My father was rushed to the hospital

[Pooja Dhamor]

Hi, my father was diagnosed with probable ALS in October 2021 - this diagnosis was later confirmed. He has been on Riluzole since October 2021. He has lost complete mobility in upper limbs and has been having breathing, swallowing and speaking problems (among other issues) for quite a few months. He has been using BiPAP for almost a year (used only in night initially and now uses throughout the day). In light of his swallowing issues, in consultation with his doctors, we got him an NG tube day before yesterday (on December 24). He was extremely uncomfortable with the same and found it suffocating, but he let it go assuming that it might need some time to settle - however, he asked us to remove it ASAP at around 3 AM (after 6-7 hours).

After removing it, he went to sleep within 5 minutes. However, he has been sweating a lot ever since. Today, when he was feeling suffocated, we checked his pulse and oxygen using oxymeter and it was in 90s and 120 respectively. My brother tells me that at some points, it even dropped to 70s (when he walked for a minute to go to washroom and get back). He was then rushed to hospital and has been put on oxygen with BiPaP. The nurse there informed us that his blood oxygen is quite high.

We have not gotten a private room - he is in the ICU with 7-8 other patients, no relative (relatives not allowed near him in this room), with no mobility while laying down and extremely muffled and slurry speech. He feels very anxious without my mother around him. The hospital staff has not let anyone near him. At this point, it just seems like I am venting aimlessly. My question was if anyone has any advice on what is the best way to go? what is next? what are the questions we should ask our doctors and discussions to be had? any insight will be very helpful!

Thanks for reading this huge message.

 

[lgelb]

I do not understand why an NG tube (which is indeed very uncomfortable) was placed instead of a permanent gastrostomy tube, which is placed in the stomach. Then blended food or a commercial formula is placed in the tube using a syringe or pump, for feeding.

Supplemental oxygen is usually not good for PALS because it accelerates the buildup of CO2, which is harder for PALS to exhale as the disease progresses. Likely if his O2 is dropping when he's not on the BiPAP, he needs it full time, and possibly some settings changes since the disease has progressed.

I would ask about the gastrostomy tube, usually placed in a radiology suite. Perhaps the hospital he is in does not know how to do it or is not familiar with ALS? He should be on BiPAP during the procedure, which usually takes only a few minutes.

I would also make sure he has the kind of portable BiPAP that he can stay on even when he is walking (PALS who still walk often have it on a cart or tray rolling with them).

I am not clear on what they plan to do, and it sounds like you aren't, either. I would really want to understand if this is the best place for him. I certainly agree that it is best for him to be with your mother. The sooner he is stable and can go home, the better.

 

[Pooja Dhamor]

As an update, he was moved from the previous hospital to a different hospital (given that they seemed clueless and we felt that the care provided was not adequate esp given he needs a close family member to communicate his needs and no attendant was allowed with him at all). After taking him to a different hospital, the pulmonologist there said that we could take him home and should connect his bipap with oxygen. My father was extremely happy about going home and was absolutely done with the hospitals and admissions, and communicated to us that he does not want to go back to any hospital for any sort of admission, no matter what.

At home, with constant bipap too, oxygen levels keep dropping numerous times. At one point, it came down to 30 and we were shit scared - thankfully, he keeps battling and recovering (ik he is a fighter). Doctors have now revised the prescription and injections to fight infection. Home care team has been called in. He was doing so well (given all things) throughout the day today - however, his SPO2 dropped again at night when we changed his O2 concentrator's flow setting from 1.5 to 1.

We want a PEG tube but that procedure also requires him to be at a hospital and he is not very keen on it unless his infection is gone (or reduced enough to stabilize SPO2). We are arranging a meeting with his gastrologist soon to discuss these aspects on Monday (and possible timelines given his fever). Past few days have been v scary. Praying that things get better.

 

[Mary2]

I am thinking of you and your family and hope your Dad has improved since you posted yesterday. Do you know if the home care team is giving injections that are antibiotics? Was your Dad able to have a chest x-ray at either hospital?
I hope your Dad is comfortable and it certainly is best if your mother and you are with him.

 

[Pooja Dhamor]

Hi, sorry for the delay in response. The team has been giving antibiotic injections, yes. We did have x-ray done at both the hospitals - however, nothing unusual was highlighted to us by our doctors who read those x-rays. He still doesn't look v comfortable, but feels that he is in a far better place at home than he would have been at any hospital. We try to have one of us (my mother, brother or me) with him at all times.

 

[Mary2]

Interesting the medical team didn't comment on the chest x-ray. Does the medical team say he has pneumonia?
Is he doing any better. I know you and your Mom and brother are doing every thing you can to keep him comfortable.
I know it is very scary. I am praying for you, your Dad and your family.

 

[Pooja Dhamor]

Thanks Mary and Igelb, my father doesn't have pneumonia. We had to get him admitted again and this time he got his tracheotomy done (which is connected to Philips Triology ventilator). He is far more comfortable breathing now.

He has currently been put on SIMV mode. We are so lost around ventilator settings, when to change and how to change. Doctors had told us that nursing staff would explain it all to us and nursing staff seems just reluctant (perhaps because it increases the chance that we would be more dependent on hiring them 24*7 for increased time). Anyway, is there a way/ page/ link of resources where I can know and understand about ventilator settings and how to know when to change and what to change it to.

Unfortunately, doctors here aren't v available over call/ home visits in emergency cases, especially at night. My father has made it very clear that he doesn't want to go to hospital again (and was very mad at us for taking him to hospital last time even though he agrees that the visit lead to trach which is more comfortable). This is all the more the reason that we should know which setting should perhaps follow which setting. Any help in this regard would be very helpful.

 

[lgelb]

SIMV is often the most appropriate mode for PALS with new trachs. The two settings that may most determine his comfort are the respiratory rate and tidal volume. If he feels that he is getting too much air, you reduce tidal volume (TV) and vice versa. The same is true for respiratory rate (how many breaths per minute the vent delivers).

If you PM me his current settings, his height/weight/age, any previous lung problems, and how he is feeling with the settings, I could be more helpful.

 

[Jimi]

you may find that after a month or two of him getting used to it and finding the comfortable settings that you won't have to change it. After about a month at home, I had it dialed in. Haven't had to change anything in two years. The first month is rough getting your body used to it. But it gets better

 

[rao]

glad your dad has been trached, huge qol, just gotta avoid pneumonia. Ie proper hygiene during suction, caregivers wearing mask etc