Yesterday Zac and I were on our way up to Primary Children's Rehab of Ogden for physical therapy, and on the way Zac started to cough, (He doesn't have a lot of power behind his cough.) Up comes some mucus and it must have gotten caught in his throat and closed off his airway because he stopped breathing and his lips started to turn blue. I of course pulled over to the side of the road, jumped out of the car and went to assist him in the back. Well, he got it cleared and I realized that I was helpless to do anything for him. I tried to remember back to those 1st Aid classes I had taken. And when someone is choking on food, you insert your finger inside and try to clear the airway, mucus isn't solid like food. That wouldn't work. After I returned home Brett advised me to pull him out of his car seat and turn him face down and see if gravity would help. Who knows, I hope I never have to find out. Anyways, I get back in the car and away we go for his appointment, I keep looking in my rear view mirror to watch him and he is acting really off, his eyes keep closing and his head is more floppy than usual, and his color is off and his breathing is abnormal. But then just as we were pulling into the parking lot the coughing/choking/not breathing happens again. At this time I decide to drive straight to the ER, since we are only a couple blocks away. I get there and he seems fine, his STATS are normal. We meet with the ER Dr. and I have to educate him on Zac's condition, which is hard for me to do without being an emotional wreck. Then he asks me what I want him to do... That was frustrating because I do not have any sort of medical knowledge. So I ask if he will look at his lungs. I don't know??? So they do an X-ray where they strap him inside a tube looking thing. This was our first encounter with this equipment, it was miserable to watch, and miserable for him, but very effective. The last time he had X-rays was at Primary Children's Hospital, and they didn't use anything like that, we had to hold him down and keep him still, they had to keep trying to get it right, but yesterday, the tech got it done in one shot. Zac does have the beginnings of a virus infection in his lungs which caused the mucus. We have a suction machine coming in the morning to help with this.
With this eventful, scary morning I realized that I am still very far away emotionally and mentally for him to die. I just kept thinking, no, no, no, they said 3 years old, he's not even 2 yet. I am not ready for this... Now, I don't know if you can ever really be ready to lose your baby, but I know that yesterday I was defiantly not ready. Glad he came through the victor!
After spending the morning at McKay Dee Hospital's ER, we went straight down to Primary Children's Hospital and first met with the Palliative Care Group called Rainbow Kids. There again we have to educate them about his condition, but this time I let Brett be the voice and I tried not to listen. This group has a pediatrician, social worker, chaplain, 2 nurse practitioners, and a few more people that I can't remember. We talked about SSI, Medicaid and Hospice. They want to be part of the team, they help find resources, and will attend appointments with us, and when Zac gets admitted to the hospital they will visit us and be involved.
Our next appointment at Primary's was at the Dysphasia Clinic where we met with a GI Dr and a Nutritionist. Zac is loosing weight, he is down to 22 lbs. and 30 inches in length. Which in comparison to others his age, he is 5% for weight and 0% for height. We are going to have a NG tube placed, Brett and I will both learn how to insert and remove this from his nose. They think we should tape it to his face, but knowing Zac, I don't think that will fly. They also said we can see how the day goes and insert it for a feeding if he didn't eat enough that day, then we would remove it. We will do this next week, this will require him to be admitted to Primary Children's and stay over night. This NG-tube is a temporary option for him. We will have the G-tube placed directly to his stomach in the middle of September. Since the G-tube takes about 8 weeks to heal, we are waiting until after our beach vacation.
Brett and I are so grateful for the goodness in people, since we sold our house in 3 weeks, and are moving into a rental house that was trashed by our last tenants, we have had so many people from our ward, family, and friends come to help us with the house. I knew we couldn't do it alone on the short time frame that we were under. But people are amazing and gracious to come over and help. We have also had our Ward (church group) bring in meals, and help with the boys. There is also many of them who have participated in Zac's fundraisers. We are sad to be moving out of such a great Ward and neighborhood. I will remember and always be grateful for your kindness. I have learned so much from your example.
My co-workers aka friends have really out done themselves, they arranged 3 fundraisers and a drawing, (raffle). Several of them worked behind the scenes to pick up donated items, and ask local businesses for items for the drawing. I have really learned humility and friendship from them. I feel my life is normal being around you at work, that is a blessing.
Now our family, we couldn't do this without you. All of the support and help from both Brett and my parents and siblings, I will love you forever. I am glad we have each other. You are our emotional buffers, your loss is the same as ours. We need each other in these hard times, and I am grateful for each of you. P.S I really miss my little brothers Ben and Jake. I could really use them right now. :(
Thank you will never be enough, but it is what I have. I have the rest of my life to pay it forward. Just know that we are grateful for your support! I know there are many who don't live close by, but that are praying and encouraging us from a distance, I am grateful for you as well. Please continue to pray because I know it is helping.
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