Tuesday, July 15, 2014

Back in the Hospital

After nearly five years of good health, Matthew is back in the hospital.  As  you may recall, Matt's last major hospitalization was in November of 2009 when he contracted the H1N1 and a viral pneumonia and nearly died.  Since that time, I added Now Foods Organic Coconut Oil in 2010 and switched him to a blenderized diet of whole foods, mostly organic.  While he did get his Vagus Nerve Stimulator replaced in 2012, he's been pretty much hospital free for for five years.

Recently, he started running a fever on/off and basically just looked poor, although his oxygen saturation numbers at home looked good. When Matt's well, he does not require any oxygen however earlier this year we saw an adult pulmonary doc who recommended two liters of oxygen at night since an apnea test revealed Matt's oxygen dropped low at night. I still do nebulizer treatments a few times a week but other than that, he's in pretty good health. I called our new pulmonary doc and they asked to bring Matt to the emergency room. Essentially, they started him on oxygen and admitted him although they weren't sure what was wrong. His belly was distended however an xray revealed nothing. His bowel movements and everything are regular.

Matt continued to deteriorate breathing wise and a chest xray revealed a partially collapsed lower right lung. On Wednesday of last week, they did an abdominal ultrasound and determined that Matt had, "acute cholecystitis" which is a complication of gallbladder. Matt has never had gallbladder disease. While it can be diet related, he does not have gallstones and is diet is excellent so it was more like the gallbladder wall thickening and sludge like stuff. They put a drain in and drained his bile. Acute Cholecystitis is not uncommon in the general population. In Matt's case the gallbladder infection pushed his diaphragm up and collapsed his lung. He began vomiting and that was problematic and very risky since Matt can't swallow and he can't move himself. I stayed by his bedside to keep him from aspirating. They finally had to put him on a ventilator since the vomiting episodes were more pronounced. It was very risky and a terrible time overall. He was vented for two days and then removed although we are still in the ICU. His breathing isn't too great and he's on/off the bi-pap machine. He's on mostly at night or until he gets tired. 

This hospitalization is a bit unusual and Matthew has not been following a normal recovery course. I can't put my finger on it but something isn't quite right. He is on four antibiotics (Clindamycin, Vancomycin, Flagil and Cefazime) however none of them seemed to make a difference at first (He was on Zithromycin and the other three initially but it was replaced by Flagil). We see the Section Chief of Adult Pulmonary & Critical Care who is an expert in respiratory failure and mechanical ventilation. I think we had the right doc and his treatment plan is not different than the treatment at the children's hospital but Matt's not responding as fast so I am not sure if it's just because his diagnosis is a bit different or what. I do like him though and think he's done a good job.

This is our first hospitalization at Big Academic Medical Center state of the art Adult Hospital. So far, I am not very impressed. The ICU unit is very short staffed. I haven't met any of the ICU nurses that have been there longer than 7 months. Their skill level seem fine but they are so busy that they aren't around and meds are constantly late. As in very late.  Due to Matt's vomiting, I asked Ped Neuro Doc if we could switch the seizure meds to IV. Matt's on 6 seizure meds so 3 were switched to IV and three were stopped. The nurses were very late and yesterday, his IV seizure meds were almost 5 hours late. Matt seized all day and I paged the neuro doc and calls weren't returned. I finally asked for some Ativan.  The night before I needed Ativan and the resident had no clue what is was or what the dose should be. At the Children's Hospital, there would be a sheet over the bed that listed all of the emergency medications for the patient and the exact dose for that patient based on his weight. I told the resident that I believed the half life had worn off of the seizure medications hence the increase in seizures. I told him I paged Ped Neuro Doc but never heard back.

Ped Neuro Doc hasn't been around much.  He's functioned as our primary for many years due to the complexity of Matt's issues. He's always done an outstanding job. I've paged him on/off in the past week or so and no pages have been returned. He did stop by the other day and told the nurse it was a social visit so I am guessing perhaps I am not supposed to call a pediatric adult for consult in the adult hospital.  I did have a conversation with our current attending if it was o.k. to consult him and he was totally fine with it so I am not sure what is going on. I called Ped Neuro Nurse this morning and left a voice mail for Ped Neuro Doc to call me and I'll ask him about Matt's seizure meds and the transition back to pills from IV and address this issue of the call backs, etc. I am not clear if he wants to be involved, if it's proper for him to be involved, if it's a payment issue (meaning he doesn't get paid if he visits us in the adult hospital) or what but I am very uncomfortable right now. 

The adult hospital isn't very patient friendly and some of the policies don't make sense. With regards to the rooms, there aren't any beds for family members so I have to sleep in a chair or on the floor. I am choosing the floor since my legs hurt to sleep in a recliner. In the children's hospital, they had a sofa type bench that flipped over into a bed at night. In the bathroom, the bathroom sinks have really tall faucets that slop water all over. They also are just sinks hung from the wall and don't have any ledges so there isn't any place to put anything. They put the towel bar over the toilet (no lids) so when you flush all of that bacteria that sprays up can get on the towel. Nice!  None of this was thought out very well. The children's hospital was designed much better...if they just did what they did over there, it would have been a great improvement. Instead, they put money into a skybar cafeteria with multiple food vendors. You can sit and eat up there and look out over the city.  It looks more like a nightclub but hey, which would you rather have, a great ICU room and great medical care or a well designed food court?  Their priorities clearly were out of line for this hospital.

For infection control, they have some odd policies.  They don't use diapers in the ICU so basically the patients shit all over the beds. They claim it's for skin breakdown but I told them there isn't skin breakdown if you change the diapers.  They claim they need to monitor the output and I suggested they weigh the diapers and they say they don't have scales. They use a condom catheter (non invasive it just stick on the end of the penis) to monitor urine but bowel movements are all over the sheets and bed. The nurses don't clean him very well and I brought wipes from home and diapers and they will use the wipes and I'll help them clean up however it's hard to get Matt cleaned up because stool is everywhere and he's hard to move on these hospital mattresses and when he's on a ventilator. I told the nurse that if they don't clean him up he will get skin breakdown. Disposable diapers would be better since any infections would be disposed with the diapers. They also use flat sheets that move around the bed so the mattress isn't getting disinfected at all.

The rooms are dirty. I've been there a week and nothing dusted or disinfected at all. I had to ask for the floors to be mopped so I wouldn't fall. I had to ask for housekeeping to come. They started Matt on formula with a feeding pump since they have to go so slow. This pump was downright filthy with slop all stuck on it. No dusting has been done in a week. When they did clean the toilet, she sprayed and slopped water all over. When I went into the bathroom, she said it was "wet" and I essentially had to wipe everything down since it looked like she just sprayed the entire toilet with water and cleaning solution and forgot to wipe anything.

Nurses are all new and while most ICU nurses only have two patients, when they go to lunch, they have to cover for each other. All weekend, nurses kept asking each other for help and they were denied since our nurse was covering four rooms already. I was asking one nurse why everyone was new and she said it was a great hospital for "training". I am guessing they come here to learn then leave due to short staffing.

They also won't allow me to give our home seizure meds for Matthew. It's an Act of Congress to try to get them to allow me to give home meds. I brought original containers with home meds and they still refused. I don't like them giving different brands of seizure meds so I like to give him them myself. The pharmacy is notoriously late for getting meds up to the floor so you couple that with the nurses being behind and it's a total disaster. Instead, Matt got to have a ton of seizures because they don't have their act together. They had an administrator see me since I wanted to give meds and bottom line is they don't allow it. I am not sure if we'll come back here anymore. In the past, our doc would sign off for me to give home meds and I could do it. The attendings don't have a problem with me giving meds but pharmacy won't allow it.

Matt's in isolation due to a past MRSA diagnosis. As a result, the isolation policy is very restrictive and varied in it's enforcement depending which nurse  you get.  At the children's hospital, I got a parent tray for meals. I could bring food or eat in the room since I was staying with Matt. There aren't any parent trays here and they won't allow me to bring any food in the room. Since I don't feel comfortable leaving Matt alone, since they have no staff, and because I am suctioning him frequently, I don't eat all day.  So not eating all day, having to sleep on the floor and watch the kids seizing while meds are late and docs won't answer their pages, aren't endearing me to this new state of the art hospital.  On top of that, I asked for water the other night and the nurse wouldn't allow it in the room due to isolation procedures. She could bring me water but I'd have to drink it outside the room. If you want to eat anything, you have to go outside the ICU into a waiting room to eat.  Matt's not stable so I am afraid to leave him alone. It takes 15 minutes or so to go get food and I don't want to leave him. There aren't any refrigerators available. At the old hospital, they had refrigerators in each room. The water outside the room is a bit much. Can you imagine that? Seriously...you can't drink water that they get for you from their pitchers?  Nurse Alisha said they don't want any bugs (meaning infections) brought into the isolation rooms from products from the outside. I would think hospital infections are going to come by having such a dirty hospital and their lack of diapers.

Scott (Matt's Dad) is helping out a lot.  In the past, I'd stay with Matt all week and he'd relive me on Sundays. Now he's coming every other day to allow me to sleep at home since there aren't beds here.  He works the next three days (he works 12 hour shifts) so I'll have to sleep on the floor at night. It's been great to have his help.

As for Matt, the seizure meds were given on time this morning. The Attending said we'll be in the ICU a while yet, Matt has to be able to breathe at 40% and we aren't there yet. He works pretty hard at time however I am hoping that once we get the seizure medications administered on time that perhaps Matt's breathing will improve once the antibiotics kick in. If not, they'll have to re-vent him. Matt's been vented some 7 times in his life and when they removed the vent, this time was the scariest...he struggled a lot and it was really frightening.

Overall, I am depressed and ready to go home. It's hard when you know you are a long way from getting out of there. Thank you in advance for your thoughts and prayers for Matthew.

6 comments:

MichiganMom said...

I am so so sorry this is happening to you and your dear son. We have also recently transitioned to adult care and it has been so very hard, we have had one tough hospitalization, but nothing like you describe. I wish strength for you. You are a wonderful mother and you and Matt will be in my thoughts every single minute. I have read your blog for years, but can't recall if I ever left a comment before, but this post has moved me so much.

Jean(ie) said...

Sending you, your ex-husband, and Matt lots of love and prayer. I've been following your story for many many years(my nom de plume was Lois G.). Sorry to see this pop back into my feed.

Please keep us posted on your son's progress. I will keep you all in my thoughts and prayers.

Hugs to you for dealing with the unfavorable conditions. I'm shocked that the resident had no clue about Ativan. That is a drug as basic as penicillin! Oh my...

Kathy said...

I've been a blog reader for a long time. I'll keep you all in my prayers for a quick recovery.

Our hospitals have become horrible. You must have an advocate when you're a patient or you have no hope, and your advocate better be strong-willed and ready to put her foot down. I feel for you after watching family members/friends struggle during hospital stays.

I cannot believe their policy about patients and diapers. Is this the Middle Ages??

Good thoughts to you both.

RamblingRound said...

Just checked in to check on y'all, and I am so sorry that Matt is sick. Things really change with adult medical transition. It seems that a lot of the adult medical personnel just aren't very familiar with how to treat patients who have severe disabilities. My prayers for his recovery and your health as well!

Canucker said...

Hi Dream Mom,

Been a few months since I last checked in and I am so sorry to hear about Matt's illness and hospitalization.

Brings back lots of memories for me, when Joe switched over to the adult hospital. It was similar to your experience...
- no diapers in ICU
- not being allowed to give Joe his seizure meds from home, which meant feeling very helpless watching Joe seize because his meds weren't up yet from pharmacy when I had a bottle of Depakene in his supplies I always brought that could have been given to him. I was actually warned that if I gave the home meds to him, I would be asked to leave the hospital.
- lack of cleanliness...blood drops in the bathroom that were still there 10 days after I noticed them

I could go on, but you pretty much summed things up in your message.

Hope and pray that things turn around for Matt and you get home soon.

Dream Mom said...

Thank you all for your comments. It brought me great comfort and I read many of them over and over. You were such a blessing to me and I can't thank you all enough for taking the time to comment. It helps so much having people who have been in my shoes and who understand.

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