Today we had the first of five home health visits designed to help us learn how to care for Ernie's new equipment. We weren't sure what to expect but got a very pleasant surprise. According to the home health care nurse, the protocols we learned in the hospital are to insure a "sterile" environment. This involves gallons of bleach, saline solution, distilled water and boiled water, tons of cotton swabs and gauze and countless pairs of sterile gloves. The way we were going through these supplies, I was going to check into purchasing by the case.
Luckily, the nurse explained that at home there is not a real expectation of maintaining a sterile environment. Instead, our goal is a "safe" environment. We still need distilled water but in many cases bottled water or even tap water is fine. The cotton swabs and gauze have been replaced by a clean, white wash cloth and towel. Disposable gloves are fine but so is washing your hands.
This news was liberating. We could not imagine how one could travel--all these supplies would require a suitcase of their own. Also, without the need to organize all these supplies, we are saving a lot of time and effort. All in all, a good day.
Tuesday, November 11, 2014
Monday, November 10, 2014
The Silence Is Broken
What a great day. Ernie has his voice back!! He thinks that he doesn't have as much volume as before but the speech pathologist reminded him that he still has a lot of swelling and that he can expect some improvement.
His only complaint--his value is purple. Evidently, they come in different colors, including clear, but this is the only one they had in stock that was the right fit. The purple color is the choice for hospitals so the valves can be quickly identified. Luckily, Ernie is secure in his manhood and is not afraid to sport flashy colors. He is supposed to cover the speaking valve with a scarf in cold weather anyway so it will not be obvious.
Now we just have to work on eating again. They did a swallowing study in the hospital and, due to all the trauma from surgery, he has a lot more swelling. This makes it difficult to get even water to go down the right pipe. So, no food or drink besides water until he gets another study in a couple of weeks. I know he is getting better because he is getting interested in food again. However, he does not want to get aspiration pneumonia so will wait until he gets the all clear from the doctors. Until then, the mic-key button will get a good workout.
His only complaint--his value is purple. Evidently, they come in different colors, including clear, but this is the only one they had in stock that was the right fit. The purple color is the choice for hospitals so the valves can be quickly identified. Luckily, Ernie is secure in his manhood and is not afraid to sport flashy colors. He is supposed to cover the speaking valve with a scarf in cold weather anyway so it will not be obvious.
Now we just have to work on eating again. They did a swallowing study in the hospital and, due to all the trauma from surgery, he has a lot more swelling. This makes it difficult to get even water to go down the right pipe. So, no food or drink besides water until he gets another study in a couple of weeks. I know he is getting better because he is getting interested in food again. However, he does not want to get aspiration pneumonia so will wait until he gets the all clear from the doctors. Until then, the mic-key button will get a good workout.
Sunday, November 9, 2014
Released At Last
Yipppee!! Ernie was released from Wake Forest Baptist Medical Center yesterday. The ENT docs showed up about 8 AM to remove his temporary trach tube and insert his permanent tube. The permanent tube is smaller and designed for people who are not totally reliant on their tracheotomy to breath. Although he does not have the Passy Muir speaking valve yet, this allows him talk a little bit--enough that we could dispensed with the notebook he was using to communicate.
Before he could be released, his nurse--Lisa--made me pass both a practical and oral exam. I had to give Ern his meds and food through his mic-key tube. I also had to demonstrate that I could remove, clean, disinfect and reinsert the "inner cannula" of the trach tube. The trach tube is really composed of two tubes. The outer cannula is never removed as it holds the tracheostomy open. The inner cannula goes inside the outer cannula and is removed for cleaning and then locked in place. Once I had demonstrated everything, I had to describe to her, in detail, everything I had done. I guess I did OK as we were soon on our way home.
There is a lot to learn about caring for his new "equipment". Right now it seems to take a lot of time but I can see that by the end of the 4 to 6 week recuperation period it will be routine. We are starting to gain confidence. We have now been home for 24 hours and have successfully completed one full cycle of treatment almost on our own (my sister was here but is now gone). Also, Ernie's John's Hopkins doctor that we had originally chosen to do the surgery called this morning and said all the right things.
Ernie's next step is to get his Passy Muir speaking valve, hopefully tomorrow afternoon, and master it.
Before he could be released, his nurse--Lisa--made me pass both a practical and oral exam. I had to give Ern his meds and food through his mic-key tube. I also had to demonstrate that I could remove, clean, disinfect and reinsert the "inner cannula" of the trach tube. The trach tube is really composed of two tubes. The outer cannula is never removed as it holds the tracheostomy open. The inner cannula goes inside the outer cannula and is removed for cleaning and then locked in place. Once I had demonstrated everything, I had to describe to her, in detail, everything I had done. I guess I did OK as we were soon on our way home.
There is a lot to learn about caring for his new "equipment". Right now it seems to take a lot of time but I can see that by the end of the 4 to 6 week recuperation period it will be routine. We are starting to gain confidence. We have now been home for 24 hours and have successfully completed one full cycle of treatment almost on our own (my sister was here but is now gone). Also, Ernie's John's Hopkins doctor that we had originally chosen to do the surgery called this morning and said all the right things.
Ernie's next step is to get his Passy Muir speaking valve, hopefully tomorrow afternoon, and master it.
Friday, November 7, 2014
Almost Home
Tomorrow is the big day! Ernie will be discharged after 10 very long days in the hospital. We have all of our supplies and equipment, except for the humidifier that will be delivered and set up at the house tomorrow. We will also receive home health care visits for a few days to make sure we are comfortable with all of our new duties.
The only thing we are missing is the Passy-Muir speaking valve. Evidently, they did not think Ernie was ready today and the speech department doesn't work on Saturday so we will have to go to the doctor's office on Monday to get that. Until then, we will continue to communicate with a mixture of sign language and writing.
Many folks have inquired about visiting. When Ernie gets used to his speaking valve, he will be anxious to talk up a storm. Until then, he welcomes your text messages (336407-3800), emails to fackelmn@ix.netcom.com or good, old-fashioned snail mail.
The only thing we are missing is the Passy-Muir speaking valve. Evidently, they did not think Ernie was ready today and the speech department doesn't work on Saturday so we will have to go to the doctor's office on Monday to get that. Until then, we will continue to communicate with a mixture of sign language and writing.
Many folks have inquired about visiting. When Ernie gets used to his speaking valve, he will be anxious to talk up a storm. Until then, he welcomes your text messages (336407-3800), emails to fackelmn@ix.netcom.com or good, old-fashioned snail mail.
Thursday, November 6, 2014
Full Circle
This morning we made the trip from the ICU back to the Cancer Center. We had hoped that Ernie would be fitted with his Passy-Muir speaking valve today but evidently we got to the Cancer Center too late and the team that does that had already left.
The doctors said that if "all goes well" Ernie will be discharged on Saturday. This means that tomorrow will be a full day.
Besides being fitted for the Passy-Muir valve, we have to meet with the dietitian about his food and receive instruction about how to use and maintain the famous mic-key button (aka "feeding tube") and trach so that we can perform all the functions that the nursing staff has been doing. Plus we need to get all of equipment and spare parts for the feeding tube and trach.. Last, but not least, the ENT' docs will swap Erne's current trach for a permanent one. It seems that we will be very busy adjusting to our new routine.
As always, Ernie is determined to get things done so he can leave ASAP. He is very tired of being in the hospital and very tired from being in the hospital. Now we know why they told us to expect a four to six week recovery.
The doctors said that if "all goes well" Ernie will be discharged on Saturday. This means that tomorrow will be a full day.
Besides being fitted for the Passy-Muir valve, we have to meet with the dietitian about his food and receive instruction about how to use and maintain the famous mic-key button (aka "feeding tube") and trach so that we can perform all the functions that the nursing staff has been doing. Plus we need to get all of equipment and spare parts for the feeding tube and trach.. Last, but not least, the ENT' docs will swap Erne's current trach for a permanent one. It seems that we will be very busy adjusting to our new routine.
As always, Ernie is determined to get things done so he can leave ASAP. He is very tired of being in the hospital and very tired from being in the hospital. Now we know why they told us to expect a four to six week recovery.
Wednesday, November 5, 2014
Persistence Pays
Ernie spent another day in the ICU, once again largely due to his persistence.
Although the Cancer Center has one nurse for every five patients, it seems that everyone rings their call buttons at once. This concerned Ernie as he can not anticipate when his trach will get clogged and he will need suction. No suction, no breathing. Also, he is hooked up to so many tubes, it is impossible for him to go seek help. Thus, he was determined to spend another day in the ICU where there was one nurse per patient. .
The family galvanized behind him. We followed Ernie's tried and true approach. Do not argue and do not get mad but do not agree with the plan. Simply keep repeating your position over and over until you either convince the other party or wear them out. So, whenever any doctor, nurse or staff member approached Ernie or one of us about moving to the Cancer Center, we repeated our mantras... "We do not feel that the Cancer Center is a safe place for Ernie right now" or "Ernie is not a typical trach patient so the family does not think he should be moved yet.", etc. Pretty soon the subject was dropped and Ernie spent an uneventful day in the ICU.
He will be moved back to the Cancer Center sometime tomorrow but now he feels ready for the move.
Although the Cancer Center has one nurse for every five patients, it seems that everyone rings their call buttons at once. This concerned Ernie as he can not anticipate when his trach will get clogged and he will need suction. No suction, no breathing. Also, he is hooked up to so many tubes, it is impossible for him to go seek help. Thus, he was determined to spend another day in the ICU where there was one nurse per patient. .
The family galvanized behind him. We followed Ernie's tried and true approach. Do not argue and do not get mad but do not agree with the plan. Simply keep repeating your position over and over until you either convince the other party or wear them out. So, whenever any doctor, nurse or staff member approached Ernie or one of us about moving to the Cancer Center, we repeated our mantras... "We do not feel that the Cancer Center is a safe place for Ernie right now" or "Ernie is not a typical trach patient so the family does not think he should be moved yet.", etc. Pretty soon the subject was dropped and Ernie spent an uneventful day in the ICU.
He will be moved back to the Cancer Center sometime tomorrow but now he feels ready for the move.
ICU
The ICU's at WFBMC are only 10 beds large. In Ernie's ICU, only 6 of the beds are occupied. That turned out to be a blessing, as he developed lots of issues last night that required his nurses attention. Early in the evening, his head suddenly swelled and, along with it, his blood pressure spiked. They gave steroids for the head and BP medicine to get his pressure down. His blood pressure gradually dropped to normal but then kept going down more! Finally, they gave him IV liquids to get it back to normal. He also needed a catheter. By about 2 AM, things were under control and he slept fitfully until rounds started at 6 AM.
It is now up to the ICU docs and ENT docs to convene and decide whether Ernie can move back to intermediate care in the Cancer Center. The ENT group has no idea why his head swelled and thinks he should be off the steroids the other docs gave him. From their perspective, he is doing better than most trach patients. Ernie is worried about his swollen head, a scleroderma renal crisis (high blood pressure can be a sign of that) and getting the attention he needs when the trach gets clogged and he needs suction. So, he is working on the docs to let him stay in ICU another day.
One of the most difficult parts of all this for Ernie is the temporary loss of his voice. Although he has been writing copious notes to the docs, it is sometimes difficult for him to get the attention he needs. The family has decided that one of us will be with him 24/7 until he can talk again. I will be the night shift, my sister will take the morning and Ernie's brother the afternoons. Hopefully, by Friday they will give him his permanent trach tube and he will be able to advocate for himself.
It is now up to the ICU docs and ENT docs to convene and decide whether Ernie can move back to intermediate care in the Cancer Center. The ENT group has no idea why his head swelled and thinks he should be off the steroids the other docs gave him. From their perspective, he is doing better than most trach patients. Ernie is worried about his swollen head, a scleroderma renal crisis (high blood pressure can be a sign of that) and getting the attention he needs when the trach gets clogged and he needs suction. So, he is working on the docs to let him stay in ICU another day.
One of the most difficult parts of all this for Ernie is the temporary loss of his voice. Although he has been writing copious notes to the docs, it is sometimes difficult for him to get the attention he needs. The family has decided that one of us will be with him 24/7 until he can talk again. I will be the night shift, my sister will take the morning and Ernie's brother the afternoons. Hopefully, by Friday they will give him his permanent trach tube and he will be able to advocate for himself.
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