“This is the eleventh blog in the Caregiver Series about recovery from a lung transplant.” If the Caregiver Series can help just one person going through the same journey, I will be grateful!
One of the angels in the ICU explained that time does not operate the same inside a hospital as it does outside the hospital. The quote ‘Hurry up and wait’ was never truer. The recovery starts in the Intensive Care Unit and it is not a quick recovery. It is a long recovery from a lung transplant filled with small victories!
Day 1
The first day in the ICU was a rest day after the surgery and waiting for the swelling after the lung transplant to go down. You can see the swelling in his hand by the puffiness of the skin. My husband now needs insulin and has the all important feeding tube. He is still sedated and on a ventilator awaiting the surgery to completely close his chest after the surgery.
Day 2
On the second day in ICU, the prospect was to go into surgery to close the chest. After surgery, he will have his first bronchoscope to check on the lungs. He will gradually be brought off of the sedation and have to demonstrate he can breathe on his own for 15 minutes before the ventilator can be removed. The first 2-3 days off the sedation, he can be very anxious and even hallucinate! Those dreams will be discussed later.
He will have to learn to breathe with healthy lungs. When you have Pulmonary Fibrosis, there is scarring in your lungs that starts in the lower parts of the lungs. You overcompensate in breathing because you cannot take deep breaths in your old lungs. With your new lungs, you have to learn to take deep breaths. It is a change in your mindset and not an easy change. Ironic thing about prospects is that it does not always happen that way.
2:30 PM…He went into surgery to check the lungs, remove the padding they inserted during the original surgery, and close the chest.
4:45 PM…The lungs look good but there is still too much swelling and the chest couldn’t be closed. We are still waiting for the swelling to go down and the surgeons will try again in a couple of days.
Day 3
The third day in the ICU was a waiting day for more of the swelling to go down. Due to having so much swelling, there is an inflammation around the heart. Another item to watch. Each patient has a board with the patient’s original vitals in their room. I glanced up at the board and noticed an entry that I hadn’t paid attention to before. DCD Donor. Quickly, I googled and discovered that the donor’s lungs were donated after circulatory death. In that moment, you are and will forever be grateful for the decision of organ donation of the donor!!
Day 5
On day five, enough swelling has gone done so he was wheeled into surgery mid-morning. By early afternoon, he came out of surgery and the surgeons were able to close his chest completely. After three surgeries of going through the clam shell incision, the chest was closed after trimming a portion of the lungs. As he goes through the healing, the chest cavity will expand back to normal.
Day 6
Day six was a big day! The bronchoscope went well and everything was intact. The doctors started the process of bringing him off the sedation. He was sedated for five days so the process would be slow. There are not too many experiences that make me nauseous more than seeing someone come off of sedation. His eyes were open, however, he was not seeing you. The eyeballs roll up looking at the inside of his eyelids. They were talking to him asking him to wink which he did half-way and then I saw a tear coming out of his eye down his cheek. Definitely tugs at your heart!
As he is coming out of the sedation, they wrap his hands in ‘Mickey Mouse’ gloves so he wouldn’t try to pull out the ventilator. Then he started with a gag reflex, then stopped, gag reflex again, and then the yellow light and alarm went off on the ventilator. Time to go back to the waiting room before I hurl!! He starts to move his limbs and nodding to simple questions. In the early evening, they made the first attempt to see if he can breathe on his own. He was taking only small breaths and not enough deep breaths so they will let him rest the evening and try again in the morning.
Day 7
On day seven was Mother’s Day, the first of several holidays that we will spend in the hospital. It was one of the sweetest holidays as both my kids were with me celebrating and being very supportive! I couldn’t have asked for a better day. They tried the breathing test again, however, he is too weak for his breaths to be consistent and cannot be removed from the ventilator.
Day 8
Day 8 consisted of them trying the breathing test throughout the day with 2-3 hours between each attempt. He is losing 1-2% muscle mass each day he is in bed. The surgeons propose to do a tracheotomy (4th surgery) so that the ventilator tube would be hooked to the trach opening. He would then be mobile enough to start his therapies to get his muscle mass back that he has lost and to start gaining strength.
Day 9
In the morning on day nine, he passed the breathing test! I felt such relief that he wouldn’t have to have a tracheotomy. Those hopes were dashed when the doctors rounded and explained that he would still need the tracheotomy since he wasn’t consistent with his breathing. Looking back now, having the tracheotomy was the best option that he had for recovery. Although giving permission to put a hole in his throat will always be a tough call for a caregiver!
Day 10
Throughout day the doctors would have him working on his breathing and it is the first time he is sitting in a chair. Physical Therapy requires that he sits in a chair for 2 hours (1 hour upright and 1 hour reclined). This seems simple enough except for someone who just had 4 surgeries a little over a week ago. When the nurse got him up from the bed to go to the chair, you could easily see the lost muscle mass in his legs. He would be sitting in the chair 3-5 times a week. Later in the day, he becomes frustrated that we cannot understand him. The ‘Mickey Mouse’ gloves have been removed since he promised to not yank on the ventilator tube. He will have to use the physical therapy glove to strengthen his hand before he tries to write.
Day 11
On day 11 the doctors have put in an order for him to go to the step down unit. While that is exciting to hear, hospitals operate on a different time table, however, the process has started. In preparation to to go the step down unit, all IV drips convert over to shots. Physical Therapy came in to move him to a the chair. They, of course, do it differently than the nurses. They use a lift to move him from the bed to the chair. It reminded me of a ride at an amusement park! In the afternoon, Respiratory Therapy is adding a trach collar so he can start to transition from the ventilator to oxygenated air. The oxygenated air will hover over the trach opening which will help him to breathe.
Day 12
Throughout day 12 he continues with more time on the oxygenated air. He has to be on the oxygenated air for 24 hours straight before they will put on a speaking valve on the trach. When he is sitting in the chair, there is a security belt that has velcro so he doesn’t fall out of the chair. He tries to take off the security belt and I told him that it has to stay on. I think he cussed me out in his head!
Day 13
During day 13 he is on the ventilator at night and on the oxygenated air during the day. Today is the first day that he is up with a walker. I have never seen a walker so massive as this early type of walker. He walked 50 feet!! Small steps lead to big victories. He wants to go home, it is a long way to go before that happens.
Day 15
On day 15 the last of the 4 chest tubes have been removed. Remember when the doctors put the order in for a room? They are waiting for a room to open up for Unit 6300 which is a specialized step down unit for lung transplant patients. A bed has finally opened up in the unit and it was time for me to visit the unit. He is walking with assistance for 85 feet!
Due to the fact that the donor’s antibodies are different from his, he will start to have infusions to give him more antibodies so that his body does not reject the organs. He will have them once per month for 6 months. In the afternoon, Speech Therapy came by and gave him a speaking valve and he can talk again! It is one of those moments that just warms your heart to hear his voice again and no more lip reading!
Day 16
Day 16 started with Occupational Therapy coming by and helped him to stand in the bathroom brushing his teeth, moving his limbs, and giving him a memory test. Ironically, he does not want to use the speaking valve very much as it requires more energy. He is up walking for 170 feet. At 5 pm, his room is ready and he leaves the ICU for the next phase of his recovery. He is settled in his new room and is fast asleep by 6:30 pm.
For a caregiver, there is immense gratitude in seeing his progress from the entrance to the ICU and now the exit from ICU. There is such a special team that was assembled in his care with qualified surgeons, doctors, nurses, and technicians that got him to this place in his recovery. There is also a great sense of community of new friends in the waiting room that you have met and share a similar experience in the ICU. We are eternally grateful for everyone we have encountered.
Next stage of recovery: the step down unit!
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