Kade has been home a few weeks and he is doing great! Gaining some strength back in his neck and legs each day. Trying to roll over again and making great progress. He will have a swallow study in a few weeks but he is doing really well!
Kade is HOME! They released him today and NO feeding tube. He drank from the bottle all day yesterday and this morning. What a miracle this is. Thank you all for praying for Kades healing and recovery and for giving to help Jordan and Britney with his expenses. We appreciate you all and are eternally grateful.
Wow! Kade drank 2 bottles today and his feeding tube is out. What a difference a day makes. Yesterday we thought he would go home on the feeding tube. They will keep him another 2 days or so to make sure he is able to drink in this position. He needs to lay on his right side, as being upright, on his back and the left side causes him to aspirate. His esophagus will heal over time but this is GREAT news. Praying for discharge this weekend.
Kade is still in the hospital. He is getting his voice back when he cries and giggles. He managed to pull out his feeding tube today and It's safe to assume he is tired of having it. We are approaching the 3 week mark. He still is unable to swallow, nurse (or bottle) and breath at the same time. He may have the swallow study tomorrow and then again he may not. Britney will be learning how to put in his feeding tube in the event he will go home with it. We are praying and hoping he will be able to nurse or drink from the bottle in the next day or so to avoid the tube. Other than that he is ready to go home. Just a matter of time.
Afternoon update from Britney:
Unfortunately today we had a bit of a setback for our baby Kade. We will not be leaving this weekend like everyone anticipated. We had the ENT doctor come in who checked down his throat at his vocal cords since he still doesn’t have a voice at the moment, which was making them wonder why. He still is not swallowing like he should be which is leaving a lot in his throat. On top of that, his vocal cords are not closing all the way right now which is more than likely because he has not gained back the muscle control of them yet along with swallowing. The plan is to let him regain strength until Monday or Tuesday and from there will do a swallow test. We’re hoping it all comes back and looks good.
On top of all of this, due to rising Covid numbers, they are moving to a code red on Monday. This means that I will be here by myself with Kade. We can only change out once every 24 hours between Jordan and I. We truly are praying he’ll be better on Monday and then we can go home. It has already been lonely, but now to not have Jordan is going to be even more difficult.
Update from Britney:
The Dr. came by today and said that normally infant botulism has a hospital stay of 1month, depending on recovery. The toxins in botulism is the most invasive toxin known to man and catching it sooner than later is best. Thankfully we did catch in within the first 24 hours. We want to make sure Kade is strong enough and we have no worries for him to be home. He still has a day and a half of weaning off medication and then they will monitor him for 12 hours after that to be sure there is no withdrawals to the sedation meds. Safe to say we have a few more days until he is cleared to go home. Speech therapist will also let us know when he is cleared and eating well.
Thank you for praying for baby Kade.
Kade is free from the ventilator! Praise the Lord. He didnt even need oxygen after either. Still waiting to hear him cry as he will need a few days to regain and find his voice. He also sounds crackled in his lungs but that is to be expected considering 11 days on a vent. He will have speech, OT and PT and swallow therapy over the next few days but he made it! He is his happy little self and Britney got to hold him after all this time. thank you for continued prayer for Kades recovery. He is a miracle.
Kade had a good day but remained on the ventiltor. We are going on Day 11. "Tomorrow" has been the theme of possibilities for it to be removed for a few days now. So we are hopeful that Monday 7/26 will actually be the day. He is such a good baby and has been such a trooper. We can tell he is about there and ready himself to have these tubes removed. We covet your prayers for baby Kade.
Kade is alert and a little more active today. Eyes wide open and giving a few smiles. HE is still on the venitlator and will need another day or 2 to gain his strength and be able to breath on his own. But he is getting there day by day!. Praise the Lord, He is a miracle.
Kade will remain on the ventilator for another day or 2. He struggled a bit this morning with his breathing and needs a little more time to heal and get stronger to be breath on his own. Fatigue can also play into this so more rest and less stress on him is needed. Thank you for continuing to pray for his recovery.
Today was a good day. Kade was put on a CPAP machine and his ventilator was lowered. He was moving a lot more today and was more active and alert. IF he does well throughout the night the Dr may decide to remove the ventilator tomorrw (Friday) Pray Kade will be able to swallow as this was the first problem he had when his nerves began to shut down. Also that he can fully breath on his own. God is good. This is truly a miracle.
Kade is opening his eyes about half way and for a little longer with less struggle to hold them open. He is still on sleep medication to help with the pain of the vent down his throat. They moved his neck IV to his foot today. If he continues to regain his cough reflux, they will Monitor for a day or so and then decide to take it out from there. After he off the vent he will stay for a few more days to watch him and Make sure he is ready to go home. Please pray for wisdom for the Doctors for the right time to lower seadation. Pray he will be very responsive this time around. This will be a wonderful sign of healing in his little body. Also continued prayer he will swallow well and be able to breath on his own. Thank you for your prayers
Tuesday July 20th.
Kades O2 levels from the ventilator have been lowered again to 10 breaths a minute. This is great news. His little body is able to breath much more than the machine is for him. He is also moving his lips a little bit and and opening his eyes a little bit more today. Continued prayer for more improvements every day.
From Britney tonight: Monday July 19, 2021
Originally Kade’s ventilator was set to 25 breaths a minute this morning and they bumped it down to 20 and by this afternoon they dropped it to 15! He is doing so well on his own and being able to breathe far more over the ventilator.
He has opened his eyes a bit more today and starting to move his neck and face more.
After discussing with the nurse about how other babies who have botulism versus Kade have done, progress wise, she has said that Kade’s movement is significant. Some babies can’t move for days, but this gives us so much hope.
He has been a little puffy and retaining water, so he was given a medicine to help him pee and release the fluid he is retaining.
They tried to complete the PICC IV today and his veins were too small, so they just have to keep his main neck IV clean to not get infection.
Kade is a little fighter and is doing so well. We feel that the diagnosis is accurate considering he is getting better. It could be weeks before we actually confirm that the results are botulism. He will be back to his normal self in just a little bit of time!
It is overwhelming to see how many people love Kade and our sons family. I am trying to keep up with the comments and reply to each of you personally. Thank you so very much to every single person and family who has given to Kades fund. Our entire family appreciates you all.
Kade had an MRI tonight to check the vessels in his brain. Waiting for those tests and also still waiting for results from CA botulism test. Some good news late this evening. Kade had some movement of his arms and feet. Also beginning to open his eyes a bit more. This is progress! Continued prayers he gets stronger every hour. Looks like the medicine has finally started working. Thanks to everyone who has given to kades fund. Our family is overwhelmed with gratitude.
Sunday afternoon July 18th, 2021. 2pm looking like Kade had a staph infection and strep B in his throat. Negative on any Neurological problems and looks good there. The other 2 would explain his fevers. Which can be treated with antibiotics which he was on but then stopped while waiting for the Antitoxin meds from CA. If this is the cause of his problems he may need some help to regain his muscles and nerve activity but this would be great news. Still waiting on Results for Botulism. thank you for praying and for giving!
Update: July 18,2021
Kade may possibly be on a ventilator for a few weeks. Still waiting on confirmation of Botulism from California Public Health specialist. This bacteria does not cause fevers so there may be other things going on also. They have called in neurologists and infectious disease team with hopes to rule out even more. Continue to pray and intercede on our family's behalf. Pleas to the Lord and mercy from the great physician is our Hope.