Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)

[teresajoy]

BECCA UPDATE​

Day 11-Move

The day began with Bic being about as good as she been during her stay in hospital. Her oxygen sats were holding in the high 70's or better and she was not really getting very agitated. Her last Ativan was at 2 am. We were a bit perplexed, however, that her blow by oxgen supply had been taped to her mask when we arrived. It is meant to be used to suppliment her oxygens when she needs it. Someone obviously wanted a quiet life.

Later on in the morning Bic went for a travel to have a CT scan. That went without incident, except we could hear Bic crying during the scan. We think she gets afraid when anything out of the ordinary happens.

Later on we got the results of the CT. Her abscess has shrunk from 4.3 cm to 3.8 cm, there is less contrast showing the amount of blood has further reduced and they were unable to detect any blood in the ventrical. All this is very good news.

We were also notified that they had decided to move Bic to the neuro ward. That happened at about 5.30 this evening.

We were taken aback when we got to the ward. The main thourofare was cluttered with beds, medical equipment and other junk. It is a dump. The room is tiny and we fall over oneanother and everything as we move around in there. It should be an embarassment to the hospital. The monitor that keeps an eye on Bic's vitals is turned towards the door such that we can't see it from the visitors chair. We could here the alarm going off almost continuously, but nobody came to investigate. I'm not sure it is monitored remotely at the nurses station, but if it is, the system doesn't work. The other thing that bothered us was that the staff on the neuro ward appeared poorly briefed on Bic's issues. They bumbled around in a disorganized fashion lacking the confidence that you expect.

Before we were assigned a room, the PICU staff said that we could either be going to the old neuro floor when they have small rooms or the new neuro floor where the rooms are larger. I'm not sure if there will be any differences in the level of medical attention, but we are going to make an issue of what we have experienced so far and press for a floor change.

Honestly, where she is now is like where you put people to forget about.

From being quite content, Bic was very upset in her new surroundings. I don't know if it was the change of scenery, but she would not stop crying until she had her painkiller.

One other gripe that we should have picked up on earlier. The bed that she is in (and has been in for the last 11 days) has a horrible dip in it that is making it difficult for Bic to get comfortable in. If she stays in it for the next two months, she is going to need more than physical therapy to get her back to rights!

Tomorrow I am going to have to address these issues with the doctors and get them rectified. We are extremely unhappy with the situation we now have and are concerned that Bic is now very vunerable to the medical staff themselves as well as her medical condition.

Its late but I can't rest until I have gone to have a surprise check up on them. I'm going to go across to the hospital to make sure Bic is still okay.

--------------------------
David​

 

[teresajoy]

I'm glad that it sounds like things are going well for Becca's healing. But, the hospital sounds like they need a talking to! I am REALLY not happy about the conditions that are going on there at the hospital. I hope everything gets straightened out very soon.

 

[eyor44]

Good news from the CT scan!

The hospital though, oh my goodness. Those conditions could set back what progress she has made. Prayers that David and Mandy are able to set things right.

 

[HeatherSue]

Wow, I can't believe the hospital would put a child into such horrible conditions! I sure hope they get that worked out.

I'm so glad the CT scan looked better today.

 

[FSUDisneyGirl]

prayers that you are able to get this worked out!

and that the doctor listens to your problems and requests..

and everything is changed to make the best possible situation for your little girl!!!

 

[MAGICFOR2]

prayers that you are able to get this worked out!

and that the doctor listens to your problems and requests..

and everything is changed to make the best possible situation for your little girl!!!

Amen. That sounds deplorable!

Thanks, Teresa for the info.

 

[jenb1023]

Glad to hear the CT scan showed improvement! But the description of the new ward is terrible! Complain and stay on them until changes are made - you know what they say the squeaky wheel gets the oil.

 

[maroo]

CT results!!!

Woo Hoo!!!

That is AWESOME news!!



Move to a ward is good news, too!

But...they need to get a grip on that stuff! Hopefully they get you moved to the new floor today.

I am so thankful that she has awesome parents to fight for her like you guys are!

 

[Tnkrbelle565]

Wow. That's terrible news about the hospital treatment. Hoping that it improves after they receive a talking to!

 

[kimmylaj]

good news about her healing, i hope you can get all this room situation straightened out

 

[CampbellScot]

I'm so glad that Becca is improving, but those conditions are unacceptable! Please DO make a fuss. Perhaps the staff is unaware of the depth of inappropriateness. Someone needs to point it out!

Go for it Becca's Dad! Be her lion! It will not only help Becca but other children as well!!

Continued prayers for you all!! And a special prayer for a room change and compassion from the hospital staff!

 

[3princesses+aprince]

So glad to hear about the good news on the CT scan. BUT.. make a fuss, make them get her comfortable. I can't imagine sleeping with a dip in my mattress at night, never mind having to lay on it all day.

 

[The Moonk's Mom]

Great news on the CT!!!!

I hope all gets straight with her room and care...

 

[tinytreasures]

great news about the CT scan
I would really make a fuss about where she is now
as for a new bed also

 

[teresajoy]

BECCA UPDATE​

Day 12-MRI

I did pay the hospital a late visit last night. Bic was been attended to by a nurse. She was wide awake and sweating. The nurse explained that she had tried to improve the comfort of the bed by using box foam and Bic had needed a stick for blood. She was not a happy camper because of the disturbance. She did settle down, though and appeared very pleased that I was there. Soon she fell asleep and I returned to my bed.

This morning Bic was sleeping when we arrived. She had just had her oxicoden and was zonked. Later when she came round, she was very agitated and found it difficult to tell us what the problem was. Eventually she confirmed that it was the tops of her legs that hurt. We tried to get her more comfortable in bed, but that is a lost cause.

We talked to the nurse about the problem with the bed and they suggestested that a 'sports bed' might be appropriate. She told us that one would be organized for Bic.

Bic had a massage this morning as well as physical therapy. She loved the massage again, crying when she left. The PT was less fun for her. She cryed when she was there. She had a lot of difficulty straightening her leg out. We talked about ways to overcome this, but also concluded a better bed was necessary.

We received word that they wanted to do an MRI around lunch time, so we asked to have someone explain why given that they had done a CT only yesterday. The Resident Practicianer said that they were unable to explain why certain things hadn't come back. Where the CT scan is today, they would have expected her to be talking. They don't understand why she isn't and decided they needed the detail that an MRI could give.

We went with Bic to the MRI. It was quite a performance getting her ready for the scan with all the precautions they have to take. There was a concern that she wouldn't hold still for long enough to complete the test. We were conslulted on what we thought would work best. We suggested that if she has Oxicoden, she would be relaxed for long enough to do the scan, but to be aware that it is painful for her tostretch her legs out. The MRI would have been a complete success except that the doctors changed the order mid way though the scan to a more comprehensive evaluation, which added another 20 minutes to the 45 minute scan. After staying completely still for 45 minutes, she began to get stressed and agitated. I was there at the tunnel watching her the entire time and had to give the signal to abort when she became upset. They pulled her out of the MRI and removed the restraints so that she could get cofortable again. She was unhappy with everyone. The nurse that came down with us from neuro began trying to organize extra oxicodon. The burocracy involved meant that this took over half an hour to get there. Finally she received the adhock dose and we were ready to get started again. After the restart she managed to go the course. We finally got out of MRI nearly 3 hours after arriving there. Apparently they had to cancel several MRI appointments on account of us!

We took a late lunch and on our return to the ward, Bic was waiting for us with her oxygen mask off. We questioned her about what she was doing without and she put her finger up to her mouth in a 'be quiet' motion. We think she didn't want us to tell the nursing staff. Then she beconned us to her with her finger to tell us that her legs were hurting. We massaged her legs for a while, which I think she liked, before she told us she had enough by brushing us away.

The pain speciallists came round late in the afternoon and we discussed Bic's leg pains. They suggested that we try valium for muscle pain between the oxicoden medicine. We have tried that for a while and thin that maybe it is too early to tell if it is making any difference.

Early this evening, we got to see the neuro surgeon on his rounds. He discussed Bic and the MRI. The MRI detected blood in the ventricle, which is supported by the brain drain fluid, which is still pink. He confirmed that he was perplexted that Bic's speach hasn't returned. He was using the MRI to detect other possible issues such as blood flow problems. He was unable to find anytjing suspicious, except for som abnormal blood flow resulting from the pressure still being exerted by the abscess . He is looking at having a PICC line put in, which is a long term IV put in a major vein in the arm. This will be for the antibiotics that will have to be administered for months to come.

The surgeon also wanted to get speach therapy and occupational therapy hooked up with Bic (in fact they had been today, whilst we at MRI).

The sureon spoke of removing the drain when the fluid changes color. They would first set it so that it won't allow any drainage and assess what happens, probably by CT. If fluid continues to build up, they will have to put in a permenant drain, but if it doesn't, that will show the brain is reabsorbing the fluid naturaly.

Today the staff in neuro redeemed themselves. They were very attentive and used the day to understand Bic's unique medical symptoms and issues. We think the ward is still a dump, but the nurses are good and it really isn't dirty.

The bed arrived late this evening and the staff on the ward plan to move Bic into it at an opportune time before the morning. .

This afternoon, Bic was a handful after returning from the MRI. She wouldn't lay still, her legs obviously causing her discomfort. She got into just about every position imaginable and kept ripping off the oxygen mask. It was nice to see her so active, but she wore us out! Besides this, she kept demanding a leg massage and then would take our hands and pull them away because she had had enough. It was a bit like stroking a cat!

All the movement is a good thing because she is beginning to make her body work again, so we are not about to discourage it. We are concerned though that in a fit of frustration, she will rip the drain out of her head and that would be bad!

--------------------------
David​

 

[teresajoy]

I'm glad to hear that Becca is communicating now. I'm sorry she is so uncomfortable though. I hope they get her into her new bed and it helps out.

 

[CampbellScot]

I'm thrilled that Becca is communicating again!! Of course she is uncomfortable, poor thing. She's being feisty and that is always a good sign. It's a normal sign for anyone sleeping in a horribly uncomfortable bed and having to needles poked into her and tubes in and out. All good signs.

I wish she was more comfortable though.

Will continue to pray for you all!!!

go becca!!!!

 

[kimmylaj]

still praying for sweet becca

 

[MAGICFOR2]

I think it's great that Becca is communicating and showing that she has an opinion about what is going on - I hope the staff can make her more comfortable, and she'll continue to improve.

 

[Tink rules]

Sounds like she's fighting (in a good way... ) and that's a good sign!!!