Our faithful God is continuing to teach us more about His goodness everyday and we will absolutely share with you all what we're learning in a post later this week. For now, we are coming to ask you, our brothers and sisters in Christ, to once again cover Thatcher in prayer .... and in exchange we'll give you a quick update :)
Thatcher had a sleep study on Monday night to help provide a clearer picture as to how many of his stridors and apnea episodes are due to an actual obstruction in his airway and how many are due to his neurological state. From different articles and comments from the doctors, we were not convinced the sleep study would show much. First, Thatcher has stridors when he is putting forth effort to inhale a big breath, and the sleep study records what he is doing at rest, not when he is actively breathing deeply (well, trying to). Then, you have the doctors, who were willing to go forth with the sleep study because ENT suggested it, but seemed to be unconvinced there is really anything other than neurological or a neurological induced obstruction going on. Regardless of what shows up there is most likely nothing that they would "treat". Well, the test came and went, and Thatcher had probably one the best nights he's ever had. This would be wonderful, except during a sleep study, you kind of want episodes and stridors to be recorded! The test began with him on "room air" (breathing like you and me, with absolutely no help) and when he began to show he needed it they put him back on nasal cannula and upped his flow.... except he never did! Like a big boy, Thatcher breathed on room air all night!! (like I said, one of the best nights he's had). I think he only had a total of 3 episodes. Just to give you something to go by, he's had about 3 episodes since I started this blog entry! We were a little nervous that nothing would come from the study but prayed from the beginning that Thatcher and this test belong to God and whatever He wanted to show up/happen during the test, He would allow it to come into fruition. Well, we got word on Wednesday that the results were inconclusive due to his EEG not showing a real picture of when Thatcher was awake vs. asleep, and because his CO2 meter and saturations (measured oxygen in the body) didn't correlate. They felt it was important to REDO the 9 pm-5 am, all night, sleep study! Had we not prayed that whatever God wanted to show up in the test/results to show up, we probably would have been quite frustrated. But we declared God's sovereignty and knew there was a bigger reason as to why the test needed to be redone. Soooo Wednesday night, sweet baby Thatcher Caleb had to do ANOTHER sleep study!! We got the paper results back this afternoon! (Yes, a fast turn around, no our doctor did not come to talk about them, they will be discussed tomorrow morning during rounds) The results showed Thatcher had 11 sleep apnea episodes, 2 were due to "central" (neuro motor), 8 WERE DUE TO OBSTRUCTION, and 1 was due to a mix of both the elusive obstruction and central, alongside of 59 hypopnea episodes (lengths of shallow breathing) as well as documented stridor. The EEG portion came back abnormal. The final impressions were: a) abnormal EEG, indicating dysmaturity b) moderately severe obstructive sleep apnea. While we are blown away to see what we suspected all along, Thatcher's airway does not work properly therefore he can't inhale properly, we are cautious to read into what the results show. Obviously his neurological issues play a part in his ability to breathe or they wouldn't have found it necessary to document findings on it. Also, we have a brand new doctor starting tomorrow, and it always seems when a doctor first starts on Thatcher's case he or she is hardcore "it's all neurological" and it takes a good week to convince them that there might be something else going on as well. If we allowed ourselves to think ahead of the moment, we would be incredibly anxious about tomorrow and the results discussion as it will essentially begin to form what path we are about to take, whether it be some sort of treatment for the obstruction, or we go home with hospice on a temporary fix like nasal cannula. It really depends on what the doctors are willing to do for Thatcher, if they see a bleak prognosis or a life worth fighting for. BUT, luckily for us, we aren't simply relying on physicans, rather the Great Physican. God has proven time after time He has His hand on Thatcher's life and He's not going to stop any time soon. Before we even have the meeting, we declare victory in our Lord!! We are praising Him for the victories seen, and the victories that are yet to come. We trust our Heavenly Father and believe his sovereign will will prevail!
Please join us as we praise God and celebrate victory before it has happened. If you have never taken that leap of faith to praise God before He moves, do it!! How freeing and exhilarating it is to act on belief and not what we already know/experienced. Lord, you are good and we know your will will prevail, and we praise you for it! Also, please join us as we pray for the doctors, nurses, techs, anyone who comes into contact with Thatcher tomorrow. Pray for Thatcher's new doctor, that God will use her to fulfill His will with the test results. Pray they will find compassion as they look at our son and see a precious life not just a prognosis. Pray God begins to massage their hearts and uses them to fulfill His will for Thatcher, rather than they be obstacles that Satan uses to trip us along our journey. Pray they see something supernatural in the works when they look at our son, pray they find Christ.
Praying with you today!
ReplyDeleteLaura
Love you lil man! Praying for you constantly and praying for God's favor on you! Love you guys and Thank you for sharing!
ReplyDeletePraying for Thatcher!
ReplyDeleteWhitney and Eric,
ReplyDeleteWe are members at your church.
We had triplets that were born at 26 weeks and less than a 50% chance to live. We had almost four months in the NICU, and everyday was a emotional roller coaster. We had medical staff tell us opinions, and that are children we not live a normal life. GOD prevailed! They are three years old and have major medical issues..but when you meet them you will never know. God has a plan and trust in him. We have a son that has brain damage, and has seizures..there is hope! We were told that Dylan would not be able to walk, talk or have any quality of life. He is the smartest one of the bunch! God does miracles and the brain can heal with GOd help. Dont give up. Please call me and I will tell you our journey. We are praying for you. 832-721-7561
I forgot my name Stephanie Barnes
Delete832-721-7561
email: steph52799@yahoo.com
God is guiding you through Thatcher and his responses. Request to read all lab reports and his medical chart. The doctors and staff may be resistant to this; however it is your right and responsiblity so that you can make the best decisions on behalf of your child. Do your research and make sure you thoroughly understand every aspect of the tests, diagnosis, and recommendations. By doing this, you can best advocate for Thatcher in any conferences with new doctors and medical staff. The more informed and knowledgeable you are, the better medical care and attention Thatcher will receive.
ReplyDeleteWe are thanking our God for today and praying for tomorrow. Know that you are loved. Connie and Smokey
ReplyDeletePraise! Praying for you all. Show them your stuff baby Thatcher, you're a fighter!
ReplyDeleteWE ARE LIFTING YOU UP IN PRAYER AND THANKING GOD FOR THATCHER'S LIFE AND FOR LETTING US INTO YOUR LIVES WITH YOUR INCREDIBLE TESTIMONY! We are holding little Thatcher long-distance in our arms from Estes Park, Colorado and sending hugs to you all... love you!
ReplyDeleteThat's amazing! You don't know us but we are friends of the Potellas and the Welchs. Our Son is three and he was born with Spina Bifida and an unrelated agenisis of the cerebellum and pons (like not there, at all). His sleep study was so terrible and sounded like yours. They were talking trach and admitted us after our sleep study. He was 1 at the time and I had been noticing his apnea at night. God was faithful to give him breath even when we didn't know he needed it. Long story short.... he shouldn't be able to eat or breath or do a lot of things because of the parts of his brain that are missing. But, he does! He's three now, he's feeding himself (mostly) finger foods, he sleeps with canula (he used a bipap for about a year) and he's getting stronger every day. Our journey is slower, but God is faithful, our little guy (and his little brother) are healthy, and we are grateful for our journey. Thank you for sharing yours!
ReplyDeletemacdillfamily.blogspot.com
I go to Crossroads, and I wanted to let you know that you are on my family prayer list (It is in the bathroom, which is weird, but it is a captive audience...). We are lifting your family up to the Father daily. I wish I could send you energy, rest, and hope in a bottle. God is faithfull to ALL generations. Hang in there!
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