Chloe started drinking a 5th again. Stress has taken its toll.
Greg sent this to me this evening when I was at the hospital with the caption. It made me laugh.
Well, little Maverick seems like he is improving. His white count was down a little today and his CRP was about the same. He remains on a little dopamine, his edema has improved, and he was acting like he felt better. As you can see, he was quite awake today. I gave him a bath and changed his clothes. The RT and nurse moved the ventilator to the same side of the bed as his pumps so I will be able to hold him. I didn't today, because I wore him out after the bath and he was fast asleep. This little guy is just amazing - he just fights as hard as he can everyday. I hope things will start to get easier for him.
They began heparin today. It's a "blood thinner" and it's used to treat the protein-losing enteropathy. They are giving it sub-cutaneous (just under the skin), but since he's so edematous it seems like he just leaks it right back out. I'm going to try to find some info on the internet about giving it IV. If any of our Dallas doctors are reading this and have treated this condition with IV heparin, please let me know and give me the dosing you've used. The doctors here and the one they consulted with in Houston have never seen it in a baby. Does that surprise you? It doesn't surprise me at all - little Mav has to be unique in every way. I hope he responds well to the heparin therapy. Keep saying prayers.
I hope you all have a Happy New Year. I received this email from a friend and it made me cry. I thought you all might enjoy it. It seems appropriate for the new year.
Recently I overheard a mother & daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged & the mother said,'I love you, & I wish you enough.' The daughter replied, ' Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom.' They kissed & the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted & needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?' 'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'. 'I am old, & she lives so far away. I have challenges ahead & the reality is - the next trip back will be for my funeral,' she said. 'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?' She began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone.' She paused a moment and looked up as if trying to remember it in detail, & she smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, she shared the following as if she were reciting it from memory.
I wish you enough sun to keep your attitude bright no matter how gray the day may appear. I wish you enough rain to appreciate the sun even more. I wish you enough happiness to keep your spirit alive & everlasting. I wish you enough pain so that even the smallest of joys in life may appear bigger. I wish you enough gain to satisfy your wanting. I wish you enough loss to appreciate all that you possess. I wish you enough hellos to get you through the final good-bye.
She then began to cry & walked away. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.
To all my friends & loved ones, I WISH YOU ENOUGH...
Here's little Maverick this evening sleeping with his monkey. I was getting ready to leave tonight and I rubbed his head and played his music and he went right to sleep. His CRP is down to 8 today - much better. He's back on feedings - 1/2 strength portagen at 10mls/hr. They're trying 1/2 strength since the full strength gave him diarrhea. His dialysis is still going well. He's still just peeing a little with every or every other diaper change. They weaned his tidal volume on his vent today to 25 (from 30). He looks good, and he stayed awake a lot today. The docs have decided to try him on epogen (it's a medicine that helps with red blood cell production). I guess that will start tomorrow. No other big changes. He's having therapy twice a day, every day. That should help loosen him up a little. His little arms and legs are so tight.
Greg is feeling better. He went to see Mav this morning and then I went this evening. I think that's the plan for this next week. Love you all - jc
Maverick had a good day today. His CRP was down in the 40's and his white count was down to 13 as well. This means he's responding well to the antibiotics. They isolated stenotrophomonas in his blood and he is on the antibiotics he needs (they have him on bactrim and miropenum). His heart echo today showed no growth on his tricuspid valve (yea!). Hopefully he'll just need one to two weeks of antibiotics to get this taken care of. He met his great-grandparents and aunt Cindy today and his great-grandmother yesterday. I don't remember who, but someone commented on how small he is and said he looks bigger on the blog. So, I took this pic with my hand just for reference. He's still pretty small. Weaning from the vent is off until this infection is a little better. More tomorrow - jc
Here's my wild boy today. The past two evenings he's been awake for 3-4 hours in a row. He's happy just to look around, watch his mobile and listen to whatever we have to say. We've had lots of visitors - thanks to everyone. I enjoy seeing you all.
So, here's the scoop on how he's doing. Yesterday evening he started breathing a little too fast for him. His temp was 37.4. He's been getting a little warm since a few days before we left Dallas, but I had been attributing it to the fact that he's now wearing clothes and he was just getting too hot - especially if I put a hat on him. He's mostly just had his diaper on since he's been born. Hmmm... The nurse tells me his white count was up - up to 20. I ask what his CRP was but they hadn't done one. I told the nurse I was worried he might be getting an infection, so the resident came in and we talked. I told her Maverick has been extremely sick before, but has never had a fever. So, they cultured him and he's growing gram negative rods - already. They started miropenum and vanc, then added gent this evening. They drew another culture from his arterial line after the first dose of antibiotics to see if it still came back positive - if it did they would pull the arterial line out. They pulled the art line out this evening. It grew that quickly. They drew a CRP yesterday evening when they got the cultures - 116. Yes, 116. I had to clarify - not 16? No. Today it was 170-something, but his white count came down to 15. He's not really acting sick other than occasionally being a little warmer than normal, (he's usually around 36.5) like 37.0-37.4, and being tachypneic. I've just been keeping a close eye on him... So, my fear? The questionable endocarditis a few weeks ago was actually endocarditis and wasn't treated for long enough due to no positive cultures. He's getting an echo tomorrow to check for any vegetation. We'll see what happens. He's a strong little guy and doesn't even seem to notice he's sick. They upped his vent rate to 20, but have turned it down to 18. His gases remained great, they just wanted to reduce his work of breathing. Say some prayers that he'll respond quickly and this won't set him back too much. He's had several good days lately.
On to Christmas, the kids enjoyed the day. Greg has had a virus and was laid up in bed. The kids and I went to the hospital to see Mav and then went to my grandparents house for lunch. Then Maddie and I went back up to the hospital and just got back home. I'm tired. I was thinking about the story of Christmas from a mother's point of view. I've had such a difficult time dealing with the "what ifs" with Maverick these past few months. I can't imagine having a son, knowing that someday he would be crucified for others sins - and having to watch it take place. Just something to think about.
Thank you all so much for your continued support, prayers, and generosity. Love you all - jc
This was Maverick this morning. He was resting well. He's had a great day. Still weaning on his vent and his gases have been great. His current vent setting are 35%, R12 (yes, 12!), PS15/5, TV30. His pH has been around 7.4 and his CO2 has been in the 30's. People have asked me why I think he's doing so well - I say he likes Oklahoma.... But seriously, the only thing I can think of is that he's probably had that pleural effusion cooking for awhile and that's why he wasn't able to wean very well from the vent while we were in Dallas. With it now resolved, he's weaning like a champ. So far no re-accumulation of the fluid. The best Christmas present would be for him to be extubated! Keep saying your prayers - we're having lots of them answered lately!
He had a neurology consult today for his continued weakness, and they say he has ICU myopathy. There are several risk factors for it (paralytics, sepsis, steroid administration, and prolonged ICU stays) and he's had all the above. The good news is he can recover from it and the doctor said it doesn't usually affect the muscles used for breathing (which means he should be able to wean off the vent fine). The not so good news is it usually takes about 4-6 months to recover. The doc also said he's never seen it in a patient this young. Leave it to Maverick. He is getting a bit stronger though and is moving his head alot more on his own.
I was able to see many more friends today - thank you all! Maverick was able to see his poppa jellybean (my dad), Maddie, Carter, Chloe, his aunt Jan and uncle Bob today as well. It's been so nice to have him close to home. I'll update you all tomorrow - love you all - jc
We made it! We left Dallas a little later than I anticipated, but nevertheless, we are all in Oklahoma tonight. Mav did great on the flight. I'm sure it was due to the excellent care from Mike and Kim, and from the superior flying skills of our expert pilot, Max. Thank you all so much for coming to get Mav. When we arrived in the PICU his eyes got wide and he looked at the people around him like, "Who are you and where am I?" He is transitioning quite well. I was a little concerned about my sensitive boy and the big change, but he's handling it like a champ. He was even able to wean on his vent after arriving (TV to 30 from 42). Everyone in the PICU here has been great and it's been nice to see so many friends and familiar faces. We were met on the helipad and escorted to the PICU with an entourage of our Mediflight people. Mav has a little fan club going here. Once he was settled, I was cleaning his mouth and I'm almost positive he smiled. I tried to get him to do it again, but couldn't. I'm going to keep trying. Maybe I'll get it on camera next time so I'll have proof.
I'm sure the next few days will be busy. Maddie, Carter and Chloe haven't seen their little brother since Thanksgiving, and there are grandparents, great-grandparents, aunts and uncles that still haven't seen our little guy. We got a great Christmas present this year - Mav is doing well and we are all closer together. God is good. Thanks to you all for your thoughts and prayers - jc
This was my view this morning - so sweet. I got to hold Mav again! A special thanks to Lutchmee - she has been Mav's nurse the past several days and she's been very pro-active about getting him in different positions and making it possible for me to hold him.
We have the transport arranged for tomorrow. Mediflight (my friends) will be coming to get him. We should be back in Oklahoma around 12 or 1 tomorrow afternoon. It will take a while to get him settled in, then Greg will meet me at the hospital. I'm excited, but nervous at the same time. He's been doing great, so I think he'll do fine on transport. We've just been here so long and everyone knows him and his little quirks. They know how to deal with him when he gets sick, etc., etc. It will be so nice to have our family together again, though. So, to all Mav's doctors, nurses, therapists and support staff, THANK YOU FOR EVERYTHING. We appreciate each one of you so much. You'll always have a special place in our hearts.
Also, a special thanks goes out to our church. They had a benefit dinner for us tonight. I know it took a lot of people and a lot of time - I know that's precious around the holidays. Thank you all - each one of you have been amazing and we appreciate your support throughout all this. I'm ready for things to be close to normal and for us to be able to be a part of our church again. It's been difficult with all the going back and forth and instability. To be honest, sometimes it's just hard to see people you know - people that care about you and your family. It's just a set-up for lots of tears. Hopefully, the worst is behind us and it will be an easy road from here on.
I'll let you know how tomorrow goes. Love you all - jc
Here's our sweet boy today. He's had a pretty good day and they're weaning his vent a little. Greg came back today and I'm going to TX tomorrow. If all goes well, we would like to transfer him to OKC the first part of the week. If it looks like he won't be going to Oklahoma, Greg and the kids will go to Texas on Sunday or Monday. We didn't even decide on this plan until late this afternoon. We truly have to just take things as they come. We're having some difficulties with the insurance approving this transport, but we can still have him transported before their approval and take things up with them later. It just seems like he'll do well for awhile and then something happens and he has a set-back. We would like to catch one of the good windows and take advantage of it. Hopefully he'll stick with the plan this weekend.
I've received many beautiful Christmas cards this past week. I have always loved sending Christmas cards and letters, but I'm taking a break this year. It just doesn't seem right to send one without having Mav home. So, don't take me off your lists - I'll be back at it next year. jc
Little Mav slept alot today, but Greg said when he was awake he was very alert and looked like he was trying to smile. Wouldn't that be a great Christmas present? He's had a pretty good day. They've been able to wean his vent a little bit and his gases have remained good. He's back to two hour dwells on the dialysis. He's still putting out a little bit of urine with several diaper changes per day. It would be nice if we opened up his diaper one day and it was just soaked. I would jump for joy.
It was a dreary evening. My sister-in-law, Jan, picked up the kids and I made a cup of hot chocolate, put on some warm fuzzy socks, popped in a Christmas CD, and wrapped Christmas presents. I thought about all the things I have to be thankful for and just praised God that Mav is doing better. Maybe if all goes well tonight and tomorrow we'll be able to get him up here before Christmas.
The kids and I are still unsure about our plans for the weekend. We'll have to see how Mav behaves tomorrow. jc
I got to hold Mav today - sitting in a real chair - not just on top of his bed! He's doing well. His vent rate is down to 18. I think they're just going to have to wean him very slowly. He has been putting a lot out of his dialysis catheter and the docs seem to think maybe he's beginning to mobilize some fluid that is trapped in his arms and legs. I really hope so. I can't wait to see him start moving around more. No other changes today. They're going to start feedings tomorrow and give his bottom one more day to heal. It looks much better. Love you all - jcholding mav
Here's our handsome boy in his Santa hat. He had a bad blood gas this morning after they tried to wean to a rate of 10 (for my non-medical people he didn't like them trying to wean him from the ventilator). His dialysis was also changed to 3 hour dwells at the same time and he was sitting up in a bouncy seat. Maybe all that change was just more than he could handle. I'm just praying he's not trying to get sick again.
There was a Christmas party at the hospital today put on by the "Heart n Hands" group. It's a support group for the families of pediatric heart patients. I had contacted them earlier on in the month and told them I wanted to meet someone who had been here for a very long time and had lots of complications and still had a good outcome. I met a little boy and his grandma that were here for six months before he got to go home. He had many complications and had to go home on a ventilator with a trach. Just seeing him walking around without any tubes helped me tremendously (no more trach either). There was another mom I met that said, "Just think, next year you'll be here visiting with him and you'll wonder how you got through it" - I really hadn't thought about it that way until she said it. Mav is such a strong little boy. I know we'll go home and be here to visit at next year's Christmas party. I just hope we're closer to the end of this journey than the beginning.
I was watching a tv show this evening in Mav's room with a little boy who had some severe medical problems and is now better. His mom said, "We walked through a valley, but the ending was glorious - he's just a miracle." Someday that's what I'll say, too. Thanks for everything. Love you all - jc
PS - Thanks to those known and unknown people who have blessed us this holiday season and throughout this time. Your generosity is overwhelming. May God bless you ten-fold.
Mav is three months old today. The nurses had a little party for him and brought in a cake. He was pretty awake for quite awhile today. As you can see, he now has a shirt on. I put one on him yesterday and just started bawling. Poor Jenny and Sheila (the nurse and RT) had to put up with a crying momma yesterday. All I could think of was the fact that he was almost three months old and that was the first time I'd been able to dress him. I just wonder how much longer this will be.
He's down on his vent to a rate of 12 (40%, R12, PS 12, TV 25, Peep 5). Hopefully he'll be able to maintain that overnight. He's still off the formula. They're going to let his little bottom heal some more and then try a different formula in a few days.
Greg and I made a pretty big decision yesterday. We're going to have him transferred to Children's in Oklahoma City next week. It was a tough decision to make, but we all need to be together. Right now he's just mainly weaning from the vent and they're having to tinker with his dialysis and medications. Since his heart is ok now, we feel like it's a good time to have him transferred. The weaning process and getting him to the point where he can be discharged may be several weeks away or several months. One thing we have learned through all this is that Maverick sets his own schedule. We won't be home by Christmas (which makes me so sad), but at least we'll all be back in Oklahoma together.
We'll really miss the all the great people here. We have received the best possible care and it's a little hard to leave, but it's the right decision for us now.
Thanks for all your continued thoughts and prayers. We appreciate each one of you. Love you all - jc
Here's a pic of the kids today at breakfast with Santa. They had a good time. Chloe kept trying to sneak back up to Santa while other kids were getting their pictures taken. It was nice to see my friends and everyone back in Shawnee, but it seems so odd to be doing something fun while Mav is in the hospital. I'm trying to be "normal" for the kids, but I'm back in that mode where I can't concentrate on anything. I just keep thinking about him. Maddie was insistent on putting up some decorations outside today, so she did. She did a very good job. She lined the walkway and two trees with lights and put our inflatable Santa up in the yard.
Mav had some big moves today. He was moved to a crib from the warmer. Greg says it looks much more comfortable. Mav also got to sit up in a bouncy seat for awhile today. Greg said he loved the toys on it. He took the toy bar off one time and Mav started to cry (you can't hear him cry because of the ventilator, but you can see him do it) so he put it back on and he stopped and just looked at it. They tried to change his dialysis to two hour dwell times, but he didn't like that too well and they had to go up on the vent a little. Just day by day. More tomorrow - jc
Another pic of Mav. It's his first time to somewhat sit up. He has a boppy under him. He did very well with it. He's had a pretty good day today. They've increased his feedings again and he's almost up to full feedings. They're still continuous through the yellow tube that goes to his intestines. Hopefully his IV nutrition will be turned off tomorrow. He's weaned a bit on his ventilator and they're planning on weaning some more tomorrow. His CRP was up a little today (from 0.2 to 1) - when it goes up it can indicate infection. It's still not high enough to be worrisome, but it bothers me that it's up at all. He hasn't had any urine in 48 hours :( There is still hope that his kidneys could kick in... just keep praying. The dialysis is going well, though, and his BUN is down to 49, creatinine is at 1.4.
Greg and the kids are doing well. I'm planning on going back to Shawnee on Thursday and Greg will come down here on Friday morning. More tomorrow - jc
Here's Mav today. He's been pretty bright-eyed and acts like he's feeling better. They've increased his feedings through the tube to 7mls/hour (that's about 1 1/2 tsp per hour), and have decreased his ventilator rate and pressure a little. He hasn't had any urine out today, but is tolerating two hour dialysis well. They're not trying to get any extra fluid off, just trying to keep him about even. He's getting physical therapy every day now - just working on stretching his little arms and legs - they're still really stiff from all the swelling and from the time he was paralyzed. He's been watching his mobile some today and resting well. The nephrologist said he thinks the cloudy peritoneal fluid (the fluid coming out when they do the dialysis) is due to lymphatic fluid. So far the cultures show no growth (that means no infection). So, that's encouraging. It is just concerning that his kidneys aren't really kicking in and the nephrologist mentioned if they don't, Mav would have to go home on dialysis - probably just at night. That's do-able, but to all our prayer warriors out there - pray that his kidneys will start working like they should. More tomorrow - love you all - jc