WTFery Posts

We here at wtfery.org pray that everyone’s holiday is filled with joy and peace. There is enough pain and suffering in this world that we pray for everyone, we celebrate with you, not against you. Maybe it will take more generations of growth before we all understand that freedom and equality are the birthrights of every baby born into this world. And so we will continue to pray, every day, unceasingly.

Today was a very hard day, Phoebe is in a lot of pain in her lower back where she has scoliosis and has been experiencing muscle spasms. Part of the issue is she is not getting the pain medicine in the hospital that she takes at home. The other part of the issue is the therapy is not helping her back pain but is making her hurt more, but she pushed through and did all of her therapy today. Currently she is resting and recuperating. She is scheduled for therapy 7 days a week with shorter intervals as opposed to 5 days a week with longer interval.

Today has been very rough, Phoebe is going through withdrawals from the fentanyl they had her on in ICU because we needed another problem to deal with right now. But that is the way of life, long worthwhile journeys are never easy. So we are praying that some of the pain will subside so she can start making more progress in her different therapy sessions.

That being said please keep Phoebe in your thoughts and prayers as she fights her way forward.

Well today is the day we leave ICU behind us and head to Rehabilitation Hospital. Phoebe is ready to move and getting anxious to get out of ICU. Currently we do not have an eta for departure but they did go ahead and remove her Midline so other than blood pressure cuff and O2 sensor she is almost free. It has been a miraculous ride from septic shock to stuck on a ventilator in a medically induced coma, multiple attempts to get off ventilator, multiple intubations and extubations, then to Tracheotomy, to free and breathing on her own. The staff at St Francis MSICU have been incredible, under the direction of Dr Metry the care has been unbelievable and he has been teaching residents at the same time. I pray that the residents he has been teaching pick up even half of his bedside manner, knowledge, and skill; their future patients will be in good hands.

Thank you to our family and friends for all that they have done for us, the prayers, gifts and out pouring of love has made the journey possible. As we move on to the next stage we humbly ask that you continue to keep us in your thoughts and prayers, rehabilitation can at times be overwhelming and grueling; Phoebe needs to keep her spirits up and her motivation strong for the journey.

Phoebe is doing very well today. A little frustrated about still being in ICU but in good spirits nonetheless, talking is coming along very well though throat is still sore. All of her vital signs are good. So we hold and wait for move to another room or a direct transfer to Rehab hospital, may be today or next week as we are waiting on availability of a bed.

Once again we thank everyone for all the prayers, gifts, and uplifting messages.

Great news, she slept all night on the T piece did not have to get changed back to ventilator on CPAP mode. She was cutting up with the nurse and in good spirits. Dr is going to give her something to alleviate the cough as it is irritating her throat. They have also cleared her for ice chips as long as she takes it slow. Still no word on when they might move her out of ICU and to a step down unit. Will be therapy everyday going forward, not out of the woods yet but getting very close. There is concern regarding her vocal chords and she has a barium swallow test sometime Monday to ensure the path of liquids does not end up in her lungs. And finally she will have an ENT consult regarding throat and vocal cords. I personally would like them to leave the tracheotomy in until after ENT sees her, still worried that they take it out and suddenly have to intubate her again.

Therapy updates. Speech Therapy, Ice chips are approved as long as she takes it easy on them. Respiratory Therapy, still on T piece which is basically just warm humidified air with some oxygen. Physical therapy yesterday they transferred to a chair for 30 minutes. Occupational therapy assisted physical therapy for the move. Overall she is making good progress, praying that she will continue to progress day by day without getting discouraged as she deals with all of the struggles that therapy will put her through.

Please continue to pray for Phoebe as she needs them now just as much if not more as she takes each day moment by moment. We can see the light of day in the distance and Joy comes in the morning.

Phoebe is wide awake and doing much better, frustrated with my inability to read lips. On CPAP mode on ventilator now so, basically breathing on her own without oxygen, is part of the weaning process. She is doing good on CPAP mode.  May not need ventilator at all, so I guess the next step is to test off of the ventilator and see how she does, probably will be tomorrow before they give that a try. Still has to meet with speech therapy, physical therapy, and occupational therapy. She is anxious to go home, unfortunately she has a long road ahead of her to get back to living.

Who knows what today will bring, too many questions remain and I have to figure out what options work with our health insurance. I spoke with Phoebe’s nurse and she had a good night so we are off to a good start for the day. But have to see where we are with sepsis, status of her foot is it still non weight bearing. Sometimes it is hard to sit and wait, not knowing what is coming. But I have to place my trust in God, not an easy thing for me to do as I always want to fix things, make things right. I have to let go of this false sense of control and surrender to God’s will. In some sense I am no better than those who say they put their faith in God but carry a gun because they fear the world around them.

Around midnight Phoebe managed to pull off one of her mittens and extubated herself. When she was given the option of BPAP machine or reintubation she agreed to the intubation. The nurse this morning explained to her what they are doing and she finally consented once she understood it is just a temporary solution to allow her throat and vocal cords to heal. Currently we are taking things one day at a time, so for today we are just focused on making it through the two surgeries. Once we are through with those then we will set our next steps.

Surgeries are scheduled for this afternoon, was very concerned that her pulling the tube out last night might cause them to reschedule but the nurse assured me nothing has changed on the schedule. So now we wait as time crawls by trying to find peace in the waiting, being still and praying.

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.