.bmp)
Let me start with this first
.jpeg)
So since Maddox has been sick in August and diagnosed in September, he has had
Bronchitis
Collapsed lung
Asthma
Chronic lung disease
Uti - 2 times
Pneumonia - 2 times
Found out he has 3 kidney stones in each kidney
C-diff
Rsv
Stomach virus
Atlectasis
Parainfluenza
And he actually coded twice in front of me at memorial Hermann in the
Woodlands and had to be life flighted to Texas children's where they had to also resuscitate him in route to the hospital. Punctured his already pneumonia filled lung totally and had to have a chest tube inserted.
And he's still going. Not as well as normally but he's here and healing. And let's not forget, he has hydrocephalus, epilepsy, cerebral palsy and he's visually impaired. He is one tough little man!
We are finally home after a scary few months. After a routine recheck for an upper respiratory and UTI, Maddox was taken to Memorial Hermann in the Woodlands where everything seemed to be o.k., until his vitals started dropping and he coded 2 times in front of me. He was resuscitated while life flight was on their way to pick him up. When life flight arrived they had to stabilize him before they could take off and then he was on his way to Texas Childrens Hospital. I wasn't able to ride with him on the helicopter and I was a complete wreck. When we arrived at the hospital it was 5 hours before they let us see him. He looked like he had been in a car accident. They had to put an arterial line in and when they did, they punctured his lung and collapsed it completely. They had to put a chest tube in to make his lung reinflate and it ended up draining a lot of fluid from his lungs. He had pneumonia and a UTI. His lungs were completely filled with fluid and he was unable to breathe without oxygen and intubation. He started having seizures due to being so sick and when the Dr.s would give him something for his seizures his vitals would drop again. While in the hospital they discovered he had 3 small kidney stones in each kidney. After consulting with their kidney specialist, the stones were not causing any of his illness. Maddox began to get better and better and we got to leaving the PICU after 8 days and go to the pediatric care floor. When his levels started to even out, we were moved to an observation floor which is the floor you go to when you finally get to go home. We came home on New Years eve. And were so happy to be home. After 4 days home, we returned to Memorial Hermann with RSV. After much respiratory therapy we got to come home after 5 days. We spent 13 days home and 3 ER visits in those 13 days and we were back at the hospital with parainfluenza type 3 which can cause the croup or pneumonia. He had pneumonia again. After much intensive respiratory therapy and a bazillion tests we came home.
We now have nurses here round the clock because Maddox is so medically fragile and can go from great to ambulance time really quickly.
The next 4-6 months are filled with Dr.s' appointments, specialists visits and surgeries. He will have to have a G-button placed, circumcised, endoscope and some teeth work done. Really freaked out about all of the things he has to do, but I know they are all for the better and need to be done.
I just wanted to update everyone on how he was doing and say THANK YOU so much for all your support, love and prayers. We still have a long road ahead, but right now, the road looks so much better then it did in December.
here is after this was written
Bronchitis
Collapsed lung
Asthma
Chronic lung disease
Uti - 2 times
Pneumonia - 2 times
Found out he has 3 kidney stones in each kidney
C-diff
Rsv
Stomach virus
Atlectasis
Parainfluenza
And he actually coded twice in front of me at memorial Hermann in the
Woodlands and had to be life flighted to Texas children's where they had to also resuscitate him in route to the hospital. Punctured his already pneumonia filled lung totally and had to have a chest tube inserted.
And he's still going. Not as well as normally but he's here and healing. And let's not forget, he has hydrocephalus, epilepsy, cerebral palsy and he's visually impaired. He is one tough little man!
We are finally home after a scary few months. After a routine recheck for an upper respiratory and UTI, Maddox was taken to Memorial Hermann in the Woodlands where everything seemed to be o.k., until his vitals started dropping and he coded 2 times in front of me. He was resuscitated while life flight was on their way to pick him up. When life flight arrived they had to stabilize him before they could take off and then he was on his way to Texas Childrens Hospital. I wasn't able to ride with him on the helicopter and I was a complete wreck. When we arrived at the hospital it was 5 hours before they let us see him. He looked like he had been in a car accident. They had to put an arterial line in and when they did, they punctured his lung and collapsed it completely. They had to put a chest tube in to make his lung reinflate and it ended up draining a lot of fluid from his lungs. He had pneumonia and a UTI. His lungs were completely filled with fluid and he was unable to breathe without oxygen and intubation. He started having seizures due to being so sick and when the Dr.s would give him something for his seizures his vitals would drop again. While in the hospital they discovered he had 3 small kidney stones in each kidney. After consulting with their kidney specialist, the stones were not causing any of his illness. Maddox began to get better and better and we got to leaving the PICU after 8 days and go to the pediatric care floor. When his levels started to even out, we were moved to an observation floor which is the floor you go to when you finally get to go home. We came home on New Years eve. And were so happy to be home. After 4 days home, we returned to Memorial Hermann with RSV. After much respiratory therapy we got to come home after 5 days. We spent 13 days home and 3 ER visits in those 13 days and we were back at the hospital with parainfluenza type 3 which can cause the croup or pneumonia. He had pneumonia again. After much intensive respiratory therapy and a bazillion tests we came home.
We now have nurses here round the clock because Maddox is so medically fragile and can go from great to ambulance time really quickly.
The next 4-6 months are filled with Dr.s' appointments, specialists visits and surgeries. He will have to have a G-button placed, circumcised, endoscope and some teeth work done. Really freaked out about all of the things he has to do, but I know they are all for the better and need to be done.
I just wanted to update everyone on how he was doing and say THANK YOU so much for all your support, love and prayers. We still have a long road ahead, but right now, the road looks so much better then it did in December.
here is after this was written
2 days after I posted our home update, we were back in the hospital. Our poor night nurse. Her first night here and Maddox's saturations kept dropping and we ended up at the ER at 3AM. Nights are always a fun time at our house. Ended up at ER and after an hour long nebulizer treatment of 6 albuterol and some adavent he was stable enough to be transferred back down to Memorial Hermann. Everyone knows him now, which is good but bad. I keep joking that I am getting t-shirts printed and when they know he's coming they should all have them on. He again had a virus and with his weakened lungs and asthma, it made his asthma flare and he couldn't breath the right way. It was a short visit, which was great, but wish we could get past all these hospital stays. We had an appt button put in, circumsition, possible left "shy" testicle pulled down, 2 front teeth capped and possible cavities filled and an endoscopy. I keep saying I should just ask his neurologist does she want to get a quick MRI done too, but it's just me trying to cover up the fear of him having all these procedures done at one time. It will be better since he will only be put under once, but it is going to be an extreme baby makeover and for him, harder to recover from. Prayers will be needed since I'm sure we will be in the hospital sometime afterwards.
After we got home from our hospital stay, Sunday morning at 4AM, Maddox's ND tube came out (ND tube is a tube placed into the intestine). When that happened I knew we were in for another adventure. With an ND you should not be able to vomit. So after checking for placement, OH and this was the night the night nurse didn't show up, so I was on my own and freaking out and having stomach spasms because of the stress, I removed the tube. When we put him on the couch to change the sheets, he feel asleep. I waited until the morning before I took him to the hospital to have the ND placed again. But not before he had a seizure so I had to put an NG tube down to administer his medicine to prevent more seizures. He had one more seizure at the hospital, but then no more, thank God. Got to the hospital (Tomball Regional is 5 minutes away) so I called a friend who is a nurse at Tomball and asked her if they could place the tube and prevent me from having to drive 45+ minutes to the medical center. She said yes. Got to hospital and they informed me they did not carry pediatric sizes. I went back home grabbed the pedi size ND and came back to the hospital. Dr. came in put ND tube in and it seemed very easy, so I asked what is the difference between ND and NG placement and he said it was a "crapshoot", just a guess. The only way to make sure placement was correct was to get an x-ray. Got an x-ray and it was not in the right spot. Dr. came in tried again and after a 2nd x-ray, still not in the right place, I told the Dr. not to try again that I would take him downtown the next day. But ever since it came out he became an really happy boy. So after consulting with his pulmonologist, she said as long as he was doing well with his NG tube we could leave it like that. So for now we are still just an ND tube and we have been well or out of the hospital for 13 days today. WOOHOO!!! it is a big deal really it is. He just got a machine called cough assist today which is supposed to help him couch up the secretions so they can be suctioned out. In the morning he sounds fairly good, in the evenings it sounds like he is drowning and he is super gurgly. We are still healing. He has been through more then most grown ups ever have to go through in their whole lives.
Thank you again for all your support. We live on it and it keeps us going. I am thankful for all the awesome people in our lives who continue to pray for his healing and that is what has gotten him to where he is now.
After we got home from our hospital stay, Sunday morning at 4AM, Maddox's ND tube came out (ND tube is a tube placed into the intestine). When that happened I knew we were in for another adventure. With an ND you should not be able to vomit. So after checking for placement, OH and this was the night the night nurse didn't show up, so I was on my own and freaking out and having stomach spasms because of the stress, I removed the tube. When we put him on the couch to change the sheets, he feel asleep. I waited until the morning before I took him to the hospital to have the ND placed again. But not before he had a seizure so I had to put an NG tube down to administer his medicine to prevent more seizures. He had one more seizure at the hospital, but then no more, thank God. Got to the hospital (Tomball Regional is 5 minutes away) so I called a friend who is a nurse at Tomball and asked her if they could place the tube and prevent me from having to drive 45+ minutes to the medical center. She said yes. Got to hospital and they informed me they did not carry pediatric sizes. I went back home grabbed the pedi size ND and came back to the hospital. Dr. came in put ND tube in and it seemed very easy, so I asked what is the difference between ND and NG placement and he said it was a "crapshoot", just a guess. The only way to make sure placement was correct was to get an x-ray. Got an x-ray and it was not in the right spot. Dr. came in tried again and after a 2nd x-ray, still not in the right place, I told the Dr. not to try again that I would take him downtown the next day. But ever since it came out he became an really happy boy. So after consulting with his pulmonologist, she said as long as he was doing well with his NG tube we could leave it like that. So for now we are still just an ND tube and we have been well or out of the hospital for 13 days today. WOOHOO!!! it is a big deal really it is. He just got a machine called cough assist today which is supposed to help him couch up the secretions so they can be suctioned out. In the morning he sounds fairly good, in the evenings it sounds like he is drowning and he is super gurgly. We are still healing. He has been through more then most grown ups ever have to go through in their whole lives.
Thank you again for all your support. We live on it and it keeps us going. I am thankful for all the awesome people in our lives who continue to pray for his healing and that is what has gotten him to where he is now.
