We are due at the hospital for 10.30 this morning and I discreetly eat some breakfast as Dana is not allowed to eat anything since midnight last night. I aim to be at the hospital as soon as possible to establish if the splints will arrive this week. Blaire had informed us yesterday Dana is unable to walk without splints as this may lengthen the hamstrings further which would cause problems. So I was a bit anxious to find out where we stood and should we in fact even go ahead with the operation today.
We arrive at the hospital and make our way to the 4th floor to speak to Blaire, who is featured in the hospitals newspaper this week with another UK child who also has had SDR. Anyway I speak to Blaire who confirmed the splints have been sent to the supplier in Washington, however may not arrive until Monday. Now I am really panicking, what do I do? Blaire makes another phone call and confirms the splints should be with us by Thursday and says she will visit us in the ward later in the afternoon. My thoughts turn to all the hard work Dana has done during the last week and not being able to attempt to start taking steps until worst case scenario Monday, surely that can't be right. Blaire assures me the splints will be with us by Thursday and on that reassurance we go ahead with the op.
We make our way to the 6th floor and are familiar with the procedure, checking in at reception the receptionist greets Dana personally as we approach the desk and I look around and stop at the door which is the room we spent the morning of 4th August in when Dana was in surgery for SDR. There is another name on the door, another child in surgery and another family going through the same emotions I went through that day. My heart sank, firstly because we have come through that stage and secondly because I deeply felt for the family. I mentioned to the receptionist we were in there and she said all Dr Park's children get the 1st class treatment and I replied to seeing one of the cubicles assigned to us, we were now in economy or coach class as they say in America. I follow the nurse to the bed assigned to Dana for the pre med and we follow exactly the same procedure as a few weeks ago. A child life specialist introduced him self and talks with Dana for a while. Then again as before a whole series of professionals came in to Dana's cubicle. We had the same Nurse Practitioner who remembered Dana from last time. The nurse came in with Dana's pre med and I knew we were going to have a difficult time again. Dana refused to accept it and said she was not having the operation and fixed her lips tight. It took us 15 mins and a threat of giving the pre med by injection for Dana to finally take it orally. She is a real nightmare with pre meds. Dr Dobbs came in shortly after and we had a really good conversation about the procedure again and I asked about growth spurts and future operations. He replied and said Dana will not require further surgery and the physio, ie all the stretching we do will maintain the legs supple. I felt as if a weight had been lifted. You know even with Dr Park we have conversations about Dana, not just about SDR or the other surgery, but also about the future and how her body will be when she is older. Finally we have two doctors who as a parent can actually relate to and not feel as if my child is just a number. There is a plan here, a plan in which you are able to develop a timeline and see the progress made and also know what you have still to achieve. As a parent you are part of a conversation here and not feel you are talked at, as you are in the UK. There have been lot of occasions in the UK when I have raised concerns and been fobbed off by the doctors saying to me 'lets review in 6 months' or 'lets see how things go' The truth is they are playing with childrens lives and leaving things rolling over for years and years will add complications as the child grows. Believe me Dana is living proof of this and playing roulette with children has got to stop.
Dana gave me strict instructions not to walk with her part way to the OR and that she wanted to go alone with the nurses. This is while she had facebooked her friends and updated them on the pre med. Why I do not know, I just let it go, anything for peace. Dana was true to her word and with the orange flavoured mask in her hands, kissed her and said see you later, she was wheeled to the OR. How can she be brave during this bit and not take a bit of pre med??? She told the nurses to take it slow as she wanted to take in the scenery to the OR. Very weird. I took all the belonging to the cubicle and waited for that phone call to say all is well. With Ollie in the sibling room it was defiantly time for a coffee.
On my return I see the family who are in the 1st class room and have a really good chat with them. They look so frightened and I can really relate to what she was feeling and saying. The hour goes by so quickly and the phone call comes through. It's Dr Dobbs to say the operation went extremely well and he managed to get a very good stretch and we will be very pleased with the results. What fantastic news and I sigh with relief. I'm still on a high from being told no more surgery. Another call comes through shortly after to say Dana is in recovery. She looked so much better than when I saw her after SDR and soon after we all make our way to the 10th floor.
The layout on the 10th floor is much the same as the 12th and Dana has a room to herself again. No Amish family in sight this time. At our pre op consultation we were asked if Dana would stay the night as they recommend it and I said yes. Yet out of three children I knew was having the same procedure today, Dana is the only one who has stayed. I am so glad we decided to stay as Dana has been having terrible muscle spasms and she has a bit of leakage from one of the dressings. I would not know what to do if I was in the hotel.
When we arrive in her room, Dana is in a really bad mood, I know again it's the medication and that fact she hates the IV line and complains even further as it is in the wrist, Ooh! She is not in any pain at the moment but her attitude is awful and embarrassing. She slips in conversation when she was wheeled to the OR, she was actually in the OR awake as they moved her onto the operating table, then she was put to sleep after that. How can she go through this and not able to take the pre med. Blaire comes in as promised and chats through the splint issue and how we progress with physio. She suggested returning in the morning at 8.30 and then Dana is scheduled with Mike anyway at 11am and he will come to the ward instead of us going to the therapy department. Dana will need to be transferred as before whereby she is lifted to transfer. Great we really are back to Day 1.
Dana has some pasta for dinner as she is so hungry but need to be careful eating too much, so we start with Water and crackers. She even has a hot chocolate which the nurse makes for her. During the night she is suffering from terrible spasms and get some pain relief.
Physio will resume tomorrow and its going to be a painful one, hopefully she will manage the pain with medications and we can work on some bed stretches. Let's hope.
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