Day 10
Maxy has now been in the hospital 10 nights with a little break in between stays. It's breaking our hearts that he is still here - I would not wish this on my worst enemy. A lot has happened since I last blogged so I'm going to try to fill everyone in.
Max was npo (nothing by mouth) all day Friday and we were set for the picc line insertion at 5:30 but due to an emergent case in the IR (interventional radiology) department he was pushed and they said they were unable to take care of it Friday. And...they are closed for all non-emergent cases over the weekend. He has already blown his IV and had to have a new one so we were set there with an IV that would have got us through the weekend and he was set for Monday morning. Keeping us here until at least mid to late next week. His surgeon was livid and fought to have them do the procedure first thing Saturday morning. He was scheduled for 9am and she mentioned as long as everything went ok and we got the insurance approval for in home health, got the first supplies shipment and got comfortable taking care of the picc line and administering the meds then we could head home. As a momma that's never dealt with anything like this in my head I'm thinking you just put an enormously long catheter into my sons arm into a huge vein leading straight to his heart and you are telling me we can go home? The picc line terrifies me but I knew that I have to be strong and do what needs to be done.
The procedure went well with no issues but he had a very very hard time recovering. He was pretty much inconsolable and I finally threw aside his covers and toys in his bed and said call his surgeon if you need to but I'm going to hold him because he needs me. I kicked the chair back as flat as I could and arched by back so he was flat per his restrictions and laid him on me belly to belly. For that moment all was right with the world - for both of us. He's my baby - my youngest - and for 9 days I've not been able to truly hold him, I've watched his sweet eyes and smile light up when I've rigidly lifted him off the bed for a couple of minutes at a time - afraid to hurt him or cause him to leak spinal fluid. When he laid on my belly he melted into me and calmed down and it was like the overwhelming joy I felt when they put him on my chest for the first time - my baby was in my arms. He ended up napping like that for over an hour and it was heavenly.
I've spent very little time with Ceej and Mimi over the past two weeks - which has been killing me. I miss them so much and I feel torn in a million directions. As much as I didn't want to leave the hospital Chris and my family urged me to head home and spend some time with them and I'm glad I did. I skyped Maxy a lot but it was good for all of us. So that brings us to today. I came back to the hospital early this morning. Since last night Max has been vomiting a lot after he eats - when we can actually get him to eat. He has also been having some pretty bad diarrhea. It's so hard to try to determine what is causing it as it could be a whole slew of stuff. So right now we have to keep an eye on that.
For the first time also today - the nurse and I noticed that his back looked bigger than it had. We called the resident in and she agreed and the fellow came and examined him and he said it was for sure bigger. They are suspected that he has some spinal fluid leakage after all - what we've hoped to avoid from the get go. He said there are 3 options - a. observe it and often times it will resolve on its own. b. put in a lumbar drain to help that fluid drain off or c. head back to the OR to clean it out. Obviously we are terrified about basically all of the options and so so sad that our little man is going through all of this. So for now we are holding tight and going to observe it overnight and see what the attending thinks tomorrow during rounds. We were hoping to blow this pop stand but between not eating, vomiting and his back - I'm guessing that's not happening. We also had to start his pain meds again this afternoon as he seemed to be in some pain. The little guy just cannot catch a break.
I'll keep everyone posted tomorrow. I'm the kind of exhausted that I didn't know existed. I haven't thought about anything but Max getting better and having my chaotic family all together in 2 weeks. I couldn't tell you the day of the week or even the date (ok I can that because I do know that Halloween is tomorrow) - but you get the point. So I'm going to curl up on my sweet hospital couch and hopefully watch the Cubbies not suck and get some shut eye before Max's 9pm antibiotic dose where I will get some picc line practice again.
XOXO
K
Max was npo (nothing by mouth) all day Friday and we were set for the picc line insertion at 5:30 but due to an emergent case in the IR (interventional radiology) department he was pushed and they said they were unable to take care of it Friday. And...they are closed for all non-emergent cases over the weekend. He has already blown his IV and had to have a new one so we were set there with an IV that would have got us through the weekend and he was set for Monday morning. Keeping us here until at least mid to late next week. His surgeon was livid and fought to have them do the procedure first thing Saturday morning. He was scheduled for 9am and she mentioned as long as everything went ok and we got the insurance approval for in home health, got the first supplies shipment and got comfortable taking care of the picc line and administering the meds then we could head home. As a momma that's never dealt with anything like this in my head I'm thinking you just put an enormously long catheter into my sons arm into a huge vein leading straight to his heart and you are telling me we can go home? The picc line terrifies me but I knew that I have to be strong and do what needs to be done.
The procedure went well with no issues but he had a very very hard time recovering. He was pretty much inconsolable and I finally threw aside his covers and toys in his bed and said call his surgeon if you need to but I'm going to hold him because he needs me. I kicked the chair back as flat as I could and arched by back so he was flat per his restrictions and laid him on me belly to belly. For that moment all was right with the world - for both of us. He's my baby - my youngest - and for 9 days I've not been able to truly hold him, I've watched his sweet eyes and smile light up when I've rigidly lifted him off the bed for a couple of minutes at a time - afraid to hurt him or cause him to leak spinal fluid. When he laid on my belly he melted into me and calmed down and it was like the overwhelming joy I felt when they put him on my chest for the first time - my baby was in my arms. He ended up napping like that for over an hour and it was heavenly.
I've spent very little time with Ceej and Mimi over the past two weeks - which has been killing me. I miss them so much and I feel torn in a million directions. As much as I didn't want to leave the hospital Chris and my family urged me to head home and spend some time with them and I'm glad I did. I skyped Maxy a lot but it was good for all of us. So that brings us to today. I came back to the hospital early this morning. Since last night Max has been vomiting a lot after he eats - when we can actually get him to eat. He has also been having some pretty bad diarrhea. It's so hard to try to determine what is causing it as it could be a whole slew of stuff. So right now we have to keep an eye on that.
For the first time also today - the nurse and I noticed that his back looked bigger than it had. We called the resident in and she agreed and the fellow came and examined him and he said it was for sure bigger. They are suspected that he has some spinal fluid leakage after all - what we've hoped to avoid from the get go. He said there are 3 options - a. observe it and often times it will resolve on its own. b. put in a lumbar drain to help that fluid drain off or c. head back to the OR to clean it out. Obviously we are terrified about basically all of the options and so so sad that our little man is going through all of this. So for now we are holding tight and going to observe it overnight and see what the attending thinks tomorrow during rounds. We were hoping to blow this pop stand but between not eating, vomiting and his back - I'm guessing that's not happening. We also had to start his pain meds again this afternoon as he seemed to be in some pain. The little guy just cannot catch a break.
I'll keep everyone posted tomorrow. I'm the kind of exhausted that I didn't know existed. I haven't thought about anything but Max getting better and having my chaotic family all together in 2 weeks. I couldn't tell you the day of the week or even the date (ok I can that because I do know that Halloween is tomorrow) - but you get the point. So I'm going to curl up on my sweet hospital couch and hopefully watch the Cubbies not suck and get some shut eye before Max's 9pm antibiotic dose where I will get some picc line practice again.
He is forever more figuring out how to get his imobilizer and his ace bandage around his picc line off!
Ready for Halloween tomorrow
Playing with Momma's ponytail is his favorite pasttime and I always end up with an 80s style fabulous side pony
XOXO
K
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