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Aug. 3, 2009
exhausted and overwhelmed
We got a LOT of news today, and were also left with a LOT of new questions. I'll tell you all that I know, but please realize that I don't know as much as I would like at this point.
1. Noah is still sick. He's still spiking temps and we don't know why. He isn't laid flat non-stop and has times when he gets out of bed to sit in a chair or on the floor to play "water bucket," but he is a sick little boy.
2. His suture removal was harder and more painful than I expected. He was pretty traumatized by his time in the treatment room. It wasn't anyone's fault - it is what it is. He's terrified of having medical people mess with his broviac area, so the suture removal would have been VERY scary even if it were easy. The fact that he feels rotten doesn't help.
3. I mentioned that ID wants us to see a rheumatologist in Charleston. This doctor will actually be in Columbia (long drive, but closer than Charleston) on Wednesday - as in the day after tomorrow. Noah's team does not want him to wait. They want him to see this guy on Wednesday. This means being discharged from here and taking a sick child there. I "believe" this would entail our taking him ourselves (e.g. not an ambulance). It's an outpatient visit, not a hospital to hospital transfer, BUT the ID doctor said that the rheumatologist may well decide on Wednesday that Noah needs to go straight to MUSC (Charleston) and be admitted there. If not, we would come back to Greenville and Noah would be readmitted here. We won't know until it happens.
4. There is a growing (and apparently serious) concern in his team that Noah has some sort of autoimmune disease. The head of the pediatric team spoke with me today about the need for us all to realize that Noah may now have yet another diagnosis - one caused by the mito or not. ID spoke sort of the same way, but specifically discussed feeling that Noah may have an autoimmune disease. (Hence the rheumatologist) The fact that ID wants this done NOW in spite of many logistical hurdles and the fact that she thinks the rheumatologst may want Noah sent straight to MUSC tells me that this isn't something she is taking lightly. Honestly, it scares me a little.
5. Noah's vascular ultrasound went OK, and it revealed excellent access for a new line. That's good news whether we end up with a new line sooner or later.
6. Noah's broviac has begun to twist and kink on itself. This leads to the breakdown of the line. I don't know if this is going to be a determining factor in our line decisions or not. It is causing a lot of "line occluded" alarms at all hours of the day and night.
Ummmm . . . I think that covers the news for now. We need a LOT of prayer for the next few days. If there's ever been a time to spread the news, this would be it. Here are some specific concerns which all need to be addressed before we leave Wednesday.
--Jeff can't logically come. The children are stressed and need a parent, so he can't leave them with someone else. He can't really bring them b/c it would be a logistical nightmare if we ended up in Charleston on a spur of the moment basis as could happen. If Noah does have to go to MUSC, Jeff will try to find lodging arrangements, pack, and bring the children in a planned and orderly fashion. Doing it on Wednesday would be a LONG and HARD day for the littles especially, even if we end up coming back to Greenville. The good news there is that my dear friend Corey has offered to take me. The bad news is that of course I want and feel as if I need my husband right now. The extra good news is that God's grace will be sufficient.
--I don't know yet (although we'll formulate a plan) how to manage Noah on the road. I'll need to be administering his 2 IV antibiotics. I don't know what to do if he goes downhill or spikes a big temp. If he keeps his line tomorrow, I don't know what to do if that kinking makes the line give way and I can't adminster the antibiotics. There will be a LOT of small details that need to be worked out and I will need home health to bring a LOT of things to the hospital so I can administer all this stuff.
--I don't yet have a time for the appt. on Wednesday, but due to Noah's antibiotic schedule it is certain that Noah's TPN will be running when we leave. Unless we end up with an ambulance transport, I won't have a way to keep the TPN going. I have our pump, but it won't work with the bags or tubing from the hospital.
--The children were already extra-fragile this time around. This is a LOT more stress. They are worried. Even if we come back here Wednesday, they will A) be stressed until that decision is made and B) they are stressed by the enormity of the issues we are dealing with right now - line decisions, trying to figure out why Noah is sick right now, AND whether we are about to have an entirely new additional diagnosis added to Enigma Boy's lineup. This is also very stressful on the grandparents and Jeff and I.
--There are other smaller logistical issues, like packing up to leave then unpacking either here or at MUSC all in one day, leaving our favorite room on the 5th floor and not knowing if it will be available when (if) we come back, etc.
All you mamas with hospital experience (and many of the rest of you I'm sure) are already figuring out that this is a TON to accomplish in a very short amount of time. If Noah is going home on IV antibiotics, it's almost unheard of to get him discharged before mid-late afternoon. This is potentially a far more complicated discharge that will have to be done early in the day on Wednesday if there is any way to get to Columbia in time for any sort of appointment.
Whew. As I told a friend earlier, while I absolutely and utterly know that I will marvel at God's hand when I'm looking back from the other side of this, I sure would like to know what He is thinking right now. :-) In His timeline, the details are all worked out and there is a plan for Noah's good and God's glory. I wish my faith were such that this knowledge were truly utterly enough for me, but I have to confess to a heavy heart tonight and a sense of concern about how this will play out.
Jeff is planning on bringing up all of the children tomorrow so we can be together and so that we can slip away to shop for Noah's birthday. I want to know that this job is done, and I know the children will enjoy all doing it together. Most of them have only ever been inside Toys R Us once in their lives, so this will be a huge treat. :-)
I'll update tomorrow when we know more of a plan. I'll probably get Hannah or Jeff to send updates on Wednesday once we know where we will be going.
Thank you for your prayers.
Blessings,
Kate
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Aug. 3, 2009 - ((((Hugs)))) & Prayers