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.

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? 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.
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