WTFery Posts

2 days in emergency rooms, 19 days in ICU, 17 days on a ventilator, 1 day off of ventilator. So we have made good progress, swallow test went well this morning, much better than yesterday, if it goes well tomorrow Phoebe will be cleared to eat ice chips. The hard part is she is thirsty and hungry and all we can do is wait day by day. Her right foot where the sepsis originated is looking very good, swelling is pretty much gone and the incisions from the surgery to drain the fluid off are healing nicely with no signs of infection, she will have 3 scars from the surgery as the wounds were left open to heal on their own as opposed to potentially trapping in the infection. We are celebrating the small wins and praising God for all he is doing in our lives.

Next steps on our journey. First would be to get on solid food. Second get out of ICU, this will probably require an evaluation of the infection and determination of no longer having sepsis. Thirdly we need a plan for what comes next, rehabilitation center or short term skilled nursing center. So conversations with the case manager, checking what, where, and who the insurance will cover to ensure Phoebe gets the best treatment our insurance will cover. Then the recovery, estimates I have read are that for each day a patient is on a ventilator expect at least 1 week of recovery and rehabilitation. So a conservative outlook would be at least 17 weeks to recover.

So that is were we currently stand, still have to work out the financial impact. There are deductibles, co-pays, Out of Pocket Maximums, to be met. Then we get into ancillary expenses such as meals, gas, etc. so all in all a very expensive July.

Once again thank you to everyone for their prayers, warm wishes. We are eternally gratefully.

So far today Phoebe has had a positive Spontaneous Breathing Test, cuff test was not great but they decided to go ahead and extubate, then a breathing treatment of Racine Epinephrine. So far she is doing ok other than coughing a lot which we have asked if there is anything she can get for the cough. Waiting on speech therapy to come do an evaluation of her ability to swallow so she can get something to drink. Unfortunately this is a hospital and most of the time nothing moves fast, especially new consults. We know that there is a long road ahead, but if we can stay off of the ventilator it will be a blessing as each day on a ventilator generally corresponds to a week in rehabilitation and we are at 17 days on ventilator.

So we live moment by moment, breathe by breathe, prayer by prayer. We thank all of those supporting us with prayers and well wishes.

Well the test went poorly, Phoebe was struggling to breathe and when they did an airway test (the tube has an inflatable cuff that expands to provide a seal) they could barely detect any air passing through the airway, so still very inflamed. Phoebe is also struggling with me as I try to interpret what she is trying to convey and failing miserably. So we move through another day, moment by moment.

Praying for a good day today, they will be turning off her sedative this morning and switching to CPAP mode for spontaneous breathing test. If that works they will make the decision whether to extubate her this morning. Praying that she will be able to stay calm and not go into distress. I used my Google MD and have read up on extubating and the combination of medicines that increase the success rate. I know that if she starts stating she cant breathe again to request the right form of treatment immediately.

So at the moment it is just a waiting game, waiting for shift change to complete and maybe they will let me in early to help keep her calm. Asking for prayers for Phoebe and our children Courtney, Matthew, Trevor, and Melody as I know the stress they are going through. Praying I can post a positive entry later today or tonight, praying that joy is coming this morning.

Psalm 30
4 Sing praises to the Lord, O you his saints,
and give thanks to his holy name.
5 For his anger is but for a moment,
and his favor is for a lifetime.
Weeping may tarry for the night,
but joy comes with the morning.

Well so far so snafu, Phoebe is sedated but not heavily so she is responsive, the problem is communicating. Currently she is too weak to write and I am not understanding her gestures and me asking her questions just frustrates her even further. So hear we sit, me working and her frustrated. I cannot begin to understand what Phoebe is going through and I have to let all of her anger roll over me. I have to remember this is about her, not me and put my pain aside and be there for her.

To all of our friends and family please continue to pray for Phoebe’s recovery, she has a long way to go. Even once we are out of ICU there is going to be a long period of rehabilitation and recovery. Thank you for everything.

Not even sure what happened to day 16, it was a blur and rollercoaster. They were able to extubate Phoebe in the morning; unfortunately she is still struggling with delirium from the sepsis, late last night they had to reintubate due to “strider” a complication where the airway restricts due to the irritation of the trachea. It is thanks to the great team of the MSICU at St Francis Hospital in Columbus, especially the on duty Nurse Practitioner Heather who heard Phoebe’s coughing and wheezing from her office and immediately ordered steroids and nebulizer. Phoebe quickly went down hill as she started panicking due to her inability to breath, they pre-staged to do intubation while waiting to see if the steroids and nebulizer made a difference. they made the call just in time as Phoebe’s blood oxygen levels crashed and her airway constricted.

So we are now back to the ventilator which is better than the alternative. Now we wait a day to begin trying the Spontaneous Breathing Testing. We also need to treat Phoebe’s sepsis dementia, continue treating the infection and letting her foot heal. Overall a long list to just get out of ICU. Probably looking at several months of rehabilitation after coming out of ICU.

We are very blessed to have so many people praying and sending well wishes. We are so thankful for everyone.

I wish I knew how many days we would be in ICU but we have to just wait and be still. They had Phoebe off of heavy sedative and pain medicine for longer today than yesterday. The plan is to continue each day the process of Spontaneous Awakening Trial (SAT) and we have had a better response today than we did yesterday. Unfortunately the trial takes time and we have seen progression however, there is no magic quadrant of progress that the doctors can provide as each patient is different. They have to deal with the pain she is in as well as her psychological state, working to identify which aspect is keeping her from being responsive and making adjustments to the protocol as we go along.

Once again thank you everyone for the prayers, messages, gifts to get us through, they are very much appreciated. If you want to receive the daily email update just send an email to cdengland@wtfery.org and we will add you to the list.

Today is day 14 of our saga, we started out at the Emergency Room of Emory of Decatur, were discharged and drove home from Atlanta only to receive a call that blood cultures taken when we first arrived in the ER had grown and we needed to get to ER due to infection. When we arrived at St Francis ER Phoebe was in septic shock, immediate steps were taken to get her blood pressure up and get her comfortable. They transferred Phoebe to ICU as soon as they could. Today is day 13 in ICU, they took her into surgery on Wednesday the 6th to drain her ankle. She came back from surgery on a ventilator. Phoebe has been on a ventilator for 11 days now and the attempts to get her off the ventilator have not succeeded as of yet. It is very difficult to watch her as she fights against the ventilator when they take her off of sedative.

I just want to thank everyone for their prayers, calls, and offers to help. Right at this moment we need prayers more than anything.

Be still and wait. Hard on any day to remember or accomplish, damn impossible when a loved one is lying in ICU. So I sit here in the waiting room, waiting for visiting hours to start back, taking every moment I can to be with my love, my life, my Phoebe. She is the better part of me. My breathing feels ragged, suffocating, the oxygen missing, I need to hear her voice, to look into her eyes, to tell her I love her and for her to react. I sit as still as I can and wait. I sit and try to nurture my mustard seed.

Today is day eight of our saga. Last Sunday my wife Phoebe started running a fever and when I checked her left foot it was extremely swollen and hot to the touch. We made the decision to go to the emergency room At Emory of Decatur, we should have just driven back to Columbus and gone to St Francis to start with, I guess we thought that with Emory’s reputation it was the best place to go. Little did we know we would see a pair of podiatry residents who apparently did not know big words such as sepsis or basic signs of an infection. Their solution was to put a cast on it, the only thing that saved Phoebe was the ER doctor we saw for just a few moments at the beginning of the night had labs drawn to test for infection and to order Vancomycin to start treatment. Perhaps like us he believed when he turned her treatment over to the residents that they would have a clue about her condition and treat her accordingly. So they put on the cast, wrote a prescription for some low level antibiotics since I asked them about the infection and discharged us from the ER with instructions not to put weight on her foot to further aggravate the bone that showed broken on the x-ray.

We proceeded to head home cancelling our plans with family for the Fourth of July. A few hours after we arrived back home we received a call from a Nurse Practitioner informing us that there was an infection in blood stream and that Phoebe had sepsis. We proceeded to the ER at St Francis after grabbing a quick bite to eat, in hindsight that was a mistake as we were up against a clock. When we were called back to triage, Phoebe’s blood pressure was extremely low in the 70/40 range they tried a different cuff with the same results, and rolled her immediately back to a room. Different machine and same blood pressure, went to a smaller blood pressure cuff and same reading. Through out this Phoebe was in an extreme amount of pain, she was dizzy and getting delirious. By this time we had been up for better part of 48 hours. They moved her to ICU. The next 24 hours were very rough as she was in pain and complaining she could not breathe. visiting hours in ICU are very limited and they called me in the middle of the night as she was being very belligerent and insisting they call me. I tried to get her to calm down and unfortunately it was not working. When I was finally allowed into see her she was so angry with me and the world in general. it was a very long day, trying to keep her calm and not hurt herself by pulling out an IV or the central line they put into the vein in her neck.

The days have been a blur, Orthopedics operated on her foot Wednesday draining 100CCs of puss of of her ankle, the cast had done nothing but exasperate the situation. She came back from surgery on a ventilator which she is still on and will probably be so for several more days. They had her on a cocktail of fluids, paralytic, sedative, antibiotics, various electrolytes, etc. 2 IV poles full of pumps and all of the various bags. Slowly they have weaned her off of the paralytic, reduced the sedative, tried to reduce the medication keeping her blood pressure up but she started going down again so they readded it. She has a great team of doctors and nurses caring for her it helps to reduce some of the stress, just being able to ask questions and getting back clear answers.

The hardest part of all though is the waiting, the long hours just sitting by her side, having to leave her side when visiting hours are over. There is the guilt I feel for sleeping through the night because of the medications I am on to combat insomnia. Then there is the guilt that I feel for being on mood stabilizers that keep me from being overly stressed. I know these are important medicines without which I would be a manic depressive mess, but it does not relieve the guilt that gnaws at me. I want to take her pain and carry it for her, taking on her suffering so she does not have to endure it. Phoebe is my heart and soul, without her I am nothingness. So I sit here with her every moment that I can, waiting for her to wake up, letting her know she is loved.