Good day

Olivers surgery went really well. We had a really crazy weekend getting ready. Everybody in the house had a cold except for Oliver. Thank You God! We got a call Monday morning and they said, "We need you to come early, we need to do a muscle biopsy too and it has to be at HCMC by 1:00!" So we ran around the house, got Adina to school, and made it to the hospital. HCMC is Hennepin County Medical Center. They process the muscle sample and get it sent off to different labs around the country. Our neurologist pulled some large strings in order for them to do this biopsy. They were not able to do it last week at Gillette, but life always works itself out! The doc today first just took a look at his throat. He had quite a bit of Tracheomalacia, which basically means he has a floppy airway. They could have opened it by using a laser but there is no guarantee that it would eliminate the problem or that it would last long. The thought of having Oli recover from that and then possible having another surgery in a month or two did not seem right. He now has a trach and he woke up happy! He did not D-sat and other than seeming a little confused he was actually content. He had a BIG smile for daddy! Now we just wait for healing. In a few days they will do the first trach change. After about seven days he should be out of PICU and then it is training time for the fam. I have worked with trachs so I am comfortable with suctioning, changes, etc. I will still go through training with John, but I was able to "test out" of suctioning and they have let me perform as many cares as they can let me do. The nurse told John and I to both stay home and get rest as performing all of Olivers cares can be so exhausting and we could use this as a little break. We made it about 20 minutes of both being home and we couldn't take it! We can't leave Oli alone. John is staying nights with the dude, and I am there during the day. John has his own little room with a full bed so life is good! Thanks for the prayers. Oliver seemed to validate our decision by the way he woke up, which is great because it is sometimes hard to know if we have made the right decision. Life is good!

Here we go..

Oliver is having the surgery for the placement of the Trach Monday the 31st. We are happy with our decision because we see that it will be a benefit for Oliver and it will improve his quality of life. He does have some issues with his airway closing so we do a jaw thrust and he is okay. The trach will just keep the airway open. It seems as though Oliver is declining, but we don't focus on that and ask that nobody else does either. He is still Oli first, equipment last. He could plateau for years and be our dude, or things could move faster (and he would still be our dude). We don't know, just like nobody knows when their time will be. Oliver will be at Children's St. Paul in the PICU. We can't have children in for visitors and I think adults will be limited. Please call if you want to see Oli. I will do my absolute best to update the blog with how Oliver is doing. There is a chance that we would get there and they would say he is not ready for the surgery because he does have a cough. I hope not because he has had a cough for a long time. If he has a fever it is for sure off. There is also a chance that they could do a surgery to open the airway more instead of doing the trach, but eventually they would need to do a trach. We got Oli a new shirt with Popeye on it that says, "I yam what I yam!" He is such a dude. So, thats it. Here we go..

Halo

Oliver met with the ENT doctor today to go over Oliver's options about why he may be choking more often. It is a complicated condition to explain but I will do my best. We have talked a lot of Oliver dropping is oxygen saturation (D-sats). We have dealt with this for quite a while, it has become worse but we have the equipment to manage at home. He drops below 88 percent we give him high flow oxygen. The high flow doesn't work, we bag him until he is back up. We have actually had a great month. He had pneumonia at least once but we made it through fairly well. He has developed a chronic cough that is very bothersome to me because I feel that he is getting a bit weaker. The D-sats I just explained in Oli's case is Central Apnea. The part of the brain that controls breathing is just not maintaining the breathing process at all times. It is not uncommon in special kiddos. As Adina says, "Oli just forgot to breath a little bit." Now Oliver is showing signs of Obstructive Apnea as well. His throat looked okay today, but he is choking on his secretions. Up until a few weeks ago we probably would have said probably not to a trach. Over the weekend Oliver has had more difficulty with secretions and today he D-satted to 34 percent because he could not clear his throat. Feeling so helpless as your child is choking is the worst feeling in the world. I know if he had a trach I could suction him and make him comfortable. We are being held hostage by the phone. Waiting, always waiting for the doctors to call. I called Oli's doctor that is always very helpful at guiding us to make the right decision. We are hoping to go to Gillette Friday for a meeting to discuss all of the options. Oliver is awesome, he still laughs a lot. When he is laughing it is hard to think that he needs a trach. Then when we are relaxed and not expecting anything, he throws a mucous plug, drops his sats, and throws us for a loop. To explain the trach, he will have a little incision made in his neck with a little tube inserted. He will not breath through his nose and mouth but more through this tube. There are many different kinds of trachs. Oli would have the kind where some sound could still get around it so we would not completely lose his voice. Also, we could suction him much easier. Just because he has a trach does not mean he is stuck to a bed. We can still do all of the things that make Oli happy. It does not mean Oli is dying, I know some people think this. He just need a little more support. We have a lot of different feelings right now and are trying to do what is best for Oliver and our family. We feel safest in our own home lately. As soon as we step out the door, we put our walls up because we know that so many people have many different feelings about what we should do or that Oli is better off one way or another. Adina continues to be Oliver's little guard dog.

Oliver fell asleep after his appointment. John and I were naturally a bit down. Whenever news like this happens we re-grieve the whole situation. We went into Oliver's room and the sun was shining on top of his head like a little Halo. All night we listened to "Halo" by Beyonce! Tried to take a picture of the Halo. He is our little heaven sent angel that teaches us the true meaning of strength every single day.


Oli gets the giggles from the silliest things! Usually its Adina that figures out what makes him laugh.

!!Hula Hoopalooza!!

Our new year is going well so far, other than we are already sick of winter and it is only January! We have finally staffed all of Oli's hours. Starting January 24th we will have a night nurse 4 days a week and a few evening shifts. Oliver had some blood work done that of course came back with a change but of unknown significance. We are so used to that result. Because the test was basically negative, we are going ahead with a muscle biopsy, possible spinal tap, an EMG, and maybe a few other tests. I have told the doctors that this is it. No more extreme tests after this unless there is a really really good argument! We are in the planning stage as far as which doctor wants what. They are looking for any changes within the Mitochondria. We also got the results back from his eye exam he had in December and he had some cone photoreceptor dysfunction. I called the doctor to get a better explanation and she said right now it is mild. In one year we will repeat the test to see if it has gone from dysfunction to degeneration. Oliver has been moving a lot more lately, uncontrolled movement. Not sure why it is happening, doctors aren't either. He gets really mad because he cannot stop them. We have to watch his weight because with all of the extra movements he may start to drop weight. We are in the planning stages of Oli attending school next fall! What a big boy!



Sitting Pretty!


Put a sock in it! Cora's favorite thing to do is eat her sock!!


Popcorn party!! Kali Rose stayed over night and had a slumber party with Adina. They were up whispering after bedtime. It was cute because their version of a whisper is much different than an adults!


Raspberry time!


Daddy and Oli snoozing at Christmas with the Hanson's.


The sidewalk/tunnel outside of our house! I know our California relatives are incredibly jealous that they don't have this freezing winter wonderland in their front yards!! We will share! Come anytime!!


Putting out cookies for Santa.


Three cuties in their new Christmas ps's.


Adina telling Oliver all about Christmas.


We actually all made it to Christmas's eve service. Oli really enjoyed singing with the music! See video below!



Adina's snowman cookie creation with a chunk missing!


Oli helping with the camera.


Oli singing with the music at church on Christmas Eve. He also heard John's voice during the service and was talking back, loudly! We LOVE it! (even if people around us don't =)

Hula Hoopalooza!