What's he got?

 

I thought this picture was sweet. Darren was so tired and felt instant relief when Daddy picked him up out of his wheelchair. 

   

Darren has been back to his own bed for weeks now. His crib is still in our room; we're not quite ready for him to be far from us yet. He is full of smiles lately and is getting back to his old self.

We've noticed his attitude has changed. Before, he could be so nasty at times. He would yell and curse, hit, and bite when his world wasn't going the way he thought it should. He hasn't done any of that since the surgery. My opinion is that he was in a lot of pain before the surgery because his hip was so dislocated that it manifested through anger. Since the surgery and recovery, he is back to his old smiling self.

The first 2 weeks after the cast came off was the worst of the recovery. He had muscle spasms all the time. I'd touch him and he'd scream out in pain. Dr. Klamar prescribed small doses of valuim to help the spasms. It barely worked-- I think it made him more tired than anything. He's been off of it for over a week and is doing well. He has rolled over a few times, which was a big hurdle. Ray and I have noticed that his left leg is considerably shorter than his right; he'll probably need orthopedic shoes when he begins to practice walking.

Physical therapy has beeb postponed for a few weeks. The surgeon wants to give him time to adjust his legs since he was in the spica cast for so long.

We have his anual IEP meeting on Thursday. Last year while he was in kindergarden I had to fight tooth and nail for services. There wasn't a special education teacher available at his school to educate him. The special education teacher that was available within the district was at an elementary school 5 miles away in a non-handicapped accessible school. It happened that the principal, (M. Shawn Winkelfoos) at the non-accessible school had a son there who has a disability. Highland would not budge to move the special education teacher to a wheelchair accessible school. It was unfair and I fought like mad to get him a basic education. I filed a complaint with the Ohio Department of Education. Highland Schools finally made arrangements for Darren to go to a neighboring district that could provide special education and a handicapped accessible school. Since then, his learning has excelled and is a much happier student. Needless to say, IEP meetings have always been filled with anger and tears. I'm actually looking forward to this meeting-- the new district (Cardington) has Darren's best interests in mind and actually want him to excel instead of putting him in a corner like Highland schools. I am so appreciative of Mr. Hardwick, Miss Hughes, and Miss Melinda who work so hard to educate Darren.

Jacob is doing well. He doesn't like it when I mention him on this website, so I keep it to a minimum.

Have a great week and I'll update after the IEP meeting.

The cast is off.

 

Darren got his cast off on Monday. The photo above looks like he is crying; in reality he is laughing. He said the saw tickled him.

   

It was really cool the way they took the cast off. Instead of doing it in sections, they cut it off in two large pieces. Darren started to get scared when they removed the top of his cast-- that security of not moving for 7 weeks was gone.

 

I thought this was a cool picture of the cast. Darren had a look of terror when she showed it to him. I think that he didn't realize how large that thing was.

 

This was one of his 3 incisions. They healed nicely, no openings in the skin or anything. They are larger than I expected. I'll post more pictures next week of what his incisions look like.

This is by far the worst time in the recovery process (other than being in the hospital). Darren is in a great deal of pain. He screams whenever he is picked up because he has to move that leg. The muscle spasms are horrendous-- you can actually see his muscle tighten and release. It looks like a charlie-horse. I called his surgeon earlier in the week and he prescribed Darren Valuim to help with the spasms. It helps some, but I think it makes him more tired than anything.

He hasn't been able to go to school this past week. He cannot tolerate any type of movement, especially in the car. Causing my son pain is the worst thing in the world. He isn't telling me when his diaper is dirty because he is afraid to move. I have to watch (smell) him like a hawk.

The surgeon said the operation was a success; I hope we see the results soon. I'm sure this, as with anything, will take some time.

Let it snow.

 

The weather is nasty here in North Central, Ohio. We received a call from Ray's sister at 0400 to come and pull her out of the snow. She went into a ditch about a mile away from home. Ray has an old 4 wheel drive truck with a chain. Needless to say, he stays quite busy in the winter. He has taken me to work the past 3 days when I've worked. If we go into a level 3 snow emergency, we are required to spend the night at the hospital to work for the people who can't get in. I hope it doesn't ever have to come to that.

 

Jacob and his buddies are having a blast. This was a few days ago before the snow really hit. They managed to even get me with a snowball a few times. Boys are so much fun.

 

Darren is having a great time watching the guys have their fun. I threatened them with their lives if they hit Darren with a snowball. They were obviously scared of me. Molly the wonder beagle was the fierce protector of her baby brother. I've taught her well.

Being a mom is awesome.

Ray. That husband and Daddy person.

Things are still going well here in the Adkins' home. Darren and Jacob are doing well-- Darren's spica cast will be off in less than two weeks. We are all so excited about his recovery and the days to come.

This post is about Ray. Most of the people who read this blog already know Ray. We met well over a decade ago at a Super Bowl party. When I first met him I was at a point in my life where I though I needed to be alone. I wasn't interested in a relationship; he wasn't either. He had these intense blue eyes that look like the ocean. We joked around most of the evening and he kissed me before he left.

He called me the next day and asked me to dinner. He took me to a little Italian place and ordered my wine. He made me blush while he whispered sweet things in my ear. I didn't think I was capable of blushing like I did. We've been together since. I moved in 3 months later and we were married one year after we met. 

There are so many ways to describe Ray. He is so incredibly kind. He believes that people are good and that everyone deserves a second chance. He is passionate about his family. His life revolves around our family. He can take ugly things and make them pretty again. He has the patience of a saint and hardly raises his voice. He believes in talking instead of hitting. He is the best dad in the world. He tells me and the boys he loves us and freely gives kisses and hugs every single day. He has stong morals. He served in the Army as a sargent for 8 years. I've seen him laugh his big belly laugh and cry when his heart was broken. He speaks the truth when the truth is hard to hear. He supported me through college. He wouldn't allow me to quit even though I wanted to. He told me it would get better... he was right. Things always did get better.

I watched his chest puff out with pride the day we brought Jacob home. I watched him cry tears of happiness when Bailey was born. I watched him sob and his heart break when Bailey died. I didn't think he would ever recover, but he did. I saw that spark in his eye come back when Darren was adopted. He held it together when our hearts were torn apart. This man, my husband, is the strongest and the bravest man I've yet to meet.

We've been together almost half of my life. He helped me grow up. We've been together through the best and the worst of times. He has forgiven me more times than I care to count. I've often wondered what I've done in this life to deserve him. He has made me a better person. He never gave up on me even though I had given up on myself. There are times I wonder if he knows me better than I know myself.

 

The thing I remember the most was when I was admitted to the psychiatric hospital. I felt nothing. I was numb. I didn't care about him, my son, my life. Grief had completely consumed me. He sat across from me and told me to snap out of it, he pleaded with me to get better, he knew I had it in me. I didn't respond; I couldn't respond. I remember he touched me; he touched me on my cheek. I felt him. It was the first thing I had honestly felt in months. He made me want to get better. I did get better, and he was at my side rooting me on the entire time. He saved my life.

This man is my life, my heart, and my soul. I couldn't imagine my life without him.

Happy anniversary, babe. I love you more than I could ever express.

Half Pint

 

Stacy Seckel, one of my dearest friends, called me last night.

Her grand-daughter, little "Half Pint" was born yesterday around 4pm at 27 weeks gestation. She weighs 2 pounds, 6 ounces and is 14.5" long. If you look to the top of the picture, you'll see a 10 ml syringe. That will give you an idea of how little this wee baby is. She also has a club foot.

Please send Half Pint, Stacy, her daughter Sierra, and their family warm and healing thoughts and prayers. This little one is too small, but she is stable.

Back to school

 

Darren is continuing to do well. He is finally sleeping through the night and has been totally weaned from pain medication. He takes Tylenol on an as-needed basis which is to be expected.

In the picture above is Darren and Miss Melinda. Miss Melinda is amazing; she has the patience of a saint. Darren adores her. He can be so mean sometimes; he has told her that he is going to break her glasses and throw them out the door more times than we can count, but sometimes we are mean to the people we love the most.

He has been going to school four times a week. It has really helped get him back on track and in more of a routine. Miss Melinda comes out to the house on Wednesday to tutor him on the things he fell behind in while in the hospital.

 

Jacob is doing great. He is still a bowling fool. He has a girlfriend; he gave her a necklace at Christmas. I told him that he could take her on a date over the summer when they both are a little older. Hopefully he'll chose dinner and the movies instead of bowling.

   

Darren loves to watch his brother bowl. As a matter of fact, it's his favorite thing to do. The funny thing is that he prefers to watch the team instead of bowl himself. I'll never figure out this kid of mine.

We received a statement in the mail today that explained in detail what Darren's surgery entailed.

Lengthening illiosposas

Adductor Lengthening

Open reduction of the left hip

Prox. Femur varus derotational osteotomy

Acetabular osteotomy.

Boy, that was a mouthful!

Have a great day and I'll updateon more later.

xoxo, Dani.

Story about the Nurse from Hell.

I've been meaning to write this story for some time now. Not only did this affect Darren's life, the situation affected me as a mom and professionally as a nurse.

The night that Darren was admitted to the CICU, he was still very critical. I stayed at his bedside while Ray went over and slept a few hours at the Ronald McDonald House. The nurse, I'll call her "June," was having a bad night. I overheard her at the nursing station complaining that she was the first to get a new admit, which was Darren. I understood as I've complained about the same thing when I work. New admits are a ton of paperwork and very time consuming. Darren added to her caseload from one patient to two. Like I said above, I totally understood her frustration and made a point of staying out of her way.

She grew agitated with me being in the room. I swore to myself that I would not tell her or anyone else that I was a Registered Nurse. I asked her what medications were being hung. Even though Darren was heavily sedated, he would whimper when painful things were done to him. I would go to the other side of the bed and stroke his hair and arm, reassuring him mommy was there with him. She told me, "He doesn't even know you are here. He is fine. He won't remember this when he wakes up." At this point, I grew agitated. For petes sake, this was a Children's Hospital.

At 0330, Darren started retracting. This means he was having difficulty breathing, using all of his neck and rib muscles. His 02 sats began to drop, his pulse went sky high. He had been cardioverted (shocked) in the PACU to stabilize his heart rhythm. He already had an amioadarone drip hung. The red alarms kept going off on his monitor. He lept going into SVT and bouts of ventricular tachycardia. She would come into the room and silence his monitor, trying to reassure me that this was normal.

Around 0430, he began to gurgle and choke on his own secretions. He was aspirating his own secretions into his lungs. I went to the nurses station and asked if he could be suctioned. She pushed away the computer keyboard and stomped into his room. She listened to his lungs and got out a piss-poor suction tip, which looked a lot like what dentists use when you get your teeth cleaned. She suctioned out his mouth, but his mouth was not the problem; it was in his airway and lungs. I knew he needed more agressive suctioning; which is a small tube that goe into his mouth all the way to his lungs. His 02 sats went up from 68% to 82%. The normal sats range from 92% to 100%. She stomped out of the room, annoyed that I was making a fuss about him choking on his own secretions.

His sats continued to drop. His pulse continued to go sky high. You could hear his lungs fill with fluid. I requested that he be suctioned again more agressively. She came back in with a yankauer (a larger, harder tube) and suctioned to the back of his mouth. She told me, He better not puke on me; that's just what I need on Christmas Eve." She stomped out of the room and told the unit clerk, "This god-damn mom needs to realize that I'm the nurse. It's not her job to watch the monitor."

I left the room and hysterically called one of my nurse managers, asking what I could do to help save my little boy. She calmed me down and told me to grab the charge nurse. I am so grateful for her- I needed someone to reassure me and tell me what to do.

I went back into his room and his 02 sats had dropped to 62%. I called the operator and requested that the Rapid Responce Team be called (at Children's, this is called ACT). They worked agressively until 10am to stabilize him. "June" was obviously upset-- her eyes watered as the CICU attending and HER charge nurse barked orders at her. I looked at her from outside the glass. I felt absolutely no sympathy for her.

Two days later he was diagnosed with pneumonia. The infectious disease group came to assess him and to speak with me. They had to use his case for tracking purposes. They told me that he had Hospital Acquired Pneumonia that was caused by aspiration of his secretions. An incident report was filed against the Nurse from Hell at that time.

This incident taught me to listen to family members when they tell me that their loved ones aren't acting as their usual self. It taught me to look at the patient instead of the beeping alarms. It taught me to think twice about asking families to leave during procedures and after visiting hours. I have became a better nurse because of this situation.

I am so incredibly fortunate that he survived this incident. If I wouldn't have been proactive, it could have cost him his life.

January 10th; back to self.

I've been horrible about posting although I do have a good reason. My beloved laptop that I've had since beginning nursing school has officially pooped out. I'm mailing it to the laptop guy to have it repaired later next week. Until then, I've decided to use Ray and Jacob's computers.

Darren is doing wonderful. He is back to himself. He only takes Morphine at night and occasionally a dose during the day. We moved his crib into our room to keep a close eye on him at night. Nights seem to be the most difficult and painful for him. I think it is partially due to being inactive and trying to rest when he is kept busy during the day. He actually has time to think about being immobile at night; the "splinter" (he calls the cast a splinter) itches, it hurts, he is uncomfortable. We reposition him throughout the night when he cries out. Nights are definitely the worst.

The picture above is how we give Darren a bath. We have to completely cover his cast with a garbage bag and wrap the top with a head towel so that water doesn't get in. It's definitely interesting. Darren laughs the whole time.

We noticed that he was beginning to become withdrawn and wasn't talking as much. We decided to take him to the bowling alley to lift his moods (his favorite activity). That did the trick! He cheered right up after he was around people other than us for a few hours.

We've decided to take him to school twice a week for 3 hours at a time. He misses school and his friends; especially "Julie", his girlfriend. It will be good for him to have some socialization and be able to participate in music, art, and the special activities. His helper and long-time friend, Miss Melinda, will be there to help him. She is also going to come out to tutor him at the house a few times a week. He is excited about going back and having Miss Melinda come over.

Jacob is doing great. He is an excellent big brother. He was debating on attending the JVS or staying at the high school next school year since he will be a Junior. Ray and I prefer him to stay at the High School to prepare him more for college. We'll see how that goes. It is hard not being able to say "no" as parents to this decision. The fact is that he is becoming an adult and it is his choice about his future.

Ray's birthday was yesterday. We celebrated with a yummy ice cream cake.

I go back to work tomorrow for the first time in 3 weeks. I'm excited to go back. Ray has been trained well to care for Darren; I feel completely comfortable allowing Daddy to care for him for a little while.

The cast comes off February 9th!

January 4th; hangin' with mom.

 

Darren has recently began to complain of back pain; we're trying to come up with creative positions to help alleviate this. Last night we propped him up on a bean-bag chair in our bed. It helped for about 5 minutes.

Ray and I have been talking about how we can 'pay it forward' because everyone was so kind at the Ronald McDonald House. We're planning on hosting a meal once a month for the families and providing a box or two of laundry soap. We used the laundry facility quite often at the Ronald McDonald House since we only brought 2 days worth of clothes for our "short" stay. We only paid $20 a day at the Ronald McDonald House; Ray and I would take turns sleeping a few hours at a time so one of us could always be at his bedside.

The Ronald McDonald House is truely a 'House of Hope.' We used it when Bailey was at the Cleveland Clinic. We used it again when we didn't think we'd ever have to. That house that love built has been there for us through the toughest of times. We have met so many amazing people and parents. It not only gave us a place to eat and rest, it gave us a medium to build supportive and loving relationships. We shared a common goal-- OUR sick kids.

 

This is the house

Where families meet

To continue their lives,

To eat and sleep,

To find their strengths

And dry their tears,

To look forward with hope

To better years.

This is the House

That becomes their home.

This is the home

That Love Built.

January 3rd; we're home.

We were discharged yesterday afternoon. We brought Darren to the Ronald McDonald house to check out and show him where mommy and daddy slept and ate. The staff and volunteers cheered him on as we walked out the doors. The love and relief I felt was overwhelming.

Darren had a great afternoon and evening yesterday. When he first saw Jacob, he started to cry because he was so happy. Daddy made hotdogs (his favorite) for lunch yesterday and mom ordered stromboli for dinner. Papaw and Aunt Loretta came up to welcome our little man home. 

He appeared to be pain-free until about 10pm. We gave him medication and brought him to bed with us. He slept soundly until 4am. Another dose of pain meds were given and he slept until 8am.

Have you ever attempted to sleep with someone in a spica cast? It is interesting to say the least. Ray will be moving around furniture in our bedroom so we can move his crib into it today.

I am so incredibly happy that we are home. It feels so good to have everyone together again.

January 1st, New Year

 

This was taken on December 30th; Darren was finally able to drink clear liquids. Still in the CICU. Sedation was weaned; beginning to act more and more like my little man.

 

December 31st. NJ tube was pulled! This was a huge day for Darren; we were moved to the Ortho floor! He was issued a room with a nice couch (that pulled out to a bed) and his own bathroom. The best part of the move was NO MORE monitors!

 

January 1st: First day out of the hospital room in a week! Mommy took him to the downstairs lobby to look at the Christmas tree and to the cafeteria to get a cup of coffee. He flirted with any nurse available taking a break in the cafe.

Darren has taken strides in his recovery. He is staying awake during the day and is able to use his hands more. He has finally picked up where he left off. I've never been more scared in my life than I was this past week.

We will be going home tomorrow! Keep your fingers and toes crossed. I'll keep everyone updated. I promise I will begin to return calls soon. It's just been so incredibly crazy and my attention span wasn't high enough to hold a decent conversation over the phone.

Love you all!

December 29th; Room air, baby!

 

 

Today was a great (and busy!) day!

Darren is off of oxygen. No nasal cannula, no BiPAP, nothing. His saturations and respirations have been excellent. He has pneumonia in the base of his right lung; it is resolving with antibiotics and chest percussion therapy. He hasn't had to be suctioned for over 24 hours. His lungs are finally healing and recovering from all of the trauma.

He is still in Trigeminy. This means every 3rd beat of his heart is too soon and it comes from the ventricles instead of the atrium. He is tolerating it well; there is no need for any interventions at this point.

He has been weaned from the precedex (sedation) and the basal rate of IV morphine. He is now getting Vicoden through his NJ tube. He still has IV morphine to use on an as-needed basis; he only had to have it once when he got up to sit on daddy's lap.

He is looking and acting more like my boy. He smiled for the first time today and was able to get out of bed and sit on Dad's lap for the first time in a week. That cast is heavy! I bet it adds a good 20 pounds to his body! He was able to open a few gifts-- he got some presents in the mail from an online friend, Meg (thank you, sweetie! We played the games this evening) and a monster truck from an anonymous person from within the hospital.

We were assigned the Nurse from Hell on night shift. My heart went into my throat as soon as she walked in the room. I asked to speak with her and the night-shift charge nurse outside of the room. I asked for a different assignment and explained my rationale to them both so there wouldn't be any confusion. We are assigned to a nurse named Matt, who has been wonderful. I'm going to write a different post about my experience with the hell nurse on another post; it deserves to be read not only as a mother, but a nurse as well.

If he keeps progressing as well as he has; we'll be going to the ortho floor on Wednesday! This is a HUGE step.

This kid of mine is so darn tough. I've never been a spiritual person, but something/someone has to be watching out for him.

December 28th; help. my eyes are crossed.

 

Do you ever see that first photo of a baby in the nursery? You tell the parents, "He is one of the prettiest babies I have ever seen!" You cringe a little inside because the kid obviously was beaten by an ugly stick. But to the parents, that face couldn't be more beautiful. Darren has sores where the face mask was sitting; and he is cross-eyed. I don't think I've seen him so beautiful in my entire life. This is the first time he has opened his eyes in 5 days.

My son is officially off of the BiPAP. They did a weaning trial today and had to put it back on because his respirations went a little high (38). The attending physician who came on this evening told his nurse and RT to try it again and give him some time to adjust. It's now been well over 2 hours and Darren is doing beautifully. His respirations are equal and unlabored at 24-27 breaths/minute; his Sp02 is ranging from 95%-100% on 1.5 L of oxygen via nasal cannula.

He is doing wonderful. He had a yeast infection in his mouth; Nystatin mouth wash was prescribed. He complained today that he had to poop (it has been 6 days) and said his belly hurt. The nurse gave him a suppository and we are waiting for some results. It's been a few hours; I don't think it's going to help if it has been that long. We'll work on the poop tomorrow. They had to reinsert the catheter because he wouldn't urinate like he was supposed to. When they put in the catheter, he pee'd 700 ml-- that is 2 cans of pop! Urine retention and constipation are a side effect of morphine; we're going to try to wean him off of the morphine pump each day.

Aunt Linda, Aunt Penny, and Grandma came to visit today. It was good for him to hear their voices and to feel their touch.

It was the beginning of a good day. I think we are officially on the road to recovery.

December 27th, as*hole

 

Today was such a better day. I went over to the Ronald McDonald House from 0900-1700 and let Ray be here with Darren. As soon as my head hit the pillow, I was out. I woke up feeling refreshed and less depressed. Darren had a busy day with daddy!

His full-face mask was changed to a nasal mask. He has been talking to us in short sentences when he wakes up. He tells me, "I want to go home" and "where is daddy?" when Ray goes to the RMH to sleep overnight.

His kidneys are finally working well. They gave a diuretic called Lasix to jumpstart them. His catheter was discontinued today and he has been pissing everywhere since, especially my arm when I change him. He can pee on me all he wants; just as long as my stinker gets better.

His vital signs have all been great today. His Sp02 levels have been ranging from 92%-100%. Instead of doing every 4 hour suctioning, they've been doing it as needed. He is still throwing out funky heart rhythms once in a while, but they haven't been constant. I can deal with that.

He had a respiratory therapist named Brad who was pretty agressive with suctioning. It was good for Darren, even though he hated it AND Brad. In between the suctioning, he called Brad an asshole. And at the next break from suctioning he told him he was ugly. For those of you that know Darren, know that he's getting better when he begins to talk like a trucker.

I needed to see improvement. Today was such a blessing to actually hear his voice and to see his eyes open. One of the many bricks on my chest has been lifted.

I've posted a photo of his spica cast. It's a doozy. He will have to keep in on for 8 weeks.

Thank you for all of your calls, prayers, and healing thoughts. They mean so much.

Love, Dani.

December 26th; Darren has visitors!

 

Darren decided to get a bit fiesty very early this morning. While I was having my nightly date with the lunch ladies and mac and cheese heaven-- Darren pulled out his NJ tube (the one that has to be inserted in radiology). He bought himself some wrist restraints. Ray and I loosen them every hour to do range of motion; they really haven't bothered him much.

We had a busy day. Jacob came and visited. He was so kind and caring with Darren. He stroked his hair and talked to him. He didn't let the tubes and masks bother him a bit. It was so good for them to see each other. You could see him trying to open his swollen eyes when Jacob talked to him. It was hard to fight back the tears.

Arrin and her children came (the kids waited in the waiting room). Aunt Dorothy came. Aunt Jenn came later in the evening. We are so incredibly lucky to be loved.

His SpO2 levels continued to drop throughout the day. The nurse and respiratory therapist were agressive with suctioning. The nasal and oral suctioning went off and on for 2 hours. Out of all Darren has been through this week-- this was the worst for me to watch. I had to leave the room a few times to get my feelings in check. When I did leave, I felt this tremendous amount of guilt. It was for only 10 minutes at a time, but I felt like I was letting Darren down by not being at his side 100% of the time. I just had to leave the sputum and choking and coughing for a while to gather myself. I rationalized it by telling myself that Darren needs me strong and not to see or feel my intense pain for my him. There is just so much that I can take at one time. I hope my baby boy forgives me for leaving him while he was so vulnerable. I just hate myself for leaving when he needed me.

At midnight, he began having some funky rhythms on the monitor. He was in Trigeminy for about 45 minutes; then SVT for about 30 minutes. He calmed down to a sinus rhythm for a moment and then started having bouts of V-tach. They ordered electrolytes to see if this is originating from an electrolyte imbalance. He has been receiving Lasix IVP, along with continuous gastric suctioning-- both of which can lead to a potassium deficit. I am anxiously waiting on the results.

I had this feeling of dread every time I thought of this surgery. I attributed it to nerves. I now believe it was that mothers intuiton that you hear of often. If I would have known then what I know now- Darren would have never had this surgery. I was greedy and selfish because I wanted him to have the chance of walking and running. Because of this, it may very well cost him his life.

I am so sorry, baby boy.

Update; Christmas day.

 

Darren had a busy day today.

He spiked a temperature of 104.9 earlier today. They drew blood and urine cultures and performed a chest x-ray to see where the source of infection is coming from. The chest x-ray showed atelectasis (the air pockets in his right lung have collapsed) and possible pneumonia. Some good ole' tylenol and ice bags to his armpits was all he needed to bring it down. It has been normal since around 6pm. He is on 3 different antibiotics to kill out whatever is causing this infection.

His hemoglobin dropped to 6.4; two units of packed red-blood cells were transfused. His color perked right back up and the duskiness of his skin went away.

He had an NJ tube placed (a tube that goes from his nose, bypasses his stomach and sits in the upper part of his intestine) so he could receive some form of nutrition other than generic IV fluids. So far he was been tolerating it very well. The NG tube in the other nostril is still sucking gastric contents out; he looks funny with two tubes in each nostril.

The amiodarone drip was discontinued; his heart rate has been holding steady from 90-120 beats/minute. His respirations are ranging from 18-28 breaths/minute. The SpO2 levels (pulse ox) has been ranging from 92-98%. His blood pressure is low; but that is to be expected at this point in the game.

He still has several drips going. He has morphine for pain and small amounts of narcan to combat the side effects of the morphine while still giving him pain relief. He is on a drip called precedex, which is a very cook drug. I've never heard of it before now. It is a sedative that makes the morphine work better. This cocktail of medications is working well. He isn't in pain. When they were inserting the NJ tube in radiology, he was telling them "No, no, no." I'm taking that as a good sign because he isn't too sedated.

Other than the nurse from Hell on the first night-- the staff have been absolutely amazing, warm, and caring. His day shift nurse (Emily) for the past 2-days is a new-grad; she graduated 6 months ago. I have total trust in her. She gets help when she needs it, but still has an air of confidence about her. His night nurse (Bryan) is in CrNA school. He has these huge muscles, but his hands are so gentle with Darren. I've nicknamed him the gentle giant. And then there is Don, the respiratory therapist on days. He reminds me of a gentle grandfatherly figure. He's been at Children's since 1972. I have found him the most comforting-- he is so good with Darren and with us.

I have a date every morning with the lunch ladies in the cafeteria around 4am. They give these hug warm hugs that make me feel warm and loved inside. They also give me an extra scoop of the most awesome mac and cheese in the whole world.

Ray stays with us during the day so I can nap. I take night shift while he sleeps at the Ronald McDonald house. He is being the big, strong daddy-- but I can tell the stress is weighing tremendously on him.

Jacob is coming up tomorrow with his aunts. I miss him so very much. He had a great christmas. I think it will be good for him and Darren both to see each other. Even though Darren is sedated, I truly believe hearing his brothers voice will help heal him.

Thank you all for your wishes, thoughts, and prayers. He needs all he can get.

Update in the lands of CICU.

 

This is a picture of Darren right before surgery. Perfect with a less-than-perfect hip.

 

This is my son on his first day post-op in the CICU. His hip is pretty darn perfect, but his body is definitely less-than-perfect.

He started to go downhill last night around 0330. Definite signs of respiratory distress. His SpO2 levels kept dropping into the 60's. He was gasping for air, using all of his rib and neck muscles to aid him in breathing. His night-shift nurse was about as helpful as a tit on a hog; I initiated the Rapid Response team at 0500. They worked on Darren agressively until he stabalized around 1000.

His hemoglobin (oxygen-carrying red blood cells) had dropped dramatically; therefore, not enough oxygen was getting to his tissues at the cellular level.

His kidneys began to fail secondary to the hypoxemia.

He is now a proud owner (renter?) of a BiPAP machine for his breathing, an NG tube to decompress his tummy, two-IV's, an A-line, and a partridge in a pear tree.

Merry freaking Christmas Eve.

The surgery and admission to CICU.

Darren's actual surgery went very well. It lasted about 5.5 hours; Dr. Klamar said there was a good amount of scar tissue surrounded the dislocated hip and once recovery is over, he should have a pain-free hip. Very, very good news.

The very, very bad news is that he didn't tolerate anesthesia well, nor his pain. He went into SVT (supra-ventricular tachycardia; his heart rate was around varied around 275-320 beats per minute; his respirations were up to 90 breaths a minute.

We started worrying when the PACU didn't call us after two-hours. We were told to go to his room on the orthopedic floor and wait. Another hour passed. PACU finally called and updated us on his poor condition. We were asked to come down to be with him immediately.

When we arrived, the PACU had already began an amiodarone drip to help bring his heart rate to normal. He was on a morphine drip and receiving fentenyl. His pain was untouched. The surgeon finally ordered valuim to act against the severe spasticity that his body was going through. Something as little was valuim made the world of difference in relieving my sons pain.

We were (are) admitted to the CICU floor at Nationwide Columbus Children's. His heart rate has went down considerably, but not enough. His respirations are too fast.

We'll keep you posted as we know more.

An early Christmas morning.

We celebrated Christmas today instead of the traditional December 25th. The boys had a blast! Ray fixed biscuits and sausage gravy for breakfast while I watched Season Two of House (thanks, Santa!) and the boys played with their new games/toys/whatever.

Darren's surgery is scheduled for 0840 tomorrow morning. We have to arrive to the pre-op area at 0630. That means we'll be leaving the house around 0500. We finally explained to Darren what exactly was going to happen. We told him that if he healed up nicely, he may be able to walk one day. He asked if he could catch Jacob. I said of course, only if he'd give him a wedgy when he caught him.

We scrubbed his little body with dial soap, grape shampoo, and cleaned his ears. We gave him lots of kisses and he fell asleep right away. I know he'll come through the surgery just fine, but a little part of me is scared to death of everything that could go wrong.

Please send loving and healing thoughts to my little man. 

Cardiology Clearance

 

Hello from the Adkins' house!

There was a tiny glitch in Darren's upcoming surgery. The pre-op nurse called to verify Darren's medical history. He had an atrial septal defect (ASD) which means that he had a hole in the top two chamber of his heart. This is common with premature babies. We followed up with a cardiologist when he was 2-years-old and was told the tiny hole had closed on his own.

The pre-op nurse told us that we needed to have cardiac clearance before anesthesia since it will be a long surgery. We made an appointment with Dr. Kay at Columbus Children's. Darren had an EKG (showing the electricity of his heart) and an Echocardiogram (an ultrasound showing his heart muscles). The good news is that Darren's heart muscles are working well. The bad news is that he has a two heart dysrhythmias. The first one is called PVC's (premature ventricular contractions). This means that he has an extra heartbeat once in a while; the beat comes from the ventricles (bottom of the heart) instead of the atrium (top part). Many of us have occasional PVC's and not even realize it. Darren's just happens more often than it should.

He also had occasional junctional beats. This means that his heart beat is starting in the middle of his heart instead of the top part of his heart.

He had to come home with a Holter monitor to record the electricity of his heart for 24 hours. the top picture is of what it looks like.

I had a wide range of feelings. Our daugher, Bailey, passed away several years ago from complications of a heart defect. The possibility of Darren's heart being sick had me scared to death. Knowing too much can be a curse at times. Ray assured me that everything would be fine and he was right! We finally came out of the ordeal with little trauma to our hearts.

He was cleared for surgery as planned and we have to follow up with the cardiologist in one year.

The beginning.

 

I started this blog to update our family and friends on my 7-year-old son, Darren, through his progress before, during and after surgery. I'm also hoping this blog reaches out to other moms who are going through a similar experience; I find myself getting frustrated at the lack of information of personal stories; the vast majority of materials are written on the scholary side of things through medical journals and articles. His surgery is scheduled for December 23rd.

Darren was born at 27 weeks gestation weighing in at 1 pound, 15 ounces. He had several intracranial hemorrhages (brain bleeds) throughout the first month of his life. The outlook of my son was grim; there was a chance he would never talk, smile, or communicate. There was a possibility that the only feeling that my son would have was pain. He was diagnosed with Cerebral Palsy when he was 10-months old.

He is now in the first grade. He is smart, articulate, and sassy. He is mildly developmentally delayed, functioning at about a 4-year-old level. He can also count to 100, spell his name, and knows some letters of the alphabet. He suffers from spacticity that contract his tiny legs. He is left handed; the use of his right hand is limited. He is in a wheelchair; we hope he'll begin to walk with a gait trainer (walker) after his surgery.

This surgery is called a femoral and acetabular osteotomy. He has hip luxation (a more severe form of subluxation) in his right hip. In mommy terms, this means that his left leg is totally disconnected from his hip socket. The surgeon (Dr. Jan Klamar at Columbus Children's) will be cutting a portion of his femur out (thigh bone) and replacing it with a metal plate. The bone that is being taken out will be used to rebuild his hip socket. He'll be in the hospital anywhere from 3-5 days recovering from this orthopedic surgery. He'll be in a spica cast that will extend from his belly to his ankle to keep his legs "spead eagle" for eight weeks. He'll have intense physical therapy for 6 months following his surgery.

Darren has defied all the odds already. He is a tough kid. He definitely has special needs, but his needs are not what makes him special.