Thursday, November 26, 2009

My baby is a bacteria breeding machine!

I deleted my last post it was a wee bit to psycho. Quick recap from that update was that Jacob was having an 8 day crying spree that has ended for the most part. Andrew and Jacob are still passing some kinda of stomach virus back and forth and Logan was doing his usual up and down on his oxgen. He was coming off steroids and weening his sedation meds. Andrew and Jacob had also both seen a cardiologist and Jacob heart is no longer enlarged and is totally normal now. Andrew still has a very small PDA that will be followed up in 6 months. Both the boys eyes are mature and normal now and both have follow-ups in May '10.

Now to the present. Sunday 11-22-09 Logan crashed again respiratory wise. He was lethargic and unresponsive. He was on 100% oxygen and sating around 74 for hours. Some genius finally decided to get a blood gas on him. His Co2 was 180! Normal range is 35-45 with normal being 40. Logan's normal ranges from the 50's to the 70's. If you or me had a co2 for 180 we would probably be dead. With some ventilator setting changes and restarting sol-u-medrol his co2 corrected itself and wet to 63. (I think) Though, after a day or 2 he did NOT rebound on his oxygen like he did last time on the steroids. I think it was Monday when I was told he was growing bacteria in his lung secretions and he had pneumonia. He was started on antibiotics. He sat around 80% for a few days. Last night I was up their when he suddenly crashed again...wide awake this time. He got very fussy and upset was on 100% oxygen again and sats were around 85%. I cried and I prayed. I prayed so hard with tears all over his bed at this point I could just feel the holy spirit in the room with me to comfort me. Logan was asleep now. I said a prayer that I could not repeat if I wanted to. I laid hands over him and truly really prayed hard for him. Harder than I have ever prayed in my life for anything. I looked up at the monitor and he started high sating. Then more tears came just to rejoice the reassurance God gave.

When I called this morning I was told the cultures (not sure if it was from the 1st one taken or a new one) grew a 3rd bacteria in his lungs that requires isolation. This one is a little more resistant to anti-biotics. All of these bacterias are nosocomial and related to him being on a ventilator. The 2 he was diagnosed with 1st were Serratia marcescens qnd Staphylococcus aureus commonly know as Serrtia and Staph. The new one found today is Stenotrophomonas maltophilia aka Steno. He has been weened back down to 82% and is holding okay now. He is very alert and LOVES his mobile and his music. He has a small raddle he likes to touch. He reaches for his toys. Focuses on you and his mobile and turns to the sound of voices. He is the sweetest baby.

Jacob and Andrew are double trouble at home. They take turns hitting each other and crying. They are eating well. They are taking turns vomiting. Not just spitting up but lets see how far I can spew my milk across the room vomit. They have pooped more in the last 2 weeks than they have in the last 4 months. Luckily I have lots of diapers thanks to many donations. Thank you very much. I want to thank Jennifer Brant for all her efforts she does not just more me but everyone she meets to do good. She has started a raffle for a Wii that ends on December 6th. She has been selling tickets for awhile now. I know she has not near reached her goal, but what she has done to donate to the "Gas fund" as I call it and to everyone else that has bought tickets. I just want to let everyone know I am grateful and I will not spend any money donated to me irresponsibly and it will go for what it was meant for. I pay $75 to fill my van every 3 days and $55 for the car every 3 days as well. Sometimes more some times less. it adds up the cost has made things hard and required the use of my EVIL credit cards several times, but my family will get through this. I will not let money stand in my way to see my son or provide for my family. My daughter does deserve some time with just her mom and dad. We took her out by herself without the babies to down town Disney the other day because it was free. We planned on window shopping and riding the boats around the the different resorts we though she would have enjoyed it. Due to bad weather they closed the boats so we went into rain forest cafe to show her the fish and animals. Then she started I want "sumten" to eat mommy and even signed it in sign language. So we sat down with her got the cheapest items on the menu and split them and shared a drink. I guess some people who "donated" to me may have found this irresponsible for eating at an expensive restaurant, but we did not spend a ton of money. I am not living off donations. My husband and I both receive paychecks and I have EVIL credit cards. I just want to make it clear that any money that has been donated to me is being used for its purpose. Not being my main funds for gas either. It is sitting in a 2nd savings account and will only be used when their is no money left in my checking to buy gas or things the babies need.

Thank You everyone for all the support you have given my family. Please keep the prayers coming for baby Logan.

Tuesday, November 10, 2009

Trach success!

Logan post op after trach 11-10-09
Little Logan fresh out of the OR

Logan headed to OR he is trying to figure out what was going on.

Logan record low oxygen level on the NO lol

Poor Logan 11-8-09 after coming off the paralytic

Little Logan has had a very rough week. He is still responding to steroids and day before his surgery 11-9-09 his oxygen needs were as low as 39%! He was very puffy and swollen up until last night, was not tolerating feeds and his urine output was low. His blood pressure continues to be very high. His methadone was restarted then stopped again today. He is still on a versed drip, he takes blood pressure meds, and is on fentenyl for pain. He still is not getting fed so he has an IV. He went to surgery at 9am this morning with 42% oxygen and the nitrous running. Jack and I grabbed some breakfast and waited in the waiting area for about 20 minutes after breakfast and it was over that quick. He was wheeled back into his room at 10am. The ENT doc said he did great had absolutely no problems maintaining his sats at all. His airway is in wonderful shape. No damage at all. Amazing for all the times he has been intubated. The trach was placed not due to a damaged airway, but because of the poor quality that his lungs are and because he requires alot ventilator support. They did a chest xray after he came back to the room just to check trach placement. His lungs looked the best I have ever seen them. His lungs were clear enough that you could see the outline of his heart. Right now his Evelyn is taking care of him. He will be sedated for 3 days to give the ostomy time to heal. It is well secured around his neck and sutured into place. He is on 55% oxygen and maintaining high 90's sats. Andrew and Jacob are doing great. I missed their earlysteps appointment today. Jacob is extremely fussy HE IS DRIVING ME NUTS! Ava is acting out a lot she has been pretty bad. In the last 3 days she has dumped 2 entire cans of baby formula and some rice cereal. Jen, Dahlton, and Matt have been here since Sunday night. Things are very slowly getting into a normal swing. Thank You everyone who continues to pray for my family.

Sunday, November 8, 2009

Not given up hope on the little guy.

I've had a very dark depressed couple days since my last post. Even let my fears get the best of me and played what Logan's funeral would be like over and over in my head. Within a few hours after my last post. Logan was at 100% oxygen and desating and riding in the 80's and has stayed that way until about 4 hours ago. The plan on Friday was to put him on a medication to paralyze him and a medication to sedate him so he could rest and let the vent do all the work. He is definitely not out off the woods yet. Right now he has a peep of 10 and a rate of 48. His Co2 is much better in the 50's He has had 3 does of Sol-u-medrol and his Pavalaun and Methadone have been stopped. The Pavalaun which I am sure I am spelling wrong is the paralytic. His body did not tolerate this well he became very swollen and he was shutting down. His kidneys were not working well, and he was not digesting food. He is recovering from being on this med now and sating in the 90's for my favorite nurse ever Evelyn. He loves her. All day long he was in the low 80's for Tracey but as soon as his Evelyn came in he started high sating for her. He is still on the Nitrous they tried to wean this today and he did not tolerate this either he actually had to go up from 10 to 20. So he is on nitrous at 20 and the actual vent setting for his oxygen is at 95% which mixed with the nitrous is 84% With lots and lots of prayers hopefully we can continue to see improvement get the nitrous weaned and get the oxygen under 60% so he can get his trach. I hope the steroids do the trick! Also tossing the idea of seeing if I can have him transferred to pedi ICU at Arnold Palmer. Some of the staff tells me they have different equipment and ways of doing things for babies past full term. Then I would have to learn nurses all over again. :-( I would esp miss Evelyn. I'm trying to stay strong for Logan. He is still fighting so I need to continue to fight with him. He is the strongest bravest person I know.

Wednesday, November 4, 2009

Logan 11-3-09
Logan 11-3-09

Jacob 11-4-09

Andrew 11-4-09

Logan was doing a little better last night the No2 had allowed him to be weaned to 71% on oxygen. His Co2 last night was 64. This morning when I called they had went up on his oxygen to 73% and his Co2 was 72. I got a phone call this morning from the doctor saying that she consulted the pediatric ICU docs to see if they had anymore in site on what to do for him since he at 43 weeks gestation now. The plan for now is to keep him on the No2 (nitrous oxide) until Friday they also have placed him back on Lasix and he is getting a blood transfusion today. I got a phone call about 30 minutes ago from Dr. Brown again saying that he had to be resuscitated. I guess his ET tube pulled out enough to gage him and caused him to vagual and his heart rate dropped below 40. This caused him to be bagged to receive oxygen and have chest compressions. The entire ordeal was about 2 minutes his heart rate came back after about a minutes but it took 2 minutes or so for his O2 levels to come back up. He got a new ET tube and is stable again. He is at 78% on his O2 now. The goal is to try and get his oxygen closer to 50% by next week so he can have the trach placed. The trach is going to be the best thing for him it will help his Co2 levels and make him more comfortable. Andrew and Jacob continue to improve and grow every day. Jacob has awesome head control and focuses more than Andrew. Over all the are doing great.

Tuesday, November 3, 2009

Trying to stay focused

As most of you know Logan was not able to have his trach done yesterday. God made it very apparent that it was not the right decision at the moment. 1st the RT noticed over the last couple days they have not had the oxygen settings right on the monitor and they think the nurses were "tweaking" the vent and settings to make is show on paper that he was ready to go. They were allowing him to range from 83-98% on his oxygen and he was sating in the low to mid 80's most of the time. SO BASICALLY THEY WERE DEPRIVING HIM OF THE OXYGEN HE REQUIRES FOR HIS GESTATIONAL AGE. The range should have been between 90-98% initially he had to be turned up to 85% to maintain a sat of 90% Over an hour or so he required 100% oxygen and still continues to consistently drop below 90%. Needless to say he could not go to surgery. He has to be below 60% and stable before he can have the trach placed. The ENT doctor told me that if he would have went to surgery yesterday it would have been "His last day on earth." So Dr. Brown once again never calls me after I left and never did anything to address his high oxygen need. Dr. Von who was on call last night went to see him and noticed how lethargic and grey he was. She order a battery of test like they did over 3 weeks ago when he was reintubated in the 1st place. So far they are all negative. No infection No explanation except that he just has severe chronic lung disease. They did do an ABG last night to check his blood gasses and discovered his Co2 was 99% they were baking my baby's brain! So they changed a bunch of vent settings around to try and blow off the Co2 build up and ultimately got him down to 72% (normal is 30-40) He is currently at 89% O2 and they have run out of options he does not respond to steroids or diuretics. They are currently on the last resort they are adding nitrus oxide to his oxygen to try and help with the gas exchange in his lungs. Dr. Brown said she does not know what to do next that she has consulted everyone and asked advice of other doctors and if this does not work she does not know what to do. Please pray for Logan and the doctors that God can give them guidance about what to do for his pulmonary status.

Sunday, November 1, 2009

Better things are yet to come.....

PRAISE GOD! My merciful savior is awesome and always provides! Thank you God for all the guidance and blessing you have given my family. We bought our van on Friday and it just fell into our hands like it was waiting just for us to find it. It is reliable and extremely clean. It is a 2003 Ford Windstar. It is perfect and very affordable. The payment are only $137 a month the babies SSI is $138 a month. Just a wonderful example of how God always provides.

Logan goes to surgery tomorrow. I have had a lot of emotions regarding if we are doing the right thing or not. I have prayed and thought a lot about what to do. I decided that 3 1/2 months of on and off intubeation is enough and the trach is a logical step FORWARD not back. I believe this is the best thing for him, for his development, his healing, and for his comfort. He will be able to seamlessly go from ventilator to breathing on his own, he will no longer have tubes down his throat, no longer have straps around his head, prongs up his nose, or excessive tape on his face. He will be able to eat from a bottle, and his oxygen can be weaned faster.

Logan will come out of this a stronger person. One day when he stands before others he will have a wonderful testimony to tell for himself of God's grace and mercy and his ability to heal. Our entire family is a testimony in its self of God's almighty power and mercy. There have been so many blessings to my family I can't even begin to thank everyone who has been touched enough to help our family through a tough time.

God has provided! God has uplifted us! God has healed and continues to heal my boys!

Over the years I have questioned "When is it my turn? Why do I always do for other and no one ever does for me? How can other people have large amounts of money handed to them while I struggle? There is not special deeds, no amount of money to give, and no magic words to be said. It is simple Do unto others as you would wants others to do unto you. These are my words to live by. God rewards every person differently on earth though are ultimate reward awaits in heaven. I once asked God why me? What the heck am I doing with 3 babies! I realized very early in my pregnancy something I never did before. I should never question God's plan just go with the flow and practice PATIENCE. People tell me all the time, "I don't know how you do it. I would be a mess if I was you. How do you handle all the bad things going on?" It is simple faith, prayer, and patience. Though I do falter and give into the enemy more often than I should. I remind myself that everything I truly believe happens for a reason even if I don't understand it. I have had moments of rage I ask why my children God?! How come other mother's have multiples and come out "normal" why do my children have to struggle and fight? I am excited for my boys I will not grieve upon their difficulties anymore or compare them developmentally to other babies. God has a great purpose for them and I can't wait to see what it is!