Maxy update - day 9
9 days in the hospital. In 34 years, 2 births - Chris and I have never even spent 9 days in the hospital but our sweet sweet man has spent 9 days here and likely has a few more this round. I never thought we would be parents that would have a sick baby - no one does - until it happens to them.
I will never again take for granted my health or the health of any of my family members. I will also never take for granted having my family together. Being split up for the past 2 weeks has been pure hell. I feel torn between everyone and I don't feel like I'm giving enough to anyone.
So I wanted to give everyone an update on Max and unfortunately it's not the update that I was hoping to give. Max will be headed back in to the OR today to have a picc line inserted at 5:30. He will be under general anesthesia and will be able to then go home with the picc line once everything clears through insurance and we have our in home health nurses lines up and the medicines and supplies shipped to our home.
Chris and I will be taking a picc care and picc emergency care course in the next day to learn how to administer meds, flush the line and take care of the line in an emergency. We will go through the training again when we get home with the in home health nurse as the supplies and such may be slightly different than those here at the hospital.
I hate that he's having to go through this - it breaks my heart - but I know it's the best thing for him. We got him to take his dose of oral antibiotics this morning after lots of struggling, crying and holding him down, and blowing in his face. Sam - his nurse and I celebrated - until I glanced at him and saw the puke signs and bam - exorcist style puke all over the bed. He emptied the entire contents of his stomach - including all of his oral antibiotics. I knew right then we were headed for the picc line as his neurosurgeon had told me that last night.
So where do we go from here? We still don't know what's actually wrong - we know there is an infection of some sort somewhere but all of the cultures and the tests are coming back negative. So the infectious diseases team suggested that the only possible thing left to do would be to go back into the surgical sight and clean out the wound and see if there is an infection there. His neurosurgeon however is not comfortable doing that because he is only 8 days post op and so little and we have already punctured his spinal column twice now with the surgery and the spinal tap and have tapped into his skin twice to draw fluid up to test and were unable to get anything.
Her gut tells her that there can't be an infection there as she believes that babies don't hide anything. So the fact that we can poke and prod his back and his surgical site and he isn't showing any signs of distress leads us all to think "how can the infection possibly be in there?". So her recommendation which we are of course taking is to put him on a broad spectrum antibiotic for an aggressive 10-14 day course through his picc line, watch for fevers and see how he does. Then if she's satisfied the picc line will come out, the antibiotics will stop and hopefully that will take care of it. We may never know what caused the issue - but as long as he is OK she is fine with that.
We pray this works and that we have our family back together again - happy and healthy. If for some reason it doesn't work - we will be back in the hospital and back in the OR and she will have to open him back up and clean out the wound. Of course this is scary - but if it were to happen we arrive at the same spot as we would today if we were to take infectious diseases recommendation - but we would have the added advantage of his body having an extra 2 weeks to heal from that first surgery.
We have 100% faith and trust in her and her team and we truly believe this is just luck of the draw - that it's just an unfortunate thing that happened to our sweet boy and we are hoping to get through it soon. I have to thank everyone so so much for the prayers and sweet thoughts - they have been constant and they are so much appreciated. They say it takes a village and when all is well and good and life is puppy dogs and kittens - you don't realize how much you need your village. But when shit hits the fan and life gets hard - you realize that you need that village more than you could ever imagine. And we have one hell of a village.
XOXO
K
I will never again take for granted my health or the health of any of my family members. I will also never take for granted having my family together. Being split up for the past 2 weeks has been pure hell. I feel torn between everyone and I don't feel like I'm giving enough to anyone.
So I wanted to give everyone an update on Max and unfortunately it's not the update that I was hoping to give. Max will be headed back in to the OR today to have a picc line inserted at 5:30. He will be under general anesthesia and will be able to then go home with the picc line once everything clears through insurance and we have our in home health nurses lines up and the medicines and supplies shipped to our home.
Chris and I will be taking a picc care and picc emergency care course in the next day to learn how to administer meds, flush the line and take care of the line in an emergency. We will go through the training again when we get home with the in home health nurse as the supplies and such may be slightly different than those here at the hospital.
I hate that he's having to go through this - it breaks my heart - but I know it's the best thing for him. We got him to take his dose of oral antibiotics this morning after lots of struggling, crying and holding him down, and blowing in his face. Sam - his nurse and I celebrated - until I glanced at him and saw the puke signs and bam - exorcist style puke all over the bed. He emptied the entire contents of his stomach - including all of his oral antibiotics. I knew right then we were headed for the picc line as his neurosurgeon had told me that last night.
So where do we go from here? We still don't know what's actually wrong - we know there is an infection of some sort somewhere but all of the cultures and the tests are coming back negative. So the infectious diseases team suggested that the only possible thing left to do would be to go back into the surgical sight and clean out the wound and see if there is an infection there. His neurosurgeon however is not comfortable doing that because he is only 8 days post op and so little and we have already punctured his spinal column twice now with the surgery and the spinal tap and have tapped into his skin twice to draw fluid up to test and were unable to get anything.
Her gut tells her that there can't be an infection there as she believes that babies don't hide anything. So the fact that we can poke and prod his back and his surgical site and he isn't showing any signs of distress leads us all to think "how can the infection possibly be in there?". So her recommendation which we are of course taking is to put him on a broad spectrum antibiotic for an aggressive 10-14 day course through his picc line, watch for fevers and see how he does. Then if she's satisfied the picc line will come out, the antibiotics will stop and hopefully that will take care of it. We may never know what caused the issue - but as long as he is OK she is fine with that.
We pray this works and that we have our family back together again - happy and healthy. If for some reason it doesn't work - we will be back in the hospital and back in the OR and she will have to open him back up and clean out the wound. Of course this is scary - but if it were to happen we arrive at the same spot as we would today if we were to take infectious diseases recommendation - but we would have the added advantage of his body having an extra 2 weeks to heal from that first surgery.
We have 100% faith and trust in her and her team and we truly believe this is just luck of the draw - that it's just an unfortunate thing that happened to our sweet boy and we are hoping to get through it soon. I have to thank everyone so so much for the prayers and sweet thoughts - they have been constant and they are so much appreciated. They say it takes a village and when all is well and good and life is puppy dogs and kittens - you don't realize how much you need your village. But when shit hits the fan and life gets hard - you realize that you need that village more than you could ever imagine. And we have one hell of a village.
XOXO
K
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