The first few days home were filled with determining our new normal for the next few weeks. G is not allowed in a car until her follow up appt. Keeping her busy has proved tricky, but our friends and family have been so very generous with crafts, games and visits. She has already finished a few projects and even learned a few new skills!
The scheduling of G's follow up appointment has been a little difficult. When I first called the scheduling department, they scheduled her suture removal/follow up for 23 days post op. I told the scheduler that this was too long and needed in earlier, but she wouldn't budge on the date. So, I called the NS office directly and spoke to the triage nurse. She took a message and I waited for a call back. The day went by with no call back. I then called early the next morning to touch base. I am not clear where my message went or if anyone would have ever called me back. But after explaining, again, why I was calling, they found a place for G 14 days post op. This was the first negative experience I have has with this facility.
Another negative experience came the following day. I realized that G was very low on her pain medication and called the NS for a refill. It Is a highly scheduled drug, and I was afraid it would be a battle to get it refilled. G was still in need of an occasional dose due to pain just under the incision site near the area where they removed the piece of skull. We only give it if pain is a 7 or above. I had the same experience with this message not getting to right people as I had with the follow up appointment message. But finally was able to talk to a Nurse Practitioner. She was extremely nice but she informed me that G was no longer considered under their care. (Which surprised me since it is only 8 days out from surgery and sutures are still in.) Since she was no longer under their care, they will not refill the medication, and advised to contact our Pediatrician. This was Friday before I received this call back from the NS, and completely out of pain Meds. Our Pediatrician is out of office on Fridays (of course). So we had to speak with one of the other providers in the office.
They finally ok'd the script and sent to the pharmacy. DH was tasked with stopping by the store to pick it up. Before he got there, I received a call from the pediatrician office advising they withdrew the prescription due to a high risk alert that the pharmacy received when they attempted to fill it. Evidently it interacts with her Erythromycin which G takes for reflux. And by interacts, I mean respiratory and cardiac concerns. I plan to address this situation at our follow up next week since she was scheduled to receive both medications during her entire hospital stay. This concerns me very much.
Needless to say, we are back to only having Tylenol as an option for pain. It has been an issue only once so far, and seeing her in pain and only being able to do the bare minimum kills me.
G's incision has looked phenomenal for the first week. On post op day 6 I began noticing a small amount of redness at the bottom 1/2 inch of the incision. It has become slightly more red each day, but not terrible. While on the phone with the nurse practitioner we discussed it. Since there was limited swelling, no warmth and no drainage, we opted to watch over the weekend. I tend to think it is a reaction to the sutures, but her continued low grade fever has me on high alert.
On the subject of the low grade fever, I do have concerns with dosing Tylenol regularly due to the possibility of masking a higher fever. We went about 9 hours with no Tylenol today and it was during this timeframe when her temperature spiked close to 100. Again, the magic number is 100.5. Needless on say, we are continuing to monitor this closely.
There seems to be good days and bad days and the good definitely outweigh the bad. She gets very worn out in a short amount of time. Naps are rare except for her bad days. Headaches continue, but with less frequency and severity. Unfortunately she reports a return of the ringing in her ears. But it is different. The pitch and volume changes, and even is different from one ear to another at times. I am optimistic that this will improve, but I know this is one of the most chronic of G's symptoms and may not go away completely. She does report very occasional tingling, but again, I hope this is only a post op symptom that will eventually resolve.
We still consider the surgery as a success and are relieved with how well G has progressed this far.
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