What a shitty day this turned out to be. Woke up about (6 AM) to Daniel coughing a dry cough and he couldn’t seem to catch his breath. Instead of calming down to take a drink of water and relax, he got worse and began to panic so to my surprise and before I knew it Rob had called an ambulance. Within 2 minutes (enough time to brush my teeth) several EMT and firemen were at the house and getting Daniel in the bus to go. I instantly knew what the outcome was going to be and knew, knew , knew Daniel was not going to be happy with his decision. But what was I going to say. The right thing to do was to go to the hospital because we are only 44 days post transplant and if he truly wasn’t able to breath or having shortness of breath, then he needed to be seen immediately. Once we cleared up the fact that he couldn’t go to ‘regular’ emergency room and he needed a special BMT Emergency Room with positive air pressure and high level precautions we were situated. No waiting for us. Daniel was feeling much better once receiving oxygen in the ambulance anyway. Upon arrival he was greeted by several ER nurses that were glad to meet “THE DANIEL” who made the video. OMG really. Then once situated the ER Doc came in and saw Daniel’s GreenBay hat and said “Ah, we are going to get along just fine.’ This made Daniel smile. By this time Daniel was feeling so much better with continuous oxygen. His IV fluids from overnight were finished. Labs for what was supposed to be his late morning appointment were done so we had thought we had streamlined the day plus had a quick chest exray and CT scan thrown in for good measure, then WHAM doctors came and said they were admitting him to keep an eye on him. He turned green. He was so upset. He immediately was sorry he came in in the first place. Why is this happening? Again on a Friday! This is the exact reason that one of the Doctors told me that often kids stop complaining about pain and don’t tell parents or doctors when something is hurting or even starting to bother them, because they have had enough of all of this shit and just want it to stop or want to avoid it all and we need to watch for this very carefully and can’t let this happen. He immediately started saying he felt fine and didn’t think he needed to stay but by this point it is out of our hands and they now GOTCHA. So admitted we were. Back up to room 765 (which was our original transplant room). Matthew raced over to pick me up so I could go home and get my care and get a few things for the weekend, assuming we would be here through Monday and Daniel was still in his PJs from last night. At least he needed his MADDEN to get through the day. By the time I was downstairs Daniel called to tell me they were going to let him go home by tonight if his oxygen levels and everything behaved ALL DAY. Well he still needed his shoes and for G-d sakes he needs MADDEN to make it through the day. By the time I got back to the hospital he was finished eating lunch and watching football. While here we actually got them to bump up his treatment he was supposed to get in the outpatient clinic on Monday that normally would take three hours in the infusion room. Since he is here and in the comforts of a room with a bed and football why not do it now and make the most of his time. Way to take advantage of the system. So now he is sleeping away and just finishing this treatment and we don’t have to be uncomfortable and do it on Monday and waste the whole day and he can have the whole day to sit at home and watch football (sheesh).
In the meantime somewhere in between getting back to the hospital and getting back up to the room with his stuff I lost my phone. I am NEVER without my phone in hand these past 6 months. It is a communication lifeline. For calendar, for communicating with my family and Matthew and Rob and between juggling getting perscriptions filled downstairs in the pharmacy and getting stuff up to the room the washing station I misplaced my phone. In 5 minutes I went to get my phone and BAM ! gone. FUCK. I lost my breathe. Now it is my turn to panic. I retraced my steps. We went to and called security. Within 5 minutes my phone was OFF. Someone had to have taken it. I never turn my phone off EVER, not with what we have been going through. Why is it off? Who would steal a phone and not turn it is at Children’s fuucking Hospital. Seriously. I don’t care about the phone, I will have a new phone by tomorrow but it is all my contacts and my pictures and my calendar. My SIM card is gone. I hope I can retrieve it all. I can’t stand the idea of anyone having my personal stuff, but to me the pain and time I will have to go through to deal with retrieving it tomorrow and if I have to go to SPRINT when it is so frickin busy on a Saturday and I can’t be around the germs of so many people. I don’t have patience for this stuff at the best of times but can absolutely not be left without lines of communication right now. I know people always say to slow down and relax and you should take the time to unplug and turn off…well when you have a medically compromised child and you aren’t sure if you know the number of the BMT nurnse or the 7th Floor nursing station by heart or even your 16 year olds number as anything other than speed dial #8, you start to panic. Now I have Daniel resting comfortably as his infusion is finishing and we will go home soon. Rob sleeping beside me, catching up from a crazy day and I know for certain I will not be sleeping tonight, thinking where is my phone? So frustrating. Talk abput a shit storm. I know it is because I am like a chicken running around with my head cut of and that is exactly why I misplaced the phone in the first place but really, in all of this crap that has happened to us with Daniel I have NEVER asked why us, why me and but when I can’t slow down on a frantic day like today I have to ask WHY would a person not turn in a phone at a children’s hospital to a front desk? Is that just not the right thing to do? Especially this time of year? So on that note, if any of you who normally hear from me, don’t, I apologize. I hope to recover everything in the next few days. I will check in on my laptop until then.
In the meantime somewhere in between getting back to the hospital and getting back up to the room with his stuff I lost my phone. I am NEVER without my phone in hand these past 6 months. It is a communication lifeline. For calendar, for communicating with my family and Matthew and Rob and between juggling getting perscriptions filled downstairs in the pharmacy and getting stuff up to the room the washing station I misplaced my phone. In 5 minutes I went to get my phone and BAM ! gone. FUCK. I lost my breathe. Now it is my turn to panic. I retraced my steps. We went to and called security. Within 5 minutes my phone was OFF. Someone had to have taken it. I never turn my phone off EVER, not with what we have been going through. Why is it off? Who would steal a phone and not turn it is at Children’s fuucking Hospital. Seriously. I don’t care about the phone, I will have a new phone by tomorrow but it is all my contacts and my pictures and my calendar. My SIM card is gone. I hope I can retrieve it all. I can’t stand the idea of anyone having my personal stuff, but to me the pain and time I will have to go through to deal with retrieving it tomorrow and if I have to go to SPRINT when it is so frickin busy on a Saturday and I can’t be around the germs of so many people. I don’t have patience for this stuff at the best of times but can absolutely not be left without lines of communication right now. I know people always say to slow down and relax and you should take the time to unplug and turn off…well when you have a medically compromised child and you aren’t sure if you know the number of the BMT nurnse or the 7th Floor nursing station by heart or even your 16 year olds number as anything other than speed dial #8, you start to panic. Now I have Daniel resting comfortably as his infusion is finishing and we will go home soon. Rob sleeping beside me, catching up from a crazy day and I know for certain I will not be sleeping tonight, thinking where is my phone? So frustrating. Talk abput a shit storm. I know it is because I am like a chicken running around with my head cut of and that is exactly why I misplaced the phone in the first place but really, in all of this crap that has happened to us with Daniel I have NEVER asked why us, why me and but when I can’t slow down on a frantic day like today I have to ask WHY would a person not turn in a phone at a children’s hospital to a front desk? Is that just not the right thing to do? Especially this time of year? So on that note, if any of you who normally hear from me, don’t, I apologize. I hope to recover everything in the next few days. I will check in on my laptop until then.