Month: July 2022

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.

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.