1 step forward and 2 steps back

I know I got the cliche backwards but that's what it's been like for our little guy. Graham's custom trach arrived Friday a week ago and it was put in on Saturday. His breathing improved with the longer trach and we were all set to finally move out of the ICU on Wednesday. But Graham had another episode of high heart rate and low oxygenation. And then on Thursday everything hit the fan. Graham started declining and with a room full of doctors they could not properly ventilate Graham. His oxygenation, which is usually in the 90s, was dropping as low as the 30s.

They called ENT to come scope him and at first they thought there was still some collapse of his trachea below the trach and they removed the trach and put in a tube that they could put in deeper but it didn't help. Eventually the attending ent doctor got out of surgery and came up and decided that there was some injury to the back wall of the trachea and a piece of tissue had been dislodged and it was blocking the airway. So they put in his shorter trach to not irritate the injured area and allow it to heal. The injury could be from trach changes or just wear over time from where the trach sits. Ent will evaluate again once he is better to find a proper fitting trach. They had to fully sedate and paralyze Graham and put him on a different kind of ventilator called an oscillator. This machine gives 480 tiny breaths a minute and so Graham's little body is vibrating. 

They had much difficult getting in additional access lines after all the craziness. Graham has been stuck so many times that he has no good veins or arteries. It took attending doctors hours to finally get in a central line (for meds) and arterial line (for blood pressure monitoring and drawing blood for labs). Graham had a PICC line but this is a tiny line and meds can't be given quickly enough in emergency situations. We praise God that they finally got the access lines. Graham looks like a pin cushions from dozens of sticks. 

Graham also developed a fever again. It is most likely the same infection he has been fighting for months rearing it's ugly little head again. He is back on antibiotics today and the fever is down. They have been to come down on the oscillator settings and down on the oxygen some over the weekend which is good. They worry about damaging the lungs when he stays on such high support. His left lung is expanding more than his right and we aren't quite sure why. 

It has been a long few days. We are very discouraged. We long for Graham to get out of the ICU and to get home. We have had many people praying for us and encouraging us. We continue to wait on The Lord to heal Graham. 

Our nurse snagged us a Mr. Potato Head quilt and a dog stuffie (you know from the infomercials)! G loves Mr. Potato Head. (All donated to hospital.)

That machine to the right is the oscillator. Looks so 1970s doesn't it? The machine in the background on standby is the regular ventilator. 

This organization made all the kids capes today! Very sweet ( although not sure he will be able to wear it with the trach.)

So thankful for all the programs and organizations that seek to improve life for kids in the hospital.