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.
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.
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.
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.
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.
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
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
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.
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.
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
al 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!
