A Step Forward…

This past Sunday, Aiden was successfully extubated. His breathing support is currently a high-flow nasal canula (which is short prongs through the nose). He is currently at a 2-liter flow and the goal is to wean him down to what he was when he came to the hospital; which would be 1/16th. He has gained weight and is currently a little over 9 lbs. Additionally, he is alert, comfortable and looks much better than he has in a long time.

They moved him out of ICU yesterday evening into the General Ward. Unfortunately, the level of care and service is quite poor as the facilities are older and the quality of care is much less when compared to the ICU. The General Ward is what we refer to as “Hades, with fluorescent lighting.” Hannah and I are doing 12 hour shifts at the hospital to make sure he gets the care he needs. Unlike the ICU, we have little to no confidence that he would be cared for properly so one of us has to be there all the time. The other concern is that he has forgotten how to eat. In fact, he does not even suck on his pacifier like he used to. This will lengthen and complicate his stay as it will take some time for him learn how to suck, swallow and eat.

We are so glad that he is doing well enough to where he does not need to be in critical care but being at the hospital 24/7 is very difficult. Please pray that his oxygen needs can be weaned quickly and that he would start eating. Thanks for all your support and prayers during this difficult time.

    Happy Valentine’s Day

    Thank you all for your continued prayers for Aiden. He is still in critical condition and will be for some time to come, but is much more stable than he was previously. He has made some progress as they continue trying to wean him from the ventilator in very small increments, and seems to be tolerating the changes better. He is still on fairly heavy sedation meds, and they were concerned that he was becoming too reliant on the ventilator, so it is a relief to finally see that he seems to be more tolerant of changes this week.

    The goal is to move him to a different, less invasive type of ventilation system sometime next week. If they are unable to wean him from the ventilator, they will have to re-intubate him with a different ET tube (the ventilator tube that goes down the back of his throat into his lungs) due to some issues with the current ET tube. This is something that everyone wants to avoid if at all possible, as it opens the door for additional complications such as another pneumothorax, etc.

    On Wednesday afternoon, Aiden had a CT scan to look at the C-CAM or growth on his left lung. Unfortunately, the results were not conclusive. They do see some cysts and abnormalities in the lower left lung, but are puzzled because they do not present in a typical manner as a discernable mass. The scans will be sent to a Pulmonary Radiologist in another hospital to get a second opinion.

    Ethan and Evan are doing wonderful! Ethan is over 12 lbs. and Evan is a whopping 14 lbs. They have started trying to “talk” and are learning how to complain when they want attention. Both boys love to “chat” and are learning that they can call out when they want something. It is tough to record them because they tend to stop talking when they realize they are on camera! Take a look at the video below to see the twins in action. Also, there are lots of pictures below as we have not had much time to update the blog with images, video, etc. These pics are from the last several weeks. Enjoy!

    Which team are you on?

    There’s an “e”-monster under my bed!

    Sweet Pea is done for the night.

    Medium and Large…now we just need “Small”

    To date, the only picture with all three boys together

    Baby Aiden is so cute!

    Little AI with his tongue out

    Grandma and the twins

    Aiden getting a breathing treatment (when he was home)

    Look at those eyes!

    He must be the cutest baby in the world!

    Ethan issues a challenge to Evan

    Ethan is doing good holding his head up — he is already scooting himself around a little bit

    E1 is out for the night

    Grandmas and the twins

    Grandparents and the twins

    Evan in his jungle gym

    Ethan, what big eyes you have!

    The boys with their new friend, Carolyn

    Evan is all cheeks

    Ethan poses (but no smiles)

    Evan was not ready to have his picture taken

    Ethan is learning to chew on his fist

    Evan looking around

    Ethan tries to talk to me

    Ethan awaits my response

    Evan loves his bumble bee

    When he sleeps, he loves to hold on to his friends

    These little thieves stole mommy’s heart!

      Progress…

      Throughout the last week, Aiden has marginally improved each day. That means little over the course of 24 hours, but over the course of a week it certainly adds up.

      His oxygen dependency on the ventilator has dropped and they have been able to wean him to a much lower requirement. Although he still requires ventilation, he is doing much better and less dependent on it.

      The x-rays look better when compared to last week and they have been able to take him off the paralytic (although he is still sedated). It was such a blessing to see him open his little eyes and look around the room. Brain and heart scans look good so the main issue is still the lungs.

      Please continue to pray that his little body would fully heal. Also, please pray that we would know what decisions to make once he is released from the hospital. He has severe reflux and we need to determine the best way to feed him whether it is orally or through a feeding tube.

      Thanks so much for your support and prayers!

        Critical, but stable

        Aiden has improved marginally each day since last week. His oxygen dependancy is down and the x-rays show some improvement. He is still sedated and paralyzed as they do not want him to be active and risk pulling out any of his tubes.

        Thanks so much for all your prayers. Things are better but he still has a way to go. Hopefully, by the end of the week, things will get good enough to where he can be taken off the ventilator.

        Please continue to keep praying for him!

        Thanks,
        Manish & Hannah

          Aiden Update – February 1st

          Thanks for all your prayers and support. We wanted to update everyone via web as we have so many people calling and asking about Aiden. As time permits, we will try to post an update on line every couple of days.

          For the last two nights, Aiden has held steady. This morning’s x-ray shows marginal improvement and he has a very long road ahead.

          On Tuesday evening, Aiden was intubated because he was pulling too hard while breathing. Typically, this helps reduce the work his lungs have to do and gives him time to rest and heal. However, one of the risks is that the procedure can cause a pneumothorax (hole in the lung) and cause a medical emergency from accumulation of air or gas in the chest cavity. This air then causes the lung to collapse from the outside. Unfortunately, it happened during the procedure and the hole was large enough to where a chest tube had to be placed to remove the air outside the lung.

          With his chronic lung diseased and already weakened body, this is a serious thing and could cause deterioration beyond repair. In order to prevent him from moving or pulling out tubes, they sedated and paralyzed him with drugs. There was serious concern throughout Wednesday and we contacted many of our friends and family to pray for him.

          God worked and Aiden held his own on Wednesday and Thursday. Thus far, they have been able to slowly reduce his oxygen needs. But he is still so fragile that anything can happen. It’s a very helpless feeling. Either one of use would trade places with him if we could.

          There is a very fine line when balancing the tradeoffs in trying to prevent his lungs from failing. Pray for wisdom for the doctors, nurses and technicians.

          Aiden has had many battles… this will be his greatest. Please continue to pray that his lungs would strengthen and that his body would heel.

          Below are some images of Aiden (from Wednesday evening)

          He is sedated and paralyzed for now

          The medical equipment which keeps him alive