Wednesday April 10 was a very very long day.
The night was bumpy to start with. Manny was having troubles off and on with breathing. Then he eventually settled in.
The GI nurse practitioner did her normal stop by at 5:30 and wake me up thing. But thankfully she only said a few words (“We’ll keep status quo”) and left. Thankfully that was that. But hard to go back to sleep even though I was exhausted.
8am Doc came in to discuss the discharge plan. What the heck? I know. So Manny has a virus that can affect respiratory systems (his biggest weakness). He also has a high fever. (Hospital policy is 24 hour fever free before discharge … not just for Manny but hospital wide.) But I had a doctor appointment to get to. (More about that in a second.) So they made an exception and let me go. I thought they’d just give me a day pass and make me come back for the night but he did a full discharge instead. It’s risky. But we always color outside of the lines!
10:30 he had a 101 temp so we got a Tylenol “to go” and headed out.
11am picked up Jacob so he could go with me. Usually Kaley goes on doctor visits to help out but she was still having 104 plus temps. I need someone in the back seat to help with Manny. To keep eyes on him in case he is having trouble breathing. To help with handing him toys, etc. So Jacob was my guy.
1:30pm arrived at the appointment. What was this? We drove to Nemour’s Children’s hospital in Orlando. We were there to see the MDA neurologist. Now we already have an MDA doctor in Tampa … Dr. Fernandez. He’s awesome! He’s in Manny’s book and he even appeared on the MDA telethon spot about Manny. It was Dr. F who actually suggested we go to this new clinic as they have more access to resources than the local Tampa facility. So we went. In fact … Dr. F was with us! As was Paula from the MDA.
The facility is amazing … looks and feels much more like a hotel than hospital. I also love there was handicap van access parking. And one of my favorite features? A changing table in the bathroom that could accommodate larger children! You know those little changing tables for infants? Manny is getting so big that it’s hard to change him on them. I usually end up waiting until I get to the van to change him there. This table was big enough I could have easily put my 9 year old on it. (OK, yes, I’m weird! It’s the little things!)
The visit was a bit overwhelming in that the room was a bit small and many people coming and going. I didn’t know who anyone was or their roles. The whole thing was just a bit too much for manny and he LOST IT. I’ve never seen him fall apart like this EVER. He just screamed/cried for the longest time.
When I made the appointment, I had no clue it would be for a whole team and not just the neurologist. I am quite familiar with team clinics as that’s what we have for Zoe and the cleft team. Hopefully this team will eventually be as well run as the other teams I’ve participated in. But this time? It was a bit disorganized and chaotic.
I also had no clue that the majority of the time would be spent on conversations with the Physical Therapy and Seating specialists. And while those are very important, they’re not very high on MY personal agenda currently. They spent a great deal of time talking about his wheelchair (which has 2 broken pieces) and making sure his knees/ankles were aligned, that he was getting the right amount of PT, etc.
Now you have to realize … if Manny were a typical MDA type of patient, that would be precisely what I would need the most help with most likely.
But as you know, Manny is anything but typical. I’m concerned about breathing, airway, and eating. I’m concerned about not getting a central line infection and how to keep him off bipap. I’m concerned about making sure he gets the proper things in his TPN in the right amounts so he doesn’t crash. So the footrest that’s missing on his wheelchair isn’t that big of a deal to me. In fact, I’ve found it great to be honest! He can now swing his legs freely and has gained a lot of movement as a result. If the footrest were there, he’d not have gained that skill. (But what do I know!?!?)
Because I didn’t know this was a team meeting, I made another misstep. If I’d known, I’d have insisted GI personnel be present at this team meeting. Why? Because the vast majority of Manny’s big issues are GI related. I can’t tell you the number of conversations with GIs that say it’s neurological and the number of neurologists who insist it’s GI. The truth? It’s BOTH. They can’t be separated. And so GI should have been there.
But with all that said … the Neurologist got a thorough history and will start to devise a plan. I think most doctors are used to being able to hear a patient history and immediately have a starting place. But Manny requires a bit more thought. So we have the hope of a plan! I’ll be getting some records, he will be talking with some experts. We will converge our thoughts.
Now meanwhile, Paula and Dr. F were with me most of the time. It was so great having them there. Paula because she is like a sister and she was emotional support just being there. Dr. F because he could corroborate my story. Manny’s story is way off the beaten path and it’s difficult to even believe. Many doctors don’t take patient histories at face value. So it was great to have the Doc there to shake his head yes with the whole story! :)
There were some funny things that happened but I’ll have to save them for another time.
After a long 4 plus hours, we drove home. By the time I got home it was after 8pm. The kids were still up waiting to see me and Manny. As I got out of the van, Sam greeted me with tears in his eyes. He said he had gotten in trouble at school. Knowing this was very unlike him I asked for the story. Long story short, the teacher had sent home a note about a homework assignment she wanted the parents to do. It says on the note, “Please CONSIDER doing this …” Well it was due on Wednesday and uh … I hadn’t done it.
Apparently she yelled at the kids in the class whose parents had not turned it in on time. She basically told them that we must not love them. She guilted them saying that no one in her life had ever let her down and etc etc. Sam was DEVASTATED! I told him I would handle it.
Then it took 2 hours to get all the kids calmed, medicated and tucked in bed!
And then I wrote the teacher a letter. I didn’t FEEL calm and patient, but I wrote a very kind letter explaining the tears from Sam and a few of the behind the scenes issues of our life. I also completed my homework assignment and put it on Sam’s backpack for the morning.
Then I opened the mail and got some bad news regarding a bill we supposedly owe that’s a LOT of money that we don’t have. Hopefully Dan has the energy to fight this because I just don’t. And I can’t let them garnish wages. Just another stress I do not need.
Manny had a very very rough night of sleeping. It’s likely that he would have been better off in the hospital where he would be monitored closer while I slept (ha, like I slept). But it’s that gray area. So Dan slept on the couch and I suctioned and repositioned all night … often.
So that’s my very long day.
As I write this, it’s Thursday night. I’m beyond exhausted. I did 11 loads of laundry, 3 loads of dishes, umpteen phone calls, multiple emails, etc all while taking care of Kaley who is still very very sick. And Manny who needed constant suctioning all day. Makes me a bit concerned about what tonight will bring.
Oh… and Zoe and Sam now both have headaches … the way it started with all the other kids. (sigh)
Calgon … take me away!