Lindsay with Uncle Rick from California.
Lindsay with Grandma
Lindsay with Grandma
Lindsay with Kirk
What is impressive is that she was able to stay in the same outfit for all the visits! ha ha
Subject #1~Needless to say, Saturday was a wonderful day! Having visitors here in Ann Arbor was great and we really enjoyed talking to some other people besides nurses and doctors.......NO OFFENCE to our wonderful medical staff! :-) Lindsay was definitely tuckered out but was able to nap between visitors. She was awake and smiling for everyone! I have posted photos of the great day! We love you all! Yes, Aunt Debbie and Jennifer, we missed you too!!
Subject #2~ As some of you may know, I went home for a few days in order to attend Cole's school conference on Monday evening. The boys, JR, and I headed home on Sunday and Lindsay was doing just fine. Just before we left, she had a leak in one of her PICC line extensions and the result of the was that it needed to be re-wired. When we all arrived at home, I called to check in on her and the re-wiring was going to take place on Monday at noon and has to be done in the cath lab of all places. Now, we know the princess does not do well in the cath lab so the decision was that I was headed back to A2 Monday morning to be here for the procedure. Chances are that she would come back on oxygen, etc. Well, because she was having increasing temperatures but not officially a spike, they went ahead and got on top of getting cultures to see about an infection especially with the new issue with the PICC line. So, the culture came back as a "possible" gram positive. hmmmmmm. Because it was a possible, they drew another and still waiting on results from yesterday's and today's. She will need two negative results before they re-wire the line in case the infection is in the PICC line. Otherwise, we would have a HUGE problem! So......we wait. In the meantime, Lindsay had to have another line put in in order to get her Lasix and Diuril. Because milrinone and the diuretics are not compatible, it is necessary. Well, that line was in her arm, and today it clotted off. So, she had to get poked again and now the line is in her foot. So far so good with this one. Also, they are not too crazy about getting blood gasses from her PICC line in fear of loosing it, so they have to poke her heals. Her poor little heals look like pin cushions! So, pray that the cultures come back negative and we can get going on re-wiring this PICC line and then back to normal for her.
Subject #3~ We did have a meeting with the transplant coordinators last Friday. We talked allot about plans for moving forward in finding Lindsay her heart. Thus far, Rituxin has not worked that great. It is working but not well and fast enough. There are other medications to try when we need to but they are very harsh and actually have "chemo" consequences such as hair falling out, vomiting, etc. We are not to that point yet, but it is out there. Another thing that we learned is that latest studies show the Rituxin is really pointless to use more than once a month. So, that is what we will be doing. Apparently the new tissue specialist, or something like that, was in town and Dr. G and Meg spoke allot about Lindsay. In the meeting, we also spoke allot about her trying the hemi-fontan again. They said they would speak to Dr. Devaney(surgeon) about it and get back with us with what he says about it. Really, the cardiologists could agree that she couldn't do it but it is really up to Dr. Devaney. The surgeon really has the last say if things make sense. Well, we heard today that the hemi is officially off the table. Her pressures are just way to high and that we would most likely end up in the same boat as last time. Talk about being bummed out today!! Now, transplant IS our ONLY option. So, please continue to pray that we find a tissue match for Lindsay and that she will be able to come home with us. We know God can work miracles but just praying that Lindsay is on that miracle list to be checked off....and soon! On the other side of this, we are praying for a heart and that heart has to come from come other little baby. I cannot, even still, think about the pain another family will have to go through in order for this to happen. This pulls at our heartstrings in ways that are unimaginable. Today, of all days, I wish I could get a preview of what God has planned for Lindsay.
I think I have given enough information today that will last everyone a while. Enjoy the photos of the princess. She is still a very happy baby and we are thanking God for our good days with her.
Much love to you all~
Prayer Request: I came across the blog of soon to be born Lilliana the other day and proud to announce that she came into this world in the wee hours of the morning today happy and breathing on her own. She too has HLHS. Please pray for this family and the endeavours that they are about to come upon. They have her in the NICU right now and just evaluating and deciding when to do the Norwood. Please feel free to follow their journey along with me.