Today is Connors Infusion day and it was heartbreaking to watch how excited he was about today due to it also being our 'Date Night'.
Last night Connor picked out some of his nicest clothing and also asked his Dad if he could borrow a bow tie. He asked me to take money out of his piggy bank so he could take me to a Movie and Dinner today (of course I did not raid his piggy bank;)
All went well this morning as the two of us left at 6 am to arrive at The Children's Hospital just a tad before 9 am. Traffic was horrid but we still arrived at time and Connor was in his room and hooked up by 9:30 am. All was going very well and Connor was even trying to not act nervous even thought he was on edge that he got a nurse he did not know. I was happy because with a 4 1/2 hour infusion time we should be on our way to C- Springs and our Date just a bit after 2 pm if you include the Methrotrexate.
So with 9 min left on the Infusion timer I texted Ron that we are as good as done and then things started to get interesting. His nurse came in and ended the infusion and pushed through the Methotrexate. She left and shortly after another nurse came in to unhook him. She looked at the bags on the pole and then excused herself. Shortly after that she came in with our original nurse and the talked a bit and then informed us that this morning the clamp for the IVIG was not released and that Connor has been getting just Saline for 4 1/2 hours. Which meant the bag with the IVIG was still hanging there full. So the only solution now was for us to stay another 4 hours to get Connors medicine in. This was a shock for all of us. Connor started crying non stop, my heart sank because I knew this would be heartbreaking for him and also I kept asking myself why I did not look at the bags at all after the infusion started. The only excuse is we never had this issue before so I just did not expect this. Of course our Nurse felt horrible as well and she tried to comfort Connor with gift cards to McDonalds or a Gift card for Target. Connor being upset of course told her he des not like McDonalds nd that he does not shop at Target so No Thank You ... I on the other hand told him if he takes the Target Card he can get himself a small toy, so he did end up taking it in th end. It was a good lesson however for Connor to learn that people will make mistakes and that you have to accept the things you can not change. I pointed out to him that the Nurse was feeling very bad and that due to this she is unable to head home to her 2 year old son and now had to stay four hours longer then scheduled. As it turned out we left the Hospital at 5:50 pm and we were the only people left on the Infusion Floor, the two of us and our Nurse. No one else ... even the cleaning crews were gone by the time we finished up. So we had to postpone the movie but we still had Dinner at Connor's favorite Mexican Restaurant in Woodland Park :)
Once Connor settled back down in the Hospital he watched the movie Hook for the 4th time. I can see why he loves Peter Pan so much ... I know there are days I would prefer to not be a grown up... :)
We also got a lovely surprise from Ron and Alexander once we finished our Dinner. The stopped by after a busy day in the Springs of shopping and a movie. Now I have to take Connor to the movies tomorrow so he can have his full date experience.
I left some of the best news until the end. Today might have been Connor's LAST IVIG Infusion!!!! Dr. Soep said we should give it a try and while his Bloodwork is not all perfect it looked stable:) Also, Connor begged Dr. Soep to please stop the Methrotrexate Shot's but she said he will still need his weekly Chemo Therapy but she will let him try to take them Orally. My goodness you should have seen Connor's smile! Of course there are factors to this so we are keeping our fingers crossed. For one Connor in the past did not have as good as an absorption with Drugs when he took the orally therefor all the Infusions and Shots. Also he is on 0.8 ml of the Chemo Shot so that will translate for him having to take 8 Pills! a lot to swallow for a little boy but he says he can do it!
Signing off with some Pictures from Date Night :)
Hugs,
and signing off after realizing Connor and I had now a 16 hour day, 5 of those in the car during 30 mph bumper to number rush hour traffic ... oh the joy! Sleeping Day tomorrow so NO early phone calls will be allowed ...
R A C A
Last night Connor picked out some of his nicest clothing and also asked his Dad if he could borrow a bow tie. He asked me to take money out of his piggy bank so he could take me to a Movie and Dinner today (of course I did not raid his piggy bank;)
All went well this morning as the two of us left at 6 am to arrive at The Children's Hospital just a tad before 9 am. Traffic was horrid but we still arrived at time and Connor was in his room and hooked up by 9:30 am. All was going very well and Connor was even trying to not act nervous even thought he was on edge that he got a nurse he did not know. I was happy because with a 4 1/2 hour infusion time we should be on our way to C- Springs and our Date just a bit after 2 pm if you include the Methrotrexate.
So with 9 min left on the Infusion timer I texted Ron that we are as good as done and then things started to get interesting. His nurse came in and ended the infusion and pushed through the Methotrexate. She left and shortly after another nurse came in to unhook him. She looked at the bags on the pole and then excused herself. Shortly after that she came in with our original nurse and the talked a bit and then informed us that this morning the clamp for the IVIG was not released and that Connor has been getting just Saline for 4 1/2 hours. Which meant the bag with the IVIG was still hanging there full. So the only solution now was for us to stay another 4 hours to get Connors medicine in. This was a shock for all of us. Connor started crying non stop, my heart sank because I knew this would be heartbreaking for him and also I kept asking myself why I did not look at the bags at all after the infusion started. The only excuse is we never had this issue before so I just did not expect this. Of course our Nurse felt horrible as well and she tried to comfort Connor with gift cards to McDonalds or a Gift card for Target. Connor being upset of course told her he des not like McDonalds nd that he does not shop at Target so No Thank You ... I on the other hand told him if he takes the Target Card he can get himself a small toy, so he did end up taking it in th end. It was a good lesson however for Connor to learn that people will make mistakes and that you have to accept the things you can not change. I pointed out to him that the Nurse was feeling very bad and that due to this she is unable to head home to her 2 year old son and now had to stay four hours longer then scheduled. As it turned out we left the Hospital at 5:50 pm and we were the only people left on the Infusion Floor, the two of us and our Nurse. No one else ... even the cleaning crews were gone by the time we finished up. So we had to postpone the movie but we still had Dinner at Connor's favorite Mexican Restaurant in Woodland Park :)
Once Connor settled back down in the Hospital he watched the movie Hook for the 4th time. I can see why he loves Peter Pan so much ... I know there are days I would prefer to not be a grown up... :)
We also got a lovely surprise from Ron and Alexander once we finished our Dinner. The stopped by after a busy day in the Springs of shopping and a movie. Now I have to take Connor to the movies tomorrow so he can have his full date experience.
I left some of the best news until the end. Today might have been Connor's LAST IVIG Infusion!!!! Dr. Soep said we should give it a try and while his Bloodwork is not all perfect it looked stable:) Also, Connor begged Dr. Soep to please stop the Methrotrexate Shot's but she said he will still need his weekly Chemo Therapy but she will let him try to take them Orally. My goodness you should have seen Connor's smile! Of course there are factors to this so we are keeping our fingers crossed. For one Connor in the past did not have as good as an absorption with Drugs when he took the orally therefor all the Infusions and Shots. Also he is on 0.8 ml of the Chemo Shot so that will translate for him having to take 8 Pills! a lot to swallow for a little boy but he says he can do it!
Signing off with some Pictures from Date Night :)
Hugs,
and signing off after realizing Connor and I had now a 16 hour day, 5 of those in the car during 30 mph bumper to number rush hour traffic ... oh the joy! Sleeping Day tomorrow so NO early phone calls will be allowed ...
R A C A
Wanted to check in and see how things are going for you. Miss seeing you on FB. Glad to see he got some good news! You are in our thoughts. And I hope that was his last infusion:)
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Erin