March 8, 2012 – The twins are sick! Both of them have fevers and are coughing a ton!
March 11, 2012 – Still both very sick and haven’t slept much since Thursday night. Fevers are very high – going to the doctor today.
March 12, 2012 – positive for the Flu! Yuck! Still giving them Advil and hoping they feel better soon!
March 13, 2012 – I came home from work and Max looks a lot worse. He is lethargic, not talking much and feels super hot to the touch. I checked his temperature and it says 105 (and he is taking Advil). First thought is that the thermometer most be broken. We look for new batteries but of course, we don’t have any. We call his pediatrician and they offer to stay open late to see him. We tell them about the thermometer and his temperature. They immediately ask if we checked ours to compare to see if it was the thermometer or his fever was that high. WOW – what a great idea – we never thought of that! They proceed to take his temperature. It’s now 105.6! He is sweating so bad they can’t get a good read on his oxygen levels so they call Cincinnati Children’s Liberty Township and send us there immediately.
Upon arriving they are waiting for us! We go straight back and they check his temperature and oxygen levels. Checking oxygen was very difficult because he was sweating so much. They immediately get him on oxygen and send us for a chest X-ray. The entire time I was thinking we would do oxygen for a little bit and would be sent home. I thought that until they said that they were transferring us to the Main Campus and we had to go by ambulance! The doctors and nurses probably thought I was crazy because I kept saying “but he only has the flu”. .
Upon arriving we were taken to the Pediatric Intensive Care Unit (PICU). Max was fighting wearing the oxygen mask and constantly was trying to take it off. Each time he would take it off his oxygen levels would drop, sometimes so far that he would be different shades of grey and blue. It was a very long night staying awake to hold the oxygen mask on Max with one hand and holding him with the other.
March 14, 2012 – Today has been a very long day as Max has been struggling asking to go home and to see his twin brother He is constantly pulling his mask off and the doctors did talk with me about possibly having to intubate him. I really don’t want to do that and am trying to keep the mask on him so we don’t have to.
March 15, 2012 – Max took a bad turn and they are putting him on a breathing tube. Fever still high so we are working on that. The twins both have the flu but Max also has pneumonia and now tested positive for RSV.
March 15, 2012 – Now that he has the breathing tube we can see how sick he really is, which is way worse than we originally thought. He was fighting so hard that it seemed he wasn’t as sick as he is. The nurses have nicknamed him “Little Hulk” because he is fighting the sedatives (like a superhero) and waking up a lot. The doctors are increasing his sedatives to keep him asleep but it is a big struggle. Our nurse spikes Max’s hair because he looks more like a warrior like that!
March 16, 2012 – He keeps fighting to stay sedated and unfortunately they are having to give him more meds. It is a rough day watching him struggle to breathe and wake up looking so scared.
March 16, 2012 – Our pediatrician decided to send Zac for a chest X-ray to be safe. Luckily it was negative and Zac is showing some small improvement and eating a little. Tonight my husband is coming to stay the night.
March 17, 2012 – Max has the flu/pneumonia/RSV and now also a bacterial infection. He is on a ventilator that is breathing for him. Earlier today he went into cardiac arrest and had to be revived. It took several minutes to revive him after he coded. We were very lucky that his nurse was standing next to him when the machines went off so she immediately was working to revive him. Doctors came running from everywhere and the next thing Mike and I knew, the chaplin had arrived and was praying. We were so scared and we were yelling for Max to fight and come back to us. The doctors were honest that they were not sure how much damage was done because it had been 7 minutes from the time the machines coded until they had him back.
After the code, they stopped all the meds because they needed to see if he could wake up. They told us it could take 10 minutes or it could take a few hours. It seemed like days watching him to see if he would wake up. Finally I walked over to him and I told him that I needed him to wake up and show everyone that he was stronger than anyone thought and he was going to get better. Within minutes he woke! He tried to speak but had the breathing tube still in. They quickly gave him meds to get him back to sleep, but it was great news – he woke up!
I didn’t know a 3yr old could be this strong but he is. The nurses keep joking that he lives up to his gladiator name 🙂 (Max’s full name is Maximus)
March 20, 2012 – Max is showing signs of improvement so we took the tube out today. It was a very long day, he didn’t do as well as they thought at first but is doing a little better now. I am in bed w/him holding hands down when he tries to pull the oxygen out. Going to be a long night. Hopefully he sleeps at some point. I am trying to stay strong. I know we can do this. He talks just a little and has had a few suckers but is really exhausted constantly fighting the oxygen cannula.
March 22, 2012 – Sometimes a mom just knows something is wrong. Max isn’t talking at all and seems scared. I keep telling the doctors and nurses and they are telling me to be patient as this may be because he is mad at the situation. I’m so scared now! He won’t talk. I just want my happy little Max back. I have never been so frightened and the doctors keep saying ok let’s watch him for a little bit and see what he does.
March 22, 2012 – Max is getting worse and it’s not behavioral. They requested that we bring someone close to Max to the hospital to see if he has any reaction to that person. The logical choice would be his twin brother Zac but we are worried about how Zac would handle this at the age of 3. Max loves his older sister Amanda so we decide to have her come to the hospital.
March 22, 2012 – Mike rushed to pick Amanda up early from cheer. She was very scared since she hadn’t seen Max for 10 days and didn’t know what to expect. When she arrived she walked in the room to him and he tried to move as close to her as he could. He recognized her but still can’t speak. He kept trying to move closer and closer to her with tears running down his cheeks. The good news is he is in there – he does recognize her! The Neuro doctors came in to see Max and said they will run a variety of tests on him over the next few days. Our team of PICU Doctors is amazing and so caring! I do not know how they do what they do but I will forever be grateful that they do.
March 24, 2012 – This has been the most emotionally and physically draining 2 weeks of our lives. Max is improving on the respiratory side but now he can’t talk. He talked a few days ago but now he can’t. It’s just heartbreaking. He has had a CT, Spinal tap and MRI. I pray it is a virus and when it runs its course he will get better but the doctors don’t know. He may have scaring on his brain from the virus attacking it.
March 24, 2012 – Max has a brain infection and they tell us that they don’t know if he will ever sit up, walk or talk ever again. We just have to be patient and wait to see what happens. Patience at this point is very difficult! Hearing this is very difficult especially since today was the first time I left the hospital to go see our other kids and celebrate my son Aidan’s birthday. Mike is with the Neuro doctors. The PICU team is doing their best to make him feel better and they’re encouraging us to hold out hope. There is still a small chance that this is a brain infection that will run its course and he will improve. Because his respiratory failure has improved, they’re moving us to the trauma floor where they will continue to closely watch the situation with Max’s brain.
March 26, 2012 – Max has done amazing from the respiratory side! He is off his oxygen and breathing on his own. He has been through a lot of tests in the last few days because he is experiencing some neuro challenges. He has been unable to talk since Thursday. We are extremely scared for him but I am happy to say that every day he is getting a little better. Today he smiled a lot and laughed several times. We never thought that this would be something we were so thankful for until now.
Tomorrow he is being evaluated by the rehab team. Hopefully he has shown enough progress to work with them. He also needs physical therapy to gain strength to walk. This is somewhat normal after being in his bed for 12 days. Hopefully tomorrow we continue to move in the right direction! He is definitely frustrated with his current status and moving to show us improvements every day.
I did capture a smile today though!
March 27, 2012 – BEST day ever! I am so thrilled to tell you that we heard Max’s voice again today!!! He got mad this morning and said “no”. It’s just a start but I pray he is starting to come out of this. At first I thought I might be dreaming but then he asked “where are we?” We are being moved to rehab today so that’s a start in the right direction. He asked to sit in my lap and has answered several questions today. I am such a believer in miracles. I couldn’t wait to call home and share the news with everyone that was awake at 6am!
March 27, 2012 – Max has been moved to the rehab floor now so we are 1 step closer to home! He has a long road ahead of him learning to talk, walk and gaining strength, but this is such a positive sign.
March 29, 2012 – It has been a long couple of days. Max is scheduled for 7 hours of different therapies each day. He is starting to digress. He really just hates being here at this point. He cries every time someone comes in the room and he tells them “no”. He doesn’t know who is there with needles or who is there for therapy. He really doesn’t want to participate at all. Mike came today and he did have a breakthrough. Max sat up for 1 hour all by himself. He is completely exhausted but he did it!
March 30, 2012 – After a discussion with our doctors, we have all agreed that Max will thrive better at home. He will start outpatient therapy once he is out of isolation due to his respiratory issues. Mike and I will be the therapist until then – we’ve been here so long we’ve got this down! He has some serious recovery ahead of him but we are rooting for him! He has inspired me that’s for sure!
March 30, 2012 – The kids were all so excited to see him. Even though he is very overwhelmed and can barely even sit up at this point, he’s home!
March 31, 2012 – He is not talking a lot but does recognize everyone coming to see him. Popaw Jim came to visit and was playing around with Zac. Max was watching them and then said “down”. He wanted to get down to go play. He didn’t realize he can’t walk or even stand and seemed very confused by this. He looked at me and then at Zac several times. Probably thinking “what is he doing. I can run faster than him”. I think that was a turning point for him – he’s showing pure determination to make up for what he lost.
April 1, 2012 – The cape is back! Before they got sick Max and Zac wore superhero capes 24/7 – 100% of the time. Zac was still wearing his but we kept wondering if Max would ask for his. Well, today he did! I was holding him in his room and he saw his cape draped over his bed and said “that’s my cape”. Another big break through as he remembered something from before. The capes used to drive me crazy but at that moment I LOVE the capes!
April 3, 2012 – Amanda is spending tons of time working with Max on his iPad and trying to improve his motor skills. Mike is working with him every day on sitting, standing and taking steps.
April 5, 2012 – He stood outside for the first time! He fell a lot but he did it!
For the next few months, Max worked hard every day to get stronger and stronger.
When we returned to the Rehab floor for his follow up appointment, Max’s doctor couldn’t believe his eyes. Those were his words. He told us he wasn’t expecting Max to be near the stage he was in.
Max has continued to work hard to recover and has made a remarkable recovery He’s attending preschool and even plays teeball with his brother!
When I reflect on what we lived through, I always come back to one thought – this was JUST the flu. But it wasn’t. My perfectly healthy 3-year-old almost lost his life.
So, at the end of the day, I tell anyone and everyone that we will never skip flu shots. And I believe that everyone should have their kids take a flu shot every year even if it only protects them from certain strains of the flu. The FLU is scary and CAN BE life threatening even to a healthy child.
I am grateful every single day that Max is still with us.