Sam had a long clinic visit this past Monday with mostly great news. She received her IVIG transfusion which gives her passive immunity. This line of defense is made by your "t cell" line. While Sam's overall WBC has been holding steady on the lower end of "ok" over the last month, her t-cell and b-cell line are taking longer to recover which is not uncommon. The docs think she should be able to go 6 weeks before her next IVIG transfusion and because her counts have been steady, we decided to try to switch her anti-pneumonia medication from pentamadine (once per month transfusion) to a twice weekly g-tube medication. This medication can lower platelets and WBC though so we will have to monitor after a month of being on the medication and make sure her counts stay in a safe range. Her doc has put her on an effective but "conservative dose" and is hopeful she will not have any harsh side effects or drops in counts with this switch.
This translates in "real life" for us being able to go one month until our next clinic visit which is a HUGE breakthrough for us! Because of this and after a lot of discussion and going "back and forth" we decided to "pull" Sam's PICC line this past Monday. So besides her G-Tube she is now "unhooked!". We were very apprehensive about this decision for a variety of reasons. On a practical one, now Sam will have to be "poked" at least once at every clinic visit and keep a line in her arm when receiving IVIG which will be taped down and not as "secure" as her PICC line, so transfusion and lab days will be a lot more difficult. She has gotten to the point where she honestly has enjoyed seeing her favorite docs and nurses at clinic and there has been little "pain and fear" involved besides her dressing change. The dressing change has just recently gotten slightly better as we switched to a different brand so it was a hard call as to whether the "poke" once every 2 weeks or so OR weekly dressing change would be worse given her improvement in the area. The other somewhat "irrational" fear is what if she regresses/gets a virus/ we end up in inpatient and she needs to be treated for a "bump in the road?" We will then have to place a new PICC line and removing this one almost makes us feel like we may be "jinxing" the steadiness of the last month or so. Again, this is not based on any logical medical thought process, just "mommy worry" so the rational side won out obviously! Sam's skin is very raw and sore where the dressing/line has been for over six months. She has another pressure dressing on it for 24 hours and then after 48 hours, if it has scabbed over, we can leave it uncovered. It took her about a week or so when her PICC line on her other arm was removed to feel more comfortable with her arm exposed and for the skin to not cause any discomfort so I think this time will be similar. This allows Sam to have a little more freedom in the bath (although her G-tube can not be completely submerged but can get wet), and allow us to get rid of weekly home care nurse visits for dressing changes, daily cleaning/heparain flushes before bed, bi-weekly cap changes, and the responsibility for Brandon and I to coordinate and ensure we order and maintain the exact supplies needed/ organize them and keep up with all the care. It also decreases a slight risk of infection and clotting for Sam (although again these risks were very small.) I know this sounds like a "no brainer" in many ways, but given all that Sam's been through, limiting any PAIN or FEAR from her routine care is something we really take as seriously as the medical side.
All in all, I do think it was the right decision, but it was a weird feeling putting her to bed without having to care for her "magic arm" for the first time in almost a year. One would think it would just be joy, but it is a strange mix of emotions because it was also a great tool that helped her receive needed medications to get us to this point without pain. In a way it's been a "security blanket" knowing it was there if we needed it. She will need to be put under anesthesia in mid-december again for her g-tube replacement and won't have her PICC line to give her meds to help calm her before separation or to provide fluids after the procedure as we are accustomed. If her counts drop on Bactrim and we have to go back to Pentamadine, that will equate to bi-weekly transfusions that are two and four hours in length without her "pain free" magic arm. I am hopeful that this scenario won't transpire but I know at the first few clinic visits without her "magic arm" I will question this no matter what. As I hold her and she screams/cries as they draw labs and IV insertion for transfusions I will momentarily curse myself and think that the home care/flushes/ small risk of infection is fine if I can avoid any more instances of pain for our sweet girl. But like all things she has encountered, I am confident and hopeful that this moment of doubt will pass and we will start to feel more confident that we are truly on a slow, but finally steady path to full recovery!
After a busy clinic day, we also will have a busy weekend ahead. There is of course Halloween on Friday and then Kaeden's b-day is the next day. All of these are great/fun things but require us to do some risk analysis! Should we let Sam trick or treat up and down one city block? Should she wear a mask? Should we only go early before it is crowded? Should I hold her on the sidewalk while Kaeden gets the candy? Will she protest and want to go to the door just like him (most likely)? Do the benefits of taking part in this joyous "normal child" occasion at all outweigh the small risks (if we take precautions) of encountering some "bad germs"? And what about Kaeden's b-day party? Do we let her attend his party knowing she will have a blast? But this is indoors and with a large group of kids and so this increases the risks even more than an early trick or treating outdoors? If she doesn't come to the party how do we coordinate set-up and Kaeden not feeling "second" because Mom, Dad, or Baba will have to be with Sam and miss the party? In the end, we have agreed to "split the difference." We will go trick or treating but I will hold her and touch the candy and place it in her bag. I will wipe down all the candy she and Kaeden have in their bags with alcohol wipes before they touch them and Sam will not hand out candy at the door. She will also not attend Kaeden's b-day party this year and we will rotate Baba and Dad on Sam vs. party duties. It'll be OK!
Every day, "normal activities" and annual events definitely do require an extra layer of planning and coordination given Sam's restrictions. At times this can make us feel resentful watching a family eat out at a restaurant together, attending b-day parties with siblings, Halloween parades, school activities together, neighborhood events without a second thought. Luckily these thoughts and feelings quickly pass though and are replaced with feelings of relief and gratitude as we know there have been so many times over the last year we were hoping and praying to even be in this position to have to make these decisions. We do know how lucky we are to even be thinking about future b-days and hopefully there will be many parties ahead for sweet Sam!
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