Long day for Gibson

Saturday: Things were pretty calm all day Saturday.  They were able to wean a few more things on his ventilator.  We are getting closer to thinking about changing to a different type of breathing system.  However, we did hear today that they are concerned about his pulmonary artery going to his left side. They will check if there is an artery formed and whether or not there is great blood flow getting to his left lung. If there isn’t blood flow getting to his lung they will have to remove it to avoid any infection.  It will continue to expand, but without any blood flow it won’t be oxygenating anything so it’ll be taking air away that should be going to the right side.  They will do a test for that on Monday to see what they need to do.  We just want to get the weekend over with so Dr. Null is here.  He knows Gibson the best and knows when he’s ready for change and the doctor on for the weekend doesn’t understand how sensitive Gibson is to change. Dr. Null is brilliant and helped invent the oscillator part of the ventilator that helps get rid of CO2. No one knows pulmonary hypertension like he does. We’re so lucky to have him as our Dr. and friend. He’s great and hugs us every day. He’ll even call in the middle of the night when he’s not on to check on our little man.

Kaydi read books to Gibson today and he loved it.  He was moving his arms all over the place and looking at the books and back at Kaydi.  It was so cute!!!

Sunday: Today the weekend doctor made some extreme changes to his ventilator.  Gibson tolerated it ok.  She just doesn’t understand Dr. Null’s thinking behind everything and wanted to speed the process up.  We got upset but Gibson did well with the changes that were made.  Gibson did have a little episode this afternoon.  We need his head to be adjusted every few hours to move some of the edema out and help prevent bed sores.  Gibson just doesn’t really like changing positions so he started getting nervous and started to breath over the ventilator.  When he does this his sats go way down and he gets really pale and blue.  Once he is turned back to his left side his sats come right back up and he mellows back out.  We both have been in the room when he does this and it is one of the scariest things to watch as a parent.  Seeing your kid change colors and struggling and knowing you can’t do a single thing is so hard. 

Other than that things went well and we’ll wait till tomorrow to see what all needs to happen.  They are worried about Gibson’s intestine having some sort of obstruction.  They are getting a lot of bile out when they suction his stomach and we haven’t had a bowel movement in a few days.  They are thinking that his intestine has developed some scar tissue from being moved around so much and is blocking anything from flowing through.  We will learn more tomorrow and what will need to happen with his lung and intestine.

Kaydi started to read to Gibson again today and soon as she started he just closed his eyes and acted like he was sleeping.  It was so funny.  Once she put the book down he would open one eye to see what was going on.  He’s already picking on his mom. Look out mom!

Today:  8:00am Gibson needed his ET tube that goes into his mouth that breaths for him changed out so they wanted to see how he would do on a High Frequency C-pap.  They tried putting him on the C-pap but he didn’t do well so they re-intubated him and he is back on the ventilator that we have been on.  Not a big deal they just wanted to see how he would react to it.  He just needs more time. We’ll get there.

12:30 The concern with blood flow to his left lung has been checked and the pulmonary artery is developed and there is good blood flow getting to his left lung. YAY!  Dr. Null said this means that his left lung will continue to grow and develop and will be able to help out some with the oxygenating. 

Next concern is his intestine.  What is blocking fluid from moving through?  Dr Null has scheduled an Upper GI test to be done.  They put some fluid down through his stomach and watch it move through to see where the blocking is happening.  There are several different options to solve this problem.  If there is scar tissue formed causing the blockage they will have to do surgery to cut that portion out.  They are going to transport Gibson downstairs for the testing and while they are down there they are going to do a CT to see how bad his bleeding was in his brain.  Appointments are set to start at 3:00 to look at his brain bleed and blockage in his intestine. 

Results are back from the CT and Upper GI test.  The Upper GI showed that the Anderson Tube that suctions his stomach was actually down into his small intestine.  The reason for so much bile coming up is because that tube was right where bile is produced in his intestine.  They are hoping that was the problem but will need to wait for the barium to pass through his digestive tract completely.  They will monitor this through the night with x-rays and if everything passes though ok without any problem  and the output is clearer in the Anderson tube, they will put a feeding tube back in and start feeding in the next few days.  The CT was also good.  They confirmed that there was a bleed in his Cerebellum and in his Ventricles.  Nothing too serious was found, so they will continue to watch the swelling in his Ventricles.  The Cerebellum is a part of your brain that is located at the back of your head and at the top of your spine.  It controls coordination and balance.  How it will effect Gibson is unknown until we reach that point in his life. The bleed however only occurred on one side of the Cerebellum so there could be no long-term effects.

Very busy day today with a lot going on for poor Gibson, he did well through all the tests. Gibson is such a trooper and is doing great through this all.  He makes us keep fighting and stay happy and upbeat.  Every time his little eyes look at you, you can’t help but get the chills and want to pick him up and cuddle him.  Our nurse put a little disco ball above his bed and he loves it!! He can hardly take his eyes off to look at us. He is so, so cute!!

Again, thank you for all the support, phone calls, texts, comments, FB messages/posts, cards, money, food, thoughts, prayers, fasts, and love!! The three of us appreciate it all so much!