This past Tuesday was such a long day! Jackson had an MRI at 8 AM at DeVos Children's Hospital. Tests for Jackson are getting to be harder and harder because he has developed a huge fear of anyone wearing a lab coat or in uniform. He also freaks out anytime anyone lays him on the paper covered examining tables. I felt so sorry for him when they had to put an IV in him and when he screamed the entire time they gave him the oral sedation medication. It broke my heart when he would just look at me as if to say "why are you letting them do this to me." Jackson did well during the MRI, but he did wake up once so they had to give him more medication. After he came back from MRI I mention to the nurse that he felt really warm. She said that it was probably just related to the medication and being in the MRI and that he was doing fine. Next, we had to head to the neurosurgeons office for an appointment and get the results of the MRI. However, the neurosurgeon ended up being in surgery so Jackson and I had two hours to wait. We were both so tired and just wanted to go home, but I did not want to make the trek to GR later that week so we just waited. Finally we met with Dr Skarli and he basically told us what I was expecting, but did not want to hear. Jackson's Chiari malformation did not improve with the placement of the shunt. A chiari malformation is in the brain where pressure causes the cerebellar tonsils herniate downwards through the foramen magnum (this probably does not make any sense to most of you). Anyway this can cause serious problems if it gets worse. So sometime in the next few months Jackson will need to have decompression surgery. This surgery consists of removing the necrotic cerebellar tonsils, cleaning out the Dura, and performing a laminectomy (removing the top vertebrae to allow for more space). Obviously this is not something that Eric and I wanted to hear, but we knew that there was a huge possibility that Jackson would need this surgery. Before surgery Jackson is also going to have a MRI of the spine to see if the chiari is causing any fluid pockets (a syrinx) to form in the spine and to check if Jackson has a tethered spinal cord. Therefore if his spinal cord is connected at the bottom they can also take care of this problem and correct it ("clip it") during the surgery.
Finally at almost 4:00 Jackson and I were back on the road to Holland to pick up Annika. I think that I cried almost the entire way. There are times when it is easy to say "this is so unfair" and "how can God be in control of this?" Just recently though I read a devotion that really hit home to me that said "God's not only in control; He's right here beside you weeping with you." God is not just saying "Sherry just deal with this." But he is going through all of this with us, and he is crying with us when we cry. Jackson is not a burden to Eric and I, but our precious gift from God.
Well our day did not end there. When we finally did get home I picked Jackson up out of his car seat and he was so hot. I checked his temp and it was 103 degrees. I immediately gave him tylenol and called his pediatrician who told us to bring him in. I then got to spend the next five hours in the ER where they diagnosed Jackson with pneumonia. Jackson and I finally arrived home at midnight after an exhausting day. Jackson is now doing much better and today is actually acting like his normal happy self. A huge thank you for all of your prayers, they were definitely felt. "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:34 (The Message)
Our prayers are with Jackson and your family while you continue through the process of Jackson's treatment procedures. Please let me know if I can help in any way with Annika while this goes on.
ReplyDeleteThoughts and prayers are always with you guys. Your strength is amazing. Please know that we are here to help whenever needed for anything.
ReplyDeleteHi guys - we are thinking about you and sending prayers and hugs your way. It's amazing the strength you can draw when you need it. Thank you so much for keeping us posted on what is going on with little Jackson and the rest of you.
ReplyDeleteOh Sherry, I held you in my prayers all day long that day too and we will continue to do so. You are such an amazing mother and handle all of the challenges that come your way with so much grace. I am so thankful Jackson is feeling better and can not wait to see you and your family again soon! I am excited to listen to your little guy babble! Love you!
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