It's Tuesday morning and Day 5 post op which means discharge day. There is one more in patient physio session at 9am this morning with Erica who will also see if Dana is fit for discharge.
I am woken up this morning by a female student doctor who comes in to Dana's room at 6.30am, she stands while I wake myself up and I start talking about how Dana is feeling, asking her questions. She replies I have to repeat my questions to the doctor who will follow in 10mins or so as she doesn't know the answers. Yes cute doctor will arrive in 10 mins giving me time to at least get out of bed. He is happy with Dana's progress and happy to discharge her.
We get ready for physio and go to the 4th floor again taking the staff lifts. Its great Dana has Erica as she did her pre op physio assessment so has a good understanding of Dana's range of movements before the operation. We register at reception and take a seat in the waiting room where there is a TV and a number of colourful toys which kids can touch and move objects around, really interactive. The reception desk has circles as panels all across the front desk which have small marbles within the circles. Ollie heads straights for this and starts rolling the colourful marbles. Erica comes out and calls for Dana, we are shown to an area where Dana will be working for the next hour. During the session Dana did a lot of stand to sit and side stepping slowly. This is fantastic work. The determination is Dana's face is of someone who really wants to walk and work really hard to achieve this. They say a picture says a thousand words, well the picture of Dana's face says it all.
I am still worried about Dana putting weight through her feet, as transferring her is really difficult. Erica assures me she will get stronger and she can do the things she can do before, just as long as Dana can tolerate it. I am advised that is Dana moves that's fine however I am shown how to move her, therefore not to do passive moves on Dana. The hour goes really quickly and Erica gives us the all clear to go 'home'. How will Dana manage sitting on the toilet, well we will have a go when back at the hotel. We head back to the ward and wait for pharmacy to get Dana's discharge medication ready and to be discharged officially from the ward. Allie is back today and goes through the paperwork and explains about the 7 different types of medication,two or three will be regulars others are as needed. As I look at the list it's quite overwhelming, the doses are in mg and was assured each bottle will have mls stated. The list has the following: Tylenol, tylenol with codeine, suppositories, diazepam, gabapentin, miralax powder, sulfarrethoxazole. I sign I have been explained everything regarding discharge and make my way to the pharmacy on the 1st floor to pick up the meds. The pharmacist converted the mg to mls for the tylenol as it is an over the counter medicine. To say the bag was big is an understatement. I had so many syringes, bottles of meds and this was to take home, you can only imagine the dosage Dana was on immediately following surgery.
We leave the hospital and travel to the hotel in a wheelchair assisted taxi as Dana is not able to step into the shuttle bus herself. That's fine, Dana will get there, this is only temporary. We will be back to the hospital tomorrow as we have another physio session and we are seeing Dr Dobbs for her Hamstring operation.
We arrive back at the hotel and it feels so good to be back. Dana manages to even sit on the toilet for the first time since the op which is a big milestone. This in itself may seem small but to us is progress. Dana is putting weight on her feet and side stepping from the wheelchair to the toilet and back to the wheelchair. Dana then wants to sit on the sofa which again she manages to transfer with support. The support given is placing your hands under her bottom and Dana grabbing your neck so you are supporting her lift. She then stands and side or forward steps. After dinner Dana is so exhausted she wants to go to bed. I make sure she is surrounded by pillows as she feels nervous without the bed guards she had on the hospital bed. I reassure her by placing her on one side and putting a pillow on her back and another between her legs, just like she had in the hospital.
Reflecting on today, it scary being out of hospital yet it feels right Dana should be at home. Seeing other UK families who's children are a few weeks post op ahead of Dana its encouraging to see the progress they have made. It is also important to remember each child is different and not to compare. I think and know Dana will do great at the physio sessions planned for the weeks ahead yet I know it is really so much hard work I can't even relate it to anything similar. I can say that Erica's face was rather red and she had drips of sweat on her forehead and that is a physio who is very experienced and has been doing this for years.
Tomorrow we are seeing Dr Dobbs for Dana's hamstring op which is scheduled for the 16th Aug. I really do not want to put Dana through another operation, but I know this will push her even further forward long term.
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