I am struggling to find the words to express how grateful I am for this seemingly ordinary milestone. As a writer, this should be easy. But the days when more birthdays were uncertain are not so far behind us, and still prey on our minds.
Although some of the emotional effects of his illness linger, Parker has begun a new life, full of hope and possibility. We know it could have been the other way, and for that we are eternally grateful.
Lord, purge our eyes to see / Within the seed a tree,
Within the glowing egg a bird / Within the shroud a butterfly:
Till taught by such, we see / Beyond all creatures, Thee.
Happy Day to my two beautiful sons, Parker and James.
Today marks one year since Parker went to the hospital via ambulance with the beginnings of an illness that tried very hard to take his life. Needless to say, it has been a long year. But we made it. I remain in awe of Parker's courage, his tenacity, his grace and strength.
In honor of Parker, and of our family's fight for his life, please hug your children today. If they live far away, send them an email like this ((((TheirName))))). That is a virtual hug which I learned from my good friend Linda Gafford who sent me virtual hugs constantly throughout this ordeal.
If you don't have children, reach out to someone else whose day/life might be made a little brighter by your gesture. If you can't think of anyone, go to a homeless shelter or a hospital ICU waiting room and do it. There you will find plenty of weary people.
Here we are. We made it! Parker lived, James moved to Austin and got a great job with Apple Computers, and I am the happiest Mom on the planet.
This photo was taken on March 4, 2010, almost a year to the day that Parker first went by ambulance into the hospital. It was the day that started the biggest challenge of our lives. We are forever grateful for all of you who helped us through prayer, through financial donations, cards, emails, letters, text messages with words of encouragement, positive thoughts, good juju, smiles, hugs and tears. And most of all we are thankful to God, who walked beside us every step of the way.
"For all of the people who have been asking questions lately about how I've been over the past year with my health issues and all, I figured I'd give you a little bit of an update. Physically, I hurt, but I am progressing and will, hopefully, soon be able to go about living life as usual for me.
Mentally, it's a whole different story. I have a lot of issues with sleeping, re-living things that nobody should go through in the first place. I also live in a kind of fear all the time, fear that something will tear, move, stretch... I've spent 6 of the last 12 months flat on my back in a hospital bed, and it is not something that I want to do again.
When I can finally get to sleep, it is often interrupted and not very relaxing. I can't work right now, which really, really sucks. I need to get back to work, I need to have some kind of purpose other than sitting here all day with just my thoughts. A man can go crazy when left alone with just his thoughts.
That's enough for now. Like I said, physically, I'm on the mend, but mentally, I'm a wreck. Hopefully that will begin moving towards normal in the future. I really hope so. Ok, thanks for wondering about how things are going, and I will update you guys at a later point.
We are home again. For the 5th time in not quite eleven months, we have come home from the hospital. But this time there's no celebratory "VICTORY!" feeling, there is an overwhelming sense of apprehension. Worry. Fear.
How do we really know if everything is okay this time? When will we feel it is truly behind us? I guess the answer is we will never know. Maybe it is meant to be that the events of the last eleven months really are what define us, and we cannot discard that identity like we do Parker's bandages. Maybe this is who we are, and who we will be forever.
It all feels pretty gloomy tonight, but there remains that still, small voice inside my head and my heart that says, "I am here with you and I will not leave you alone." Thank you God.
I am sure tomorrow we will feel better. Tomorrow will be sunny and the edema on Parker's abdomen will have gone down (due in large part to all the green tea and lemon I am forcing him to drink). There was some concern from the doctors about the fluid, whether it might get infected and what signs we need to look for "just in case."
So I sit and stare at Parker. I flinch at every movement he makes, jump each time he breathes deeply because he is bound up so tight with his stiff binders he can only stretch out in an awkward way without discomfort. I wait like a mother tiger for illness to reappear so I can pounce quickly. I will never give up.
I suppose the reason I haven’t been able to write about the events of this past week is that it felt to familiar to what we experienced last year. Writing on this blog somehow made things feel worse, like a really bad deja vu. But I have had so many emails from people wanting updates, I am resorting to my old friend, my ability to communicate through the written word rather than my inability to communicate well through talking (although my guess is the nurses here at the hospital would say my ability to talk is well established.... it's just nerves).
Parker's recovery from the surgery on the 26th seemed way too easy, but we really felt he deserved an easy time of it and it was all the positive juju flowing his way that made it seem so simple. We were even talking about my leaving to go back to MD earlier than originally planned. Then ZAPPO BAMMO! Slapped down in the midst of all that fun.
Friday night was the first time Parker stood up without the binder on and we knew instantly something was wrong. The right side of his body stuck out like a pregnant woman, the left side was concave. it was 11:30 at night and so we resisted the urge to call the doctor right away and waited until Saturday morning.
Dr. Turner met us at the Emergency Room, and Saturday evening Parker had another emergency operation. A 7" tear had occurred inside him sometime about a week before ~ although we still aren't sure how he didn't feel it, we suspect it happened when he was heavily medicated and likely still in the hospital.
This time it was Dr. Turner and Dr. Bomack who did the surgery (Dr. Garcia was away). Dr. Bomback said they beat his intestines up pretty badly during the four hour surgery, but that although things were a mess inside, everything looked really clean (as in no obvious infections). Since then one thing after another has occurred that reminded me too much of what we went through last year.
When I met Parker in his room about 11:30pm Saturday night, the first thing he said was, "They put the NG tube back in." Sure enough, there it was, the one thing he had told me he never wanted again. Dr. Bomback explained they didn't want all the stuff that would be coming from his intestines backing up into his body, and there would be a lot of stuff because of how much work they had to do inside.
NG tube and catheter to start. Then they had to give him extra fluids because he was dehydrated. Those fluids didn't come out the normal way so they gave him boluses chased by lasix, just like last time. Then his potassium dropped because of the fluid problem and they had to give him potassium. They had him on vancomycin because of the MRSA cultured last year, but when someone assigned Dr. Bissett (infectious disease) to follow up, he discontinued that. One thing after another started to feel way too familiar.
But! The good news is, and has been, Parker is NOT in ICU, he is not in IMC, he is on a "regular' post-surgical floor. His white cell count went up the first couple of days post surgery, which we knew was normal, and he had a couple of minor spikes in temperature. For the most part his heart rate and blood pressure have remained stable. Yesterday they took and ex ray of the placement for the NG tube and realized it was too high up. Not sure how that accounts for the masses of thick, rusty colored buckets of stuff coming out of it, I can only hope it was a back up of the stuff coming from his intestines as Dr. Bomback explained might happen, but the fact that it was too high was the opposite of what we had hoped for. Regardless, the nurse, Morgan, lowered the tube and the color changed to the more normal green. (sorry....)
This morning Dr. Gambarin, who is covering for Dr. Bomback who was covering for Dr. Garcia, capped off the NG tube. We sit and wait and hope and pray Parker doesn't feel nauseous, because if things start going down into his intestines instead of backing up and making him throw up, they can remove the tube altogether. His throat is really sore from the tube and really, who wants a tube being shoved up your nose, down the back of your throat and into your stomach? My father made me promise if they ever tried to do that to him again I was not to let them.
Up until yesterday Parker's spirits were really down. Monday we both felt dark and hopeless and anxious about every single thing, but we had a fabulous nurse named Stella who really made things happen, and made us know she was in our corner, fighting for us. I can't tell you how much we appreciate her compassion and her hard work. When she told me she was staying all the way until 11:pm I burst into tears in gratitude.
Yesterday Lindsey came and helped Parker sit up the first time (he had sat up once before but we are now so worried about ripping something inside we really didn't want to do anything until she was here to show us how to do it the right way). Parker sat on the edge of the bed 3 times yesterday, and today he wants to try and stand, maybe even walk a step or two. We are waiting now for Dr. Turner to come look at his abdomen before he stands again. They are also working on getting us a special binder that won't crinkle and scrunch his body all up. We need one that covers more area between his navel (or where is navel used to be) and his rib cage (long body, short legs).
Quinn has been quite frantic over this whole thing, but I got a girl to come in each day starting yesterday and spend an hour with her, walking her, brushing her coat, giving her much need attention and reassurance. Last night when I got back to the apartment, Quinn was so much happier than she had been the days before. When it was apparent I was staying overnight, she burrowed herself into her bed and slept with one eye open, watching me to be sure I didn't leave without telling her. :-)
I spent the night there for the first time since this started on Saturday ~ Parker has been having his own anxiety over everything and in the beginning, every time he would fall asleep he would have flashbacks to the ICU and wake up in a panic and a cold sweat. But sleeping in a bed last night, for me, was incredible. You just never know how much a good bed matters until you spend some time sleeping upright in a chair.
Please continue to keep Parker in your prayers. We have a ways to go, but things do seem ~ for the moment ~ to be heading in the right direction.
The photo above is one I took New Year's Day 2005 and is titled Fresh Start. I am hoping to encourage the positive juju to keep flowing our way.
We've been home 48 hours now and already there is a wonderful sense of everything fresh and new. We realize we have gotten to the point where the events of the last 11 months will no longer define who we are, but rather will be one of many things that propel us down the path toward the next chapter of our lives. It is exciting and rewarding and glorious and humbling all at the same time.
Parker is still uncomfortable, but when I think of how he screamed in pain last March when I drove over the speed bumps in his driveway, compared to how it felt to him on Sunday when we came home, this is a breeze. And of you ask me, he's earned a break.
Dr. Turner and Dr. Freer (the surgeon covering for Dr. Garcia this weekend) both came by and released Parker. They taught me how to empty the two drains, how to change the bandages, and gave us all the info we need for a successful recovery at home.
Thank you all for your many prayers and all the blessings that have helped us get to this point. It has been 11 months since this ordeal started, and while we still have some things left to finish up, now I can finally see the finish line.
Today we are feeling a bewildering sense of gratitude. Dr. Garcia told us the man who came in around the same time as Parker last year, with the same horrific case of acute pancreatitis, passed away. We were both stunned by the news. The nameless man left the Intermediate Care Unit a few weeks before Parker and went to a regular room, presumably to prepare to go home. He didn't make it. But Parker did. And again we ask, "Why?"
The bewildering part is because it feels wrong to be grateful at the news another person passed away. Of the four people I knew who were in the ICU at the same time as Parker, the other three were the ones the doctors expected to live. They did not expect Parker to make it, but he did. All three of the other people died. What does that mean?
The photo on the top was taken shortly after Parker had the skin graft last July which covered the mesh holding his abdomen together. The faint red marks in a circle around the skin graft show where he had those incredibly painful retention sutures that held everything in place inside his body.
The bottom photo was taken yesterday, after the doctor took off the bandages. The little circle looking things at the top of the photo are the lines that feed Lydicain continuously into his body all along the incision line. That runs out tomorrow. The two square bandages cover drains between the muscle wall and his flesh inside the body that empty into little plastic pouches pinned to his gown. This is normal fluid build up after this surgery. Those will likely stay in after we have gone home, which means I'll have to learn how to empty them.
Dr. Garcia said if things continued to progress as well as they have so far, Parker MIGHT be able to go home on Monday. We still have to get past the worrisome MRSA risk, but the catheter came out today (yipeee!) and the incision looks really good so far.
Please continue to keep Parker in your prayers as we head toward the finish line of this long road to recovery.
Parker continues to recover with relatively few complications. Yesterday his white cell count was a little high, which of course brings back scary memories. But after the extensive surgery he went through that is to be expected. I hope.
This morning he walked as far as the bathroom before he had to lay back down. The pain is manageable until he starts moving around. Dr. Turner, the plastic/reconstructive surgeon, yesterday explained what he did to rebuild the abdominal wall.
Dr. Garcia first removed the mesh that was holding Parker's abdomen together under the skin graft. Then Dr. Turner peeled back the layers of his body: skin, flesh, fascia, etc. He took the six-pack muscles which were located off to Parker's side (because of the large opening in his abdomen) and sliced them in half horizontally, sliding one section over in front of his abdomen and stitching them together side by side. Then the two surgeons sewed in mesh made from pig and human cadaver dermis for added strength, pulled everything back in the front and sewed it all back in place with staples on the outside. Now instead of looking like he has an angry red basketball on his belly it looks like he has a zipper all the way up.
We had some visitors from IMC this morning, Amy, Lindsay and Alan. It was great to see them and it made Parker's day.
Dr. Turner said yesterday if the MRSA was going to cause any problems (it is a very "opportunistic" bacteria) it would be about five days before we knew. Which is Sunday. If we can make it past Sunday without an infection the odds are much greater he will pass through this final procedure with the ease he deserves. He has been through so much.
Quinn the Medicine Dog is very happy when I get home each night. I take her out to the bathroom but she drags me over to Parker's car first, looking for him. She is a really smart dog because ~ and I swear this is true ~ when I say, "Parker's okay. Parker will be right back," she calms down immediately. Okay laugh if you want, but she knows his name because when she brings me the toy and I say, "Give it to Parker," she runs right to him. Even if there are 3 or 4 people in the room. The dog is a genius, I tell you.
Parker is going to walk again at 4:pm and hopes to be able to get the catheter out today. He hates that thing. Can't say I blame him. Next the automatic delivery of Lydicain to the wound area will be discontinued (and the doctor assures him he will know when it has run out because he will feel it), and eventually he needs to be able to control his pain with pills only, before he can go home. He has two drains on either side of his body that are keeping the fluid from building up under his skin, and those are putting out less and less every hour. Today they had to take out one of the IV's from his hand because it was starting to swell. Not sure why, but I am glad they took it out.
Will keep you posted. Please continue to keep Parker in your prayers, as well as James who will be making the trip back down here soon.
I'm sitting in Parker's room watching him sleep, listening to the rhythm of his breathing, and feeling quite blessed that there are no other sounds except the noise from the table top fan which is a constant presence. There are no beep, beep, beeps and click, click, clicks of the heart monitor. No whooshing of the ventilator he was hooked up to when his lungs failed last year. And on this floor there are no bugle sounds which means another patient has stopped breathing. Just the sounds of my son sleeping peacefully.
The surgery went as well as they had had hoped. Before the surgery he had a 13" circle where the skin graft and mesh covered up the opening in his abdomen. (See April 12-May 21st posts for all the gory details of his surgeries last year). Two surgeons worked on him yesterday, Dr. Garcia who was his primary surgeon last year, and Dr. Turner who was the plastic surgeon who did the skin graft in July.
Yesterday they removed the old mesh, cleaned out the scar tissue from all the procedures last year, sliced his six-pack muscles horizontally and slid them over in front of his stomach. They used a collagen mesh material (no, they ended up not using the pig and human cadaver dermis), pulled his abdomen back into place and stitched it all up from the inside out. So now instead of the big circle of skin graft on his belly, he has a 1" wide scar down his front about 15" from top to bottom. Kind of like a zipper.
He is still sad over the loss of his belly button, but maybe we can make one for him like you do for a teddy bear. Parker said only aliens don't have belly buttons. But to be honest, what he has now is going to be so much easier to look at than the huge skin graft he's had since July.
And there I go sounding so ungrateful, worrying about appearance. I'm not ungrateful. In fact, I am so grateful he lived I have changed my entire life. This event has changed me, changed my life (www.literacyforhope.org), changed both my sons, and I am told has changed almost everyone who knows Parker. It is a miracle he is alive, a miracle and a blessing.
Yesterday when he first got up to his regular room from post-surgery, he got teary eyed and his first words to me were, "We did it Mom. It's over! We're done!" We both cried. It has been such a long journey.
His second words were, "Oh *#$%!!! This hurts!"
Yes, it is going to hurt. A lot. But he is alive. Thank you God. My son lives.
Parker's big abdominal repair surgery is being done a week from tomorrow. We are all nervous yet excited, relieved yet anxious. But one thing I know without any hesitation is that we continue to be so grateful for his life, and humbled by the efforts and work going into getting his body 100% healthy again.
Please keep us in your prayers once again. Thank you!
On January 24th I will return to Austin for Parker's final big abdominal repair surgery. We hope it is his final surgery, but as this last year has shown us, expect the worst, hope for the best.
Parker will be back to work and ready to start his life again exactly one year after this ordeal started. Full circle.
After he has recovered, I will move to Bay Head to care for my elderly parents. It might be for 6-8 months, it might be permanently. There is so much to do to help them, and while leaving my home, my friends and my life in MD was one of the hardest decisions I have ever had to make, it was also the easiest. A no brainer. These are my parents, and they need me.
As I said to my Dad, "Isn't this the way it works? When I am young you change my diapers, then when you are old I change yours?" We both got a chuckle out of that.
In the middle of all this, James is planning a move to Austin sometime in the next few weeks, hopefully to get there before Parker's surgery. It is time for him to move away, as well. He and Parker are so close, that was a real no brainer, too. Their love for each other shines a bright light in the middle of everything else about my life.
There is a lot of stress and organizational details to be worked out and very limited time in which to accomplish it all. But after what we have been through this past year, it will be a walk in the park. Regardless, prayers are always helpful. :-)
March 10th, 2009 I received a message from my 25 year old son, Parker, who lives 2,000 miles away. He was in the hospital emergency room. The next morning I was by his side, a feeling of terror in the center of my chest. Parker spent a total of 117 days, or 2808 hours (more than the average person works in an entire year) in the hospital, and had six operations. Seven weeks were spent in the Critical Care Unit, another seven in Intermediate Care. I left my job in MD to stay by his side. This is a journal of those days, weeks, and months we fought together to overcome the odds that were stacked against him.
To My Children So touch the air softly, and swing the broom high. We will dust the grey mountains, and sweep the blue sky: And I'll love you as long as the furrow the plough, As however is ever, and ever is now.
Lord, purge our eyes to see Within the seed a tree, Within the glowing egg a bird, Within the shroud a butterfly: Till taught by such, we see Beyond all creatures, Thee... ~ Christina G. Rossetti Isaiah 58:8 ~ Your Light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard.
Matthew 5:14-16 “You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house. Let your light so shine before men, that they may see your good works and glorify your Father in heaven.
Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen.
