"You ran how far?" by Chris Dusack

Habakkuk 3:18-19:

The Lord God is my strength.
He makes me like a deer that does not stumble
so I can walk on the steep mountains.

Or in my case, run up and down them.

Today I dedicated my first marathon to my daughter Norah. If she could fight for her life in the ICU for ten days, I could surely run for 26+ miles! And in her case, her fight was especially difficult, so it was quite fitting that my first marathon would be off-road, up and down a beast of a mountain.

I’d run/walked/hiked about 64 miles in the past four months. Thirty of those miles were just in the past week. I also put down about 1,100 miles on the road and mountain bikes in the same four months, in addition to two hours per week of weights in the gym. Don’t think you need to complete a training programs for running a marathon. If you are decent shape, you can finish one.

I decided about six weeks ago to try a marathon, but did not want to do a traditional big city, paved route. If I was going to be out on foot for 26+ miles, I prefer to be up in the mountains and off the pavement. The Mystery Mountain Marathon (MMM) is held at Fort Mountain State Park, near Chatsworth GA and covers some of the steepest and rockiest trails I've ever seen. I had hiked, run or biked the entire course and therefore was familiar with the rugged terrain and challenges that awaited me.

Two of my friends, Brian and Naqi. decided to join me and we split a hotel the night before, just a few miles away from the start of the course.

After competing in many bike races over the past year, I was welcoming a race where I did not need to be concerned with the numerous mechanical impurities of an eight year old mountain bike. No pedals would snap off, no brake rotors would bend, no flat tires. Even though I was about to run almost double of my longest run, I was very calm. I only had to make sure I brought my shoes, music, watch and water bottle.

At about 6:30, the wake up call and cell phone alarms were blaring. We were soon awake, showered, dressed and ready. I had a banana, an egg, a bottled smoothie and some grapes to eat. There was plenty of food along the course and I did not want to be weighed down during the start of the run.

We got to the race with enough time to finish getting dressed, get our race numbers, and get our food and water ready. Soon enough we were off and running, MP3 music helping to fuel my efforts. I passed Naqi, but was not sure if Brian was ahead or behind me, so I ran a slightly quicker pace to possibly catch him. Looking back at about the half mile mark, I saw a runner slide, then fall into a shallow mud pit!

The race starts off with a flat relatively smooth mile around the lake, then quickly turns off and hits a steep drop off that puts you on a very rocky trail. I passed a few other runners here and noticed that Brian was behind me. Soon we had to cross a bridge and start ascending. The uphills are my specialty! I passed a few other runners, then fell into a nice pace with a small group. This portion of the trail is called Gahuti. Brigette and I had run most of this earlier on in the year, so I knew what to expect. The trail is very narrow, sometimes barely six inches wide. There are numerous rocks, roots, and drop-offs. Passing is very limited, but still possible. I was able to pass a few more folks here when the trail opened up and started climbing.

After about 3.5 miles, I hit the first rest stop. It took me 42 minutes (12 minute miles, or 5 mph). I can usually run 3.1 miles in about 23 minutes. This was going to be a long day! I grabbed some food, filled up my water, shed some clothes and saw Brian bypass the rest stop…..

Lucky for me the trail started climbing again and I was able to catch up to Brian and run with him for a bit. Naqi was just a bit behind us. We walked, ran and hiked our way up to an overlook, then ascended some stairs up to a high point. From there we circled the top of the mountain, then started heading back down.

I had lost sight of Brian and Naqi and settled into a good pace with a few other runners. The trail smoothed out and was not so steep so I picked up my speed. I walked when I needed to and ran when I could, trying to keep on the heels of the runner in front of me.

The next few miles are a blur to me. Running these trails takes more mental focus than the most challenging mountain bike trail. I recall a gorgeous overlook where the clouds were well below me. That’s a sight usually seen from an airplane, not a foot race.

Fast forward to the mile 11 rest stop. At this stop I loaded up on calories, a little water and took a few minutes standing break. The next section of trail cut directly up the mountain. It’s in an area that looks like it should have a ski lift! I walked this section as fast as I could, then ascended more to a peak. From here it was a steep rocky drop then went on and on (a.k.a.trail 301.)

I’ve bike it plenty of times and it’s very easy to make good time on this downhill on a bike. Running it is a different story. Every step pounded my quads and rattled my body. I could have easily run up this faster than down it. Still, I had to make my way to the bottom as quickly as I could as it’s still a race.

After the toughest mile and half I made it to the next rest stop. Here I loaded up my water and ate as much as I could. It would be six miles to the next rest stop, then eight miles to go to the finish. I saw Naqi running down the trail and close behind him was Brian. I hadn’t seen these guys since about mile four! We chatted for a bit then I took off about a minute before them. They had caught up quickly then the trail turned up again. I was able to put some distance on them and took turns pacing with another runner. That only lasted so long as she was stronger than me and was able to run when I had to walk.

Along the way a few other runners caught up to me and we paced each other as best we could. We eventually hit a series of steep switchbacks that offer amazing views of multiple water falls, breaking out of the side of the mountain. This one of the few sections I was glad that it was a foot race and not a bike race. After climbing we had a short downhill to the rest stop at mile 18. Here I saw an older man that was talking about his race at Leadville. This is a 100 mile mountain bike race that STARTS at 10,000 feet. His story gave me the motivation I needed to push on. I left some of the runners I was pacing and started the downhill that would give back much of the climbing I just completed.

I ran this next four miles mostly by myself. Thankfully I had my music to keep me company. These miles seemed to go by quickly and I found myself at the rest stop at mile 22. I only had about five more miles to go! A volunteer told me I looked great for having run 22 miles. I told her that this was my first marathon and I was dedicating it to my daughter. She asked how much I trained and I told her that I did about 30 miles in the past week, but the few weeks before I was in the hospital with a very sick daughter. She asked if my daughter was ok and I said that she is home and she survived.

I thanked God for helping heal Norah and found a renewed energy to run hard for the next few miles. My pacing buddies never caught me. The pain of the downhills and difficulty of the uphills disappeared as I thought of Norah. She survived because she is strong. These thoughts were like rocket fuel as I blazed through the next mile.

I cruised past the next rest stop and started climbing again. I knew that a big downhill was coming, and I had to walk portions of this section.Then I hit the top of the monster climb I had gone up at mile 11. Going down this should be easy….

It wasn’t.

The pain in my feet and legs made it difficult to get down to the bottom. I constantly looked back to see if any other runners were approaching me, when I saw a very fit and tall man at the top, howling down to the onlookers at the bottom. I only had about two miles to go. Could I stay ahead of him?

As I made my way down this near cliff, he got closer….and closer….then he passed me near the bottom. This portion of the course hits a low at a creek, and then rises for just a bit where it hits the same rest stop that was at mile 11. I used this small rise to pass this fellow runner and run over to the next turn.

I asked if he wanted to pass me, but he told me to go on. Here we got back on the lake trail and had about a mile to go. This guy was six inches taller than me and could surely pass me, or so I though. I gave it everything I had and ran this mile with everything I had. I turned back and did not see him!

I sprinted on through the finish, about six and a half hours after I started, and completed my first ULTRA-Marathon. Yes, since it was 27.2 miles I can officially call in an Ultra-Marathon (http://en.wikipedia.org/wiki/Ultramarathon)! Soon enough Naqi and Brian crossed the finish line.

The elevation gain was almost 6,000 feet. The elevation loss is also 6,000 feet. I've copied the scaled profile from the Boston Marathon under the profile for the MMM. Apparently there is a section called "Heartbreak Hill" on the Boston Marathon. It rises 80 feet over 4/10s of a mile. We had sections that rose 360 feet in less distance.

hopscotch and tea

Over a week out of the PICU now and my sweet Norah is doing well. We are continuing her QVAR treatments twice daily but she is getting no other medicines and I am proud to say that after the mass quantities and various types she needed at the hospital.

We took a trip back to the PICU At CHOA yesterday to drop off a few things we took home accidentally and some donations. Norah could not come in with me but she asked questions about it and told me she did not like the PICU. I told her that the hospital made her better (errr saved her life) and that we never want to go back there but occasionally we would be making contributions to the little kids who have nothing and have to go back there all of the time.

Norah’s Auntie shared a similar story about another little girl who also went into he PICU because of complications from the Swine Flu. I broke down into tears when I saw this article. There were times when I wanted to blame her doctor for not treating her w Tamiflu early enough or getting her onto the respirator early enough or claim the CDC is holding out on us but the bottom line is this is a basted of an illness, disease, and flu and is nothing to be reckoned with. If you have a little one and they have not had a Class A or the Class B flu yet this fall, get them vaccinated.

We had our first (child) visitor over the weekend and it was great for Norah. She got to play, play, and play. Norah’s visiting friend Selah made her a hopscotch board on our driveway and I was delighted to see Norah hopping through it. Hopping is difficult and when it isn’t raining I will this game as therapy for her legs. I can use it to burn a few calories myself!

Tonight Norah joined me for a cup of tea while we worked on thank you cards. We are so blessed for such an amazing group of family and friends, thank you all for your continued well wishes and prayers for Norah’s continued recovery!

Next week Norah’s Grands are coming to visit from FL when she will go back to school and they will pick her up so she can rest and not have to go to the after school program. We are so blessed that she grandparents who all are willing to be in ATL in a moments notice for her. Thank you God for all of your blessings!

jumping on the bed

So today was a marathon day of walking for Norah. We were in and out of the car 4-5 times and then she passed out hard for a late afternoon nap.

Tonight she asked to jump on the bed. We usually let her as long as we are lying on the bed while she is jumping. Well tonight was an eye opener for her. She tried to jump and got scared because nothing she could not leap or bounce like she once used too. Nevertheless she continued to try for around 32 minutes and then gave up exhausted. I told her we would go again tomorrow and day-by-day her jumping would get better and better. Such a sweetie!

check up

Norah had her first (post hospital stay) check up today and the doctor was pleased with her results. We did not have to get new x-rays nor a check-up by a pulmonologist. Norah will go back to see Dr. Long (her primary pediatrician whom also treated her in the hospital alongside the ICU doctors and Pulmonologist) in another couple of weeks when her lungs heal a little more. At that time she will have a pulmonary (lung) function test to evaluate how well her lungs are working. The tests determine how much air your lungs can hold, how quickly you can move air in and out of your lungs, and how well your lungs put oxygen into and remove carbon dioxide from your blood. The tests can diagnose lung diseases; measure the severity of lung problems, and check to see how well treatment for a lung disease is working.

Once available her doctor would also like for her to go back for the Swine flu shot. Although they think she immune to it and will not give her the live (inhalable) vaccine they would like for her to have it. She was tested positive for the Class A flu but it was never confirmed that she has the Swine flu. Her samples are in the system but we are not sure if the CDC will test them.

Norah has had the Class B flu shot since she was born and I do not think she has ever had the flu until this year after she got the Class B flu shot but before the Class A flu shot was available. One of the nurses at the doctor’s office told me today that in her 22 years as a nurse she has never seen a flood of flu cases like the Class A 9 (H1NI /Swine Flu.) Generally Class B influenza does not start until November and December. My hope is that the Class A vaccine will be built into the Class B vaccine and Norah will be able to get it in late August like she normally does. Now time for Mom to go and get vaccinated! xoxo

progress

More eating, drinking, and sleeping and starting last night a lot more walking. Norah isn’t keen on walking around our hilly neighborhood but Chris managed to get her out to the nature trails and I started taking her on some errands and she is walking a lot from the car and back. She is wiped out tonight and I am glad for it. Although her legs look like toothpicks, she has gained a pound back and her walking is a lot more stable.

I have been hesitant to let her play with other children because her doctor does not want her caching a cold and would like her to stay away from other kids for at least a week since last Sunday however it is hard for her because she misses kids her age. Today her teachers stopped by and that put her in a great mood for the rest of the night. They dropped off some classwork, which she jumped on as soon as they left and then told me she can’t wait to get back to school.

Tomorrow we have our first check up with Norah’s pediatrician and I will ask him to refer us to a pulmonary specialist. I want to have one on hand should a cough accompany a cold this winter. The problem with her flu and pneumonia was that is was viral and unstoppable so I want to get more information about lungs, colds, and etc. Although it will be a few years before her lungs will fully heal, we have access to good medication which should reduce inflammation should she get a cold.

We are also practicing better hand washing, lots of friction and not touching our faces. Not easy for anyone! I missed the free flu shot offered at my company this week but will go out to get it elsewhere, I do not want to get sick and expose her no matter if she’s been vaccinated or is immune now, the viral stuff is a monster. Thank God she made it through though!

reflecting but moving forward

Norah’s second full day at home was a good one. She is talking a lot easier now, has a hearty appetite, and is generally happy throughout the day. We did not walk as much as I wanted her too but we will work on that more throughout the week.

She is still confused as to why her legs are wobbly and her feet are sore. How do you explain to a 5 year old they were in a hospital bed paralyzed for 9 days? Ugh. But as I mentioned yesterday her doctor’s said she is doing very well considering where she was last week and most kids would be in rehabilitation for another 1-2 weeks once they are independent from oxygen. I am just so glad she is home, resting and eating well.

Although I was strong for the last three plus weeks, getting to sleep is hard for me now. I lie awake reflecting on the past month thinking about the hours she suffered, when she couldn’t breath, and the label on her hospital file "Respiratory Failure" and I fall apart! Time to refocus that energy on getting her stronger which will make keep me me strong.

Norah is a fair weather kid. She doesn’t like it too hot or too cold so I am going to take advantage of the weather and get her outside more. We went out today but she didn’t want to get out of the stroller. May be tomorrow I will pretend that it doesn’t roll anymore and we have to walk home. No pressure Sweetie!

Thank you friends and family for your wonderful Welcome Home messages, cards, and generosity towards our family. We are so blessed that God is carrying us through her recovery and that you all have contributed towards our strength to help her get well. Many, many, hugs and kisses to you! xoxo

eating, sleeping, walking, and talking

We have been home over 24 hours now and Norah is doing well. She didn't get to bed until late last night and we did have to check on her a 1/2 dozen times when she woke up but she did sleep late and then napped for a long time today as well. She didn't get enough sleep her last few days in the hospital because nurses were in and out of her room all day and night. In addition her the various medications also kept her awake. I am thrilled she is at home for uninterrupted sleep.

Norah's Granddad and Grandy went back to FL this morning. They spent 2 weeks with us through all of the highs and lows and we were sad to see them go. We took Norah to Goldberg's for a bagel breakfast where we were happy to see her eating. She continued to eat and drink throughout the day and are delighted seeing as she lost over 5 lbs over the past 3 weeks.

She is making progress with walking and talking although both (especially walking) wear her out quickly. She tells me, "My legs hurt" and "I ran out of breath Mommy." It breaks my heart to hear this and I tell her that it will take some time to rebuild her muscle and strength. So we will take the next 10+ days and do just that. We will visit the doctor a lot and hope that her lungs show lots of improvement each time we go.

Thank you again friends and family for your support and cheers around her homecoming. We have been blessed beyond belief w this medical miracle. love, B

home to heal

I jogged back to the hospital today (Dad was on duty last night) and was bummed thinking we would need to stay in the hospital another night. I arrived and then within 10 minutes Dr. Long showed up. He asked several questions, gave us prescriptions and health warnings, and then discharged us. We were back home less than 90 minutes later.

Norah was much more relaxed and happy to be home. She is still weak and moody due to the different drugs wearing off and then the ones she is taking but smiled a lot more and is resting easier. We picked up the remainder of her Methadone, Albuterol treatments for just in case, and then QVAR which she will be taking thru the winter. This drug is a steroid used for respiratory problems and will help her if and when she catches a cold and with it shouldn't have to use Albuterol much if at all.

Her lungs will take around 2-3 years to heal and she will be more susceptible to colds and respiratory illnesses for quite a while. Over the next month she is required to see her Pediatrician once weekly and she needs a lot of rest to get stronger. Of course I am going to be paranoid to send her back to school in a few weeks but now know (better) what to do if and when she gets sick.

We are so grateful to her grandparents who have helped us out during this time. The house and especially her room and spotless and cozy which was comforting for her to come home too. Day by day I will log her progress for reports to the doctor. I even bought a pulse oximeter to record her blood oxygen levels while she is healing! Although it is going to take time for her lungs to heal, we have trust in God she will recover and he will protect her while we get there. Her doctor is as perplexed by her speedy recovery as he was at her illness.

I was so glad to leave the hospital but miss our ICU nurses, they were like my family while we lived there. I look forward to following up with them and Norah’s progress but hope to never, ever go back for anything else!

Thank YOU ALL for your continued prayers and your time, kind words, and positive thinking. The Internet has been an incredible tool towards Norah’s healing and our sanity and I want to thank you for keeping us in mind when you are online. Hugs and kisses to everyone, we hope to see you soon. Check back when you can for more healing updates, I look forward to posting Norah’s recovery as much as possible!

therapy

After a sleepless night and then a napless day we were told we could not go home tonight and may be not tomorrow. Norah has to be off of the nasal canual for 24 hours followed by more observation before we get are discharged. Sigh… Her Ped also suggested we get out of the room for fresh air and to get Norah’s legs moving. I would have done that earlier had we been able too!

The nurse got orders to unhook Norah from her IV (leaving the PICC line in) and she and I went for a walk. The facility is beautiful and the weather gorgeous. I got her outside and although her legs are a little wobbly she did pretty good. She is totally distraught about not being able to go home and did not enjoy the walk. Nevertheless, we will work to get her walking and then monitor her breathing, and then give her doctor results as soon as we can tomorrow. Fingers crossed.

I mentioned yesterday our room is in proximity to the helipad. I got some shots of a patient being dropped off. Oh how I felt for that parent, so scary. I hope the child is okay!

missing home

As of 4:00 am Norah is breathing on her own and her pulse oxygen is reading between 98-100 most of the day and I am very excited about that. When we got to the hospital over 2 weeks ago it was reading at 97 and by the time she got to the PICU it was around 87 w 100% oxygen flow.

She is also eating and drinking more and in addition to her nasal canula we were able to remove her arterial line and the heart rate, blood pressure, and other readers stuck around her body. Left is the PICC line pushing fluids and Zantac for her tummy. I am going to ask for it to be removed and the Methadone she is taking spaced out farther or cut out all together because it wires her and she wants to sleep. Finally I am going to ask for us to be able to go home! I expected to see the doctor early this am but I am sure he is treating more critical patients first. I know that once we get home Norah will bounce back even quicker as the hospital has become gloomy and boring for her in just the two days she’s been off the vent. I tell her, “Imagine how I feel kid!” So I am keeping my fingers crossed!

I am reading Norah all of the special messages she has received over the past week and a half without trying to confuse her. She received some cool gifts today, which we have been playing with while trying to pass the time. This section of the hospital is equipped with an awesome toy room but I am hesitate to get her out into the ward with so many sick kids cause we’ve been there, done that!

the floor

We (gladly) wore out our welcome in the PICU and were transferred to the floor around 6:30 pm tonight. We knew we were on a waiting list to go but were not sure when it was going to be since the hospital is so full. Norah fast tracked us however when the PICU doctor, Dr. Sysn came in and asked her for a smile and she said, “I want to go home!” He told her she had to get out ICU before going home and then proceeded to get her into a room.

The floor are regular hospital rooms and referred to that by ICU staff. While I was happy to get out of the PICU, I was anxious about coming back to the floor. We spent our first 4 nights here while Norah got sicker and sicker and a complication in her lungs. Then the same day we were put into the ICU she was put onto an Oscillator. While I thank God for the rapid response, I cry when I think about how I thought she was getting better and her situation actually became life-threatening, ah!

So now we on the floor again. But tonight I will pray that I will stop looking back and trust she will recover and we will get home very soon. “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and he shall direct your paths.” Proverbs 3:5

Norah’s Oxygen via the nasal cannula was turned down another half liter tonight and as long as her pulse ox stays above 94 we can keep weaning down. So far so good! Chris ordered pizza for a few ICU families tonight and Norah ate some of it and some of her hospital food dinner as well. I am happy to see her eat. I found out tonight she is getting an antacid to combat the effects of being medicated for so many days.

Our new room looks out onto the helipad which is a little freaky considering kids are coming and going all day and I can get even more details than I got seeing them rushed through the PICU. I have to gives immense kudos to ATL hospitals; they can get kids between hospitals in no time saving so many lives. And on that note I want to say thank you to the amazing ICU doctors and nurses, especially night nurse Norman who was responsible for recommending Norah to get onto the Oscillator before she couldn’t breath on her own anymore and then Jill who took care of her and put up with me for so many nights. And then our lovely day nurses Beth and Suzie who checked on Norah even when they were not working and took such GREAT care of her when they were. Thank you God for sending us those angels.

recovery

Although a happy day, yesterday was rough. Norah’s throat was sore and swollen, and she needed methadone every 6 hours to help her come off of the multiple sedatives she was on for over a week. She was agitated with a tummy ache all day. I was wore out and at 8:15 pm I went home to sleep for the first time in 2 weeks while Daddy stayed with Norah.

I arrived at the hospital today to a very different kid. She looked beautiful and was so excited for Mommy to be back. We sat and did a few puzzles and she ate applesauce, cucumbers, pretzels, and drank Sprite (something she hardly ever gets to do at home so this was extra special.)

The respiratory therapist (RT) turned down the oxygen she is getting via the nasal cannula and her pulse oxygen is still at 96-98%, praise God! She is getting Methadone every 6 hours for the sedation withdrawals Decadron as well to help with her swollen throat. I hope she can weaned off both very soon.

Norah could be moved out of the PICU and into a regular hospital room but CHOA is full to capacity with exception of the PICU. However if a critical case comes into the PICU then another spot will be made for her in a hurry.

The pulmonary doctor visited her today and said she is moving air well. The pneumonia is still concentrated in her lower left lungs but the films will lag behind her real progress. The Pulmonologist said Norah will require monthly follow up visits to her pediatrician as a case of pneumonia this bad will have some asthma like effects for a while. I am sure her pediatrician will be hearing from me, as I will be paranoid at every sniffle for the next few years.

I realize she still has a long road to complete recovery ahead but can’t help to want to get her home as soon as possible. I hesitate to push the doctor’s although I may be doing so by tomorrow; time for me to pray for more patience.

Your messages here, in email, and on FB are so fun and encouraging. They are like our daily vitamins giving us strength and I thank God for such amazing friends and family.

she's back!

My day began at 5:15 am. Norah was heavily sedated (shocker) for the last time in hopes she would sleep until around 9:00 am and when the ICU doctor could get to her for extubation. Around 6:15 am she was antsy, gagging, and pleading with her big watery brown eyes for relief from the tube on her throat. A few minutes later she vomited and the nurse and respiratory therapist (RT) paged the doctor and by 7:45 am she was extubated and put onto a Nasal cannula tube for oxygen.

She was horse and her throat was sore. The RT was concerned because her throat was swollen but he got her a steroid to help control that. She slept off and on afterward but mostly she grimaced about her tummy hurting, her body being sore, being cold and then hot, and having to use a diaper (I knew that was not going to go over well.)

Angel visited around 1:00 pm right in the middle of a very agitated state. She told the nurse to get Norah some Methadone because she was acting like that since she had been taken off the Fentanyl (as well as the Pentobarbital, Adavan, Versed) cold turkey. The nurse agreed and got it to her right away. Within 30 minutes she was relaxed.

She napped a little and then woke up around 3:00 pm and wanted to get out of bed. I fed her ice chips and then Dad arrived and I am taking a break. Although I am slightly wore out right now, I am thanking God for her progress. The doctors and nurses told me today and probably tomorrow would be difficult but to keep her calm and breathing well.

Her Oxygen levels were turned down from this morning telling me she was making even more progress, hurray! Now I want her to continue that progress because the pneumonia is still all over her lungs and I do not want her to not be able to breath.

Thank you everyone for reaching out. You have been amazing to us. Thank you for letting us share Norah’s road to recovery, your concern is so comforting to us right now. And thank you for your continued prayers and positive thoughts we will take them! Until later xoxo BD.

extubation

Norah made considerable progress on the vent today and after great blood gas results; her numbers were turned down even lower than I posted earlier today.

Our angel Dr. Keyes finally has a day off and I met Dr. Sysyn this afternoon. He told me the unit (what we would call the ICU) was swamped today but that he wants to stop Norah’s sedation medication around 6:00 am tomorrow and then extubate her around 2 hours after that. I was so excited but kept my cool because I didn’t want to seem overly confident because that was still 15 hours away.

Norah was pumped up with sedation drugs all day long and I cannot tell you how happy I am that she will be off of those. Thank goodness for Methadone or else this kid would be going through serious withdrawal.

The nurses told me that tomorrow would be a big (wonderful) day but a difficult one. Once she is extubated she will be groggy, horse, have a sore throat and generally miserable. But after 16 days of illness with 8 of them of her fully sedated and 2 of them being seriously life-threatening, I will gladly take her cranky!

I didn’t pester the doctor for the next steps but I believe she will be on an Nasal cannula for a few days and then hospital room air for a few days followed by rehabilitation all while her lungs get better and stronger.

When she could break out of sedation today and before the nurses could get to her w a a bolus of on Pentobarbital, Adavan, Versed, or Fentanyl we got to see her open her eyes and motion to us for her nose to be scratched and hold our hands.

Friends and family, I cannot thank you enough for your encouragement over the past week and more. Your messages are so comforting and give my family strength. Thank you for your love and keeping us in your prayers. xoxo

Lord, there are marvelous things that I do not know, nor can I comprehend. Lord, things that happen in my life, and things that happen in my friends lives. Lord, I desire to be thankful, to appreciate everything that comes across my path. Lord, so often life hurts, I get angry-upset, I do not understand, yet Lord You ask me to be thankful for everything, and have faith – thank You.

learning the vent

Today starts Norah's 3rd day on the ventilator, her 8th day in the PICU, and her 12th day at Children's Healthcare of Atlanta at Scottish Rite. I followed her numbers closely while she was on the Oscillator but haven't been so much so since on the vent because she has been doing well and I want to let it do its job and be patient.

My friend Robbie schooled me a little on the vent and I want to share those settings today so if I report her numbers, it makes sense. Her pulse ox is still be monitored and those numbers Praise God are ranging from 94-98 daily. This breathing machines helps provides pressure that forces air into the Norah's lungs helping her sick lungs work better.

• Norah's O2 concentration is at 30 which is excellent as she started off at 40 on Sunday afternoon. I think we breathe at 21 in room air so to quote the nurses, "She is only getting a wiff of oxygen."
  
• Her Positive End Expiratory Pressure (PEEP) reading is at 6 and it moved down from 7 yesterday. I think the doctor's would like to see it around 4 or 5, still checking.
  
• The Synchronized Intermittent Mandatory Ventilation (SIMV) which provides a pre-set mechanical breath (pressure or volume limited) every specified number of seconds (determined by dividing the respiratory rate into 60 seconds) is at 22. Within that cycle time the ventilator waits for Norah to initiate a breath using either a pressure or flow sensor. When the ventilator senses Norah attempting to breath within the cycle, it delivers the preset ventilator breath. If she fails to initiate a breath, the ventilator delivers a mechanical breath at the end of the breath cycle.
• And finally her Tidal Volume which is air going into the lungs the same way that it comes out is at 130

My hope is that I do not need to learn too much more about this incredible machine and that she will do well enough and come off of it soon. I will not push it though, patience will provide a fuller recovery.

Although Norah is doing great, I need to pray for my mental health. :) Norah is off of the paralytic drug and moving her limbs here and there and then opening her eyes a lot. It seems like every time she does the nurses pump her w a bolus of sedation medication or as they like to call it cocktails.They assure me this is safe and that she needs to be comfortable while she is intubated so as to protect the breathing tube, but I can't help but to express my concern, those big brown watery eyes are causing my knees to buckle under. I just cannot wait to hold her and give her 1000's of kisses.

movement

This afternoon the urine cathider was removed from Norah. It didn't seem to be working as well as it was and causing quite a mess. It is a good thing she is sedated because if she woke up and saw she was wearing a diaper, you would all hear her screams. Because of all the sedation her urine output can be slow and they might have to put the urine cathider back in but I am hoping warm baths will keep her going!

Since she was taken off of the paralytic meds, Norah has been moving around a lot; legs, arms, and shoulders popping up all day. This freaked her Grands when they first came into her room this morning but they are used to it now. And the doctor is pleased she is moving a lot. I am as well but hate that she is getting what seems to be more and more sedation drugs to keep her asleep and from loosening the vent tube.

The ICU doctor (our angel Dr. Keyes) said the films of her lungs looked better today. And this time he meant it (I think before we all were pretending with a lot of hope that the pneumonia was moving out more than it was.) Now with the conventional vent and her being able to use her lungs a little for coughing and such, it will move out.

Norah’s Pediatrician has been visiting her daily and said he will keep her on Tamiflu for one more day but she is off all antibiotics and that bacterial pneumonia was never found, she most definitely had a viral pneumonia but the antibiotics were used as a precaution anyway.

Norah's c-Reactive Protein (CRP) tests are back down to normal, they were up to as high as 15 before. CRP is used mainly as a marker of inflammation. Measuring and charting C-reactive protein values (thru blood) can prove useful in determining disease progress or the effectiveness of treatments. Viral infections tend to give a lower CRP level than bacterial infection. Normal reference ranges for blood tests are less than 5-7 and Norah’s range was as high as 15. Confusing since she is suspected to have a viral infection but who knows with this flu.

Tonight she opened her big brown eyes and although she cannot talk because of the tube in her mouth, she looked right at me as if she was in pain, I was standing by ready to help the ICU nurse with her bath but broke down in tears when I saw her look at me for the first time in 7 days and looking so scared. Needless to say I was fired from bath duty.

The ICU has opened my eyes to another world, as sickness has no prejudice. Every night in around the ICU waiting room is drama and tears (which alone could be another blog.) I am so thankful to God and this hospital for Norah’s recovery. And thank you to our loving friends and family for checking in. More tomorrow. xoxo –BD

meds

After a very good night on the vent (a.k.a. the conventional ventilator) Norah was taken off of the Rocuronium (paralytic drug) which will allow her to start expanding her lungs more in and out getting them stronger. With this her body has started moving so we have had to strap her down some. She has been sedated from 7 days now and as she is building up a tolerance to the sedation, the nurse has to give her more. If you can believe this Norah is on Pentobarbital, Adavan, Versed, and Fentanyl (which alone is approximately 100 times more potent than morphine!)

Although I would love for her NOT to have so much sedation medication, without it her blood pressure and heart rate hit the roof and that sets off the alarms.

Once the breathing tube is removed and she is coming around, the doctor’s will administer Methadone a synthetic drug used in patients on the strong stuff. It has a cross-tolerance with the strong stuff and a long duration of effect. Thank God for medicine.

As of today Norah was taken off of the last antibiotic. She was administered 4 antibiotics (Meropenem, Vancomycin, Zithromax, and Rocephin) throughout her stay and in addition to Tamiflu, which I do not think she is getting anymore either.

I will find out more about what to expect this week when Dr. Keyes makes his rounds but until that time I want to thank you all again and again and again for your prayers. Please keep them coming. I will pray to Him, and He will hear me, and I will fulfill my ways. –JOB 22:27

fluless

I forgot to mention that Norah was taken off of the Flu alert on Friday, hooray! Now the doctor's and nurses will continue to work on helping Norah heal the damage and destruction the nasty virus did to her little lungs.

The hospital puts up precautionary notes on patient doors if they have the flu or something that can be spread easliy to advise hospital staff and visitors to protect themselves befire they walk into the patient room (see similar precaution enclosed here.)

And although I was happy that Norah's precaution was removed, I was disturbed to see how many ICU rooms not have them posted. Moreover, I was sadden to learn another little girl w a case almost identical to Norah's had arrived today. I met her parents who were distraught like Chris and I were last week and although I tried to offer them comfort, I did advise them to buckle up for a scary ride because this flu is a reckless driver.

the Vent

I woke up today and found a conventional ventilator in Norah’s room. I was excited but unsure as everyone was attending to a new patient like Norah last Monday whom could not breathe on his own and had to be put on an Oscillator. I did find out that Norah had a great night other than her blood pressure making everyone crazy. It blows off the roof when her sedation wears thin and she wants to wake up (she is building up immunity to it) and then it drops super low when they sedate her again. Other than that, she did great.

The Respiratory Therapists kicked me out of her room around noon. And within 20 minutes I was told the switch from the Oscillator to the vent (conventional ventilator isn’t passe’ but not used much) was complete and successful, praise God! FYI I included some definitions of the breathing machines below.

We have a new nurse today and I dunno, I think when we get someone new they like to remind me how sick Norah (still) is. And even though that dose of reality is heartbreaking, I think about how far she's come since last Sunday and then give thanks to God for carrying her to this point in the last 7 days.

My most favorite doctor, Dr. Keyes who has been working daily since last Monday on Norah (praise God) updated me that Norah did well and is exactly where he wants her to be (healing wise) today and if she does well (with all her numbers) over the next 24 hours, he will take her off of the paralytic drug which will allow her to move around slightly but most of all let her lungs start working. She will still be sedated though, we do not want her waking up and yanking the tube out of her mouth. Dr. Keyes will be here tomorrow as well and I just have to give thanks to God for sending this Angel to us for so many days.

I thank all of our amazing friends and family for yourprayers and positive thinking, please keep it up!
xoxo Brigette

There are several types of machines to assist with breathing. Each device provides variable types of breathing support:

Conventional ventilators
Conventional ventilators are used when infants fail to improve with nasal CPAP or when they are in significant respiratory distress. This type of respiratory support requires that an infant have a tube (endotracheal tube) placed in their windpipe. The tube is then connected to the ventilator. Conventional ventilators provide pressure directly to the lungs and can either assist a baby with their own breaths or provide breaths to babies that are not breathing on their own.

High Frequency Oscillator
When a conventional ventilator fails to provide an adequate amount of breathing support or when we become concerned that the conventional ventilator may be causing additional harm to the lungs we may change to a special type of ventilator called a high frequency oscillator. This type of ventilator also requires that a tube be placed in the infant’s windpipe. The oscillator ventilator provides constant pressure to the baby’s lungs that keeps them inflated with air. It then vibrates very rapidly which can often be seen by watching the infant’s chest wiggle.

Response to lung disease and recovery from disease is unique. We can sometimes estimate how long an infant will need some type of breathing support, but the actual time may be longer or shorter than our best estimate.

Giving Thanks

Tonight I want to thank God and the city of Atlanta for having such amazing hospital facilities for children. Not only are we incredibly blessed to have the best doctor’s and nurses but God also provided our family the amazing technology to keep Norah alive and stable while she rebuilds her pulmonary health. I live in the PICU as well and I am seeing first hand what this flu can do and I just have to give thanks that Norah has this hospital room and this equipment available to save her life. I will restore health to you, and I will heal your wounds says the Lord. –JEREMIAH 30:17

The doctor’s morning report was a good one. There is a little air pocket on one side of her lungs and on the outside of them that he wants to see dissipate. Her films (formerly knows as x-rays) are looking better and if she has a stable 24 hours Norah can be moved to the conventional ventilator as early as tomorrow.

We had some blood pressure drama this morning (too low) and then again this evening (too high.) She wants to come out of sedation and when it starts to wear off, she let’s us know it!

Her pulse ox blood-oxygen has been pretty good today. It was higher yesterday and the day before but the nurses are turning on her side today so her the lung fluid moves, it was pretty condensed on the bottom and especially on the right side. She gets antsy when she isn't flat on her back. Her blood gas reading tonight was excellent, praise God!

All that said I am watching numbers yet again today. To be honest, I am on edge, I want so badly for her to go the next step, yet I want to be sure her lungs are ready. Tonight I will put my trust in God that he will guide the doctor’s to make the right decision re: the ventilator tomorrow.

Thank you for for continuing to pray for Norah: I want to say, “She is a fighter, and she will make it!” But my little girl is sensitive and sweet and only five so it is hard for me to rely on that. Instead tonight, I will put my faith I god and keep it there. I won’t be impatient for the Lord to act! I will keep traveling steadily along his pathway and in due season He will honor me with every blessing. –PSALM 37:34

Watching Numbers

My baby girl has been in the PICU and on an Oscillator for approximately 5 days, in the hospital for over 8, and sick for gosh, almost 11 days now. For so many of those days she was going down hill, and I mean plummeting, where no one knew what was to be expected, and then bam, she was in the PICU and fighting for her life.

Tonight I sit next to Norah, still attached to the Oscillator, still taking antibiotics, sedation and paralytic medication, and even fever reducers should she being to spike a fever. I struggled with the nurses today because her heart rate was high and I didn’t want her to have more meds to bring it down. Finally, we figured out that it was an afternoon pattern and keeping her on her back w her legs propped brought the heart rate down nicely.

I watch her numbers all day long: Oxygen, Carbon Dioxide, Heart Rate, Blood Pressure, Oscillator pressure, body temperature, and pulse ox. I am surely driving the nurses crazy.

Yet I am optimistic tonight. Norah’s afternoon films (formerly called x-rays which I have since learned is a passé term) came back this afternoon were much improved. The lower part of her lungs is still condensed with pneumonia but the upper area was less hazy. In addition her blood pressure is perfect and her pulse ox has been as high as 99 at times during the day.

Again it is baby steps. Our incredible doctor tells us that at best she will move to the conventional ventilator on Sunday but it could be as late as Wednesday and when he says she’s ready, she is really ready. Once she is on it, she will work to strengthen her lungs a little and then God willing move to rehabilitation with an oxygen line.

While I am optimistic, I will remain ready for complications because this no one can know the path of this flu. God’s word has taught me about his timing as well as his goodness. But theses things won’t happen right away. Slowly steadily, surely the time approaches when the vision will be fulfilled. If it seems to slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day! –HABAKKUK 2:3

Thank you for letting me share Norah’s progress with you and thank you for reaching out to my family. You have given us much hope, strength, and, compassion, which has been utmost comforting during this difficult time in our life. We look forward to the day when our sweet Norah can reflect on these notes and reach out and thank you for your loving concern.

Have a blessed and wonderful weekend. I pray tomorrow will bring another good report moving us closer to sweet Norah’s recovery.

Hurry up and Wait

This morning I woke up later than I wanted too (not surprisingly you wake up round 50 times a night in the family sleep room here) got dressed in a hurry and then ran to Norah's room to see how she did overnight. An unfamiliar nurse and student nurse were going over her Norah’s chart when I arrived. I didn’t want to interrupt so I blew her a kiss, splashed some water on my face, took notice of my new gray hair, and then sat and prayed while I waited for the PICU doctor to stop in for my morning briefing. Well God was incredibly good overnight and all day today.

* Norah’s chest x-Rays showed slight improvement. The pneumonia looked less dense on her right side and may be a little more dense on the left. Fluid could be shifting, I am not sure, but the this afternoons films were definitely a lot less hazy then what we saw on Monday
* The Pneumomediastinum air in the space between the lungs when air leaked from her lungs) seems to have healed or sealed up, Praise God!
* She has much, much less Sub Q air in her chest but still in the neck area
* She was able to get off of the Blood pressure medication for today and we hope it stays like that
* She could not yet try to take formula again but she is getting nutrition in her line which has amino acids, protiens and other good elements, we can try more formula again in another day or two
* Tonight starts the fourth night Norah will be on the Oscillator and the pressure on it has been turned down to 50% (we started at 70% and would like it to get down to 40% before moving to a conventional ventilator
* Her pulse ox blood-oxygen was hovering around 90-91 yesterday, 92-93 this afternoon and 95-97 tonight. I am really going to thank God for this tonight. When she came into the hospital 7 days ago she was at 97 with no help and that drop down to below 87 even with help hence we got her onto the Oscillator
* Her blood gas readings were a little concerning and the respiratory tech tweaked the Oscillator some and now she is taking in Oxygen and blowing out Carbon Dioxide like she should, yeah!
* She is spiking a little fever tonight which is concerning but this flu is so unpredictable, I was not surprised that it has to slap that day with something worrisome

I know it's a lot of medical jargon but these are the baby steps the doctors wanted to see since she got into the PICU on Monday and they are giant leaps for Norah. Now I will thank God for so many miracles since last nights report and then pray to him for continued progress including continuing to clear the pneumonia, giving the doctor's and nurses continued strength and wisdom while treating her, and ask that the medications and machines continue to help heal her and be gentle to her little body.

Your continued prayers, positive thinking, and generosity have made such a difference in our lives. We now believe in the power of prayer and value the support of family and friends and even friends of friends more than you know. We want to thank you from the bottom of our family's heart for reaching out to us during this time. We have a long road to recovery but are strengthened by your support and God’s healing hands. Thank you.