Monday night, the doctor came in, at 8:30 pm. We had already settled in for the night, ordered dinner from the cafeteria and were getting Braedon ready to sleep. She came in and said we were free to go home, as long as Breadon stays on oxygen and gets regular check ups on his oxygen %. We were tempted to wait until the next morning to leave but there was a snow storm already coming in and was supposed to snow through the morning. I didn't not want to be driving home on bad roads so we quickly rushed to pack everything up and at 10:30 walked in the front door to our home.
Caileigh was already asleep and despite trying to wake her she would not. So Braedon gave his sister a kiss on the cheek and that was that. He was so excited to see her, his dogs and toys. He got too excited and we had to settle him down and up the oxygen for a bit. He rested so well Monday night, slept the entire thing!
We had the home care company come out and bring us oxygen and a nebulizer. He does better with the inhaler (struggling and such) but the results aren't as good so we are going to try and transition him to the neb. instead.
Today he has been very happy and wanting to play more. He is getting worked up easily and worn out quickly. Little steps, one at a time....just try telling that to an active almost 15 month old (tomorrow! he is growing so incredibly fast).
Thursday he has an appointment to check his oxygen and to meet with his primary doc, Dr L. He is going to help me with working out a plan for weaning off the steroids and the oxygen, if he's ready. We are going to talk about Braedon's adnoids and tonsels...the doc @Childrens thinks they may be swollen (too large naturally) and that could be causing some of the breathing problems, along with when he gets sick they cause the opening in his nasal passages to be too swollen for them to drain and for the colds to clear up.
Once the colds get bad then he goes into an asthma attack showing us how he reacts like last week.
On top of the asthma and cold stuff, he was also dealing with a typical food allergy attack too, All things combined caused him to get extremely dehydrated and having difficulty breathing. We are scheduled to see a specialist Dr F at Children's in Denver to persue some GI issues, including EE and EG. These two conditions are eosenophillic diseases that have no cure but can be medically controled along with a diet. They can come across as food allergy reactions but all of his allergy testings are inconclusive. These diseases could bring all of his GI issues to rest. Or maybe not. Either way, GOD is in control and I am remaining vigilant in my prayers and continued reliance on Him.
It is hard as a parent to do this. As a parent all I want is to make him better. RIGHT NOW! You hurt to see your children hurt and hurt evenmore when you cannot immediately make it better for them. This is a process though and God is challenging me to grow in my ability to rely on Him, give Him the control to care for my child and to increase my ability to be patient and be an example in all of these to my family but importantly to my children. I pray every day that Caileigh would see what her brother is going through and realize how important life is and how precious her ability to love and have a family is. I pray that she would learn from me as I FROG (fully rely on God). This is so important to me.
So for now, I am praising my God for bringing Braedon home. Despite a bit of oxygen and some meds, he is happy and getting healthy. I am so thankful that it sin't anything more severe. Sitting in the hospital hearing children crying and parents crying and code alarms going off on the floor was scary and something I never want to directly experience. I am so thankful for my two beautiful children that I have here on earth and looking forward to the day when I get to meet my children in Heaven.
Thank you for any of you that have prayed for my son and for our family.
I am SO glad you are home. Staying in a hospital is NOT fun. I will pray for complete healing and that you will be able to treat the GI issues.
ReplyDeleteMonica
It was so nice to meet you and your husband this weekend Christy! Hope to get to know you better in the future. Wish my husband could have been there to meet you all as well, but se la vi. Chat soon:).
ReplyDeleteSarah