Note: The following was actually written May 2024, after Grace got her trach, but never posted. Updates are as noted.

I don’t want to seem ungrateful for the good parts of the last five months. But I want to be honest. It’s been rough. From the outside it may seem like we are doing well and back to ‘normal’, and I have tried to be positive in my posts, but our lives have been completely changed .

It has been difficult to find the right words to describe what life has been like since Grace was discharged from the hospital two months ago. But I think the title sums it up well. Since the day she left H. Hospital, we have struggled to get follow up care and home nursing.

Long story short, we had no idea that when we consented to Grace having the trach surgery (which her doctor said she needed ) that we would have a very hard time finding outpatient doctors to take care of that trach and her ventilator that she needs to breathe. It turns out that doctors do not want to take on new trach patients unless THEY did the surgery. This means that although Grace’s trach needs to be changed monthly, it has not been changed since it was put in while in the ICU which was February 17.

The Long Story

This whole hospital visit was weird. This was not Grace’s first experience with severe respiratory distress and pneumonia, so I (thought I) knew what to expect. On January 3 I was expecting her to be in the hospital for a couple of weeks and then get back to normal. I had no idea how wrong I was.

From the first day the doctors were very negative about her condition. I was told that I brought her in ‘just in time’ and that her prognosis was uncertain. This surprised me having seen her looking worse than this before. From past experiences, I had learned not to let the negativity of ICU doctors get to me, but this time I felt like I should try not to question them too much. I just wanted the whole thing to be over with as soon as possible.

This was her first time in an adult hospital. Previously she had always gone to Texas Children’s Hospital where they had everything she needed. The nurses were great and did what they could to accommodate her needs as she is very small and needed pediatric equipment and supplies. But Dr. Z. never said anything encouraging. He was always blunt and slightly negative, almost rude. I always felt like he thought she would be better off dead , or at the least, that her long term care would be too much trouble. He tried hard to convince us to send her to a nursing home instead of taking her home. Now that she’s home, I understand why Dr. Z. acted like that. He obviously knew that getting help taking care of Grace outside of the hospital was going to be difficult.

Discharged with No Help

After weeks of awaiting discharge due to difficulties finding home nursing, we were being pressured by the hospital to send her to a nursing home. Because she had been inpatient for so long, we were told that she was at risk of contracting hospital infections, which she did right before she was going to be discharged. They put her on antibiotics and we waited.

During the previous weeks several different people at the hospital and with her insurance company had been trying to coordinate her home health services. Things were not going well. Because we live outside of the main city, in a rural, but growing, area, the nursing agencies claimed that they could not staff the case. ALL of them refused the case. Then someone mentioned an agency that we hadn’t tried. They accepted the case, but did not have any nurses available. Well here it is three months later and so far they have found one part-time nurse. But at this point, we were still waiting.

We thought that she was just as likely to catch an infection at a nursing home and told the hospital that we would take her home and care for her ourselves. They told us they would have to ‘ask the doctor’ if we could take her home! For a minute I was afraid we were going to have to fight them. The doctor called me and asked me some questions about whether we could take care of her. I assured her that I had been taking care of her by myself for 23 years. But honestly, I had no idea that it would be this hard or that it would take so long to get home health.

We received 3 (really 2) days of training in ventilator management and a few lessons on how to keep the trach clean and replace the inner cannula. We were also told that we would need to have the trach changed by a doctor, which I found reassuring since I was very nervous about the trach. At the time we were very stressed out and we did not think to question WHICH doctor would be taking care of the trach. This was a big mistake on our part.

Grace was delivered to our home in an ambulance at the insistence of the hospital. After she arrived, they brought her into the house on the gurney and put her into her bed at home . The respiratory therapist came to the house that day to make sure we had all the supplies we needed. Little did we know that the respiratory therapist would NOT be taking care of any respiratory problems. Her only job was to manage the ventilator.

Um, where are my instructions?

I was told not to come to the hospital the day of discharge because I needed to be waiting at home for the ambulance. This meant that I did not get to talk to anyone. The ambulance techs handed me a large envelope of paperwork. After they left, we were pretty busy settling in, but eventually I opened it to look for follow-up care information. After every thing that had happened and a 10 week hospital stay, I expected a long list of instructions.

When I only saw the words, FOLLOW UP WITH PRIMARY CARE PHYSICIAN, where actual helpful information should have been, I was taken aback. They did include some generic warnings about watching for fever, difficulty breathing or increased seizures. They did NOT include the names of any pulmonologists or ENTs.

There was a long list of medications in the packet, which was not helpful as there were no instructions on how long she should keep taking them or even if they were all necessary. Some medications are only used in the hospital and not really needed at home. And some of them were nebulizer meds that I had not been told how often or when to use, only ‘as needed’. I found out later from the pulmonologist that some of those nebulizer meds were only to be used when she was sick! To make matters worse, some of the meds were actually the wrong dose. This lack of information was also an issue for the nursing agency who was expected to write a plan of care.

Figuring it out

As days passed, it became apparent that I had a lot to learn as an amateur respiratory therapist and ICU nurse, because that is what I was am for all practical purposes. She had gone from having ICU nurses and nurse assistants and RTs and doctors taking care of her every need to being at home with me and John. Since we didn’t yet have a pulmonologist or ENT, her follow up appointment was with her Primary Care Physician, who is very helpful, but who was never intended to be the one who managed the ventilator or trach. Her demeanor at the visit made me a little nervous because she seemed concerned when I said that I didn’t have any help and no doctors for the new trach.

I joined a Facebook group of moms with trach kids, and I began to learn some practical things like using a Velcro strap with a clip to keep the circuit from pulling the trach out. This group gave me hope that life might return to a new kind of normal when I saw how they took their children with them even on a ventilator.

However, I also quickly realized that pediatric trach care is different than adult trach care and that these moms had a much better medical support system that I did. They were very helpful with my questions, but seemed shocked that the doctors had not provided us with certain information when she was discharged. For example, no one told us when to use the oxygen that was ordered or how much to give! The day she was discharged, they took her off supplemental oxygen, but didn’t even tell me. I found out from the ambulance technicians.

Searching for doctors

I started researching my questions online when they came to mind. I found a lot of information about life on a ventilator and trach care. I found videos that made it look pretty straightforward, but I assumed that the first trach change would be done by the pulmonologist that we were scheduled to see. But this new doctor informed us that trach changes were the job of an ENT, which we did not have. So then I began the search for an ENT. Of course I was clueless to the fact that, as mentioned in the introduction, most ENTs will not take a trach patient unless they perform the trach surgery!

When I made this unsettling discovery, I called the ICU and asked the what to do. I was told to contact a certain clinic in downtown Houston that was connected to the doctor who performed the second trach surgery (revision), which I did, and made an appointment for July 31. By that time she will have had the same trach for six months! I took the appointment and kept making calls. I even tried to get an appointment with Dr. Z., the ICU doctor who ordered the trach, but he didn’t take her insurance at his practice. We are still searching for another ENT that is both closer to home and willing to take her as a patient. (Update 6/2026: We did go to that July appointment and he changed the trach, but later were forced to find a different doctor when our Medicaid plan changed. This took a long time and now that doctor has retired! So I have to find a new ENT. )

Not only can we not find a doctor to change the trach or even someone to call when we have questions, such as what is this stuff coming out of her trach, we also do not have anyone to manage the medical supply authorizations or check her lungs. The pulmonologist that we saw last month was not as good as we’d hoped. He has been impossible to get on the phone and is not taking care of any of the necessary paperwork for her supplies. It has been a nightmare of making numerous phone calls with no results. We are currently praying that we don’t end up being charged for her ventilator rental since we have not been successful in getting him to send back the authorization for the insurance. We finally had it sent to the PCP. I am currently searching for a different pulmonologist. (Update 6/2026: we finally found a pulmonologist and he’s awesome.)

Practical issues

Having a trach is one thing, being on a ventilator is another. While Grace is no longer ‘sick’, she is still connected to the ventilator at all times. This is because during her hospitalization, the doctor (Zhu) did not think she could come off of the vent so she was discharged with it. Having a ventilator makes life complicated. Not only does it make travel, baths, sleeping, positioning, and diaper changes more difficult, her life is now at risk.

Being ventilator dependent means always having to be sure that nothing happens to disconnect Grace from the ventilator. The hose, or circuit, that connects the trach to the ventilator has multiple points where it can become disconnected if she moves around too much, or lays her arm on top of the circuit. Sometimes it pops off right at the trach even though it is tied on. We have discovered that she will be okay for at least a few seconds until the alarm goes off and we can put it back on. But we can’t be too far away.

This means that either John or I must always be with Grace so we can’t do the things we used to do unless we have a nurse, like go to lunch, go to church, go for a weekend getaway, go for a walk. The nurse that started in April has only been working once or twice a week, but we sure appreciate those days! She will be working more days starting the end of June and we are looking forward to that. (Update 6/2026: that nurse is still with us and she now works four days a week and we love, love, love her!)

Efforts to wean off the ventilator

When we visited the pulmonologist we explained that prior to this pneumonia Grace was breathing on her own without assistance or oxygen and that we would like to attempt the weaning process. It took many weeks and many phone calls, but I finally got the doctor and ventilator management company to figure out what to do so we could have someone come to the house and change the settings. Now we have two different settings, the normal setting and the weaning setting.

On the weaning setting, which is called Pressure Support, Grace initiates the breaths then machine gives her a boost of pressure. She initiates all the breaths herself, unlike the normal setting that gives her a minimum of 12 breaths per minutes. On Pressure support there are no minimum breaths, so if she doesn’t breath , it will set off an Apnea alarm. She does very well on this which makes me seriously question if she needs to be on a ventilator or have a trach at all. ( Update : Grace is still on the ventilator 24/7.)

All of this has made me question my decision to trust Dr. Z. in the ICU. We were in a very vulnerable position and dependent on his expert judgment. At the time I felt that we had no choice, but now I wonder if I should have insisted that they give her more time before doing the surgery and try harder to wean her off the ventilator. Not knowing if we did the right thing agreeing to the surgery can be very frustrating, especially when we cannot even talk to anyone about it. I try not to think about the what-ifs too much and I pray a lot.

Update 6/2026 . We have adjusted to our new way of life, but are still very limited in due to lack of nursing, and our wheelchair van is very old and needs replacing. It has very 300,000 miles on it and needs work , but we are hoping it will keep going if we don’t use it very often.

I still believe that the hospital did a bad job on the discharge planning , among other things, but I’ve moved past that and I can honestly say that I’ve finally healed from the traumatic experience of Grace dying and then being brought back to life, then having to go through all the things I wrote above. I’m thankful for God’s grace and mercy every day.