Landon's Journey through CDH
Thursday, February 10, 2011
Landon Grew Wings!
Yesterday, Landon grew his wings and became an angel. Landon was 23 days old. We received a phone call yesterday morning as I posted in the last post for urgent prayers needed. They had put Landon on maximum support literally because they had nothing else they could resort to. It broke my heart to see my sweet little baby laying there helplessly trying to fight with everything he had. They tried switching him back to the conventional ventilator when his O2 sats were in the 60s and they went up to around 75ish but only for a very few short minutes. They dropped drastically into the 50s so they switched him back to the oscillator. He didn't really improve. Dr. Dykes told us then there was nothing else she could do for him. This really broke my heart into a million little pieces that I was going to lose my son. I think this is every mother's nightmare and worst fear. He then started going down in the 40s then 30s and we knew it was getting time for him to go home. They turned the monitors off so we couldn't see them. Daddy held his son for the first and last time alive. I held him after then Pops and then he had passed away in Pop's arms with maximum support. He was just so ill he couldn't fight anymore. At least he's not suffering anymore and has a new perfect body that he will never hurt in again. Mimi held her grandson for the first time after he had passed. We had a photographer come in to do pictures with us and baby Landon. We miss baby Landon so very much. I can honestly say that they really did everything they could possibly do to save my little fighter. It was just his time to go. Thomas and I did sign for them to do a partial autopsy of his chest and abdomen for us to have closure. To answer questions like would he have made it whether he had the surgery or not? If he had enough lung? Or if they just missed something during the process of everything? Thomas and I just couldn't live NOT knowing what was really going on in there. I just can't express the appreciation Thomas and I have for each and every person that prayed for Landon and us or that sent us words of encouragement or just thought of us through out the day. Landon is now our guardian angel that is happy and living pain free. Mommy and Daddy will always love you sweet angel. You will always have our hearts and our love. May God Bless you all!!
Wednesday, February 9, 2011
Urgent prayer needed for Landon.
We recieved yet another phone call this morning at 5:20 from the hospital that Landon was not doing well. His O2 sats have went down in the 70s and he's already on maximum support on the oscillator. They have upped his dosage on his blood pressure medicines, his paralyzing meds, and giving him 2 bags of normal saline and nothing seems to be helping him. They are working vigorously trying to find SOMETHING that will help. I'm asking everyone right now to say a little pray for my sweet baby boy. He has already gone through so much and I just pray that he starts having some good days. Thank you all so much!
Tuesday, February 8, 2011
February 8, 2011
Landon had another bad night last night. His O2 sats went down in the 60s and heart rate went over 200. They then had to resort to putting him on the oscillator to help stabilize him. Thomas and I didn't find out this information until this morning since they had failed to call us last night to let us know anything about it. The doctor's excuse was that she wanted us to rest and the nurse's excuse was that she didn't know to call us. I liked the doctor's excuse better but I was still pretty mad. Anyway, he has been pretty stable today. He doesn't like being touched or moved very much right now. He starts dropping his O2 sats down in the 70s and 80s. His heart rate did come down a little today to like 165-175. This was an improvement for him seeing as it has been hanging around 190-200. We ask you all to pray that he fights this infection off very quickly so my little man can have his surgery and start getting better. I really pray that he starts having better days than he has been! May God Bless You All!
Monday, February 7, 2011
Rough Days for Landon :( 3 weeks old today!
This yeast infection that Landon has is really getting my poor baby down. :( On the 5th his fever wouldn't break and he started having problems with his blood pressure. At 2:37 AM on 2/6/11 my phone started ringing and it was Egleston. Thomas and I knew something wasn't good because they don't call you in the middle of the night for good news. So of course we threw clothes on and rushed up to Egleston. Landon had been desating as far as the 50's for his O2 saturations since midnight. They had to bump him up to 100% oxygen and the highest settings on his ventilator along with putting him on nitric oxide to keep him stable. He had to be put on a lot of blood pressure support to keep it stable. Then around 9AM or so they called and needed consent to put a new central line in so they could remove the one in his neck. They believe that the cause of the infection was the old one in his neck. We gave consent and tried to get a little more sleep. They called us again and said that their attempt failed and wanted to take him to OR and see if they could place one in the other side of his neck. They did an ECHO before they took him to see how his pulmonary hypertension was and it was very severe. Almost as bad as when he was on ECMO. So Dr. Moore then canceled taking him to OR. He felt that it was too risky to move him with his pulmonary hypertension so severe. They wanted to try for another groin attempt for the central line. So he called his friend that was a Cardiologist to come take a look to see if he could get it in. He was able to get it in. So they got the old one out. Landon had a pretty calm night. No phone call in the middle of the night last night. Called to check on him this morning and he was still on a lot of blood pressure support but they were able to wean him down on his ventilator settings! Thank God. I was talking to Thomas the other night and said you know Landon has been through more in his 3 weeks of life than most people go through in their entire life. He is a little fighter. We ask that you continue to pray for our sweet little boy because we know that God still works miracles all the time!
Friday, February 4, 2011
Landon Update!
Landon has had good days these past couple of days. O2 sats had been good and had been weaning him down on his ventilator settings. Mommy finally got to hold him yesterday at 17 days old for 3 hours! Was definitely the best 3 hours, just wasn't long enough! Well, last night he started running a fever. Wasn't too terribly high but then started getting higher today. They did some cultures last night to see if it was an infection, those didn't show anything so they thought it may have been some withdrawls from weaning him off the morphine. So today she gave him back a little bit of the morphine and started some antibiotics just to be on the safe side. They re-did the cultures today and it did come back positive for a yeast infection. Therefore this delays surgery and now it could be up to 3 weeks before we get repaired now! :( Prayers are definitely appreciated! I'll update again soon!
God Bless,
Amanda Sprayberry
God Bless,
Amanda Sprayberry
Tuesday, February 1, 2011
February 1, 2011
Landon was good all night long. He stayed stable through the night. His blood gases, O2, and everything stayed good through out the night and all day today. They changed his bed and faced him the other direction in his bed. I've been able to change his diaper today, but daddy hasnt wanted to since he still has some iv's and things in his feet. He will get more comfortable with it soon though. His nurse Amy and I gave him a lotion bath this morning and he tolerated it well. He definitely has a good grip he didn't wanna let go. We talked with Dr. Dykes today and it seems like we're looking at surgery to repair him sometime next week. But this is all subject to change! They are going to be moving him around in different positions to try and get some of the fluids off of him. She said that we may be able to hold him in a few days as long as he stays stable. Mommy will be very emotional on this day! but thats okay. They did discontinue his paralyzing medicine so he's able to move around. Were hoping he keeps having good days like these so we can keep improving and get to go HOME!
January 31, 2011
Today, baby Landon came off ECMO. Yesterday we were told by pretty much every doctor that we talked to to get prepared to lose our son. I would not accept that God had brought us this far, he would bring us all the way. Landon proved all the doctors wrong today and made a complete 180 from yesterday! They could wean like crazy on ECMO and he did great! They did his O2 challenge and it was okay but not great. They capped off ECMO so basically it wasnt doing anything for him. It was all the ventilator and Landon. He did great! They did the surgery around 4:30 or so and we got to go back and see him shortly after they were finished. It was so weird to see him without all the tubes, but a good weird. Since I had not seen him without all the "stuff" hooked up to him. Thomas and I will be staying at the hospital with Landon tonight. We went back after surgery and talked to him and he popped his eyes open for a brief minute and of course mommy cried. It was the first time I had truely seen his eyes open and it was so precious. Today was also the first day I changed his diaper. Thank you all so much for the continued prayers and we ask to keep them coming. Our next hurdle will be getting repaired.
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