mirrors for the hospitals

Lance and I have set up an account if anyone is interested in donating money to buy mirrors for Good Sam and Childrens. The account is in Parker's name at US bank. All of the money will be donated to one of these hospitals. Kangaroo mirrors are nice to have available to the parents holding their baby. We will place plaques on each of the mirrors that says...

In loving memory of Parker Ringhand 7/28/2009 - 10/30/2009

Please feel free to email us with any questions @ www.laneylindsey@hotmail.com or in this blog.

A Good Day

October 30th was Parker's actual due date and we had 95 wonderful days as a family with him. Yes, some of the days were emotionally challenging. However, through the support of our friends, family and most of all our faith in Christ the burden was seemingly light. Lindsey and I are doing remarkably well at this point in the grieving process. What we have come to understand is that this process is very personal and unique to each individual. There is no right or wrong way to heal. We also understand that our friends and family have had to endure this time along with us. Please be comforted that all is well with us and our little man is in a better place. No more struggles, pain or limitations.

I am going to give a short account of yesterday but I'm sure Lindsey will want to post and I don't want to take anything away from her. Without question there were some tears, but no anxiety. Our immediate families, Aunt Barb, Uncle Barry and Uncle Clay came by to spend some quality time with us. Despite the added commotion and conversation in the room Parker slept soundly.

Before our families left the hospital we had a prayer and Parker received a beautiful blessing from Ben Mizukawa. There was not a dry eye in the room. Lots of tears but also lots of smiles and love.

Lindsey and I will have hundreds of pictures to go through in the next few days. We were also fortunate to have a professional photographer come by and take pictures of Lindsey, Laney, Samantha, Parker and myself. A group of photographers volunteer their time and provide the pictures at no cost to the families. We will not have these photos back for a while but will share them when they arrive. Parker was awake for a few pictures at the end and seemed to be happy.

My good friend Vivek Narendran, the director of the neonatology group at University Hopsital also stopped by to visit. He came by to offer condolences and support. He also said that all of the doctors met and agreed we were making the right decision for Parker. It has always and only been about what was best for Parker. Vivek also pointed out that getting the group to agree unanimously on anything was rare.

The rest of the afternoon was surprisingly calm. Around 3:30 the nurses gave Parker some medicine to keep him comfortable and I picked him up out of his crib to hold him. Renee the RT, gently peeled back the layers of tape and adhesive from his little face and removed his feeding and breathing tubes. My little boy seemed not so little now. I remembered back to when he was only a third of his present size. Lindsey and I took turns holding him and almost instantly Lindsey and I could see he was gone even though his body hung on briefly. We had only imagined what we would be feeling at this point and nothing was as we expected. We were at peace and very thankful. Lindsey and I have always been on the same page and we know our lives and the lives of our families have truly been blessed.

We had made plans to leave at that point but we both decided we would like to stay. Lindsey and I made a little casting of Parker's right hand and left foot. We took our time to bathe him and put him in a beautiful little outfit. We thanked the staff and finished our goodbye to Parker with lots of hugs and kisses.

Walking out of the hospital for the last time a told Lindsey, "Today was a Good Day". She smiled at me and said " yes, it was"....

"Therefore I endure all things for the elect's sakes, that they may also obtain the salvation which is in Christ Jesus with eternal glory."
2 Timothy 2:10

a decision made

Last night Lance and I prayed together. We came to a decision on our own and then took that decision to our Heavenly Father in prayer. We asked him if we were making the correct decision for Parker and for our family. I was fortunate to receive conformation right after our prayer. Lance received his conformation this morning as we were walking through the halls of the hospital.

We met again with Dr. Crossman, Parker's Nurse and a Nurse Practitioner. (Lance wanted them to review the MRI results will me...in their own words) After we discussed the results, they were able to show me pictures of Parker's MRI.

Through prayer and conformation, Lance and I have decided to extubate Parker tomorrow afternoon. This is not a decision that we take lightly and we feel that tomorrow is most appropriate. Parker was due on October 30th. He will be 40 weeks adjusted. Our families will be able to visit tomorrow during the day. In the early afternoon, Parker will receive a blessing. After the blessing our families will be asked to leave. Lance and I will be able to have our own tender moments with our son so we can each hug and kiss him. At that time he will be extubated in our arms.

I am thankful for my testimony of the Atonement of the Savior and know that Parker will be made perfect after he passes. I know that he will be all right and not miss out on any blessings he would have received on earth.

Thanks for every ones thoughts and prayers. We will post again in a few days. We love and appriciate every ones support over the past couple of months.

Quality of Life???

I will never take my "normal/boring" life for granted ever again. I used to say my life is not book worthy. I have been blessed with so many wonderful things: loving parents, supportive family and friends, an amazing spouse, two beautiful daughters and a precious little baby boy.

Today the results of the MRI came back and the news was devastating. Parker's brain has suffered greatly over the past couple of months. Most of his brain did not show up on the scan, because it was absent. It is not what the MRI showed...it is what it didn't show. His brain also showed signs of hemorrhage. Because of the amount of damage done to Parker's brain, the doctor's believe he may not ever be able to breathe on his own even with the surgery.

Right now the plication surgery is scheduled for Monday. Lance and I have to make a decision whether or not to put Parker through this surgery. At this time we know we need to pray about this and make the best decision for Parker and our family. Please give our family some time...and we will let everyone know what our next steps will be.

We are so thankful and feel very blessed to have the support that we have from all of our family and friends. Every moment that we have had with Parker has been an absolute blessing. The next couple of days Lance and I will be spending the majority of our time at the hospital with Parker. Thanks for all of your prayers...we have not felt alone.

MRI Today

Parker had his MRI today. Lance was able to be there for the procedure. It took about an hour. We will not know the results until tomorrow.

Samantha and I spent the day running errands. We opened up a bank account for Parker. Followed by a trip to the social security office. (Parker being a preemie is eligible for SSI.) Then we went to the mall to return a few items. We both got a quick hair cut and had a nice lunch at McDonald's. I was pleased with everything we accomplished and was glad I got to spend some time with Samantha. Samantha is at the best age and is actually fun to hang out with. She talks to everyone and made me smile many times today.

Care Conference 1:00pm

(Nissen - explanation below)

(Picture of a G-Tube/Parker may need this in the future; The Doctor described this to us as a button on your stomach)

Today we had a care conference with 6 people from the medical staff. Including: Dr. Crossman (Neonatalogist), Dr. Frischer (surgeon), Mellisa (Nurse Practitioner), Another Nurse Practitioner, Nurse Care Manager, Careen (Fellow). Overall I would say that the conference was productive. We discussed Parker's current state from our point of view as parents and we discussed what the next couple of weeks are going to possibly look like.

The first procedure Parker will have is a Plication. This will fix the diaphragm by folding it in an accordion fashion and tacking it down. The incision is through Parker's chest. This doesn't "fix" the paralyzed diaphragm it just gets it out of the way so the lung can start to rehabilitate. We learned that his lungs create more tissue up to age seven.

The next two surgery's may or may not be on the horizon based on Parker performance after the first procedure. The first is the G-Tube. This is a feeding tube that is more permanent than the one he has now. It will go directly into his stomach instead of the one he has currently that goes through his nose. This helps him to get more nutrition.

http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm

Explanation About Gastrostomy / G-Tubes
Your child has had a tube placed in his / her stomach called a gastrostomy tube or g-tube. This tube provides an alternate way to offer food and / or medicines. It also can be used to vent your child's stomach for air or drainage.

The third possible procedure is the Nissen fundoplication. This is a surgery that treats reflux by taking the stomach and wrapping it around the esophagus.

MRI and Plication

We are going to move forward this week by scheduling the plication and brain MRI. Parker will be having his MRI in the next couple of days and will have the surgery as soon as they can schedule the operating room. Lance and I asked what limitations Parker may have with this surgery and the surgeon said...the surgery itself. The surgery is very rough and painful. He said he may have to break a few of Parker's ribs just to get to his diaphragm. Once the surgery is over, Parker will need a few days to recover before we will know anything.

Every day we learn more and more. We will know more after his MRI and we will know more after Parker has this needed surgery.

Parker Ringhand's Developmental Observation October 23, 2009

Parker was observed from 8:45am until 9:45am surrounding his morning care and start of his feeding. The purpose of this observation was to assess Parker's developmental goals and to develop a developmental care plan to help him achieve those goals. The information gathered from this observation will be shared with Parker's family and care team.

Environment

The large rectangular room called Pod D held 7 beds, 5 of which were occupied. The room was brightly lit by the long row of overhead lights down the center of the room and by several small amount of light at other besides and from light filtering in from the hall. The room was quiet as 4 nurses cared for the babies in the room. A cart used to hold care items for the baby next to Parker was setting next to Parker's bed and made his bed space quit crowded. A tall swivel chair sat next to Parker's bed and several more swivel chairs and a few rocking chairs were scattered throughout the room.

Bed space and Bedding

Parker's radiant warmer bed was in the second bed space on the right side of the room as one entered. The counter behind his bed held many care items and one of his new sleepers. The shelf behind his bed held his purple pacifier and his mouth care supplies. His bed was made with a colorful quilt and he lay atop his Z-flo positioner.

Parker's Behavior before Caregiving Interaction

Parker was observed for a few seconds prior to his care beginning as he was awake and crying and his face was bright red and purple. His monitor read his heart rate at 184 beats every minute and his blood oxygen level 84%. He forced to breath with the ventilator at 25 breaths every minute.

Parker's Behavior during Caregiving Interaction

Parker was observed as he was calmed and cared for by his nurse and the observer for the next 20 minutes. The observer began to talk to Parker and held him in a seated position in his bed. but Parker continued to fuss and squirm. As his diaper was changed he kicked out his legs and pushed his feet against the observer's hands. Once his diaper was changed and he was held in a seated position again Parker began to calm and look around as he breathed faster at a rate of 60 to 70 breaths every minute as he caught his breath. As he sat cradled in the observer's arms, Parker licked and smacked his lips as he looked around at his world. His assessment began and Parker began to cry again as his chest and tummy was listened too. He calmed again when his head was rubbed and his feeding started through his small orange feeding tube that stretched from his nose to his tummy. Parker was then laid in his bed on his back and given his pacifier. He stretched out his legs and held his arms close to his body with his hands in tight fists. He tried to bring his left hand to his mouth, but the IV board on his arm got in the way. The observer held his pacifier and he sucked and licked at it until his care was done. Parker was washed off with warm cloths, during this he turned bright red and stretched his body out straight with his arms down at his side. Once his neck was clean Parker calmed when his arms and legs were moved and the tone in his extension was broken (the stiffness of his arms and legs was stopped and he was able to relax and not drop his oxygen level. This is similar to an older child holding his breath.) He was again given his pacifier and bundled with his covered hands to near his face. Parker was now awake and looking around at his world. A soft heart beat sound was playing at the end of his bed and the observer read Parker a book as he gazed at her face and interacted with her through his facial expressions. During this time his monitor read his heart rate between 164 and 184 beats e very minute and his blood oxygen level 82% to 98% on 40% oxygen from the ventilator. His breathing was easy and uneven as he breathed over the amount of breaths given by the ventilator at a rate of 32 to 68 breaths every minute. Once Parker was calm and relaxed his color became pale pink with rosy areas over his nose and under his eyes.

Parker's Behavior after Caregiving Interaction

Following his care, Parker was observed for 10 more minutes. He continued to gaze at the observer as she continued to talk to him for 4 minutes longer. He then began to close his eyes as he became drowsy. His mom scented Snoodle was used to shade his eyes from the bright light at the bed next to him and Parker continued to bat his eyes for 2 more minutes before he closed them and drifted into a light sleep and his heart rate decreased to 150 beats every minute. His monitor read his heart rate between 150 to 168 beats every minute and his blood oxygen level 98%. his breathing was easy ranging between 32 and 58 breaths every minute. His breathing became more rhythmic as he settled into a light sleep.

Summary

Parker is now almost 3 months old (12 weeks) and is 39 weeks post-conceptual age. He was born to his mom Lindsey and dad Lance at 26 weeks post conception after several weeks of stressful events. At 14 weeks Parker's placenta began to separate from his mom and she began to have bleeding, then at 17 weeks his water sack began to leak. The sack sealed on its own and stopped leaking, but Parker's mom continued to have trouble with bleeding and required a blood transfusion before he was born. At 25 weeks Parker's mom went into labor and after 7 days the labor could no longer be stopped and Parker was delivered by vaginal delivery. Parker did very well at birth and needed little support to breath. He was given CPAP and taken to the NICU. During his stay at Good Samaritan Hospital, Parker was intubated several times for swelling of his nasal passages and sepsis. Between his intubations, Parker was on room air, breathing all on his own for 16 days. He was then brought to Cincinnati Children's Hospital Medical Center on October 12, 2009, after failing several extubations. Parker has a history of e-coli infections in his CSF (the fluid that surrounds the brain). This has caused some irritation or damage and caused Parker to have seizures, which he is now on a medication called Phenobarbital to help stop them. It was also found that the right side of Parker's diaphragm did not move like it should and later found that it was raised and not moving. Parkers's airway was looked at yesterday in the O.R. during a Micro Land B (Microsopic Laryngosogy and Bronchoscopy) procedure. Not much was found and soon Parker will return to surgery to have his diaphragm fixed. Parker currently needs his breathing tube very much and does not do well when he pulls it out. It must be replaced very quickly. He is receiving his mother's pumped breast milk that is being fortified to 26 calories per ounce and is being feed through his NG tube over 1 hour. He is slowly being transitioned to bolus feeds were he will be given all of his milk for the feed by gravity over 5 to 20 minutes. Parker has grown a lot from his birth weight of 940 grams (2lbs, 1oz). He now weighs 2410 grams (5lbs, 5oz). This tells us that he is growing slowly and is using his calories for recovering and breathing rather than growing. His calories have been increased in the past week to help his growth. Parker's mom and dad come in every day to spend time with him and today his mom is kangarooing with him, which he loves very much. Parker was held and kangarooed a lot before his transfer and he misses being held.

From this observation Parker shows us that he remains sensitive to his care and environment and continues to need lots of support to breath. He shows that he is very interested in his world and likes to interact with his caregiver when he is awake.

Goals

• From this observation Parker appears to be working toward the following goals:
• Continued strengthening of his breathing
• Continued efforts to console himself
• Continued interaction with his world

Recommendations

• To help Parker achieve his goals the following recommendations are offered:
• Continue to position Parker in ways that help him breathe more easily and bring his hands near his face. (Parker does not like his left side, but needs to work on turning his head to his left.)
• Continue to approach Parker slowly and offer hand containing before care to allow him time to adjust to the change in his environment and prepare for the care and interaction.
• Try to allow Parker to awaken on his own for care and feedings.
• Continue to follow Parker's cues and continue to offer him breaks in his care when he shows his stress cues, (crying, stretching out his arms and legs, turning bright red and purple, and dropping his oxygen level.)
• Continue to provide Parker with boundaries to brace his feet against, when he does not have boundaries to push against, he locks his legs out straight and has difficulty pulling them back close to his body.
• Continue to stay with Parker after care and interact with him and supporting him as he transitions to drowsy and/or sleep states.
• Continue to talk to Parker and allow him to see your face as his care is provided or when he is awake and interested.
• Continue to support Parker's mom and dad with holding him and kangarooing with him as he loves this and does best when held.
  

RSmith RNC
NIDCAP Specialist.

Samantha and Laney (my little devils)

Laney and Samantha as devils for Halloween 2009.

Lance holding Parker on Sunday

Tonight was the first time Lance was able to hold Parker since he was transferred to Children's. Parker did really well and slept most of the time.

Harvest Fest at Church

The girls and I spent the evening at the church's Harvest fest and trunk-or-treat night. The girls had such a good time and even won an award for the scariest costume. Lance unfortunately missed the whole night, because he was at home fixing our garage door. When I pushed the button to open the garage as we were getting ready to leave...the door came right off the tracks and was just hanging there. Lance was able to fix the garage door on his own, but it took all night and his back is now hurting.

I was able to visit with Parker today for a while and got to hold him again. He did great. The current plan is to have a care conference on Monday at 1:00pm to discuss the surgery plan for the week. Parker will need to have his non working diaphragm tacked down to make room for his right lung to inflate. After the surgery...the plan is to get another MRI of his entire brain. The part of the brain that they captured from the last MRI showed that his brain is not normal. They have not gone into detail with the results, but we plan to talk to a neurologist, hopefully some time next week. I don't think they can fully tell you how severely his brain has been effected by the lack of oxygen to his brain. This maybe something we better understand as he gets to a certain developmental age. If that makes since. They say a normal preemie takes two years to catch up. Parker has had a rough road already, but nobody is coming out and directly saying what his limitations might be. Next week will be another busy week for sure.

Holding him the past two days has been wonderful. I Cherish every moment I have with my son. Yesterday and today I began noticing some more seizure activity. He was twitching his feet when I was holding him today and yesterday he was twitching his hand pretty badly. They gave him a little test today and discovered he was no longer getting a therapeutic dose of his anti seizure medication. So they increased his dose this afternoon.

Today my brother, Jared and his fiance, Megan were married in the Bountiful Temple out in Utah. I am sad that I was unable to fly out to be with them on their special day. I love them both and am proud of them for getting married in the temple. Temple marriage is so important in our faith and it is wonderful to see them get married for time and all eternity. Hugs and Kisses to all of my family in Utah this night...and Megan...welcome to the family!!!

I got to hold Parker on Friday

Friday was awesome. It was the first time I was able to hold Parker since he was transferred to Children's Hospital. I was worried that as soon as they handed him to me they would kick me out because they kick you out of the room any time they are discussing another baby. We had just talked about this with another set of parents. The other day they spent 6 hours at the hospital and only 30minutes of that with their daughter. We have a very sick baby in our pod that needs a ton of attention. I thank Heavenly Father every day that my baby is not the one that needs that much medical attention, but at the same time it is frustrating to be kicked out of the room any time that baby needs to be discussed.

So I told my nurse that I wanted to hold Parker only if it is for a long period of time. He is still very sensitive to being moved and I do not think it is right to jeopardize the health of my baby just because of HIPA. So she said okay. We put up screens all around the bed side and a mirror so I could see Parker as I held him. I don't know if Good Sam had mirrors so the person holding could see their baby...if they do they need to offer them and if not...Lance and I will buy them some. It made the experience of holding him so much more enjoyable. Parker did so well. He was so comfy and did not ring off the whole time I was holding him.

Not so Fast

Sorry for not posting anything yesterday. Parker had a procedure at 3:00. I went straight home to meet the girls (all three of them) for the book fair and we went to the Olive Garden for Samantha's birthday.

The laryngoscopy went smoothly and the results were as expected. Nothing abnormal in the airway. I figured at this point we would be scheduling the diaphragm pilcation. Well, it probably will still be happening but we have a patient care consult Monday at 1:00. Right now Dr. Crossman and the surgeon will be there. I may request neuro to join us. Dr. Crossman is not convinced that the surgery will fix the problem. He believes that the problem is in Parker's brain and it just isn't telling him to breathe. It is one possibility. Most Dr's have said that if it were the brain the symptoms would not be so localized.

I really don't care at this point. The diaphragm is not moving and the ventilator can't inflate the right lung. Let's move the diaphragm and let this lung expand and maybe grow. Seems simple to me but I'm just a simpleton of a parent. We can worry about his head later.

Lindsey did get to hold Parker today for a few hours. They both liked it.

One big disappointment

Wow, today is almost over. Lindsey is reading a book to the girls titled What's Your Mood? It's a children's book so my mood is probably not in it. The procedure today was canceled again. Another day off work and we're no closer to a final resolution. We were told that the room was double booked 10 minutes before the test was supposed to start. This really didn't bother us that much it just added to today's frustration.

Sorry if I bounce around a little bit but I'm not in the mood for editing tonight. We got a new attending physician today. Dr. South had told me Dr. Crossman would be starting today so I at least knew the attendings name. During rounds he came to the bedside and didn't introduce himself. He just stood in the corner and talked to a dictation device or tape recorder completely removed from Parker's presentation. At least he could have looked interested or payed a little attention. No at least he could have introduced himself, maybe I'm expecting too much. Some Dr's can't be bothered with trivial things like communicating with the parents. I definitely get aggravated at times but usually get over things quickly, not happening. Lindsey didn't seem to be too concerned with his behavior at this point but her opinion changed this afternoon.

The results of the yesterday's tests. CT of the chest looked OK. The MRI results are abnormal but nobody could tell us what that meant. Neurology stopped by and said the little bit of the brain they saw looked abnormal possibly from lack of oxygen. Also there is a large collection of fluid the length of the spinal column. C2 to C4 looks abnormal also where the nerve roots/bundle leave the spinal cord. This may not be the cause of the nerve malfunction but it is suspicious. The neurology fellow was going to get with the attending neurologist and get back with us. Never happened.

I can't even go into all the conversations today with the nurse, nurse practitioner or Dr Ward Rice. They we're all great today. Someone however must have mentioned that we wanted to get all the Dr's together to discuss where we are and what each piece meant. Enter Dr Crossman, what a fitting name cross man. Finally he wanted to introduce himself. Not only introduce himself but lecture us on his job as the attending. I'm not saying we're the most medically knowledgeable parents but we have a better understanding than the average. We briefly talked about what neuro had to say and I asked if we would be calling in a neurosurgeon if neuro suggested it. He said, "we don't call anyone, I make all the calls here", nice you spiteful power hungry contemptible man who likes his authority. I will apologize if he turns out to be ok.

I was on my best behavior because I feel like we're stuck with this guy at least until surgery. I was going to let him know what my job is as Parker's father. We would have had quite the one sided conversation. Additionally, I would have asked him to review Children's Hospital family centered care philosophy and the eight core concepts. I think I am going to print them out and keep them in my wallet, just in case.

The attending said if the parents talk to too many of the Dr's things get chaotic. I'm not trying to cause chaos but if I would have insisted on the blood work after the first infection instead of just asking multiple times I would not be writing this now.

The ML and B is scheduled for tomorrow at 2:57 pm. I'll be there in the afternoon, but I'm going to skip rounds. I feel like I can only miss so much work. I was trying to save some vacation for when he got home. It will be the first time I've missed rounds at Children's and only probably the 2nd or 3rd time in the last 6 weeks. I try to time them perfectly and run over and back from work quickly. Lindsey and my mom will be there for rounds. Just me for the procedure.

Samantha's fourth birthday is tomorrow. She wants a Nintendo DS thanks to cousins Emily and Eddie. Lindsey and I think she needs to be a little older for that...so roller skates instead.

Think positive. Tomorrow is going to be a great day.

One Last Test

Parker had two tests this afternoon. One was a MRI and the other a CT scan. I knew neuro ordered a MRI yesterday but the CT was added today. We'll know the results tomorrow. Parker handled the tests well which was nice since he was out of the RCNIC for 3 hours. He's getting his last feed currently so he'll be ready for the microlaryngoscopy and bronchoscopy tomorrow.

Yes, tomorrow looks like the day for the last test. We'll need results for all of the recent tests but unless something pops up the diaphragm surgery will be scheduled soon. If there is OR time maybe even this week.

Dad is home

Sunday was a nice and relaxing day out at The Farm in Indiana. We enjoyed seeing Great Grandma and Grandpa, Uncle Barry and Aunt Barb, all of my family (except Erin...the flu!!! Yuck!!) and of course...my dad. Dad was a bit out of it and a little bit slap happy the 20 hour flight. (Mom and Dad came straight from the airport.) Which made the day full of smiles and laughter. It was a nice break. We talked about our family and all of the recent health issues. Unfortunately we have had more than our share, but we are used to health issues so we can handle them.

The kids had a blast fishing and playing games. I think I spent most of the day inside the cabin...I was freezing. Pumping every three hours has carved me down to 110 pounds. Every time I have a baby this happens. All of the calories I take in go straight to my breast milk leaving me thin as a rail. With Samantha the doctor ordered me to drink a milkshake every day. I end up with fat and healthy babies!!

Yesterday and today I have been unable to visit Parker again because of a cold. Any cold like symptoms they do not want you in the RCNIC (Regional Center for Newborn Intensive Care). So a little bit of a sore throat has kept me away. Samantha and I spent yesterday cleaning out the kitchen, doing laundry, and worked a little out in the garage. I tell you this whole stay at home mom thing brings out the OCD in me. I think Samantha takes after me...she really had fun yesterday and has already asked me today when we are going to start cleaning the house.

Monday Monday

I'll let Lindsey cover the Sunday posting. Her Dad is back temporarily from Iraq and the family got together yesterday.

We are still moving forward but it seems to be small steps at this point. I did get to talk to the neurologist this afternoon. It actually worked out well since they gave me a call when they could meet me at Parker's bedside. They didn't have all the answers but did order an MRI of the cervical region and the phrenic nerve. We're not sure it will show anything but it could rule out some causes. I was questioning at what point is the nerve damaged? What could be the cause? Will it repair itself? How can we test the nerve? The neurologist didn't think an EMG was practical . Hard to do and there are risks involved, she was going to check into it though. She did say that if the damage was caused by an inflammatory response to the infection the nerve might heal. Unfortunately, this process could take 6 months. She didn't know if the procedure was reversible if the nerve started to work in the future and also what would be the best way to check in the future this were the case.

MRI hopefully tomorrow. ENT wanted it done before the ML and B. I knew what the L and B were for but not the M. Neither did the nurse Lindsey asked. Microlaryngoscopy and Bronchoscopy. The surgeons want this procedure before we proceed with the plication. Just to evaluate the airway and vocal cords. If things fall into place the ML&B will be on Wednesday. No later than next week we will be ready for surgery. I'll know more details after the information is compiled and we talk to the surgeon.

Saturday, October 17th

My sweetie on Sweetest Day! Lance and I took turns visiting with Parker. Lance and his mother went this morning for rounds. I went over after Lance got home at 3:00pm. I stayed until around 5:00. I had a nice little visit with Parker and enjoyed talking to some of his nurses. I am getting much more comfortable to the new surroundings. Parker was asleep when I first arrived, but shortly after I got there he started opening his eyes and was wide awake for the rest of my visit. We didn't get much accomplished today. I had a ton on the To-Do list, but wasn't very successful at checking anything off. This evening, the girls and I did a little craft project in the basement. Laney had to decorate a pumpkin for school next week. She did such a good job. She worked on it for over an hour. My little artiest.

Pictures from today

These two pictures were taken right before Parker had his little episode today. He looked alert and happy. He even smiled a little. Then he filled his pants...then he got mad and started crying...then he crashed.
I put together a nice collage tonight of some of the items from Good Sam including: his first bottle, one of his hats, small diaper and his snoodle. It turned out really nice.

Moving Forward

While a paralyzed diaphragm is not exactly the news we were hoping for at least we have a plan to get him off of the ventilator. As Lindsey posted earlier we have not spoken to the surgical resident and I don't believe we will until Monday. As always I will have a list of questions for the surgeon and probably questions for a neurologist by that time. Typically, when the nerve that sends impulses to the diaphragm is damaged; trauma or cardiac surgery complications are the causes. Neither of which fit Parker's situation. The main questions will revolve around whether or not the surgery is reversible, if the nerve recovers. What are the complications and limitations of the procedure and lastly, what are other causes of phrenic nerve damage.

I think we are starting to settle into the new surroundings. Since Parker is now a surgical case we will move under the care of a new attending physician, Dr Rice. Lindsey and I met him today after they wheeled the crash cart away. He introduced himself and must have already receive word of the need for surgery. I recognized him as one of the doctors standing in the background both times they called the code.

Pesky father suggested that they give him lasix after the canceled procedure yesterday just to prepare him for the next attempt. All agreed and the nurses think he is breathing a little easier.

Occupational therapy, OT came down and saw Parker this morning. They are working on getting him soothing touches, which he needs. This is one area I think Children's has more capacity. Also the ease in which he was transported to get his fluoroscopy yesterday shows they are better suited to provide the additional tests Parker needs.

Sometimes the little things make a difference. Lindsey has felt that the communication has not been very good and reaching the nurses for a report frustrating. This morning she requested a call at 9:00 pm each night for an update. Lindsey, my Mom and I took the girls to see "Where the Wild Things Are" tonight. On the way home we were discussing the probability of a message being on the machine. We were surprised, the nurse called to let us know Parker was resting comfortably.

We'll see what rounds hold for us tomorrow.

Friday - Not much better

Parker had another episode this morning much like the one he had yesterday. I am amazed at how fast 20 doctors rush into the room in a matter of seconds. He dropped his heart rate and turned blue again, but did not pull out his tube this time. They gave him extra oxygen which helped get his heart rate back to normal. It was a little scary...seconds before he was looking around and smiling...then out of no where he crashes.

They got the results back today from the fluoroscopy and I think they saw what they were expecting...a paralysed Diaphragm. Not good. He just became a surgical patient. They will be performing the surgery hopefully some time next week. Surgical plication is the procedure that immobilizes and lowers the diaphragm. In Parker's case the diaphragm is already not working so they are just going to tack it down to get it out of the way. This will help to increase the resting lung volume and improve action of the intercostal and abdominal muscles during breathing.

We do not know the long term effects of this procedure as of yet. We will be talking to the surgeon tomorrow.

Lots of drama today

Today was a very rough day for Parker. This morning while Lance was standing at his bedside talking to his nurses... Parker yanked out his vent tube. He then turned blue and flat lined. Lance said about 25 people showed up in a matter of seconds. They reacted quickly and started chest compressions right away. They were eventually able to get the tube back in and Parker then rebounded quickly.

They proceeded with a Fluoroscopy at 11:00am.

What is a Fluoroscopy? It is a type of medical imaging that shows a continuous x-ray image on a monitor. It is used to diagnose or treat patients by displaying the movement of a body part. They focused on Parker's diaphragm so they could see if it is moving on its own or if the vent is doing all of the work for him.

Today was a long day. I am ready for bed and it is only 5:00pm.

Anesthesiologist is BOSS

No procedure today. After the anesthesiologist viewed his x-rays he said Parker had too much fluid in his lungs to proceed. We will know more after rounds today, but it sounds like the RCNIC team was upset with this decision.

What is a bronchoscopy?

Parker will be undergoing a bronchoscopy tomorrow at 9:30am.
What Is a Bronchoscopy?

A bronchoscopy is a procedure that allows Parker's Doctors to look at his airways, through a scope. They will be able to view the respiratory system, including the voice box, wind pipe, and airways for abnormalities or infection. They also can watch the movement of these structures during the different stages of the breathing cycle to determine why Parker is having so much trouble breathing. They want him to undergo general anesthesia so he will be able to move/cry during the procedure so they can witness any movement he makes. They will need to remove his vent tube and plan to replace it as soon as they have completed the procedure. Lance and I have to be present to sign consent forms and if they find anything during the process to consult with us first. I have a feeling it will be a long day tomorrow.

The more you know...

I was in error when I said Parker was 0 for his last 4 spinal tap attempts. I found out today during rounds that yesterday's 2 attempts were actually 2 different individuals sticking him twice for a total of 4 unsuccessful sticks. That hurts me thinking about it. Apparently, it is difficult to get these in babies. Parker received another blood transfusion today which just finished about 9:30 pm. I am hoping this will allow him to breathe easier. The doctors continued to say he was asymptomatic and wavered on whether or not to give him blood with a hematocrit of 23. I disagree that he has been asymptomatic. His FIO2 has needed to be increased over the past week as his crit has fallen, but what do I know. Oh, he needs to be bagged after cares too.

Tomorrow is the day. Parker's feeds will stop at 11:00 tonight to prepare him for his O.R. trip. Labs will be done in the morning and Lindsey and I will be present for the 9:30 procedure. We hope we get some answers and good news that this breathing problem can be resolved. We'll let everyone know tomorrow night.

Ouch, I said stop

Parker had another spinal tap today. Two tries today leaves his record at 0 in the last 4 attempts. I don't know if they'll try again, the ID doctors really wanted a clean tap.

Rounds were uneventful but we got to meet more of the staff. The morning blood work was pretty good. His hematocrit is a little low so another transfusion may be needed. Blood gases were adequate but since his lungs sound so bad the vent support was increased to 8. He will be getting another echo of his heart soon. It definitely looks like Thursday is the field trip to the O.R. We don't have any times or particulars yet. They have been trying to space out these procedure so he isn't overloaded.

The adjustment to his new surroundings is still questionable in my mind. Parker requires higher O2 settings both at rest and with cares than he has in the past. Additionally, Lindsey spent more of the morning with her hands on him trying to calm him down. Parker went from being the center of attention at Good Sam to being the other baby at Children's. He just isn't as ill as the some of the other babies. At Good Sam he was in a larger bed, because he was considered to be a bigger baby. At Children's he is the runt of the group and is in the smallest bed they have. Back in the incubator.

Change is Good?

Today was moving day. At 2:46:48 Parker left the safe confines of Good Sam and ventured out into the city. Getting him prepared for the trip took much longer than the trip itself. The nurse practitioners, respirator personnel and two transport drivers quickly escorted Parker down the elevator to the ambulance below. Lindsey and I drove straight over to Children's and only waited briefly at the registration desk before seeing him in his new bed.

Culture shock. Lindsey and I had been informed that the environment would be completely different than that at Good Sam. Everyone was right. I did say informed, not warned. The nurses, doctors and many friends all pointed out the differences between the hospitals but not that the differences were bad. We noticed that quiet, laid back atmosphere we left was gone as soon as we approached the visitor's parking garage. It's almost like visiting New York City when you're from suburban Cincinnati. People everywhere, varying shapes, sizes, colors and conditions of all types. This was just walking down the main hallway. Security everywhere.

The NICU is different also. It is open, bright and loud. There is quite a bit of talking, buzzing, beeping and even paging overhead. Parker will have to make some quick adjustments. Typically he likes to be left in a dark quiet place. There are 6 babies in his pod and some of them have the lungs of toddlers, boy can they scream. Even how they snuggle him in bed is different.

Lindsey and I finally left this evening around 6:30 pm. We got a chance to talk to the ENT resident and fellow, the attending medical physician, the medical fellow, the nurse practitioner, charge nurse, social worker, the respirator therapist, and Parker's nurse all individually. (I'm sure I forgot someone) Most had the run down on Parker and his current condition but they all got the cliff notes version of Parker's story from me. Mainly, everyone is just in the discovery stage. Some labs will be done in the am, chest x-rays on admission and probably some more tests to get a baseline for where he stands.

Wednesday or Thursday he will be going to the O.R.. This will be the first real test to see why he is having trouble breathing on his own. It requires a light general anesthesia and the intubation tube to be removed. The doctors will take pictures and video of his airway, vocal cords and anything else they can see then replace the breathing tube. Doesn’t sound like a lot of fun for Parker but he won’t remember anything. Additional tests will also be done on his diaphragm, some type of fluoroscopy study. Hopefully, he won’t start glowing.

Oh, Parker tolerated the trip just fine. He was only mildly agitated during the multiple assessments performed by the new crew. Amanda, his nurse showed us around and answered our questions in turn. Rounds will be between 10 and 11 tomorrow morning so I’ll know more later.

Lindsey and I have been going to Good Sam on and off since May with the pregnancy prior to Parkers birth. It will be strange to change routines. Thanks again to our friends at Good Sam.

Todays Pictures .....

Resting for the big trip.



My new crib.



My new room.

Parker safe and sound back in his bed after being held by his Daddy.

It had been over a month since Lance last held his son, so today was a blessing. I think we are all a little nervous about the move tomorrow. Parker is still very touchy with any type of noise and movement. I was glad to hear that the ambulance will be packed with all different types of doctors to ensure that the move happens in a controlled environment.

Sweet Dreams

Lindsey, her Mom and I spent time with Parker this afternoon. He was resting comfortably, snuggled up tight in his bed when Lindsey and I got there. I was planning on holding him so Crystal and Lindsey help get him out and situate his tubing. No problems moving him but as soon as they handed him to me he quit breathing. You would think that being on the vent would prevent this from happening. He turned quite blue and his heart rate dropped. After a little stimulation, suction and increased O2 he was fine. He rested well after this and did well when he went back to his bed. Apparently he had a similar episode early this morning. His vent settings have been decreased over the last few days and his rate is now 25 and pressures decreased.

Parker needs to have a relaxing night so he is up for his to big trip to Children's hospital tomorrow. Lindsey wanted to ride with him in the ambulance but unfortunately there's no extra room. We don't know exactly when he will be moved but we're thinking it will be after lunch.

Hopefully, we will have a chance to talk to the doctors tomorrow. We would like to meet them and get a tentative plan moving forward. The ID docs and the ENT docs will do consults soon.
When we know what's up so will you.

Pics from today.

3..2..1..

Three more days until the transfer to Children's. I spent the morning with Parker and he was wide awake and for the most part behaving. Only a few desats when he pulled at his tube or tried to move his head too much. It's been four days since the antibiotics were stopped. Blood work was done this morning and it looked good, so maybe we've kicked this infection. Crystal his primary day nurse will have him tomorrow and Monday. Jennifer his night primary nurse has him tonight, which is how it should be before the move. No major changes are expected, just weening his vent a little.

Once again we would like to say thanks to all our friends and family that have been so supportive. Laney and Samantha would especially like to thank Karen and Brenna for the awesome gift bag full of goodies. They had to sleep with the Cloud Princesses from Barbie and the Magic of the Pegasus. It's one of their favorite movies. I personally have seen it a couple dozen times and Ollie the giant is my favorite character. The girls were also excited with the personalized bags and the books. Laney said the Sesame Street learn your letters book was the greatest and just what she always wanted. This will help keep them quiet and occupied.

Here are some pictures from Thursday, pre and post intubation. You can she how much better he looks once the tube was back in and he could breath again. Hopefully, I can hold him tomorrow, I can't remember the last time. - Lance

Another Weekend

They decided to keep Parker at Good Sam for the weekend and transfer him first thing Monday morning. Lance and I just didn't want him to get lost in the shuffle of the weekend, so we requested some blood work to be done tomorrow morning. They will do a full work up when he gets to Children's on Monday, but we did not want him to go 5+ days without any type of proactive follow up. Parker went off of his antibiotics on Wednesday and they have not and were not planning on doing any tests until he got to Children's. We are glad that they will be checking on him tomorrow.

I was able to hold Parker this morning. He did really well, but when we put him back...he through a little fit. Other than that...We have a lot planned for the weekend. It is nice knowing that Parker will be able to stay one more weekend with his Good Sam NICU family.

Heads Up - Transferring to Children's

Justice (Parker's Dr.) called me this morning to give me the heads up on Parker. I was already in the parking lot at the hospital, but still really appreciate it. (We never know what we are walking in to) During rounds this morning Parker's Doctors decided it was best to put Parker back on the vent and transfer him to Children's Hospital. They were going to try to move him today, but said that Children's was crazy busy, so they will be transferring him hopefully tomorrow.

The decision to move him to Children's is bitter sweet for Lance and I. At Children's Parker will have access to all of the specialist that he doesn't have access to at Good Sam. So Parker being the person that he is and the way he responds to his treatment...this is important to do at this time.

Today Parker looked very good to Lance and I. He was wide awake before and after they put him on the vent. I must admit he looked much more relaxed on the vent. He was getting way too tired breathing on his own. (try breathing through a straw) Parker will be sad to leave all of his wonderful caregivers at Good Sam. They have shown him and our family so much love, for that we will be forever grateful.

Hugs to all of Parker's nurses...if we do not get a chance to say goodbye in person.

Parker's tears

Nothing really to report today. Parker is hanging in there. During rounds this morning they did say that if he has to go back on the vent he will be transferred to Children's Hospital. I think he will end up there any way because of his age, but we will see. We are waiting to see how he acts.

Parker's nurses are trying to keep him as calm as possible by keeping him covered and keeping the screens up around his cubical. Right now when Parker cries all of the oxygen, that is intended to go into his lungs, goes right out his mouth. So...no crying right now Parker...save the crying for Mommy and Daddy.

Technology Glitch

Before I go into any details on Parker's condition I'd like to apologize to anyone whose voicemails I've missed during the last few weeks. Apparently I have had multiple problems with my iphone. I had been attributing the problems of dropped calls to the AT&T network upgrade in the Cincinnati area and the software upgrade to the iphone. I am sure that these contributed to some problems. Additionally, the phone to computer tethering broke a few things. However, the big issue was a faulty sim card. I spent the afternoon figuring this out and picked up a new one tonight. It didn't work right away but it seems to be resolved now. I had 30 voicemails that did not show up. Ben, Mary Carol, Dee Dee, Christine, Vivek were just some of the ones I missed about Parker. I am glad to know that the Dr's were following up with calls even though I didn't know about them. (Hint: If you have an iphone and think messages aren't showing up visually, hold down the #1 on the phone keypad and you will be connected to your voicemail)

The little man is doing ok, I guess. Last night was a rough one for him and this morning not much better. The doctors were debating whether or not to reintubate him. As I said early, he really struggles when he is not resting, which shows in his blood gas results. CO2 levels in the 80's. His pH was hanging out around 7.28. The decision was to bump up the pressure of the C PAP to 8 if needed. His O2 percentages have been 25 to 55. Everyone is hoping that he will be able to make the transition off the vent. Say your prayers...... please....... his condition this evening remains the same.

Changes to the program. I did not make it to rounds this morning to ask about sending him to Children's to look at his airway and lungs. First, the antibiotics have been stopped. ID and the doctors agree. Second, feeds have been increased to 40 ml, he has lost a little weight the last few nights. No more steroids at this point. I believe the attending physicians change tomorrow but maybe not until Friday. His 6th spinal tap will come when he is more stable.

Wish I had more positive news for everyone, but we'll take even the most minute progress. Hang in there everybody and thanks for the support. - Lance

Hanging in there

Just a brief update. Parker is still off of the ventilator, so things are ok. Currently his blood gases are marginal. He does wonderfully when he is sleeping or sucking on his pacifier. Unfortunately, he whimpers and cries a lot which lets the air forced into his nose escape through his mouth.

No word on the ID consult yet, they are still running a few tests and would like to see another spinal tap done. We'll know more tomorrow.

Lindsey did get to hold him again today which makes three times since last Sunday. It still makes her a little nervous but it's worth the anxiety.

Pleasant Weekend

Saturday

Saturday after Megan's bridal shower, the girls and I spent some time with my family at a local farm. It was a beautiful fall day in Ohio. Below - Posing with the pumpkin we picked from the pumpkin patch at Niederman's Farm. http://www.niedermanfamilyfarm.com/

My sister, Erin with her husband Reuben and her two boys Evan and Logan.

Thanks grandma for such a wonderful afternoon as a family!!! We had a good time in the corn maze, on the hay ride and petting the various types of animals.

Sunday

Today during rounds they decided to go ahead and remove the vent. They believed he would do much better this time, because he had received steroid shots the night before. We called this evening and they have now placed him back on a C PAP. They started on a high flow nasal cannula, but Parker was working really hard so his CO2 levels were up to 75. They like to keep it right around 50. I was there when they first took him off the vent and he cried and just kept on crying. It is so strange to see him cry, because nothing comes out. His vocal cords are paralyzed from being on the vent for 27 days. It will take him a few days to regain his voice. They are going to reassess the situation in the morning by taking another blood gas to see if the levels have gone down. Oh yeah, the urine culture has also come back negative. So we keep ruling out possible sources of infection.

Field Trip

Parker's ventilator settings have been decreased and so far he is tolerating the change well. Lindsey got to hold him again yesterday morning. He liked it! The infectious disease consult will be scheduled for next week. The doctors are getting Parker's records together and performing some new tests prior to the meeting. This will give the ID docs a chance to go over the case thoroughly before then.

We'll post more later. See the pictures of Parker's trip to the 5th floor CT department.

Stand By Me

Well, so much to say. Parker is having a good day. Most of the time he is comfortable and just checking out his surroundings. He still gets aggravated with loud noises, being touched and sometimes just moving his head. He also makes the most painful faces and tries to vocalize his discomfort. The ET tube keeps his voice cords paralyzed so no sound comes out.

During rounds it was decided that Parker's antibiotics would be stopped since the head CT scan was negative for an abscess and his spinal fluid cultures are coming back with no growth. As Lindsey said earlier, we weren't fans of this approach.

Wanting to error on the conservative side I spoke with the attending physician following rounds to plead my case. First, while the stereotyping of the infection showed the same bug it also showed another strain of E.coli. This only points to his belly as the source it doesn't confirm it. I still wanted to look elsewhere to be safe. Additionally, I raised the question that we can not be sure that the antibiotic levels were at therapeutic levels at the beginning of his second treatment and the spinal tap didn't give us all the results we had hoped. Taking this information into account, I asked if a consultation with an infectious disease specialist was appropriate. He agreed or consented. Either way I'm much more comfortable and Parker will remain on the antibiotics until the consult.

An echocardiogram will be performed tonight to look for an infection source in his heart. All lab work looked good as did his blood gas. They are going to start weening him off of the vent.

We will post pictures tonight of Parker's road trip.

Oh, I forgot to say we like Parker's physicians and think they have Parker's best interests in mind.

Today is a big day

Yesterday the results started to pour in. The type match came back and this bacteria does match the bacteria from the first time Parker was sick. This means they did not get all of the infection the first time. The question is...Why (after 21 days of antibiotics) didn't Parker kick the infection?

Test Results

• Health Department found that this infection matches the first infection
• The LP culture, as of yesterday, still is negative.
• The CT scan of Parker's head showed no signs of an abscess.

Now what are we going to do? Are we going to keep looking for the infection? Is it hiding someplace we haven't looked? Or are we just going to take him off the antibiotics because he has had his 21 days of treatment...that is what his Dr. wants to do. Lance and I are not so sure it is completely gone and definitely not wanting him off the antibiotics until we are ready. I think we need a little more convincing this time.