Having a rough go of it...

Jacob has had a very rough few days and we appreciate any prayers sent his way. He has been having a very difficult time balancing sedation. Yesterday he was waking up every hour and thrashing. It took two nurses and myself to hold him down. His arms are tied to the bed for his own protection. They were upping his doses of meds every hour but he continued to need rescue meds to knock him out.

Two of the times he got the rescue meds he desatted down very low and needed to be bagged to be brought back. One time his oxygen levels went down to the 30s but came back up pretty quickly. The second time he went down to the 40s and it took a little longer. His lips drained of color before the machine picked up on his desatting. I told the nurse he looked purple and then right after I said that he started going down. I was very scared because the color just drained from him before my eyes.

As the day went on the more worried I got. His eyelids got very swollen and his color didn't return to his lips. I told the attending that I was very uncomfortable with the direction he was headed and wanted cardiology to come look at him. They had been consulted by phone but I wanted someone to physically see him. Most of the day he was breathing over the vent and he was set to 40% oxygen vent setting, his sats were stable in the 80s which is great for him. As the day went on the vent settings increased and he continued to go down in SATs. At one point he was set to 100% oxygen on the vent and still satting in the 70s. I was very uneasy and cardiology was called to come take a look.

He is in the PICU not the CICU because it is not a cardiac issue so he needs to be down here where they are used to dealing with airway issues. Last night around 2am we had about 10 people around his bedside for about 2 hours. The PICU attending and fellows, respiratory and the cardiac fellow all watched him to make sure that he was coming back to a safe place.

He had a chest x-ray which showed that the lobe of his right lung was partially collapsed. They agreed to give him a dose of lasix to help with his puffiness in his face. They also paralyzed him and moved the ventilator up 1cm to allow for better airflow to the right lung. He was also given aggressive PT to try and break up some of the junk in his lung. The doctors decided to go down on his sedation because although it put him in a more comfortable place it was affecting his blood pressure and vent settings. He was too sedated.  It has become a very fine line and a balancing act between keeping him comfortable so he does not wake up and thrash around but also keeping his pressures where they need to be and not over sedating him. Unfortunately it will be a week of this back and forth. We just need to get him through this week.

I had not slept in about 3 days so my mom and Andy kicked me out and had me go to the Ronald McDonald house for some rest. I did and was able to get about 3 hours and a SHOWER! When I got back Andy met me by the elevators and told me that he desatted again to the 40s. This time it took them at least 2 minutes of bagging and changing the vent settings to get him back up to where he needs to be. His baseline o2 is 83 so 40s is way too low, scary low.

I knew this would be a hard surgery but I really didn't expect him to have this hard of a time with the sedation. I figured he would be knocked out all week and be able to heal. It is scary when he thrashes around because he can damage the airway that they just operated on. Watching the color drain from your babies face and not be able to help him is not something any parent should have to see especially over and over again. But he is here, he is fighting and I have faith that he will get through this and things will get easier.

BEADS OF COURAGE

On a more positive note, midst the chaos yesterday I was able to work with Child Life and get Jacob's Beads of Courage started. Beads of Courage is a charity that provides beads to children with serious illness. Each bead represents a different surgery, procedure, test, needle stick or milestone. It is to help children with anxiety and give them something to look forward to and cherish. The beads tell their story. Here are some pictures of Jacob's beads so far. I am sure I missed some but I am amazed at how much our little angel has been through so far in his short little life. I am beyond proud of my warrior.

Aidan has been amazing through all of this and is so sweet to his brother. Every day he leaves and says "Bye brother, feel better I love you!" I am so amazed by both of my boys. They are perfect and I am so blessed.

Please continue to pray for my beautiful little heart warrior.