What happens in 8 weeks???????
MAKE-A-WISH!!!
Brief recap, in August 2009, Gabriella wished for her Make a Wish trip. She had been telling us she wanted to go on the Disney boat (thank you Travel Channel...lol), but she was far too unstable to be out to sea at the time so we had to veer her away from that idea. Make a Wish planned a beautiful week long trip to Disney World instead, since Gabriella also said she wanted to go to Cinderellas castle! Of course, as most of you know, Gabriella suffered a massive stroke 2 weeks before going on her trip. The recovery from stroke, waiting for transplant, transplant and recovery, and adjustment time after there led us to January 2011 when she was finally deemed safe for travels!
When her Wish Granters came back to talk to Gabriella in February this year, almost exactly 18 months after her first visit, she boldly declared she wanted to go on the Disney boat! Make a Wish has put together a lovely 5 day, 4 night cruise out of Florida on the Disney Dream. We leave in a couple of months to enjoy this opportunity of a lifetime! One day of travel, 5 days on a boat and the plan was to fly home that night after we dock.
Gabriella picked 2 excursions from a list about 4 pages long! When we dock at Castaway Cay, Paul & his princess will be in thigh high waters alongside the ocean feeling and learning about sting rays. Gabriella LOVES sting rays... I think it is their velvety feel and how they flow like satin. Then when we dock at Nassau, she chose to do the 6 hour long dolphin encounter where we will have a lunch by a dolphin tank, go through the day to day life of a dolphin trainer and best of all, SWIM with dolphins! All 4 of us get to do this excursion and I don't know which one of us is more excited!!!!
Paul and I have put in SO much of our energy into making Gabriella feel like any other kid, and it shows in her attitude. She never acts like she is different or lacking in anything, because we absorb any of that for her and discipline her just the same. Her doctors, therapies and meds are just a part of her and we move on quickly from whatever we have to do that day medically to put more emphasis on our "normal" portions of life. We have seized opportunities to make memories and been able to give both of the kids more than we believed possible, because tomorrow is never guaranteed for anyone, but especially a medically fragile child. This Make-a-Wish trip is something monumental in that process for us, and I know that is what Make-a-Wish strives for. Something absolutely unattainable for a family like ours. An opportunity out of the ordinary for ALL of us in a positive way, not just out of the ordinary because we are a family with a "sick kid" on a lifetime medical journey. It is an escape, a memory to top all others and a way to "reward" my warrior princess and patient prince for the life they have been pushed into but embraced so well. I can only believe this is what all families feel about Make-a-Wish and that is why it has become such a passionate charity of mine, to which we try and frequently take donations of new toys and activities to. PLEASE contact your local chapter to see how you can help!!!!
Anyways....
Of course, you all have gotten to know us so well, that you know we would sell our souls to the devil for our kids. We encourage them to dream big... because nothing is impossible! In that, we asked Make-a-Wish to send us home from our cruise a few days later than planned, extending our trip at our own expense, and taking the kids to a place we will probably not be able to go to again in the near or distant future.... Disney WORLD! This means we will be responsible for hotel (that was ever so generously provided to us by a friend who has access to the good stuff), Disney World tickets and food for those extra few days. In the grand scheme, this is so minimal. The blessing of our flight already existing saves us that much money on a typical Disney World trip, and the intensity of the week already planned by Make a Wish already filling our cup of excitement, that we see food and tickets as something achievable and sugar on top of this wish.
We have been saving up for it for a couple months now, and I have been trying to do side jobs and sewing to make money. My side job has been SLOW but I am focusing my energy on sewing until my fingers bleed between now and then because it is something I can do any hour of the day without committing my time and risking not fulfilling due to an unexpected appointment or issue. I have rarely used this blog to promote my web ventures, but I think this is a fitting opportunity to do so since all the money will be used towards her trip extension! I have 2 shops online, one that sells my excess fabrics and one that sells my creations. I make custom tutu's, nursing covers, burp cloths, cloth wipes, diaper/wipe cases, etc. and am working on a batch of frilly flip flops that will be sold at a local hair salon! Here are the links to my shop if you would like to check them out:
Fabric Shop: http://www.etsy.com/shop/gabriellasheart
Sewing Shop: http://www.MaggieMooDesigns.com (past items sold can be seen here: SOLD ORDERS)
And as always, Gabriella's donation account through PayPal remains open and accessible from the right sidebar under 'How to Donate to Gabriella' (and PO Box mailing address under the Contact link above). I just ask that if you wish for any donations through there to be used for her trip, you put that in the donation notes so it can be expensed properly & honestly. This is very important!
I can't keep a full time job with Gabriella's demands, so this is my job. Making side money, selling my creations, and being the best mom possible to my little boogers! I thank you for sharing the links and spreading the word! I always believe it never hurts to put the need out there, because how else does God lead people to fill needs if they do not know they exist!!?
Monday, July 18, 2011
Saturday, July 16, 2011
Homebound, Homeschool, Charter, SpEd, oh my
Here it is again, the topic of school. Me, the mom who would rather homeschool for the first few years of education, and the battle of the pressure to send her to school. It is a constant stress in my heart.
I searched, interviewed and toured charter schools in April and May to prepare for Gabriella's 1st grade year this fall, fully knowing I was not going to put her in a general public school after what we saw and experienced for Kinder and those overworked teachers. I finally found a brand new school that I felt comfortable with, a place that FINALLY seemed like I could handle sending her to school. They have a dedicated speech therapist ON STAFF and a crazy strong focus on the students physical and mental well being. We got my godson into it and my sister in law even got a job there! Things were looking forward for Gabriella's ability to flow into a school setting and me be comfortable with it.
Then I got a call from the special ed department of the new school while Gabriella was in the hospital last month. Long story short, he proceeded to tell me that because another district wrote her IEP and she was on homebound status for Kinder, she would need to remain homebound through them until they were in a position to reevaluate her again and take her off homebound, then they would transition her slowly into a classroom setting. I was heartbroken, mainly because I had convinced myself this was what was happening, I was sending my princess off to school with kids and germs and self-sufficiency. I got my head wrapped around it, got her excited for it (even through her apprehensiveness) and it was going to happen. Then I was told to just erase my plan, it was all changing. That was a lot of work on my heart to get where I was and I did not take the news well.
Then it dawned on me, she was in rejection and given those hard core meds to stop it, which also meant knocking out her immunity again. Not only was she educationally and socially being held out of starting 1st grade, but now it was also medically necessary. I spoke to our transplant coordinator and she confirmed what I was thinking, and said it could be a few months into the year before her bloodwork shows us she is back at a level thats safe to be in school like that.
Great.
So now we are going to be starting 1st grade, yet again as a homebound student. We will be assigned a teacher, and after a couple months of homebound (medically permitting) she will start mornings only with me going with her, slowly weaning her (or me) into full time school. I don't know about you, but to me this is sounding like she will not be full time 1st grade until January or so.
I am struggling, yet again. Homebound, again. I feel even more now like she would be getting a better quality education if I enrolled her in the virtual home charter academy I have heard such great things about. Committed wholly to home school, local co-op field trips and groups, and the flexibility to meet all doctors, therapies AND school at our time schedule. Instead, we will spend another half of a school year in limbo... which doesn't excite me. Gabriella needs a structure, to be challenged and to be busy... and I feel I can have better control over that if I just commit to homeschooling.
I need to pray about this some more and try and eliminate from my pleas to God what MY plan is. School has been something of a struggle for me from the moment Gabriella was diagnosed, and I wish I had clarity towards one decision or another. Could you drop a line to God on my behalf? See if He tells you anything? :)
I searched, interviewed and toured charter schools in April and May to prepare for Gabriella's 1st grade year this fall, fully knowing I was not going to put her in a general public school after what we saw and experienced for Kinder and those overworked teachers. I finally found a brand new school that I felt comfortable with, a place that FINALLY seemed like I could handle sending her to school. They have a dedicated speech therapist ON STAFF and a crazy strong focus on the students physical and mental well being. We got my godson into it and my sister in law even got a job there! Things were looking forward for Gabriella's ability to flow into a school setting and me be comfortable with it.
Then I got a call from the special ed department of the new school while Gabriella was in the hospital last month. Long story short, he proceeded to tell me that because another district wrote her IEP and she was on homebound status for Kinder, she would need to remain homebound through them until they were in a position to reevaluate her again and take her off homebound, then they would transition her slowly into a classroom setting. I was heartbroken, mainly because I had convinced myself this was what was happening, I was sending my princess off to school with kids and germs and self-sufficiency. I got my head wrapped around it, got her excited for it (even through her apprehensiveness) and it was going to happen. Then I was told to just erase my plan, it was all changing. That was a lot of work on my heart to get where I was and I did not take the news well.
Then it dawned on me, she was in rejection and given those hard core meds to stop it, which also meant knocking out her immunity again. Not only was she educationally and socially being held out of starting 1st grade, but now it was also medically necessary. I spoke to our transplant coordinator and she confirmed what I was thinking, and said it could be a few months into the year before her bloodwork shows us she is back at a level thats safe to be in school like that.
Great.
So now we are going to be starting 1st grade, yet again as a homebound student. We will be assigned a teacher, and after a couple months of homebound (medically permitting) she will start mornings only with me going with her, slowly weaning her (or me) into full time school. I don't know about you, but to me this is sounding like she will not be full time 1st grade until January or so.
I am struggling, yet again. Homebound, again. I feel even more now like she would be getting a better quality education if I enrolled her in the virtual home charter academy I have heard such great things about. Committed wholly to home school, local co-op field trips and groups, and the flexibility to meet all doctors, therapies AND school at our time schedule. Instead, we will spend another half of a school year in limbo... which doesn't excite me. Gabriella needs a structure, to be challenged and to be busy... and I feel I can have better control over that if I just commit to homeschooling.
I need to pray about this some more and try and eliminate from my pleas to God what MY plan is. School has been something of a struggle for me from the moment Gabriella was diagnosed, and I wish I had clarity towards one decision or another. Could you drop a line to God on my behalf? See if He tells you anything? :)
Tuesday, July 12, 2011
Super resilient super girl
The last couple weeks have been pretty steady! Gabriella got her PICC line removed July 1 once her levels hit a more comfortable area, which meant we were able to go to my sisters house and SWIM on July 4! We have spent most of our time inside or at doctors, but have slightly ventured out to a few places with a mask on.
Gabriellas ECHO has been looking steady, and we have been able to increase her Lisinopril to aid in the recovery of the damage her rejection caused. Her bloodwork her been hovering around target ranges as well. We couldn't be more thankful for her recovery! Gabriella is now on weekly clinics again, pretty much up until her Make-a-Wish trip in September, to watch for any slight changes in her function. We will be doing blood work weekly as well, so I am sitting in a very comfortable spot as her mom knowing we are closely monitoring her. We also condensed her medication times and now we give meds 4 times a day verses 7.
No major medical updates besides these. It is just time now, giving her heart ample time to heal and recover. I have some more updates in the coming days on her school year & Make a Wish trip!
God Bless and thank you all for the continued prayers!
Gabriellas ECHO has been looking steady, and we have been able to increase her Lisinopril to aid in the recovery of the damage her rejection caused. Her bloodwork her been hovering around target ranges as well. We couldn't be more thankful for her recovery! Gabriella is now on weekly clinics again, pretty much up until her Make-a-Wish trip in September, to watch for any slight changes in her function. We will be doing blood work weekly as well, so I am sitting in a very comfortable spot as her mom knowing we are closely monitoring her. We also condensed her medication times and now we give meds 4 times a day verses 7.
No major medical updates besides these. It is just time now, giving her heart ample time to heal and recover. I have some more updates in the coming days on her school year & Make a Wish trip!
God Bless and thank you all for the continued prayers!
Wednesday, June 29, 2011
Final Genetics Results
In February, I posted preliminary results of Gaberiella's genetic testing. The full blog is here: http://listeningthruthenoise.blogspot.com/2011/02/genetic-testing-results.html but here is the most important excerpt:
And right before this recent stent in the hospital, I got our follow up results!!!!! We were scheduled to go in to genetics at Loma Linda, but this was cancelled due to her hospitalization. We will have to reschedule, but the genetic counselor at the genetics lab spoke to me in detail and explained the results.
Neither Paul, PJ nor myself carry the disease causing gene linked with HCM, mentioned above as the T gene. This means it was a "spontaneous" mutation (per the geneticist) or in my words, the way God carefully created her. Paul and PJ both carry the M gene, also called a variant gene. But without a disease causing gene for the variant gene to modify, it is a harmless gene.
This means so much. It means we do not have to worry about PJ having this same condition. It means we do not have to worry about this being a genetic condition passed through family lines to our 11 nieces and nephews or hundreds of cousins. It means that if we do choose to have more children one day, the risk of having another CHD baby is that of any other parent, 1 in 100, with only the added risk of the modifier gene being passed down.
I always say to everyone that God gave us Gabriella for a reason. Her story is to be shared as a physical reflection of His mercies and love. Regardless of the results, we would have believed this, but it makes it even more special and isolated knowing she truly is unique and was created with such intricacy, something we were blessed to be able to see through gene testing.
"I got a call today from the genetics doctor at Loma Linda. Everything is still in the very early stages of gathering some answers, but I will share a few things here. Gabriella did have a change in the gene associated with cardiomyopathy, meaning she was born with the mutation and it was not anything that happened during my pregnancy that caused her condition. That was a slight relief, because I naturally had little bits of me that wondered. The issue with this gene, which I will call the T gene because the code names won't mean anything to all of you, is that it is the type of mutation that shows in adult onset cardiomyopathy, in ones 20's or 30's. So why did Gabriella fall into heart failure at 4 years old? This take us to a second gene mutation they found, we will call the M gene. On file, this combination of mutations has not ever been recorded in a case of cardiomyopathy. Given that they have not seen this combined, there are no statistics or information available. The genetics doctor says this causes her to consider that the M gene mutation caused the T gene mutation to progress, causing Gabriella to fall into a condition she shouldn't have experienced until later in life and at a much less severe level. This M gene, in my understanding, is like an instigator that made the T gene issues bigger than they needed to be."
And right before this recent stent in the hospital, I got our follow up results!!!!! We were scheduled to go in to genetics at Loma Linda, but this was cancelled due to her hospitalization. We will have to reschedule, but the genetic counselor at the genetics lab spoke to me in detail and explained the results.
Neither Paul, PJ nor myself carry the disease causing gene linked with HCM, mentioned above as the T gene. This means it was a "spontaneous" mutation (per the geneticist) or in my words, the way God carefully created her. Paul and PJ both carry the M gene, also called a variant gene. But without a disease causing gene for the variant gene to modify, it is a harmless gene.
This means so much. It means we do not have to worry about PJ having this same condition. It means we do not have to worry about this being a genetic condition passed through family lines to our 11 nieces and nephews or hundreds of cousins. It means that if we do choose to have more children one day, the risk of having another CHD baby is that of any other parent, 1 in 100, with only the added risk of the modifier gene being passed down.
I always say to everyone that God gave us Gabriella for a reason. Her story is to be shared as a physical reflection of His mercies and love. Regardless of the results, we would have believed this, but it makes it even more special and isolated knowing she truly is unique and was created with such intricacy, something we were blessed to be able to see through gene testing.
Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Monday, June 27, 2011
Winning. Duh.
Gabriellas bloodwork done today by home health was great! Her levels of immunosuppressant are a little high now, which is better than low. Her magnesium levels are being stubborn but we will continue watching it. If her levels stay stable we will remove the PICC line before next weekend. We went in today for an ECHO and that too looked great! Function returning and leakage improving. We have a few more blood draws and a clinic appointment Thursday for this week and I am sure it will only get better!
Our coordinator was telling me how a girl they just did a biopsy on last week showed grade 3 rejection with no symptoms while Gabriella showed a grade 1-2 with total decline. Its amazing how rejection works and how it is so unique for each kiddo.
We don't know what our future holds with the risk of further rejection but I know this was another battle won by Gabriella! This girl keeps pushing on through whatever is handed to her.
Friday, June 24, 2011
HOME!
I'll quickly get to and past the hard part, because harping on my disappointment is not worth it. Long story short, we were moved from cardiac at 1am to the general peds floor. Thankfully it was a private room, but nonetheless it is more of a holding cell for kids like Gabriella. They needed the bed on cardiac, and I cannot blame the nurses, doctors, or any of our medical team. I'm disappointed in the hospital for opening a brand new, state of the art hospital set to cater to all the kids in the southwest at a level of excellence and they still have yet to open a cardiac step down for our kids who need more than general peds.
Anyways....
My lack of sleep last night over my aggrivation built confidence to tell the docs on the unit I wanted out today. She isn't on any advanced monitoring and only here to take meds orally & have blood drawn. Luckily my amazing transplant team agreed and is sending us home on home health and a PICC line. A nurse will come and draw levels daily so we can intricately adjust her med levels. We got her 12 outpatient meds delivered and sorted, my advanced schedule of 7 med times through the day and supplies to get us by at home. One last dressing change and we are waiting for transport to take us out!!!
We will proceed with caution for a while. Since she has a PICC line, just finished an aggressive immunity treatment over the last 2 weeks and her levels are lower than desired of immunosuppressant, we will be semi-hermit for a while. Well worth the trade off to be home and in our element.
I couldn't be more blessed to be sitting here watching her do so well again. Makes these last 15 days away from home, away from PJ & Paul and sleeping on a recliner with infrequent showers SO worth it. I'm so honored to have a fighter on my hands. I need to remember this when she is strong willed about other things... I'd rather have her stubborn than one who gives up!!!
Anyways....
My lack of sleep last night over my aggrivation built confidence to tell the docs on the unit I wanted out today. She isn't on any advanced monitoring and only here to take meds orally & have blood drawn. Luckily my amazing transplant team agreed and is sending us home on home health and a PICC line. A nurse will come and draw levels daily so we can intricately adjust her med levels. We got her 12 outpatient meds delivered and sorted, my advanced schedule of 7 med times through the day and supplies to get us by at home. One last dressing change and we are waiting for transport to take us out!!!
We will proceed with caution for a while. Since she has a PICC line, just finished an aggressive immunity treatment over the last 2 weeks and her levels are lower than desired of immunosuppressant, we will be semi-hermit for a while. Well worth the trade off to be home and in our element.
I couldn't be more blessed to be sitting here watching her do so well again. Makes these last 15 days away from home, away from PJ & Paul and sleeping on a recliner with infrequent showers SO worth it. I'm so honored to have a fighter on my hands. I need to remember this when she is strong willed about other things... I'd rather have her stubborn than one who gives up!!!
Wednesday, June 22, 2011
Extended Vacation
The overall idea was that we were going home today. Any of you used to ICU life, you know we don't ever mention a specific day, we don't pack our stuff and we don't make plans around a specific date. Turns out, we are NOT in headed home... Because Gabriellas body is as stubborn as her mind! Her magnesium levels continue to be low, regardless of how much IV or oral replacement we give her. Today, to top it off, her immunosuppression (tacrolimus) levels are HALF of what they should be. This is a big issue because if her levels aren't right she could face rejection again, especially so fresh off of a major rejection episode! So we are staying here to get it all figured out. We have spread out her medications to 6 administration times throughout the day and night (27 actual drug administrations) to prevent interaction or absorption effects and see if we can get her levels on track. She had an ECHO today that I'm still waiting on specifics from. I'm not going to say tomorrow, or Friday, but I will say I hope its before Sunday so I can spend a day with my family all together!!!
We were supposed to be in Loma Linda right now for genetics, biopsy & kidney function testing. Seeing as how its 113 in Phoenix, if we can't be in California, I'll find the positive in being here that we are not outside!
We are now a few rooms down from some transplant friends. Please pray for little L, who is almost 1year post transplant and having lung & intestinal issues! I love seeing our friends, just wish it wasn't in the CVICU. :)
I'm so thankful for this gorgeous new hospital. It truly is comfortable in an odd way. We don't feel cooped up at all and are thankful for the amazing nurses we have had. It has all made a difficult issue tolerable and we will stay willingly until she is safe to leave!
We were supposed to be in Loma Linda right now for genetics, biopsy & kidney function testing. Seeing as how its 113 in Phoenix, if we can't be in California, I'll find the positive in being here that we are not outside!
We are now a few rooms down from some transplant friends. Please pray for little L, who is almost 1year post transplant and having lung & intestinal issues! I love seeing our friends, just wish it wasn't in the CVICU. :)
I'm so thankful for this gorgeous new hospital. It truly is comfortable in an odd way. We don't feel cooped up at all and are thankful for the amazing nurses we have had. It has all made a difficult issue tolerable and we will stay willingly until she is safe to leave!
Monday, June 20, 2011
Another wonderful day
Another ECHO today showed more progress! Every millimeter smaller, every droplet less of leakage and every number change is welcomed by us!
They have stopped Gabriellas IV epinephrine and her r-ATG treatments are complete. Today they stopped her IV Lidocaine, magnesium and sodium fluids... And we are hoping she reacts well! The next step is to stop her IV Milrinone.... But that will come in it's own time. Her r-ATG did it's job, depleting her t-cells, and it was successful in stopping her rejection.
So we have gone our first round of rejection, and it was a severe one! We are ever faithful that this will not happen again, but we will not take for granted the healthy times we have and will always be on guard now that we know she is the kind of kid to quietly fall into full blown rejection.
If we can get her levels right of immunosuppressants, get her magnesium and sodium levels back up to where they should be and continue to see progress, we can get out of here! Last night was night eleven here, which could have been miserable in the old unit but is luxurious and tolerable here at the new tower of the hospital!
Thank you all for prayers up to now, and we ask that you do not stop! We believe in complete healing and restoration, and all God wants is for us to simply ask. Prayers to Him are precious not just for him but also us. God is always near, always listening, and does not need fancy words... Just loving meaningful conversation. How lucky are we to serve such an amazing god....
They have stopped Gabriellas IV epinephrine and her r-ATG treatments are complete. Today they stopped her IV Lidocaine, magnesium and sodium fluids... And we are hoping she reacts well! The next step is to stop her IV Milrinone.... But that will come in it's own time. Her r-ATG did it's job, depleting her t-cells, and it was successful in stopping her rejection.
So we have gone our first round of rejection, and it was a severe one! We are ever faithful that this will not happen again, but we will not take for granted the healthy times we have and will always be on guard now that we know she is the kind of kid to quietly fall into full blown rejection.
If we can get her levels right of immunosuppressants, get her magnesium and sodium levels back up to where they should be and continue to see progress, we can get out of here! Last night was night eleven here, which could have been miserable in the old unit but is luxurious and tolerable here at the new tower of the hospital!
Thank you all for prayers up to now, and we ask that you do not stop! We believe in complete healing and restoration, and all God wants is for us to simply ask. Prayers to Him are precious not just for him but also us. God is always near, always listening, and does not need fancy words... Just loving meaningful conversation. How lucky are we to serve such an amazing god....
Saturday, June 18, 2011
Sparkle, sparkle little heart
Yesterday was another glimmer... As ECHO showed further improvement in her heart function! Her overall energy and morale was also wonderful! She had some bedside OT and PT to help with her weak legs and arm. We managed to be so busy she didn't watch ANY TV so I was relieved! Her bloodwork is also showing that the r-ATG is doing its job and diminshing her t-cell count. We have 2 doses left of r-ATG and will be done by Monday morning with it.
The game plan is to finish the r-ATG and get her off other IV meds, switching most to oral. Since she is moving towards being stable enough to go home mid to late next week, we will be checking blood and ECHO every 2 weeks after discharge to keep her out of here. She also will have another biopsy in 1 month to recheck pressures and rejection. The r-ATG treatment will take 3-6 months to fully remove from her system, so we will watch her blood counts to see when she is 'safe' again, but until then she is back to wearing a mask and keeping home more than we had been. This affects school in August (along with other factors I learned yesterday), something far too complicated and better suited for another blog this week when I have time to go into detail.
Gabriella is going home on more meds than she did post transplant! We are going back to all of the original meds she was sent home on last year, plus supplements of nutrients she is lacking, plus meds for her declined function. Her heart needs a significant recovery time, so we will watch for signs of improvement in the relaxing phase of her heart- the function that was badly affected. One day we will attempt to lower the function medications and see how her heart reacts. We are faithful for full restoration though, and will allow God His timing in doing that.
We haven't wanted for anything in here. Nurses have been wonderful and spoil my girl rotten, the gifts & activities have poured in like candy to keep us busy, I have snacks galore, but more importantly we have felt the love in every visit or message. We haven't really felt lonely up here because there is always someone calling, messaging or visiting to make us feel connected to outside. We do miss our hard working daddy, and little brother PJ, but we are doing what we need to in the short term to have long term time together.
God bless every one of you. I hope your Fathers Day weekend is filled with as much hope and blessings as ours!!!!
Thursday, June 16, 2011
IMPROVEMENT
ECHO HAS IMPROVED! Treatments are working and function shows her heart is working slightly better! We couldn't be more relieved for this direction!!!!
Please continue to be fervent in prayer! The cries to heaven are working and we know God will guide the doctors and provide complete healing... Our faith has never wavered!
Wednesday, June 15, 2011
Watch & wait
The initial option today was to transport Gabriella back to Loma Linda. Reasoning behind that was more big picture. IF she goes into a more critical status where she needs ECMO, Loma Linda has the resources to care for her from a transplant standpoint. They can relist her while they cannot yet do that here. After we all conferenced with Loma Linda, they encouraged us to keep on with the full Thymo treatment and watch what her blood says. They said they'd be happy to take Gabriella but they are confident in the treatment. So we are staying here for the time being while Loma Linda runs some in depth labs on her. I'm confident in the plan, but not comfortable. I won't be until they see improvement in her. But I won't be comfortable anywhere until she improves. And that's what I continue to ask for in prayer, is improved function and restored structure.
Gabriellas spirits are completely turned around today. With the exception of being angry that she can't walk around, she's overall in good spirits! We have had loving friends, comforting family and faithful prayer warriors come today and it is just what we needed to keep us smiling.
Like Paul said to me earlier, we need more than medicine... we need God.
I'm going to have an 'iced tea party' with my smiling girl, enjoy right now and pray for many many many more years of tea parties. <3
Tuesday, June 14, 2011
Just a bit longer
A quick update before I attempt some sleep. Biopsy results are still pending. Cellular results came back a 1a rejection, very minor rejection with minimal impact... and the results could have been altered by the IVIG treatment or by something else going on in her body. And that surely did not cause her rapid heart decline so it is no concern right now.
We are pending biopsy stains on humoral rejection. I was going to post details on that but will wait because the stats aren't anything I want to keep looking at until we find out a diagnosis. If it is not humoral, we will further investigate.
Gabriella is critical so I ask that you do not stop praying for clarity of diagnosis and Gods continued protection over our princess. We have been enveloped by your prayers and blessed by the kind words. I am trying as hard as possible to reply to all, but I am reading them all for sure.
God bless, from a mommas broken heart. Good night.
We are pending biopsy stains on humoral rejection. I was going to post details on that but will wait because the stats aren't anything I want to keep looking at until we find out a diagnosis. If it is not humoral, we will further investigate.
Gabriella is critical so I ask that you do not stop praying for clarity of diagnosis and Gods continued protection over our princess. We have been enveloped by your prayers and blessed by the kind words. I am trying as hard as possible to reply to all, but I am reading them all for sure.
God bless, from a mommas broken heart. Good night.
Impatient Momma
For the medically savvy: Last nights r-ATG treatment went well with little reaction. Today they decided to start another medication called Epinephrine for her heart function, since cardiology was surprised at the more critical status her cath showed. Along with the Milrinone, steroid, fluids & lasix. We are trying to combat her heart failure while also attacking her rejection.
They just finished placing a PICC line and will remove her IV leaving just the PICC in her arm and plasmapharesis cath in her neck. I had a minor freak out session because it seems we are placing a lot of ports with no sure direction, but after talking to the docs I'm better understanding of it. Goes with my theory that if you don't feel right make them convince you. It was the first PICC I stayed in for but it went well.
She's peeing more and we are watching her renal system for kidney function to make sure that doesn't give out on us.
Once we get these biopsy results back we will decide whether we move forward with plasmapharesis or r-ATG (thymo). Whatever it is, I wanna know now. Time is ticking and doctors are anxious.
Gabriella is very tired and sad. She keeps asking me why she has to do scary stuff. PJ went to Bible Camp today and she was sad she couldn't go. This is so hard on her 6 year old little spirit, but her willpower & stubbornness is still in tack! Even after 3 doses of light sedative, she was still telling the PICC team what to do.
Who else gets to hang with a warrior today? I know I do. I love that girl.
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry
Monday, June 13, 2011
Treatment
So we are changing our course of treatment. After Loma Linda heard about the results of the cath, which showed extremely high pressures and a stiffened heart, they decided an aggressive treatment was necessary. They will be starting Thymoglobulin, what was given immediately after transplant to completely wipe her system. Whatever is going on with her heart needs to be tackled quickly because of the speed of her decline. Thymo has a lot of risks but in light of what's going on, they are risks that need to be taken. It will run slow and we will take it day by day, watching for progress and side effects. Tomorrow we will also get the results of e biopsy and decide if we are on the right path or if something more effective comes to lig with the results.
(edited to add: the r-ATG, which is the kind of Thymo Gabriella is getting is made from rabbits. r-ATG is made by injecting rabbits with white blood cells. The rabbit's immune system makes antibodies to destroy the foreign white cells. The antibodies are collected and purified to make r-ATG. Fun fact for the evening.)
Gabriella is struggling with the sedatives, and we had to further sedate her to keep her calm. It is very hard when she wakes because she cries that she is done and wants to go home. The intensivist has stopped rounds for tonight on the floor to get Gabriella taken care of, her transplant coordinators from here and Loma Linda have been calling me faithfully and everyone is working hard on tackling this rejection.
I just ask that you all pray for clear communication between all doctors involved, strength in Gabriellas body to keep pushing and full restoration of her heart function.
(edited to add: the r-ATG, which is the kind of Thymo Gabriella is getting is made from rabbits. r-ATG is made by injecting rabbits with white blood cells. The rabbit's immune system makes antibodies to destroy the foreign white cells. The antibodies are collected and purified to make r-ATG. Fun fact for the evening.)
Gabriella is struggling with the sedatives, and we had to further sedate her to keep her calm. It is very hard when she wakes because she cries that she is done and wants to go home. The intensivist has stopped rounds for tonight on the floor to get Gabriella taken care of, her transplant coordinators from here and Loma Linda have been calling me faithfully and everyone is working hard on tackling this rejection.
I just ask that you all pray for clear communication between all doctors involved, strength in Gabriellas body to keep pushing and full restoration of her heart function.
Rejection Results
The whole weekend of testing and waiting gave us results today, just not the ones we wanted. Her echo showed worsened function and they decided she is almost definitely in antibody mediated rejection. What we have always watched for was cellular rejection, where the heart tissue itself was in rejection, and is how we treated it this weekend but in fact was not. This antibody mediated rejection is caused by antibodies in her blood that are damaging her heart.
They are going to do a biopsy/cath here at 430 PST to check her coronary arteries and take a few tissue samples. They will also place a dialysis style port in her neck to start plasmapharesis tomorrow, pending biopsy results. Plasmapheresis is like a dialysis, where they pull her blood out, remove the plasma containing the bad antibodies and insert the cleaned blood with a donor plasma. This will be up to 10days of treatment, but I am waiting to hear the protocol from Loma Linda for Gabriella. It will also wipe out her immune system like the days after transplant so we must go back to original precautions w a mask & germs.
They also will place her on a medication to relax her aorta and redirect the increased regurgitated in her mitral valve that this rejection has caused. Stopping this rejection could or could not reverse damage, but for now we will just treat what it has done.
Loma Linda is guiding our wonderful cardiologists here in Arizona and overall I feel comfortable. The teamwork gives us comfort and we will not loose faith. This should be what we need to get her out of rejection, and we will pray that into action. Here forward we will increase her daily immunosupression meds to prevent this again. But for now we are praying her cath lab procedures go smoothly, the treatments work and her heart is a sparkly as ever when this is said and done.
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry
They are going to do a biopsy/cath here at 430 PST to check her coronary arteries and take a few tissue samples. They will also place a dialysis style port in her neck to start plasmapharesis tomorrow, pending biopsy results. Plasmapheresis is like a dialysis, where they pull her blood out, remove the plasma containing the bad antibodies and insert the cleaned blood with a donor plasma. This will be up to 10days of treatment, but I am waiting to hear the protocol from Loma Linda for Gabriella. It will also wipe out her immune system like the days after transplant so we must go back to original precautions w a mask & germs.
They also will place her on a medication to relax her aorta and redirect the increased regurgitated in her mitral valve that this rejection has caused. Stopping this rejection could or could not reverse damage, but for now we will just treat what it has done.
Loma Linda is guiding our wonderful cardiologists here in Arizona and overall I feel comfortable. The teamwork gives us comfort and we will not loose faith. This should be what we need to get her out of rejection, and we will pray that into action. Here forward we will increase her daily immunosupression meds to prevent this again. But for now we are praying her cath lab procedures go smoothly, the treatments work and her heart is a sparkly as ever when this is said and done.
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry
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