Sept 26, 2017
Last night we ended up taking Tyson to the ER at OU Children's in OKC because he has been sick for about 5 days and he just kept getting worse and not better. His doctor was also concerned because he was starting to retain water while having diarrhea. They ended up getting him on oxygen because his levels were low. They then admitted him to the PICU around 3 AM because he wasn't handing a nasal cannula well enough. They figured out last night and this morning that he has viral pneumonia and the flu. He also had low sodium levels and his fever has been a little abnormal which we believe is from his brain damage with the bacterial meningitis. He has been sleeping almost all day unless the nurses are bugging him but all in all we are so grateful for the local children's hospital along with the advances in medicine which will help him heal. We are also grateful that his seizures have decreased while being sick instead of increasing. We also appreciate our big support system of family and friends and would appreciate any prayers you are willing to offer. I will do my best to post updates. Thank you!
Sept 27, 2017
Brandi and Cameron asked me to post an update on our little Tyson Coon. All three of them had a pretty rough night last night. Yesterday they found out that he has viral pneumonia caused by the same virus as croup but his has settled in his lungs and not as much in his throat. Last night Tyson's oxygen levels would not stabilize and they kept dropping into the low 80's. Doctors, residents and nurses worked on him for several hours trying to clear his lungs, make him cough and stabilize his vitals but it just wasn't working well and it made for a scary and largely sleepless night for all of them. Late this morning they made the decision to intubate him so he could be better served and stabilized. The intubation will allow him to have his oxygen levels stable and allow him to rest and heal. We are hoping that during the next 48 to 72 hours he will begin to improve as the virus runs its course. As the superhero Grandma that she is, Donna Coon (Cameron's wonderful Mom) affectionately known as Nonna to Tyson is flying in to OK City to give support to Brandi and Cam. When we hear more news we will update everyone. Thank you for your love, calls, texts, support, prayers, fasting and concern! It is felt deeply at this time!
If you didn't get a chance to read Tyson's update from today it is in the comments section of my last post but a lot has happened today!
Thankfully we are starting to have good news! His blood pressure levels and lab results are starting to stabilize and become more normal they are getting him to a good level of Fentinal for his comfort level. The x ray they took this afternoon looks much better then the ones he has had the last few days! These are all such great signs! Cameron is coming to the hospital from sleeping this afternoon and I think I am going to try to go home and sleep too because I am pulling an almost 48 hour. Thank you for all of the service, prayers fasting and positive thoughts and words that have been sent or way. We are truly so blessed!
Sept 28, 2017
Tyson stayed stable today and his numbers improved slowly through out the day. Unfortunately his x ray looks a little worse tonight because they are struggling with getting the mucus out of his lungs even with a lot of breathing treatments. His Nonna is staying with him tonight while Cam and I get some sleep. If we can have prayers specifically for his lungs to help the move the mucus and plugs out and function properly I think that would be helpful. I truly believe that the power of specific prayer is incredible.
Sept 29, 2017
I know these numbers don't mean much to most people but this right here is an answer to so many prayers! Little man had an x ray earlier this morning that was slightly better then yesterday. Which was progress and we will take any progress we can get. Through out the day he was able to come down on his oxygen levels and pressures while keeping his stats up which is amazing! And then this afternoon that did another x ray that is looking better then this morning's x ray.
He still has a long way to go but I feel like we are finally on the side of this sickness where he is getting better not worse. His lungs still need to start getting more fluid out. But we will take today's progress. We are really happy about it.
Oct 1, 2017
Over the last two days Tyson has slowly been making progress. Yesterday morning his x ray looked a little better and this morning it was about the same but that is improvement from what it was on Wednesday and Thursday this past week. He was also able to come off of some blood pressure medication yesterday that he has been on since he was intubated. Over the last 24 hours they have been giving him a lasix drip to help get some of the extra fluid off of him. Overall they are happy with this progress and our hope and prayer is that they will continue to be able to week his pressures down as well as his oxygen. They have been able to bring his oxygen down to about 60% so now we will try to work on his pressures.
To give some clarification I think I finally figured out what all he has been diagnosed with. The first few days were a bit of a whirlwind and the doctors were throwing a lot of terms around. But what happened was that he came down with Paraflu which is a virus and then developed pneumonia, septic shock and ARDS (acute respitory distress). They also suspect he has some type of bacterial infection but he has been on two antibiotics since he has been here to prevent any bacterial infection from getting worse. Kids who get Paraflu don't typically get this sick but they have seen kids get worse then Tyson did as well. So there is a big range in how the body responds to the paraflu. Cameron and I have also been fighting some kind of cold or flu the last few days and we very likely could have the same thing but it is just giving us a sore throat and stuffy nose. The stress of the situation hasn't helped much either.
We have been able to watch most of #ldsconf over the last few days in our hospital room. Tyson loves when people sing so I am sure the Choirs were his favorite part. Definatly the talks about miracles and trials spoke directly to me. I am greatful I was able to bring that kind of spirit into our little room of the hospital this weekend.
We are so grateful for all of the service, meals, texts, prayers, fasts and blessings that have been given on Tyson's and our behalf. We are so grateful and blessed. Thank you!
Tyson spending time with our sweet friend Melanie, this picture means so much to us!
Oct 4, 2017
Today has been a good day for Tyson. His x ray showed improvement this morning and they have been able to ween his pressures down on his ventilator a little bit more. They have also been able to get more water off of him so he is looking more and more like himself.
Yesterday was just a hard day. His x ray looked pretty bad in the morning and even though he was showing good signs with his vitals the doctors put everything on hold and also increased his lung therapies. The most true statement I heard last time he was in the PICU was that kids generally take two steps forward and then one step back and then two steps forward and one step back until they get better. Seeing him get worse is one of the hardest things to watch and experience but we are so greatful for the overall improvements and we hang onto the hope that he will make a complete recovery. The doctors said that his septic shock has resolved which is great and they have begun taking him off of some of the medications he has been on. We are still in this for the long hall and there isn't a magic fix like I want it to be but we are getting there slowly.
Tyson has been opening his eyes more and moving around when the nurses and doctors are messing with him. He is still at a comfortable level of sedation but just a little more alert because he is starting to feel a little bit better. My favorite thing is when he gives the nurses his evil eye. He defiantly is still full of personality.
Oct 6, 2017
I wanted to give everyone an update on Tyson's condition today. He did pretty well last night but around 5 or 6 AM he started having a heart rate around 150 and his respiration (breathing) rate went up (for those who don't know a normal child's heart rate should be around 90 give or take a little.) We also figured out that he had a fever around that same time this morning. After several tests the doctors figured out that he had some bacteria markers in his lungs. They immediately put him on two wide ranging antibiotics and they will continue to look at the cultures to see what kind of bacteria grows over the next few days. They also gave him some more sedation medication because he has been waking up more and been very agitated by the breathing tube and everything they are doing to him. He is being touched, poked, moved and shaken (for lung therapy) every 30 minutes to every hour around the clock. He has needed a little extra oxygen but for the most part the doctors have been able to keep the pressure and oxygen at a pretty low level compared to where he was last week. His x ray this morning looked better then yesterday so that is promising. His doctor told us that the bacterial infection is not uncommon since he has a breathing tube and since everything he has had so far has been viral they are not surprised that a bacteria is trying to grow. Hopefully they caught it really early and can stop it before it gets much worse but that is a possibility. Through the late morning and early afternoon of today he has been pretty stable and they were able to increase his lung therapy which should help his lungs heal and help prevent the bacterial infection from getting much worse. Last week he would not have handled this level of therapy so he is making progress and even though we probably wont be able to pull his breathing tube out tomorrow like we wanted it shouldn't set him back too much. This is a video of the music therapy he had earlier this morning. It calmed him right down and he has been able to rest very peacefully since. Thanks to great music therapist and some sedation medication.
Our ward family has decided to do a fast for Tyson this Sunday and since we have so many family members and friends nation wide I wanted to reach out and invite you all to participate. We are so grateful for all of the prayers and love we have already received as we walk through another difficult hospital stay but we defiantly know we are not alone and there are so many people out there willing to help us and praying for us.
This little man is so amazing and such a fighter. He smiles even though he is having to endure so much right now. His smile made my day today. He still showing a new bacteria in his lungs which is new as of yesterday but they have him on two antibiotics and he made some small improvements today after the setbacks he had yesterday. He hasn't had a fever since yesterday morning so that is a good sign. We are sad we had this little set back but we are greatful for his overall improvement. He did get a blood transfusion this morning because some of his levels were getting a little low but he didn't have any adverse reactions so that was great. He has been very stable and we are so greatful for that and we are feeling ready for his tube to come out but the doctors are being cautious because they don't want to have to put it back in. Tonight his Daddy and I were in his room making him laugh for about 10 minutes which totally made both of our days! Hopefully we will just keep moving forward, thank you for all of the prayers, fasting and love!
Oct 12, 2017
Tyson's tube is out!! The doctors have been lowering the settings and doing a few trials with the ventilator over the past few days but this morning they finally said it was time to cut his sedation and to get the tube out! Our sweet boy was smiling through waking up and gagging/coughing before the tube came out and then after it came out he was smiling and giggling so much. Last time he was intubated he had it in for two and a half weeks and this time it was for two weeks and one day. We are happy that this time was a little bit shorter. He is still on some oxygen and pressure support but his stats are doing great and they should be able to ween most if not all of it in the next few days. We are so proud of our little man and so grateful for all of the prayers, fasting and kind words.
Oct 15, 2017
Tyson is really doing great! He is almost off of oxygen and he was moved from the PICU to the floor today. He will probably be coming home in the next few days if all continues to go well. He is so happy all of the time and flirts with all of his nurses. I am so inspired by him and his joyful attitude. I truly think that everyone can take a lesson from him by choosing to be happy even in difficult circumstances. My mom and little brother also flew in to help us a few days ago and we are so grateful. I don't know how we would be able to go through these hospitalizations without our amazing families. By the way he really does have his eyes open all of the time but these pictures were just captured at the wrong times lol.
Oct 18, 2017
Tyson is doing so great. He is off of the oxygen as of this afternoon and he has been able to maintain his oxygen levels even while sleeping which means we will most likely go home tomorrow! It is so nice to be able to see him with almost no cords and with his own clothes on! A few days ago we switched Tyson to real foods via his g tube. He has been tolerating that really well despite his medical professionals trying to convince us that formula is better for him. On Monday he did a swallow study and didn't pass so that means he can't eat food orally right now bit we kind of expected that has a possibility with how long he was intubated and not using his muscles. He will continue with speech therapy and hopefully in the next few weeks to month be able to resume eating normally. I'm so grateful for my mom and her willingness to be an advocate for Tyson when I can't be here and Tyson's dad, Cameron, has been such a trooper staying with Tyson at night. We are very ready to go home and we are happy our little buddy has made such a quick recovery considering how sick he was three weeks ago.
Oct 19, 2017
We busted him out and made it home!! Tyson is happy to have his toys, doggie and right hand back.
0 comments:
Post a Comment