As I sit here, holding my precious baby with bad kidneys, my heart breaks!
I am a member of a Facebook group of moms to kidney kids and try to keep up with the development of all the little heroes of the group. Several of the babies/kids have Facebook pages that I've "liked" in order to follow them.
This morning, heaven gained another angel in a precious 6 month old, Ian James.
It's just not fair! I am sooooooo thankful of Maci's progress because not all of the parents or babies are as lucky or blessed as we have been with Maci. Just because a baby is born with kidney failure doesn't mean they get on dialysis and grow until they are able to receive a transplant. So many babies have other health needs in addition to kidney failure. Some just don't do well on dialysis.
I will go to MY grave advocating for organ donor awareness and kidney disease awareness!!!!!!!!
Please pray for the James family during their time of mourning. They will have the viewing and celebration of life service on Wednesday, October 10.
Another fellow kidney mom who's child has had a transplant was informed by her child's kidney doc that they want to look further into a few things as her child could possibly have a form of lymphoma only found in transplant patients. REALLY!!!????? Kidney failure, countless days, months on dialysis, a transplant from a living donor giving "new life" and now THIS???? It makes me so very angry! I can only hope and pray that this is a precaution and they find NOTHING. NOTHING. NOTHING.
Today is Sunday, October 14th.
It is only one month and 5 days until my little hero will be A YEAR OLD! Man, time has flown.
She has her first tooth. I discovered it in the middle of the night on Friday, October 5/Saturday, October 6. I cried. She's growing up on me......I guess it just makes me a little sad that I missed her first 4 1/2 months of her being a typical baby while she was in the NICU. I can never get that time back but I also believe she was exactly where she needed to be for those first 4 1/2 months.
The tooth...I guess this could explain the odd sleeping pattern too. She NEVER ran a fever. She never slobbered. She never had diarhhea. That's my Maci.....never the ideal.
As of this evening, her current weight is 20.438 lbs. We have 1.532 lbs to go!!!!!!!!!!!! It makes me nearly hyperventilate at the thought of transplant time. OMGAH.....OMGAH it makes my heart so happy. We have monthly kidney clinic on Tuesday so I will be asking Dr. Hastings a ton of questions.
Yesterday we spent the day at Le Bonheur because Maci's dialysis drain fluid was a bit hazy and it had pieces of fibrin in it. We went to the ER to provide samples of the fluid in Maci's peritineum (the area where the junk is filtered during dialysis since her kidneys do not filter. The initial lab results were that there were no high white blood cells indicating NO infection. They also did a culture that would determine any infection should something grow within or after 24 hours. I did not receive a call from her doc today so I am assuming we are in the clear there as well.
We were able to come home with instructions of putting heparin in her dialysis fluid that night and to continue for two nights, after the last night of seeing "junk". We had clear fluid last night so hopefully tomorrow night is our last night to use the heparin.
What is fibrin? What is Heparin?
"Peritoneal dialysis (PD) is the renal replacement modality for 16% of the end-stage renal disease (ESRD) population. During the course of regular PD, peritoneal fibrin is occasionally seen in the dialysate. However, this is more common when the course of disease is complicated by peritonitis. The appearance of fibrin in the PD effluent can lead to catheter blockage and, if excessive and unopposed, can in theory result in peritoneal adhesions and loss of peritoneal-membrane function. These complications, it is believed, can be prevented by the timely administration of heparin to PD fluid."
Heparin, in brief is an anticoagulant. It helps prevent fibrin from causing a blockage in or to the catheter which would render dialysis ineffective.
I sincerely hope that this is the LAST time we have to go to Le Bonheur, unscheduled. When they said we could go home, we went upstairs to the NICU for a visit. It really is nice to see her nurses and we got to see one that we haven't seen since we left in April! We also got to see our favorite Neonatologist, Dr. Party Rock.
I love, love, love these people and I am so thankful that we do get to see them and visit whenever possible.
Now, as much as I would love to type more about my love for Le Bonheur, the docs, the nurse practitioners, the nurses, the dieticians, the social workers, the cafeteria staff, the environmental services staff, the lab peeps.....while I am able to use the laptop I MUST do some homework for Maci's birthday party.
I will try to update as soon after Tuesday as I can with any info I learned on transplant. :)
Thank you all as always for loving my Moo, for praying for her, for us, for following our progress. It truly is a blessing and always appreciated.
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