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. .
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 gallbladder.com 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 did...at 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.