Friday, July 25, 2014



We finally went home last Friday, July 18th. Matt was hospitalized from July 7-18th.  We were discharged right from the ICU, a hospital first.  Typically, we are required to transition to a hospital floor first.

First, I need to thank you for your comments on my last post. They meant a lot to me.  I think the hardest part of these hospitalizations is feeling like you are alone in your battle to advocate for your child and to get them the best care. Hospitals don't make sense and the transition to the adult hospital was very different. It was great to hear that your experiences were similar and that you had to advocate as well.  I can't begin to tell you how many times I read your comments over and over since they brought such comfort to me. For that, I am thankful.

The hospitalization was challenging on a few levels. The first challenge was that when Matt was admitted from the ER to the hospital, they admitted him to a regular floor and not the ICU. While they had oxygen for him, he needed more. He struggled and breathed heavily from Monday afternoon at 3 p.m. until 11 a.m. Tuesday morning. I had paged the doctor on Monday and was told to bring him to the ER however they should have hooked him up sooner to the Bi-Pap or a different mechanism. I paged the doc at 6 a.m. on Tuesday morning and said that Matt was going to crash (respiratory failure) and asked the doc to see him. He came around 10:30 a.m. Tuesday morning and immediately put Matt on the Bi-Pap and called the ICU team to evaluate and Matt was admitted stat to the ICU.  The doc did ask me to text him Monday night, which I did, and he responded, however the ER docs didn't make the right call and admitted him on a regular floor. I knew Matt was breathing hard but I kept telling him to hang on. I felt a bit like a failure not being able to get more care for him since he was working so hard. It's not easy sometimes.
We had a few more snafus during the visit. Matt began vomiting from the gallbladder infection and they had to put the ventilator tubing in. They asked me to leave the room. I can't begin to tell you how wrong it felt to tell Matt things were going to be o.k. and that they were going to help him, knowing that they were going to put the ventilator tubing in him. Honestly, I don't know how much more I can take. The kid has been vented some seven times. It never gets easier. I left the room feeling like crap. Of course, he needed to be vented at the wrong time of day, when fewer people are around, like 4 o'clock in the afternoon. I called my Mom who is in a nursing home and I was just sobbing in the hallway far away from the adult hospital. I left and went to this other building because I didn't want to hear him struggle and because it upsets me so much when he's on the ventilator.  My Mom isn't doing so well either so it was a tough call. They took forever to get that tube in and I was sure he had died. I came back to the room, some 40 minutes later (I had asked them to call me when they were done.) and they were cleaning him up (diaper change). I was angry they didn't call me. They honestly have no idea what it's like on the patient side sometimes.  Normally, it takes five minutes or so to put in the tube; so this was awful.
If that weren't enough, they had to start more IVs after that and of course he's a hard stick. They had this one guy in there for some forty five minutes trying to get this thing (of course, he was their best guy) and he went through this blow by blow talking his way through this. I almost puked. Nothing stresses me more than medical talk and I hate the sight of blood.
This was probably one of the worst days of the hospitalization-so many things were going on and I just felt terrible for Matt. I kept thinking about why Matt has such a hard life when other guys his age have such great lives. I felt like it wasn't fair, you know. 
Scott (Matt's Dad), was really helpful this hospitalization. Typically, I stay with Matt 24/7 Monday through Saturday and then Scott helps on Sunday's. This time, because there wasn't any bed in the ICU, Scott alternated nights so I could get some sleep. He didn't help on his work days but that's o.k. because he works 12 hour shifts. Anyway, he stayed with Matt and the next night I came down and one of the nurse's came in to talk to Matt. I thought she was our nurse for the night however she was just coming in to talk to Matt. She told me how he opened his eyes for her last night (night of the vent). Well, I was rather shocked because Matt's eyes were swollen shut by that time. I should tell you that this was a beautiful filipino nurse and when Matt heard her sweet voice, that kid opened his eyes, lol.  I thought to myself that there is a God. After the day Matt had with the ventilator and everything that could have gone wrong, God blesses Matt by giving him the nicest, prettiest nurse he could and Matt loved it.  Sometimes, it's the little things that go a long way.
One of the next biggest challenges was extubation. A few days later, Matt was more responsive and his oxygen saturation numbers were better. I can usually tell when it's time to remove the ventilator because Matt has more "awareness" of the tubing and when he wants it out, he wants it out now! He'll cough until he gets it out. I explained that I thought it was time to remove it. There is never a perfect time however I usually know when that is. It's a judgment call and you never know how it will go.  I explained this to the resident and he decides that he'll be in charge. I said no, we need an Attending Doctor here. This is the same resident who couldn't draw blood from Matt for a simple blood test and had no clue how to suction Matt properly without gagging him so I knew he wasn't going to be "in charge". Honestly, after 22 years of residents, I don't want to see another one.  I didn't sign up for that. I know that sounds harsh however Matt doesn't need to be the guinea pig for residents for over twenty years. It took "hours" for the attending to show up. When he did, he asked a million questions so I knew he was nervous. He wanted to know if they ever needed to put the vent tubing back in after removing it.  I told him that Matt needed to be side lying for it and I held Matt's back so he wouldn't roll back and choke. Once the tubing was removed, Matt had an unusual response, for lack of a better term. Matt began to snort/snore while he was breathing. This went on for a long time. I had never seen that before. I should mention that earlier this year, before the doc prescribed night time oxygen, Matt used to have difficulty breathing at times and would make these noises. It's not a snore like sleep apnea but rather I would describe it as more of an impairment. Anyway, this went on for hours and it took 2 days of alternation between Bi-Pap and the various oxygen masks before he could breathe better. 
 This is a picture of the bile drain that was placed in Matt. When he had an infection, they put a drain in the gallbladder to drain the bile. The reasoning is that they don't want any more bile to become infected. He'll have this drain in for a month and there is a bag attached that I need to drain every day. Of course, they did not give me another bag. Just one for one month.  Okay?

The biggest nightmare of the hospitalization was the "home meds". I asked to give home meds in the ER and that was fine. Then when I got to the floor it wasn't allowed. Pharmacy came to visit me some four times and an administrator came only to tell me it wasn't allowed. Then after we were in the ICU it was allowed for two days. Then it wasn't allowed anymore.  Then when they didn't have the proper seizure medications, Ped Neuro Doc told the pharmacist to get the brand name seizure meds from me so I was allowed to give them for a few days until the hospital decided I couldn't give them. Of course about ten people came to harass me and tell me this, one after another. Finally, I called the New Attending Doc and explained the situation. He said it wasn't allowed and we had to give generic meds. I asked him to tell the staff not to keep coming to me and he said he would however four more people came to argue and tell me not to give the home meds WHICH I WASN'T GIVING. Seriously, they were yelling at me and I wasn't giving them.  I couldn't believe it. Of course, Matt was seizing like crazy and I had the brand name meds. And of course, the pharmacy was always late with the meds. As in five hours late one day! Really. Does a patient have to die and does someone have to sue them before we are allowed to give a patient brand name meds when the pharmacy does not carry them?  It was horrible. So thank you Canucker for sharing your experience with this and thank you all for  your comments.

I took this picture while we were waiting outside for Scott to pull around. We were discharged from the ICU and told to resume our normal routine. Matt didn't not go home on any oxygen, even though he was on 3 liters the day we were discharged. Of course, I put him on oxygen the minute we got home! He did fine.  As for the gallbladder, no instructions were given other than draining the bile. They do not believe his case was diet related however I went online at to see what foods might aggravate the gallbladder and tweaked his diet. I would have thought they might give me some guidelines, lol.  As for seizures, he's fine. I was able to resolve the issues with Ped Neuro Doc at the hospital and once that was done, he was involved with Matt's care like he normally is...he does a great job every time. I honestly hope he doesn't retire because I don't know what we'd do without him.

Moving forward, I doubt we'll come here again. We'll see Ped Neuro Doc but I am going to look for a new GI doc and a new Pulmonary Doc at a different hospital.

Matt's been out of the hospital for one week now and is doing well. Breathing is fine. Ped Neuro Doc had me reduce the volume and liquids for Matt which I first he wasn't urinating so I had to add some liquid and volume and now he's urinating fine. The best part is seeing Matt's smile again. He's still a bit quiet and he's lost some weight but he's smiling and his eyes are sparkling again. Life is good. I hope it will be another five years until we need to go back again.  Thank you again for your lovely comments. You helped me so much.


Earl said...

What a nightmare! Your last two posts reinforce the importance of having a strong advocate during hospital stays. I've admired your toughness and organization for many years. I salute you for your work of love.

Maybe his Filipino nurse noticed his tattoo and likes a man who loves his Mom. :-)

Bless you, DM.


Sarai said...

I'm so sorry you and Matthew had to endure this. I have been a nurse for many years, and I cannot imagine refusing to put a diaper on a patient, especially if family requests it. It is typical for a long term care giver to be running the show for care of a severely disabled person, and you asked for nothing that couldn't be done with some work. For example, if a patient (or caregiver) insists on a home med, there is a procedure doctor to order "home med" and for pharmacist to formally identify the med, and then it is given. I'm shocked they valued pt satisfaction so little.

I'd be looking for a non-acedemic hospital with hospitalists and intensive care docs providing the care. Too many cooks (and inexperienced ones at that).

God bless, hope you can find more reliable hospital care.

Kathy said...

I'm glad to read that Matt is out of the hospital after the less-than-stellar care he received!

When I commented on the earlier post, I didn't want to say this part .... you have to throw the "who do I have to sue???!!" fit sometimes.

Mine came at the very end of my mother's life before she agreed to hospice. The hospital simply stopped caring. Meds were late or delayed, staff argued with us, and she was not cleaned for days.

I finally had it. I caused a huge scene at the nurse's station, including shrieking "what kind of death squad hospital is this?!!" I demanded they clean her immediately, bring her meds, etc.

Not my finest moment but, not surprisingly, she received good care for the next two days before she died. The nurses glared but I truly did not care.

You are his best and strongest advocate and the hospital staff cannot gang up on you about home meds. That is disgraceful.

I hope he continues to improve.

Anonymous said...

So happy to read that Matt is home.
You are a hero. Matt's and mine. Your posts should be read by every hospital administrator and medical school faculty member. We are all told that big academic medical centers are the best places to go but my experience is similar to yours. Lots of people passing through, few with any real connections to one another or the patients. Matt deserves better.

Dream Mom said...

Thank you Earl. Your comments always make me smile.

Sarai-I requested a diaper and was repeatedly told that it was not their policy and that the patient would get "skin breakdown". I said that wasn't the case if you change the diaper. They used a Texas catheter (sticks on the head of the penis and gets caught in the public hair and pulls on it)for urine and let them poop on the sheets. Disgusting. I wanted a diaper and they told them they could weigh the urine since they needed to "monitor" it. They claimed they didn't have any scales.

As for the Attending signing off, that's how it was always done at the Children's Hospital and there wasn't a problem. At this hospital, they confiscate the meds I've paid for and won't allow me to give them. Matt's meds cost over $4,000 a month so I don't want them taking my meds. I want to give them and keep them and they won't allow it. They claim that they'll be in trouble by not scanning the meds in each time it's given. That's what New Attending Doc told me.

Yes, I think it's time to find a new hospital. Matt was in isolation due to a past MRSA infection from 2006. They never cleaned the room, allowed him to shit on the sheets (which of course isn't sanitary and would promote infection since it's not in a disposable diaper). In addition, on the first day when the pharmacist came to see me, they asked me for the home meds and took them. I only gave them a 2 day supply. Once we were discharged, I got a call 2 days later to say that they had some meds of ours and wanted to know if I wanted them. I said no. I have no idea how clean or whatever this stuff is since our room was filthy. If they are worried about the spread of infection, they might try disposable diapers, wiping the floors and rooms down with disinfectant, not putting the towel bar directly over the bathroom toilet so that whenever it flushes it splashes on the towel bar, etc. I could go on but trust me, they have no clue when it comes to infection control.

Kathy-I am sorry to hear about your Mom. Sadly, many of us caregivers have those kind of moments. I try to think about how those situations can be avoided but honestly, I think we react appropriately and we react like most sensible people would.

Anon-I am not sure the Administrators really care. They are just there to avoid a lawsuit, not to resolve anything. I felt harassed so many times in this hospitalization. I felt like a prison inmate, not a valued part of the care team. I slept on the floor since there wasn't a bed, one of the nurses refused to give me ice water in a pitcher from their facility because we were in "isolation". She said I'd have to come outside the room to drink water. I was not allowed to eat in the room and they were so short staffed if I left Matt's side, he would have choked on his secretions. The place was dirty and cleaned once in two weeks, per my request. They did take the trash and laundry out daily, but that isn't "housekeeping" in my book. I think the redeeming value of an academic medical center is that they see complex cases and while you may survive, it may not be pleasant. We had much better service at the Children's Hospital and we loved Ped Neuro Doc. He always took good care of Matt/me and all of his patients so I think the right doc helps a lot. In this case, this was my first hospitalization with this New Attending and I'd need a little more time to evaluate him properly. He seems to make good decisions however I don't think he was particularly sympathic to the challenges I was facing with regards to how I was treated.

Anonymous said...

Dream mom,
I did not look at your blog the past few weeks and was sorry to see what you guys endured and am so grateful and happy that Matt is ok and you are safe and home. Now you need to get Matt a little more perky after what he endured. And of course you must be so very worn down every which way so give yourself some extra TLC. I'm the lady who advised the baby monitors for Matt so you are able to sleep better. The people who gave you advice seem knowledgeable. I'm not sure but at the children's hospital in my city there are many adults who get to come in as patients even when they are adults. Are you absolutely sure Matt isn't able to go there if he ever ( God forbid) needs this kind of care again. His ped neuro was there for you. Would he have any ability to admit Matt if he needed hospital care. We have a relative with a rare disorder who is in his forties now and just began going to an adult hospital. In his twenties he still went to the children's hospital My prayers and good thoughts are with both of you. You are a magnificent mom. Marcy

Dream Mom said...

Thanks Marcy. Matt is coming along pretty good; recovering much faster than he used to when he was hospitalized all the time:)

As for the children's hospital, Ped Neuro Doc could still admit him there however he is mostly handling Matt's neuro issues now whereas before he functioned more as Matt's primary doc. Last year, his wife was in an accident and is in an extensive rehab situation so he's not as available as he used to be for us since he's focusing (appropriately) on neuro issues. He did get involved in this hospitalization and that helped tremendously.

I have been looking for a different hospital now but it's hard to figure out where to go with his complex issues. I only have two hospital choices, one of which isn't in a great area and the other one, is a pain to get to. It's very stressful trying to figure this all out again. Thank you for stopping by and remembering us:)

Canucker said...

Dream Mom, I have friends in your area who have a 35 year old son with lissencephaly. I can try to find out who follows their son and get back to you with some possibilities.

Dream Mom said...

Thanks. That would be great.

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