WTFery Posts

Phoebe is resting well, on sedation so she can not pull the tubes out. She will be having surgery tomorrow for a Tracheotomy and a feeding tube to her stomach as she wont be able to eat or drink anything for awhile. They are both removable and will allow her throat to completely heal. She has a long way to go still with a variety of rehabilitation that she will need to go through . Not out of the woods yet but making good progress.

The downside is I still have to work with the ICU team to determine discharge date and where she will be going from here, the downside being the calls with insurance company to determine benefit eligibility, in network providers and locations where she can be transferred to for rehabilitation.

Thank you everyone for all of the prayers and warm wishes, they truly mean lot to our family. Looking forward to having good news to share in the next day or so.

The day really started as a continuance of yesterday, Phoebe was anxious, demanding to go home and we spent most of the night arguing back and forth about how she was in danger if we left ICU and went home and her arguing she needed to go home and sleep. The day dawned without much headway on the argument as we both staked out positions that were selfish and inconsiderate. This was without a doubt the worst fight we have had in 29 1/2 years of marriage. We spoke with the doctor, a young resident, in the morning and it did not bring any resolution as we both we’re intrenched into our positions. We both said hurtful things to each other, things that only time will tell if the wounds will heal.

The doctors had no more than left the room when Phoebe started screaming that she was scared and could not breathe. In less than a minute her lips started turning blue then purple, I alerted the nurse who just walked into the room and she immediately coded her. Luckily we were in the right ICU at the right time as the doctors and nurses worked quickly to reintubate Phoebe, normalize her stats and get her on the ventilator. This was unfortunately the third intubation on Phoebe that I had to witness part of, I was quickly rushed out of the room and sent to the waiting room. I had to inform our children, well adults, that she had coded and they reintubated her and were working to save her life.

When I was let back into the room Phoebe was still very much afraid and anxious, pouring sweat and I asked her if she would be ok to have a Tracheostomy performed, that it was a surgery to bypass her airway and she nodded her consent just before she tried pulling the tube out of her mouth. She fought against myself and a nurse for what seemed like forever before the nurse was able to get her sedated and calmed down. Tomorrow we will meet with the doctor and I want her to be lucid enough to understand and give her consent to proceed with the surgery. I have no idea what we will do if she refuses to have the surgery. All I can do now is pray that she will consent to have the Tracheostomy performed, there are no other options as her vocal cords are what locked up her airway and they need time to heal.

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.