Amy reports that Parker is looking better every day. They are still trying to work on the feeding issues (an on-going problem). Monday they are changing his IV medication to one that will be easier to manage at home, requiring only once a day maintenance instead of several times a day. He will be on a pump, something like diabetics. If all goes well, they hope to bring him home on Tuesday, the day Amy leaves.

Connor called today to let us know that he and his Dad are going camping tonight (the father and son's outing)--just what Connor needs. Amy and Kelsey are going to have a slumber party in the living room and watch "The Princess Diaries." To watch a performance of Parker with his new drum, go to Jason's web site http://web.mac.com/jasonromney.

UPDATE

Parker continues to do well; however, Jason is thinking now that it will likely be at least the end of the week before he comes home. Because of his problem with aspirating liquids, he has become a bit dehydrated so they had to put him back on an IV while they work out a way to keep his fluid intake high enough. Jason said they are also adjusting his meds and want to make sure everything is stable and at the right level before they send him home. We're glad they are being cautious!!

Amy arrived last night and says that Connor(age 4) has been doing a thorough job of orienting her. She says they are all going to the hospital this afternoon and she will get to meet Parker for the first time. She will have a fun week.

UPDATE

Parker has been out of ICU for several days now. Jason said that he is now off everything that he cannot go home with, so it is now just a matter of waiting until all the home-health services are lined up. They anticipate taking Parker home the first of the week--Amy will arrive Monday evening to help out.

We have fasted many times over the past couple of months, particulary during the last few weeks. Today we are fasting in gratitude for the Lord's tender mercies that we have felt during this difficult time and for the wonderful blessing we have been given of another season with our precious little Parker. Right now I think that Jason and Jen are still feeling a bit overwhelmed with the care Parker will require once he is home, but I know they will adjust with the Lord's help and will come to know that it is an incredible honor to be his parents and to have the privilege of caring for him. I loved Peggy's comments, "Children are our greatest blesings in life. I firmly believe that little ones who have come to this earth with health challenges are the most valiant spirits. They come to earth to teach us lessons about love and joy and happiness."

A CELEBRATION

from Jen:

"Parker was able to celebrate his 1st birthday Wednesday in the ICU and he had a great time! He even got to taste his birthday cake, which he seemed to enjoy very much. He loved all the attention from us and all of the nurses (I think they all have gotten a little bit attached to him). We were able to decorate his room with a birthday banner and birthday cutouts and we also brought in 3 mylar balloons (the only kind allowed in the ICU). One of the nurses also brought him a balloon and his pediatrician sent him a HUGE balloon attached to an adorable stuffed puppy. He received a bunch of fun presents from us and all the grandparents--he is only a little spoiled . . . .

He is improving everyday by leaps and bounds. We are so grateful that he is doing so well. We were actually surprised tonight while we were at home on our dinner break by a phone call from the ICU nurse letting us know that they had just moved Parker out of the ICU--so now he is in an intermediate care room. Hopefully, he will be coming home very soon . . . thank you all again for your many prayers and support. We love you!"

UPDATE

Parker continues to do well and we are thrilled to be celebrating his first birthday today. For more pictures and movies of Parker go to:

http://web.mac.com/jasonromney

UPDATE

Jen sent the following email on Sunday:

"Parker has been off the ventilator for two full days now and he is doing really well. We are so grateful for the progress he has made but he still has a long road ahead. However, like we have said before, he has proven to be a fighter, so we know that he can make it through this. Today I was finally able to hold Parker. We sat together, cuddled and talked for about an hour. It was wonderful for me to have that time with him! We are so grateful to be Parker's parents--he is such a special little boy."

Parker continues to do well and Jason and Jen are hopeful that he will be moved out of ICU in the next few days. (That would be a nice birthday present for Parker on Wednesday, his first birthday!) Brother and Sister Wardle are feeling like it's time for them to return to their mission in Ohio, so on Monday, May 5th Amy is flying out to take over for them. Amy will stay through May 13th. We anticipate that Parker will come home during that time and Amy will be able to assist them in getting used to the daily care Parker will require. We will wait and see what help, if any, is needed after that. We are so grateful for the way the families have rallied to give their love and support to Jen and Jason--truly one of the blessings that has come out of all of this.

UPDATE

Parker is continuing to breath on his own and remains stable. Jason says he is very "jumpy" and thrashes about which the doctors say is his body's reaction to coming off the many sedatives he has been on. He doesn't make much sound when he cries as his vocal cords still need to heal. Over the next few days they will continue to reduce medications and wean him off anything that he cannot go home with. All of this is certainly cause to celebrate.

But as Jason reminded me, at best we are merely back to where we were when Parker came into the hospital. He still has a case of pulmonary hypertension the likes of which the doctors have never before seen. I am reminded of the line from the Lord of the Rings that I quoted earlier when Sam says, "By all rights, we shouldn't even be here." The doctors don't understand why Parker is even alive and able to do what he is doing. (obviously, a miracle). Everyday (every moment) with this little guy is truly a blessing as no one knows what tomorrow will bring or how all of this will unfold in the future. More than ever we must all learn to live by the advice we have heard from many to live one day at a time.

UPDATE

Success at last!! The ventillator was successfully removed yesterday afternoon and Jason reported that all of Parker's stats were remaining stable. Jason and Jen were going to spend the night at the hospital since, of course, the first 24 hours would be critical. We are awaiting an update this morning.

UPDATE

The last few days have been more of the same--Parker becoming more and more active and playful while the doctors have continued treating the airway swelling. They feel there has been enough improvement to try again this afternoon to remove the ventillator.

This time Jen, Jason and the doctors have talked about all the options if the procedure is not successful again today. They are optimistic.

UPDATE

I think the best update I could post regarding Parker would be an email that Jen sent out to the family yesterday:

"Today marks the 15th day for Parker in the ICU. It has definitely been the hardest weeks of our lives, but we can't forget to take joy in small miracles . . . On Sunday night Parker smiled for the first time in 12 days. It was so wonderful to see that beautiful smile again! We weren't really sure what it meant but we decided to think of it as a small miracle. He has been very playful and still smiling frequently since then. Thank you all for you continued support and prayers in his behalf. We know the Lord is listening and we have felt Him with us constantly. We love you all." Jen

The doctors are still waiting to see if the swelling in his airway will go down some more before attempting once again to remove the ventillator.

UPDATE

Jason reports today that the doctors have decided to wait a few more days before attempting the remove the ventillator. Parker was thrashing about and disloged it himself a bit today so they were able to see that there is still considerable swelling. We're all hoping a few more days makes a difference--it sounds like this little boy wants to get off that machine and get out of there! He's definitely not just laying there and giving up, so we must not give up either.

UPDATE

The doctors want Parker to rest through the weekend. They are treating his tummy for any possible irritations that could be affecting the airway such as reflux. Then tomorrow, Sunday, they will start another regime of steroids to hopefully reduce the swelling. The goal is to try removing the ventillator again Monday afternoon.

I told Jason today that the only answer I have for all of this came to my mind last night while I was praying--Sections 121 and 122 of the Doctrine and Covenants. We are all feeling like we're clinging to the end of a very frayed rope, and I realized that perhaps we now have a glimpse of how the Prophet Joseph must have felt while in Liberty Jail.

Jason said he had been wondering if everything that is being done medically is just getting in the way of letting Parker go. But he said he now realizes that if Heavenly Father wants to take Parker, he can do it at any time and nothing we do can prevent it. There is nothing wrong in doing everything possible for Parker as long as we continue to put our faith and trust in the will of our Father in Heaven.

UPDATE

Today the ventillator tube was removed and everything was looking good for a few minutes--Jen was holding Parker and everything was staying stable. Then the airway started spasming and constricted again and they had to quickly intibate him again. Needless to say, it was pretty frightening for Jason and Jen.

Jason called his bishop who came immediately and brought the stake president with him. Jason was feeling that perhaps they are just prolonging the inevitable. And maybe all the things we've seen this week in a positive light, we've actually been interpreting incorrectly--maybe Parker is trying to tell us to take him off these machines and just let him go. The bishop and the stake president advised them that Parker will let them know what to do.

An ENT was called in and said that his vocal cords are swollen and for some reason the swelling has not reponded to the steroid treatments. The plan now is to continue to treat the swelling of the airway throughout the weekend and try again in a few days. Jason indicated to Mindy that all of his stats stayed stable up to the point when the airway constricted. Yesterday the doctors did a repeat echo and said his pulmonary pressure has stayed the same, which they said was a good sign.

It's all so hard to understand. Why has he made it this far only to come up against a new wall? I don't think any of us have any answers--only questions.

UPDATE

Yesterday a surgical procedure was performed to put in place a permanent IV line. It was difficult for Jason and Jen to go forward with this since nothing seems to go smoothly for Parker. But this time all went well and he remains stable. He received his last dose of steroid yesterday and they believe there is some change in the airway. They will reaccess today and decide when to try removing the ventillator again. He is now on 50% oxygen.

As I read back through some of my previous posts, I realize now that they weren't always accurate. I have recorded events as I have understood them from phone conversations but now I can see that I didn't always have the details correct. Jen and Jason's version would undoubtedly be somewhat different. This I do know: getting him off the ventillator will be a HUGE step and no one really knows how well his body will respond. Initially, he was so unstable that even the slightest movement would send him into a downward spiral. We continue to hope and pray that he will do well.

UPDATE

Parker's airway is still swollen, so no attempt was made yesterday to remove the ventillator. His oxygen level was reduced further and he remains stable. Jason and Jen met with a family advocate who is helping them deal with the possibility of bringing home and caring for a critically ill child. It must have been good for them as Jason sounded better last night than he has for some time.

The next step is to put in a permanent IV (shunt?)so that Jen and Jason can manage his medication at home. I'm guessing it's something like the insulin pump used by diabetics. Since he needs to be sedated and on the ventillator for that procedure, they are going ahead with that now (today?).

It's obvious that this little guy is a fighter--Craig says it's because he's a Romney (swimming up stream).

UPDATE

Yesterday was mostly a restful day for Parker. He remains stable and is down to 55% oxygen. He was awake and alert last night when Jason arrived which is difficult because he wants them to hold him and they want to, too. He tries to cry but of course he has a tube down his throat. They have been treating the airway constriction and are going to try to take him off the ventillator again this afternoon. We hope and pray it goes well this time.

A friend of ours shared something with us that helped her in a very dark and difficult time with one of her children. It's a scene from the second Lord of the Rings story, "The Two Towers." Mr. Frodo has a job to rid the world of an evil ring. He has his best friend, Sam, along to help him with this task that only he can do. Frodo is at a point where everything that could go wrong has. As he sinks to the ground he says, "I can't do this Sam." Then Sam goes into this speech: "I know, it's all wrong, by rights we shouldn't even be here, but we are. It's like the great stories, Mr. Fodo, the ones that really mattered. Full of darkness and danger they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened?" And as Sam goes on to share his thoughts, the scenes that begin to unfold in the movie are things being put to right without their knowledge. The HUGE battle his friends were fighting in another part of the country is finally being won, there is a scene where a gigantic flood washes away the place where all the evil stemmed from, and the evil wizard is left standing helpless. Sam continues: "But in the end it's only a passing thing this shadow. Even darkness must pass. A new day will come and when the sun shines, it'll shine all the clearer. Those were the stories tha stayed with you... that meant something. Even if you were too young to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back (giving up), only they didn't. They kept going because they were holding on to something . . . ."

UPDATE

Today did not bring the progress hoped for, but the good news is that Parker is still stable. As his oxygen levels were reduced and the ventillator pressure was reduced he stayed very stable. Unfortunately, when they removed the tube, his airway constricted which I guess happens in about 1 in 20 cases (so, of course, it would happen to Parker). In effect, it was as if he was trying to breath through a straw. They waited about 25 minutes to see if he could overcome it, but he was struggling so hard that his heart rate was climbing so they finally sedated him and intibated him again. They will now spend a day or two treating the airway constriction and then try to get him off the ventillator again. It was torture for Jason and Jen to watch him struggling to breath so even though it was disappointing to have him back on the ventillator, it was a relief for them.

UPDATE

Today marks the fifth day of Parker's hospitalization. It is the first day that there has been any glimmer of hope. He has been totally sedated and on 100% oxygen and a ventillator. Today, as his oxygen has been gradually reduced, his oxygen saturation has remained stable. Also, as they have reduced the level of sedation, he has responded well, been moving somewhat and has continued to remain stable. The goal is to get him off the ventillator tomorrow, so that will be a critical day.

Jen and Jason have said that if Parker survives this, it will have to be because his body is able to sustain life on it's own--no machines and no lung transplant. The best case senario would be going home on oxygen as he was before, but also with an IV that delivers the medications to control the hypertension. In other words, he will still be a critically ill child requiring a great deal of care. His disease is a progressive disease but the doctors are not sure how that will play out. Lungs have the ability to grow new tissue in children under age 7. If, and it's a HUGE "IF", the medications and oxygen can keep the hypertension under control, there's a possibility that he could out grow all of this. But it all depends on how the disease progresses. For the last couple of days, the doctors have believed he is already in the final stages. His progress today, however, may indicate he's not there yet.

We have all accepted that Parker's fate is totally in the hands of God. The trial is for us to have the courage and faith to face and deal with whatever that fate might be. I reminded Jason today of a quote from C.S. Lewis: "I don't pray because it changes God, I pray because it changes me." And whatever Parker's fate may be, the Lord will be with us to show us the way to deal with it. Jason and I both agreed that we have all been changed in many ways over the last few days as this trial is not for Parker's benefit, it is for ours.

Jen and Jason decided to take some pictures of Parker in his hospital bed to show to Kelsey (7) and Connor (4). After looking at the pictures, Kelsey left the room for a while. She came back in a few minutes and said she had prayed about it and decided that she wanted to go to the hospital and see him. Connor decided he wanted to go too. Kelsey drew some pictures she took to show him--she talked to him and touched him. Connor was pretty overwhelmed and didn't say much. After a few minutes the children were taken out into the hallway. The nurses overheard them talking: "Did you touch him?" Kelsey said, "I touched him." Connor said, "I didn't touch him--I'm going to wait until he gets better."

We are so grateful that Jen's parents and sister, Wendy, are there. The ward members have truly reached out to provide love and support. These are the things that have made it possible for us to endure the distance that separates us.

UPDATE

Yesterday Parker returned to the hospital for more tests. A cardiac cathaterization was administered. Doctors could not find any underlying cause for the pulmonary hypertention but did find that the condition is much worse than they had originally thought.

The test seemed to over-stress his already compromised condition and he has since been on a ventilator. Every time they attempt to take him off the machine, he crashes. Things are looking very bleak at this point.

Jen's parents received permission to leave the mission and travel to Winston-Salem, so they are on their way today. Their moral support is exactly what Jen and Jason need. All we can do now is pray.

UPDATE

I returned home on Wednesday, March 12th. As Jason put it, their life was probably as normal as it was going to get for a while so I decided there was no need for me to stay any longer.

Jen and Jason had to buy a van while I was there. Their old Corolla had bit the dust so they were trying to survive with one car. But now the addition of an oxygen tank every time they go anyplace made the need for a van absolutely critical. They found a Honda Odessey lease return for a good price and they are all thrilled with it. Connor and I both agreed it is a "splendid ride."

Jen reports that Parker is eating better all the time so they are definitely making progress. She decided to thicken the formula enough to just feed it to him with a spoon since he has such an aversion to the bottle. And finally, PROGRESS!! In addition, the pediatrician said to give him anything he is willing to eat.

They do not return to the cardiologist until March 24th. At that time they will decide when and how to proceed with the remaining tests. I will try to update this blog weekly.

DAY FOUR

GREAT NEWS--PARKER CAME HOME TODAY!

For now he must be on the oxygen and Jen is to work on getting him to take more formula by thickening it with rice cereal so that it won't be so easily aspirated. It is a real challenge as he pushes the bottles away. He does eat some baby food but the doctors want him to consume 24 oz of formula a day so that he gets the nutrition and calories he needs. He will see the cardiologist again in a couple of weeks and then they will resume further tests sometime after that.

My service is wrapping up here, so I purchased a ticket to return home on Wednesday the 12th. All of the doctor visits and testing are going to go on for sometime and over time I am sure this little family will learn to cope with it all and get along fine. They have a good support group here with friends and ward members. This next week is finals week for Jason's classes but he has already put his finals on line and then next week is spring break. So it is a good time for me to leave as he will be around to help over the next couple of weeks.

And so, life goes on.

DAY THREE

Finally some progress!!!

Today they gave Parker a swallowing test and found what Jen has suspected all along. He has been aspirating the formula. No wonder the poor boy doesn't like drinking! Jen said the amazing part was that the tester could immediately see what was happening but Parker wasn't coughing or crying at all. She said he is probably so used to it, that it has just become life as he knows it. So from now on, Jen is supposed to mix rice cereal with his formula so it won't aspirate so easily. The good news is that this is something he will outgrow but it is connected to the whole pulmonary problem. They are also thinking now that the pneumonia they thought they saw in the x-ray might actually have been milk in his lungs but I guess they will continue with the antibiotics anyway. Also, today a respiratory therapist came to the house and brought all the oxygen and equipment he will use when he comes home and trained Jen on what she will need to do.

Day Two

Last night before going to bed, Jason explained to me what they learned yesterday from the specialist. Pulmonary hypertension in an infant generally has an underlying cause though that is not always the case. But even if they can find the cause and do something to correct it, the hypertension generally does not go away. It is a lifetime condition and the best treatment is oxygen.

Jen, understandably, is pretty upset by the prospect of Parker being on oxygen indefinitely. Jason is trying to be optimistic and says in the overall scheme of possibilities, being on oxygen isn't all that bad. But it will be a whole change of life for them.

I encouraged Jason to seek out a blessing for he and Jen both. And I also reminded him to not project today's challenges into the future--they only have to take one day at a time. You saw the cute pictures Jen put in her email--I think Parker himself is going to teach us all a lot about the attitude we need to have as we face all of this.

We ended up all going to visit Parker tonight. We had to scrub and put on masks but we were able to go into his room for a few minutes. He was so happy to see Connor and Kelsey. Kelsey was very sad afterward and had a lot of questions which Jason and I did our best to answer and at the same time reassure her that things would work out. They miss him, and their Mom, and just want him to come home.

Day One

I arrived at Jen and Jason's at 1:00am EST this morning after a long day of travel on Tuesday. I left Salt Lake airport at 9:00am MST and all went well until I arrived in Atlanta. Due to major storms including tornado warnings, the Atlanta airport had been forced to close twice during the day, so by the time I arrived the airport was jammed with people whose flights had either been delayed or cancelled. Fortunately, mine was only delayed.

I awoke at 7:00am this morning to help Kelsey get ready for school (I've got to come up with a better hairstyle for her tomorrow). Conner and I spent the morning at home and then had lunch at Wendy's and did a little shopping this afternoon. When I buckled him into my rental car he said, "This car is going to give me a splendid ride." What a great kid!!

Jason spent the morning at school and then traded Jen off at the hospital this afternoon. Jen came home and tried to take a nap and then spent a little time with Connor and Kelsey before heading back for another night at the hospital. Kelsey and Connor and I ordered pizza which we ate on a blanket spread out on the floor while we watched a Pooh Bear Movie--great fun!

Jason reports tonight that Parker's temperature spiked again this evening and he has not eaten well today. The doctors want him to drink at least 24 ozs. of formula a day and to gain a little weight and then they will send him home to get over the flu. He will have to be on oxygen all the time so of course, Jen is a little overwhelmed with that but still anxious to bring him home. Then they will wait about a month before resuming all the tests as they don't want to take any chances that the flu virus could scew the test results plus they would like him to be stronger physically.

So that's where things stand at the end of day one.