Sorry for the delay in update after Thatcher’s bronchoscopy. We updated facebook with a quick blurb.. but forgot about our nonfacebook friends here in blogland, sorry! It’s been a rough couple of days, not necessarily physically but spiritually. We’ll get to that, let’s go back and talk about Thatcher’s procedure on Wednesday.
We were waiting outside the surgery area when the doors opened to the anastheiologist and transport nurse wheeling Thatcher in his transport box by. We quickly ran in and they said “okay, he’s done, let’s go. What’d the dr. say?” To which we replied “we have yet to speak to the dr.” so the anastheiologist ran to get the dr. and the transport nurse said she was going to take Thatcher upstairs and we could meet her up there. We are so glad we got to see him before we spoke with the doctors. We got to see that he was breathing on his own, albeit with some violent seizure activity. That way we could focus on what the doctors were saying and not worrying about his outcome, BUT since it was clear they didn’t do anything invasive it meant what we were fearing, tracheomalacia. The doctors rushed out, apparently it was a crazy ENT surgery day, and spurted out some information. We have to admit, the attending ENT speaks in broken English and is quite difficult to understand when he is attempting to explain about areas of medicine/anatomy that parents are not too familiar with. He quickly stated that three things were found: his tongue and something about falling back on his airway, his laryngomalacia which is mild, and Thatcher has moderiate to severe tracheomalacia. The back of his trach collapses up to the front therefore blocking any air from getting through. They claimed they saw multiple “central” apnec episodes (Thathcer stopped breathing for an unknown reason meaning his brain simply told him to stop breathing). He didn’t recommended any sort of surgery, what he recommended was CPAP, a machine that provides air pressure to be forced down his airway to help keep it open by a nose piece with prongs that insert into the nose to create a seal. It is kept in place by head gear. He said as most babies grow the cartilige around the trach ossifies therefore the trach is not as floppy, he thinks this might be the case for Thathcer. I asked him considering Thatcher’s brain atrophy is a main contributor to his low tone, or floppiness, does he really believe Thatcher will be a part of the group that grows out of it. He responded that he cannot attest to the neurological side, but most grow out of it, so yes, he believes Thathcer will grow out of it. This was not the news we were praying for nor wanted to hear at all. The rest of the day was spent trying to get Thatcher to calm down. He was seizing pretty violently which we expected considering the stress from getting pulled off his vapotherm (nasal cannula), the transport to and from surgery and not to mention a traumatic procedure.
Before the bronchoscopy we were told ENT was going to take pictures and videos of Thatcher’s airway, form a plan then come and explain what is going on/what they are going to do with the visual support. Well, by the end of the day that never happened so we requested to meet with them on Thursday with their pictures so we could understand what is really going on. The ENT resident showed up on Thursday with 2 pictures… one which shows Thatcher’s trach open looking down into the bronchial tubes, and the other shows it completely closed. So it turns out Thatcher didn’t do as well during the procedure as we thought. The ENT resident explained that they would get the probe down into the tracheal area, get in a good spot to take pictures then Thatcher would arch his back and stop breathing. They would then have to pull out and the antestialologist would have to bag him to bring his oxygenation level back up, and this cycle happened 5 or 6 times til finally the attending ENT gave up. These were the “central” episodes he was talking about on Wednesday, which we know was Thatcher seizing (the same type of seizures he was having the rest of Wednesday; he would twitch for a while, he would throw his head back then the rest of his body would arch and go rigid) not some random unknown message his brain was telling his body to stop breathing. Anyways, he explained Thatcher’s obstruction was three-fold.
- Tracheomalacia; His entire trach is floppy, barely any cartilage so it sits like a cylinder, supposed to sit open like a circle, and the back of the trach contracts up to the front which stops Thatcher from being able to gasp when he is trying to come back from any apnic episodes and causes stridors when his head is in the wrong spot (which is pretty much anything other than midline). There is a cartilage graph they can do, but not for Thatcher because it’s his entire trach. Because tracheomalacia or floppy trachs is something most grow out of, they don’t recommend a tracheostomy.
- Laryngomalacia; his is the shape of the greek letter, omega, which causes a partial obstuction allowing less air to flow through during inhalation resulting in labored breathing and stridors. They could go in and take off tiny portions of the epiglottis skin to open the airway back up. His is considered mild, therefore they don’t recommend doing anything for it.
- His tongue sometimes falls back and occludes his airway. Usually, they would set the jaw a little bit more forward but because it is not constant they do not recommend doing anything about it. His recommendation was not to let Thathcer lay on his back….
So for the past two days we’ve REALLY been struggling. It was the first time we both have really let our anger, confusion and frustration take over. This is a paraphrase/conglomeration of our many prayers (or rants) from Thursday:
“What are you doing?!?! We come praising you in obedience every day and where has it led us? To yet another dead end! I prayed you would provide peace if we were to allow Tahtcher to go through an invasive procedure which I received on Tuesday, but what came of that procedure, NOTHING!! We were told CPAP and not laying Thatcher on his back are our options. Thathcer can’t stand CPAP, it makes him miserable. The mask makes his face swell, the nose piece hurts his nose, the pressure pushes air into his tummy forcing him to have more reflux and in turn have more apnec episodes. It usually takes up to 2 years for babies to grow out of tracheomalacia. Is it really your will for him to be miserable for 2 years, never going outside, a prisioner of his own home, going as far as the tubes allow him to go? Only being able to go anywhere by ambulance, which means home and doctors appointments. If he can’t be on his back that means he’ll never get to sit in his bouncer, swing, boppy, carseat, sling, baby bjorn. He’ll never be able to be held like a normal baby! We can’t even hold him laying on us for very long before he begins to stridor. Is this really why you set Thatcher aside?!?!? Simply to rot in a bed on his side because he can’t lay on his back, or at an angle because his tongue falls back. He doesn’t have the muscle tone to sit, his body just collapses in on itself. Yes, you are using him to bring you glory. No, I cannot deny you have had your hand on his life since before conception. Why does it feel like you have forsaken him now?!?! ENT was our last option. Why did you let him go through that procedure just for them to do nothing?!? Is it really your will for Thatcher to struggle for breath every hour of every day?!? You can heal him, DO IT!!! You can give him breath, you can allow him to breath with ease, you can strengthen his neck. I know you are sovereign and all mighty, please do something!!! You have the ability to use Thathcer in any situation to bring you glory. Use him in another way, not through pain and struggle to cling onto life. Lord, Thathcer is your precious servant, he’s just a helpless baby!! Be merciful, heal him. You have placed in my arms and heart to love him and I can’t watch him be in pain anymore. He can’t breathe, his seizures are growing more evident again… you can fix all of it. Please Lord, do it!! You are making it evident you are not going to heal him through medicine, we hit a dead end with every turn. So do it in a supernatural way, use the power of the Holy Spirit!!! I don’t understand what you are doing and it makes me so angry!! Why are you allowing your precious child to struggle for life every hour… why would you do that to your child?!? He is just a baby and we are tired. Please be gentle with us. You say you will not allow us to endure more than we can handle… we have met our max. Please don’t allow any more to pass through your fingers. We are so tired, and he is hurting, Please God be gentle with us. We have no where else to run to, no one else to look to so show us what you would have us do, but please, oh God, be gentle!”
Well, this morning I was mindlessly flipping through facebook, a friend’s scrpiture stopped me in my tracks.
"Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you." Matthew 7:7
This was my message I sent to her:
Thank you for posting scripture on Facebook. God has used them to speak to me in the past but today's was imperative for this journey we're on. Thank you for being tender to God's daily callings to you. I have REALLY been struggling the past 2 days with where God is leading us and why he is allowing Thatcher to lay in pain and struggle every day while we hit dead end after dead end with the drs. On Tuesday, after ENT came out and said "we found 3 moderate to severe obstructions but none of them are severe enough for us to do anything about" I was done. I was (still am) angry, discouraged, ready to go turn on a tv and hide under the covers in my bed. Scripture just made me angrier, people's encouragements made me want to scream. All the while, I knew that even though I’m angry and it doesn't make sense, I need to be obedient. That was the constant whisper I felt for the past 2 days, but I wouldn't get past my stubbornness to listen. Last night, I told God I needed help I can't get past my stubbornness on my own, I'm too tired. I prayed that He would be gentle on us while continuing to prune us for His glory. While I was allowing myself to mindlessly flip through Facebook newsfeed I stopped on your status update 'Keep on asking and it will be given you; keep on seeking and you will find; keep on knocking [reverently] and [the door] will be opened to you.' (Matthew 7:7 AMP). He has not forsaken us, He is not simply leaving Thatcher to rot in a bed. We can't see what He has for us but He does command us to keep seeking him and keep asking and He will answer us, it will be given to us, we WILL find HIM. Thank you for allowing yourself to be used by God to give me a good push on this journey He has all three of us on. I'll never be able to repay you for being obedient and stopping me from going down a dangerous path that not only destroys my future but the future of my family and my child! Thank you!!
Thank you, Lord, for who you are and what you are doing. Thank you for the journey we are on. Thank you for the truth that the end of this journey will be for Your glory and our good. You have answered our prayers and met our needs every day, yet we say “why haven’t you answered our ‘big prayers’?”, and we begin to doubt that you ever will. We forget what you’ve already done, and where you have brought us from. That is a lie, and we proclaim that, even now, that is a lie that we will not fall victim to anymore. Protect us from this lie, God. We have no reason to believe that you don’t hear us, and no reason to believe that you won’t answer, in fact, Lord, by your very nature, you hear us, and you hurt with us. You will answer our prayers, even our big ones. It will be in your time, and it will be according to your will, but we know that your will is good and perfect, and we know that your ways are higher and your thoughts are higher and we trust, Lord, that you are working for Your glory and our good, and that is reason for praise. Thank you, Lord that we know where this journey ends, and where it ends is so good. That is the hope we hold on to. Father, we are tired, this journey has been hard, and we need you now. Please hasten your answer, please be quick to respond, and God, please be gentle with us as you teach us and mold us and shape our family. As we always do, God, we lift Thatcher up to you, we ask for healing. Complete healing, Father. Let the pain from the reflux subside, calm his stomach down. Open and strengthen his windpipe, allow him to breathe with ease. Be his breath of life. Heal his brain, allow it to communicate with the rest of his body effectively, allow there to be no confusion, allow there to be no seizures. Cast out the seizures that so often torment him. Lord, by the power of your Holy Spirit that lives within us, grant us the power to be your healing hands. Use us. We trust you, Father, Thatcher is your child, and we thank you for the blessing of our son. We know that you are in control, and we know that you are able. Lord, heal him. Be glorified through Thatcher, be lifted high and praised across the world, in all the nations. Thank you for using Thatcher to be glorified, Thank you for answering our prayers. Grant us patience, be gentle. We love you, Lord.