Well, it is hard for me to believe that the Thanksgiving holiday is about over. The last couple of weeks have been pretty much a blur as we rushed from home to the PICU to work to the PICU to home then did it again the next day and the next and the next. It has been great to have Nate home from the PICU and we both believe that it has helped him improve.
As Jen’s last post stated, Wednesday was a tough day for the little guy and that continued on Thursday and into Friday morning. All day Thursday, he ran a fever, had labored breathing, had very congested nasal passages, needed supplemental O2 and just looked tired. It was strange that for most of the day, Thanksgiving Day didn’t really seem like Thanksgiving at all. It seemed like a regular Saturday for us in that we were so focused on taking care of Nate and worried about him. Nancy and Jeff came over late that afternoon to have Thanksgiving dinner with us. We enjoyed a catered Thanksgiving Dinner from Honey Baked Hams sent to us by Craig, Katie, Sarah, Alex & Ryan Lengyel. As we sat down to eat, it finally began to feel like Thanksgiving…THANK YOU, Lengyels!!!
Friday started off the same as Wednesday and Thursday…fever, labored breathing, junk in the lungs and the need for supplemental oxygen. About 1:00PM, we did a breathing treatment and coughed Nate. As we have said before, Nate’s nasal passages have been blocked up with mucus, drainage and bloody clots from having to suction that stuff out. While he was in the PICU, we decided to just leave his nose alone and not suction it out anymore in an attempt to let it heal. We have been doing saline treatments in the Nebulizer plus using a humidifier on his BiPAP to help moisten and loosen the stuff in his nose. While he has been at home, we have been using an Otoscope to look up his nose and could clearly see the clots and plugs.
After a couple of “coughing sets”, he had such little airflow out of his nose that we decided to use a suction device called a BBG on his nose. This device works much better than a Little Sucker or a catheter because of its design; it does not go very far into the nose and does not cause any irritation. Well, I squirted some solution into Nate’s right nostril while Jen suctioned the left. We were able to suction out a huge plug / glob of mucus / bloody clot. We quickly did the same thing on the right side and got out another one. You could almost see the relief in his face after those things came out!
The rest of Friday and all day yesterday, Nate was much more his normal self. He has been much more vocal, the airflow in & out of his nose and lungs sound much better and he has not needed any supplemental O2 at night. I cannot begin to explain how important it was that we got those plugs out of his nose. Those could easily have gone down his throat and blocked his airway again causing a repeat of November 5th. Additionally, the infection these could have caused if they had gotten into his lungs would have been terrible.
As I sit here writing this update, I can hear Nate making all kinds of sounds while he is back in his room with his VEST going. He is at the opposite end of the house and the baby monitor is not anywhere close to me. This is a great thing and something we have been looking forward to for several weeks!
As I reflect on recent events, it is easy to see a few of the things that I am thankful for:
NATHAN – It is hard to believe that a 3 year old could teach his parents, his family and his friends so much about Life. It is supposed to be the other way around but Nate has a special mission with his life. His strength and his spirit are so extraordinary and I am so very thankful that he is my son.
JENNIFER – I could not ask for a better wife and mother for my child. The love and care with which she approaches our life with Nate is amazing. It is hard for others to understand the physical and emotional toll that is exacted upon us each day as we care for Nate. This is not exactly the life we dreamed about and planned for but we would NOT trade it. Jen, you are the BEST and I am so thankful that you are right here beside me & Nate.
FAMILY & FRIENDS – Nate, Jennifer and I have the BEST SUPPORT SYSTEM one could ask for! Your love, concern, actions, thoughts and prayers have been so important to all three of us. We cannot begin to THANK YOU enough for all that you have done and how much it has meant to us over the last 3 plus years.
I hope all of you had a great Thanksgiving and I thank you for checking up on Nate!
Trey
As Jen’s last post stated, Wednesday was a tough day for the little guy and that continued on Thursday and into Friday morning. All day Thursday, he ran a fever, had labored breathing, had very congested nasal passages, needed supplemental O2 and just looked tired. It was strange that for most of the day, Thanksgiving Day didn’t really seem like Thanksgiving at all. It seemed like a regular Saturday for us in that we were so focused on taking care of Nate and worried about him. Nancy and Jeff came over late that afternoon to have Thanksgiving dinner with us. We enjoyed a catered Thanksgiving Dinner from Honey Baked Hams sent to us by Craig, Katie, Sarah, Alex & Ryan Lengyel. As we sat down to eat, it finally began to feel like Thanksgiving…THANK YOU, Lengyels!!!
Friday started off the same as Wednesday and Thursday…fever, labored breathing, junk in the lungs and the need for supplemental oxygen. About 1:00PM, we did a breathing treatment and coughed Nate. As we have said before, Nate’s nasal passages have been blocked up with mucus, drainage and bloody clots from having to suction that stuff out. While he was in the PICU, we decided to just leave his nose alone and not suction it out anymore in an attempt to let it heal. We have been doing saline treatments in the Nebulizer plus using a humidifier on his BiPAP to help moisten and loosen the stuff in his nose. While he has been at home, we have been using an Otoscope to look up his nose and could clearly see the clots and plugs.
After a couple of “coughing sets”, he had such little airflow out of his nose that we decided to use a suction device called a BBG on his nose. This device works much better than a Little Sucker or a catheter because of its design; it does not go very far into the nose and does not cause any irritation. Well, I squirted some solution into Nate’s right nostril while Jen suctioned the left. We were able to suction out a huge plug / glob of mucus / bloody clot. We quickly did the same thing on the right side and got out another one. You could almost see the relief in his face after those things came out!
The rest of Friday and all day yesterday, Nate was much more his normal self. He has been much more vocal, the airflow in & out of his nose and lungs sound much better and he has not needed any supplemental O2 at night. I cannot begin to explain how important it was that we got those plugs out of his nose. Those could easily have gone down his throat and blocked his airway again causing a repeat of November 5th. Additionally, the infection these could have caused if they had gotten into his lungs would have been terrible.
As I sit here writing this update, I can hear Nate making all kinds of sounds while he is back in his room with his VEST going. He is at the opposite end of the house and the baby monitor is not anywhere close to me. This is a great thing and something we have been looking forward to for several weeks!
As I reflect on recent events, it is easy to see a few of the things that I am thankful for:
NATHAN – It is hard to believe that a 3 year old could teach his parents, his family and his friends so much about Life. It is supposed to be the other way around but Nate has a special mission with his life. His strength and his spirit are so extraordinary and I am so very thankful that he is my son.
JENNIFER – I could not ask for a better wife and mother for my child. The love and care with which she approaches our life with Nate is amazing. It is hard for others to understand the physical and emotional toll that is exacted upon us each day as we care for Nate. This is not exactly the life we dreamed about and planned for but we would NOT trade it. Jen, you are the BEST and I am so thankful that you are right here beside me & Nate.
FAMILY & FRIENDS – Nate, Jennifer and I have the BEST SUPPORT SYSTEM one could ask for! Your love, concern, actions, thoughts and prayers have been so important to all three of us. We cannot begin to THANK YOU enough for all that you have done and how much it has meant to us over the last 3 plus years.
I hope all of you had a great Thanksgiving and I thank you for checking up on Nate!
Trey
1 comment:
You guys are amazing!
Jim M.
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