Tuesday, December 18, 2012

Please pray for Max.

I have been updating Facebook because it is a lot easier but I thought I should quickly update my blog since some people read it and not Facebook.  I don't have a lot of energy or eloquence tonight so I am just going to explain the situation as best I can.

Max has been having a lot of 'secretions' (snot, mucus etc) really since come off the ventilator initially but it did not seem to be compromising his breathing.  We thought it could just be related to having had a breathing tube down his throat or from increased fluid needed to maintain his new kidney.  He seemed ready to come off his ventilator and was breathing all on his own with just a canula to give him some extra oxygen this weekend.   On Sunday we started noticing that he seemed to be working hard to breathe.  He kept his oxygen up but it seemed like hard work for him.  We weren't sure really what was wrong and hoped he just needed to pee off more fluid.

At the hospital they can very quickly check Max's blood and see how much oxygen is in it, how much carbon dioxide is in it and what the pH is and they have set parameters for what they want those numbers to be.  Through the weekend everything looked fine.  But Monday morning, the amount of carbon dioxide in Max's blood was creeping up.  And it continued to increase and reached too high of levels, regardless of moving him to CPAP, a machine that gives him more oxygen and support.  He was just not able to breathe effectively enough to keep his blood at the levels it should be.  So they went ahead and put him on a ventilator.

Initially after surgery he was on a ventilator to heal and as a precaution.  Now he is on a ventilator because he couldn't breathe on his own.  Which is an entirely different and much more serious situation. 

We weren't sure why this change had happened.  Until we got the positive RSV test back, which really makes it good news because we know what is wrong now.  RSV is a respiratory virus with cold like symptoms like runny nose, congestion and lots of mucus.  You have probably had RSV and as an adult you would just have a yucky cold and go through a lot of Kleenex.  But on smaller children, it can cause so much inflammation and secretion that it blocks their airways and prevents them from breathing effectively.  It is most dangerous for children under 1... or kids whose immune systems are compromised, like Max. 

So Max will likely stay on the ventilator for a few days while we wait for the infection to clear up, which will take longer than normal due to his weakened immune system.  If he has a machine breathing for him, we do not have to worry about his airway getting blocked and him stopping breathing.  The two concerns while he is on the ventilator are that we manage his sedation and prevent him from getting upset and actually clamping down and blocking his vent as he did earlier today.  And that the secretions in his upper airway do not end up in his lungs causing him to get pneumonia.  So we pray that he doesn't have any further complications from the RSV and that it will just be a matter of time and patience waiting for his body to heal.  We are also really keeping a close eye on his kidney, which has done better today, and praying that it does not get damaged while he is sick and his blood pressures are lower than ideal.

Addie is still able to come out as thankfully she recieved an RSV vaccine.  She will not however be able to see Max so we will be doing separate birthday parties.  I am just so relieved I still will get to see her.  We could really use a dose of Addie sunshine.

Thank you all for praying for Max and for the continued love and support.  The texts and emails and Facebook comments have really encouraged me today.  If you shared this link asking for prayer for Max for his surgery, please feel free to share again as he needs prayer very much right now. I will mainly be updating Facebook but will try to keep this blog updated as I have new news also.

1 comment:

Erin Adelaide said...

Dear Stephanie,
You don't know me but I'm a friend of Lindsay Lane (Houston, Texas). She shares your blog on Face book. I was following your blog post for a while, and then wasn't able to, but now caught up as of today. I am over joyed to read of the improvements of both your angels as well as you and your Husband Al. Reading your stories truly alters my perception of life events and allows me to humbly consider myself truly blessed even amongst hardships I face from time to time. Also, your stories has helped me become in tune with my spiritual side again. When I pray, I pray for your family. I really do hope and pray for all positive occurrences to happen for your entire family. All of you are blessed. Money is really tight for our small family so I feel ashamed I am not able to donate. This is why I pray very hard for all of you. In hopes that can help even more than green paper.

Love and Light,

Erin A. Seago, NRCMA, R.T.