I am so unbelievably tired and am heading to bed but I wanted to post a quick update about our week.
First, Happy Mother's Day to every mom out there! I hope yall had a wonderful day, relaxing and filled with love. I know for some this can be a hard day for one reason or another and I pray for you that this year the pain was not so overwhelming.
Today was a great day for me. We didn't do much, in fact it was very low key. No flowers, no cards (except one Caileigh made at my parents' church this morning), no brunch or special affairs. Just relaxation, a walk around Garden of the Gods and time enjoying my two precious children.
This past Tuesday, my mom went with my to a scheduled appointment for Braedon at Denver Children's Hospital. On the way there, we believed he was having a seizure of sorts. It was beyond frightening. We got to the hospital and they knew we were coming and were told to go straight to the ER. See, April 22nd Braedon started in with another episode of GI problems except this time they did not go away 4-5 days later. They are still happening. He vomits and has about 12 liquid stooled diapers a day.
Braedon was admitted Tuesday and they immediately performed a CT of his head and abdomen. There was nothing of extreme concern, he had an EEG performed and no seizure activity was reported but they can't rule out epilepsy. Upon talking with several doctors from many departments, countless labs had been requested, most coming from the Metabolic team. They are looking at a few very viable genetic disorders that would tie in his GI problems that he has had since birth (we now believe them to not be solely related to food allergies if at all) with the spell he had Tuesday.
--Tuesday before getting in the car I gave him a bath. He screamed for 10 minutes or so and then suddenly sat down in the corner and stared at the tub floor. He wouldn't respond to his name, my hands in front of him or toys. We took him out and he seemed to be in a daze. While putting him in the car he went very limp and we had to pull him into position and turn his head just to get him strapped in. --
We left the hospital Friday night but not before we got answers and a temporary plan on how to control his vomitting (the other could actually get worse with the medication they have him on). So far so good! We are two days into this treatment and no vomitting and very little diarrhea!!! Today he ate a little more and actually played a bit with his sister and was happy. We are hoping this treatment will work long enough to get some answers. It is not a medication that is safe long term so we need answers soon and realistic treatment plans.
Please pray for us as we step into this new season of our lives. I spent a large part of the morning researching hospitals that are leading in technology and research for metabolic and genetic testing/treatments. I have a few main locations in mind and am waiting to see what comes back from these tests to determine what steps to take next.
We were all set to move when Soapy gets a job and now we are kind of waiting; waiting to see what is wrong with Braedon and where the best treatment is for him. It is hard to wait patiently and Soapy is getting very discouraged that interviews are not coming in yet but I believe God is waiting to give us a job offer until we know what is wrong with our son. As it stands, daycare will not watch Braedon because of his constant condition of being sick; even though it isn't contagious. They don't have the time to devote or the extra person to devote to him when he is getting sick every few minutes.
Please pray for Braedon that his body would stay strong through all the waiting and testing. He has an MRI Tuesday at 1230 and they will have to sedate him (the last few times he has not done real well with sedation, his O2 sats. drop). We won't know for about a month what the genetic tests will begin to show. We were hoping to be moving to a new job, wherever that may be, at the end of this month once Caileigh is out of school. Please pray for Soapy that God would give him a calm and renew his hope in Him. Please pray for me that I would be the mother and wife I am needed to be right now. Please pray that I am not only able to care for Braedon but also to help support Caileigh, she is showing signs of anxiety from the stress and fear of what is wrong with her brother; she loves him so very much.
Thanks to everyone so far that has been praying for our family and for our son. The prayers mean so much to us. I am going to be talking about an idea I have for raising money to support our family and a charity that is very dear to my heart. The hospital trips out of town are getting very costly and I need to find a way to help offset that cost. Please don't be put off by the advertising or mention of earning money, it is truly to help our son and for that I am not sorry.
Happy Mother's Day everyone and have a blessed week!