Monday, December 31, 2012
When Dr Bandisoe finally made her way back to us, she told me that Brinkley had not passed the car seat test and would have to return home in the car bed. That stinks! We really want to get him out of that thing. It does not seem very secure to either of us. As disappointing as that is, it will not keep us here and we'll take it. However, the chest x ray will keep us here. There was a little "schmuck", as Dr Bandisoe called it, on the left lung. We will have to stay tonight and have another x ray tomorrow. They are trying to make sure that the drainage has not started again.
So, Brinkley and I will ring in the New Year from his room at MUSC and pray that we will end the day celebrating in our home!
*Pray for Bryan and our dear friends who will be driving him back here tomorrow. It is a little scary to think about them be on the road with all the folks who have been "enjoying" their new year.
Sunday, December 30, 2012
This left us with an IV, the monitoring wires (heart rate and oxygen meter), and his G-tube (feeding tube). The monitoring wires will stay until we are ready to walk out the door and his feeding tube will remain. If you are keeping score, that means that the IV is the only thing left tying him to the hospital.
This afternoon, the IV was turned off! Other than feeding times, he is no longer bound to his bed or even his room! He has made incredible progress over the last few days. After everything was removed the nurse told me that they were ready to do his car seat test. (You may remember that Brinkley failed his test both times in NICU and we came home in a car bed. We are trying to go home from MUSC in a regular car seat.) Just like in NICU, this is a sign that home is on the horizon!
I have gotten mixed reviews from the team today as far as the exact date, but it is safe to safe that we should be discharged by Wednesday! I am hoping that I will get a more definitive answer after rounds are made in the morning.
Please pray specifically that he will pass the car seat test. Today they attempted it twice and he was so close to passing. They will try again over night or tomorrow, but he will have to pass it twice to go home in his regular seat. Pray that my little procrastinator will try again and get it this time! Here's to spending New Years in the upstate!
Saturday, December 29, 2012
Yesterday Brinkley was started on a medication called Octreotide. The goal was for it to start to dry up the drainage from the lymphnodes. We got mixed reviews on its effectiveness beforehand.
As of right now it is working wonderfully. Better than expected to be accurate! If this continues, his chest tube could be removed tomorrow. He would stay on the meds another day and then we would have a day or two of observations before being discharged.
If all goes as planned (we know Brinkley's opinion of our plans) we could possibly be discharged by mid week!
Thursday, December 27, 2012
Yesterday Dr K told us that he wants to give Brinkley a few more days before considering any other actions. There is a medication that we can try and if it is not effective there is a surgical procedure that we can consider. Dr K is not a fan of the surgery as it only has a 50-60% success rate. He doesn't want to put Brinkley through the stress of a surgery that may not actually help him.
We have learned that Dr K is very meticulous and does not rush anything. At times that seems like a blessing and a curse. We are ready to be home! Reese referred to our home as "our old house" this week. The poor little guy is so confused! It was great having him with us this week. He and I are home in "our old house" for the night. I am taking him to play therapy tomorrow and then heading back to Charleston. Bryan will be here for church on Sunday and will be staying to take Reese to another appointment next week.
The stress of our current lifestyle is wearing on all of us. Reese is having issues with his skin, allergies, and behavior. We are going to try to focus on him over the next few days to see if we can get all of these issues addressed.
Reese is not a fan of the drive from Charleston to the upstate. I tried to help him out and we took our midway bathroom break at Toys R Us in Columbia. He saw the Chuck E Cheese close by and asked if we could go there. I agreed that we could go to the CEC at home if he would be good for Mommy. He was really good at TRU and then when we got home, so I held up my end of the deal.
Chuck E Cheese was a success except for one little issue. Somehow on the way there Reese got a mini Hershey bar and it is now all over his car seat and the upholstery of the rental car. The upholstery is cream and did I mention in a RENTAL CAR! Any suggestions of how to remove that by 5pm tomorrow (Friday) would be greatly appreciated!
Tuesday, December 25, 2012
Well, those cards are still paid for and I am still going to make them. People will have to understand and over look the fact that they don't arrive until well after New Years. What the heck, we may start a new tradition and send out Valentine Cards instead of Christmas ones. (At the rate we're going it'll be Valentine's before we get home.)
My neighbors are going to think we are crazy, but we are putting up our tree when we get home. I am determined that my boys will have Christmas in our house in some shape, form, or fashion. We've been in the hospital since December 3rd, so I did not have the chance to even attempt to pull out our Christmas decorations. Thanks to our niece and some very special friends, both of our boys had Christmas trees, one at the hospital and one at the apartment.
I must be honest and say that this has been much harder than I thought it would be. Not having my boys in the same place has been tough. It was hard to leave Brinkley at the hospital alone last night. It wasn't what I planned for my baby's first Christmas, but his sweet nurses helped Santa find his bed. (They even put his Santa suit on him before we got here!) He woke up to his gifts from Santa and later Reese helped him open his presents from us.
Yesterday I went in the grocery store to get a few things and as I was leaving I saw a middle aged lady and a gentleman (maybe 30ish) with Downs walking through the parking lot. Earlier in the day I had noticed a teenage boy with Downs a few rooms up from Brinkley. After seeing these two men, I couldn't help but think of my Brinkley as he grows up.
Our lives will never be the same. Every child changes your life and family, but it seems that a special needs child takes that to a whole new level. Those gentlemen were reminders to me of the joy and heartache that our future most likely holds. In my mind they represented the fact that we are going to have ups and downs. Like the young man here in the hospital, we will probably have our share of days with doctors, hospitals, and therapists. Like the gentleman at the grocery store, we will likely have many more times where life seems normal and we are doing normal family things. The toughest part was accepting that this is our new normal.
Though that is a tough reality for me to accept, I also have to say how blessed I am. Our sweet baby has turned on the charm since we have been here and he has started smiling a lot! He has even attempted to giggle a few times. People have been so good to us here. The sweet ladies from Cross Bridge have been checking on us and visiting with us at the hospital. They even brought us a traditional Christmas dinner last night. It made us feel a little more at home as we sat down to enjoy it at lunch time today. As I was sitting here writing this, a gentleman came in to tell me that a group had brought dinner to the waiting room down the hall. I just went in there to find more traditional Christmas food including sweet potatoes like my aunt makes me. I felt so stupid, but I broke down in tears as the lady put it on my plate. I thanked her and she said she understood, she was here with her child two years ago on Christmas.
I think the Lord just used those sweet potatoes to confirm something in my heart. The last few days I have been feeling like there is something that the Lord would have us do for others facing this same situation. Our family often talks about doing something for Christmas rather than putting so much focus on our gifts. A simple as it is, those sweet potatoes may have just clearly shown me what we are going to do next year. Who better to serve these families than someone who has walked this road also. I'm pretty certain that you will find the Holder's serving Christmas dinner at our Children's Hospital next year.
Saturday, December 22, 2012
Like Autism, children with Downs can fall anywhere on a spectrum of severity. Nearly all children with Downs have some level of cognitive disability, but it varies from child to child. Many children with Downs are mainstreamed in school and only need extra help in one or two areas of study. Children with Downs can (and do) accomplish the same things as children without Downs, they just do it at their own (often slower) pace.
Since getting Brinkley's diagnosis we have become so much more aware of how many people around us are living with Downs. It is amazing how much has been learned about Downs in just the last twelve years. Children are living longer and healthier lives. In my parents generation it was common for these children to be institutionalized because of how little we understood about helping and teaching them. Today, with therapy, our children do the same things as their peers.
I would encourage you to check out the photo gallery linked below to see the many faces of Downs. You will see that they do share some common things, but they are all very different, and all VERY beautiful!
Friday, December 21, 2012
This morning I made a new friend. Ashley stopped by to introduce her self and share her story with me. She is also from the upstate and we have mutual friends. She was here for her son to have a procedure today and took some time out to encourage me and just be a friend. What a blessing that is! No one can truly understand this road unless you have walked it yourself.
We closed out the day with some special visitors. Bryan's sisters and our nieces arrived to pick him up and bring him home for the weekend. It was nice to see them for the few moments that they got to visit with us. Soon after some of our dearest friends stopped by to say hello as they arrived in town to have Christmas with their daughter who lives here.
Bryan went home to be at the church's Christmas service and to bring Reese back for Christmas. Yes, we are planning for a nice Charleston Christmas. It will be fun to be low key with our boys, but it does not feel like Christmas. Today was the first day that it was even remotely cool. I just can't get in the mindset that it is Christmas when people (including Bryan) are out in shorts and t shirts. This weather is crazy! Today it was around 50, but that is the first time it has been less than 70 since we have been here. Maybe I should put up a palm tree instead of a fir tree. It would certainly seem more appropriate for the weather!
Thursday, December 20, 2012
Soon after this we started outside to get in the car. Reese and I were outside for a few minutes before Bryan came out. As I was putting him in his car seat he said, "Mommy, you don't cry. You are a grown up and grown ups don't cry." My heart sank a little bit. I want my son to know that women can be strong. I want him to learn to love and respect women. I want him to know that men can be strong and caring. I want him to strive to be a strong, caring, and respectable man. I want him surround himself with strong, caring, and respectable people. Where I missed the mark though is teaching him that being strong also means being real.
Strong people love and with love comes hurt. No one can handle everything on their own. It takes a strong person to be able to cry and deal with the hurt and frustration that comes with this life. We weren't intended to live this life alone. God made it clear that he created Eve to give Adam a helper (Genesis 2). He needed someone to share this life with. The ups and the downs of life, the good and the bad. God also made it clear that no one is expected to handle everything thrown at them with no emotion. Even Jesus, our ultimate example, had his moments. When he saw the state that his dear friend Lazarus was in he cried(John 11). He even asked his father to intervene in His time of struggle and take the struggle from Him (Matthew 26).
If my goal is to teach my boys to be like Jesus, then have I really taught them well? Jesus himself had moments where he showed strength in weakness, so to speak. With that in mind I need to be real with Reese. He needs to see that Mommy and Daddy sometimes need to let it out. We need to allow ourselves to feel and to hurt, openly. We need to be open about needing strength from our Father to get through the tough things in this life. We need to cry and we need to talk about why we are crying and how our Lord hears our cries and cares for us.
I am amazed sometimes at how clueless I really am with the whole parenting thing. I am even more amazed at how much I learn from my 4 year old. Personality profile or not, it is my job to teach children to be real and being real means that grown ups, even this Mommy, cry sometimes.
The morning of Friday, December 19, 2008 we met a social worker at the Department of Social Services and she took us to the far other side of the county to the foster home where our baby was living. As we pulled into the drive way the foster mom came out onto the porch holding a baby. My heart dropped when the case worker told us that the beautiful baby was ours! We went into the house, met the foster mom and her children, and held our son for the very first time. Monday, December 22nd our dream became a reality when that same social worker arrived at our house with that beautiful baby to officially bring him home!
A long three year process began to make him legally ours, but we knew the moment we saw him on December 19th that he was ours.
When we arrived at the hospital yesterday morning to see that Brinkley's ART line had been pulled we heard those beautiful words again. "Would you like to hold your baby?" I couldn't help but remember that sweet moment four years ago to the day when Reese was placed in my arms for the first time when I held Brinkley for the first time since his surgery (nearly two weeks ago). I must admit I was a little nervous with his chest tubes, but I was extra careful and gave him gentle cuddles that we had both missed so desperately.
Earlier in the year, a former student of ours and one of his friends had been arrested here in Charleston for attempting to climb the Ravenel Bridge (formerly the Cooper River Bridge). Facebook and Twitter were full of pleas and campaigns to Free Choco. We had jokingly started our own campaign to Free Brinkley. Free him from the PCICU. The nurses and doctors have been WONDERFUL in there, but we knew the sooner we moved out of ICU the sooner we go home.
Well, our efforts came to fruition yesterday afternoon. Around 3pm Brinkley was moved out of PCICU to 8D. (8D is the Pediatric Cardiac unit of the Children's Hospital.) We followed the team from PCICU to take him to his new room and then we promptly began decorating his room for Christmas. In our last visit with Dr Kavarana (the surgeon) yesterday he said that Brinkley's chest tubes would probably need to stay 4-5 more days. Yes, you did the math right. That means that our projected discharge date would be Christmas Eve or Christmas Day. Realistically, we don't know how much longer we will be here. Dr Graham, the Cardiologist, said it best yesterday when he said, "Brinkley has made it clear that he is in charge." It is amazing how much a little 8lb 7oz baby can dictate.
It may be kind of nice to have a low key, stress free Christmas here in Charleston. The Bryant's have graciously given us their guest apartment so that we can spread out and enjoy the time with our boys. As is true for most families, holidays are hectic and quite honestly frustrating for us. We have so many places to be and everyone wants their share of our time. We never get to enjoy each other and what the holidays are really about for trying to get from one family member's house to the next. We are looking forward to celebrating with our families next weekend when things can be more relaxed and everyone can enjoy it a little more. Especially Brinkley with his new happy, healthy heart!
Wednesday, December 19, 2012
Sunday afternoon we took Reese the Aquarium. We asked the Guest Services folks at the hospital if they could help us get discounted passes and they gladly made arrangements for us. To our surprise, when we arrived we found out that the passes were free. That was a huge blessing! Reese had a great time. Later in the evening we were in the car and he said, "Daddy, thank you for taking me to the 'quarium. It was awesome!" (His teacher sent me an email last night and said that he talked about it at school also.) It was nice to be able to spend some fun time with him in the midst of all the chaos.
Monday, however, was not so pleasant. We got up and packed Reese up. Bryan took him to meet Jordan and sent them on their way back to the upstate. The nurses prepared us and Brinkley for his RA line to be removed. This was one of the last ones standing in our way to being able to hold him. They got everything prepared and asked us to leave. We went across the street to a cafe for lunch. As soon as we sat down I realized I had missed three calls in a row (12:07, 12:08, and 12:09) from Jordan. I called her back to hear Reese answer and let me know that he is not a fan of the long ride between Charleston and the Upstate. "Mommy, I don't want to watch tv and I don't know what to do." Apparently the DVD player had lost his attention. I talked to him for a while and tried to console him only to be interrupted by a call from the hospital.
Brinkley's nurse was calling to let us know that they had to change the plan. Rather than remove the line, they had to replace the chest tube that had come out over the weekend and leave the line in place. His lungs had to be drained again before they could attempt to remove the line.
That night he started running a fever and his white blood cell count was highly elevated. Trying to cough up the junk in his lungs was extremely painful since his breast bone is still healing from the surgery. He was miserable and nothing we did seemed to console him.
All I wanted to do was snuggle him and let him know that it would be better soon. I managed to maneuver myself to get my arm under his neck as if I was holding him and get half way up on the bed to be close to him. I am sure this looked quite awkward, but you gotta do what you gotta do. When he got quiet for a moment we rushed out before he could get stirred up again.
Yesterday he was able to get the RA line removed and while they were working they restitched one of his chest tubes. So then we were waiting on the ART line to be removed from his groin so that we could hold him. The nurse told us that they planned to pull it that evening before the shift changed. Five pm rolled around and she went to get permission to pull it. The Fellow on call told her to hold off because they wanted to use this line for some lab work during the night shift.
We came back after dinner and the shift change and Dr McHugh, the Fellow, apologized for teasing us so much and explained the plan. She assured us that it would come out the next day and we should be ready to move when a bed came available upstairs. She also talked to us about his fever and how they were following that. She was so positive and told us how wonderfully he had progressed the last few days. Brinkley was full of smiles and we enjoyed loving on him before we went to settle in to our new location for the remainder of our stay.
Gladly, we got off that roller coaster on a high after seeing this:
There have been a lot of ups and downs over the last couple of days that I want to share. However, currently we are having trouble getting access to the internet. Hopefully I will be able to update from the hospital later today. Please stay tuned!
Sunday, December 16, 2012
He looked very cute in the Christmas PJ's that she picked out for him. She told me that one of the chest tubes came out over night. It was insinuated that he may have played a part in the removal of that tube. (He is perfecting his lasso skills.) She anticipates that the external pacemaker lines will be removed tomorrow when the surgeon returns from his vacation. Those lines as well as the line going into his groin have to be removed before we can handle him or move out of ICU. His lung x rays continue to improve and he has a productive cough that is helping to break up the junk in his lungs. He should move upstairs to a private room tomorrow or Tuesday.
It is an understatement to say that we were excited to hear that we are so close to moving on up!
Saturday, December 15, 2012
Most of our action today came from Reese. He was up crying most of the night with his ear hurting. We took him to urgent care this morning to confirm that he has an ear infection and get him started on an antibiotic. This is his 4th ear infection since the end of September. Yes, I fully expect to be talking to our pediatrician about tubes when we return to the upstate. September was the first one he has ever had and now we can't seem to shake them.
The urgent care doctor seemed to agree with me in thinking that his allergies may be the underlying issue. A few months ago we changed allergists because the former one didn't seem to want to cooperate with me. I will be the first to admit that I am not a trained medical professional, but I am his mother and I have good instincts. Brinkley's doctors keep telling me to trust my instincts, but Reese's allergist apparently thinks I have none and refused to do the things I was asking her to do. I called the new doctor earlier this week and had no problem getting an appointment to do exactly what I was asking.
I am hoping that we will be able to get some answers to his skin issues, the constant nasal issues, and the reoccurring ear infections. All these things aggravate him and at times he is miserable. It breaks my heart that I can't do anything that seems to help. I am hoping that we don't have to go back to the strict diet that he had been on before, but I have a feeling that may be the direction that we are headed in.
Hopefully the surprise we have in store for him tomorrow will make him feel better. The great folks at MUSC made arrangements for us to be able to take him to the Aquarium tomorrow. He is going to LOVE it!
Friday, December 14, 2012
I shouldn't be surprised about this "attitude" of his. His Daddy is certainly not a planner. Routine and structure make him a little crazy. Like Brinkley, he is quite serious about eating routinely, but that is where the routine ends.
Mr Brinkley has earned many "badges" in his short three months of life. He is a strong little fella. Today he added a new badge to his collection. The Procrastination Badge.
When I left the hospital last night the staff was satisfied with his pacing at 98. Ideally, they wanted him to be in the 130-140 range. However, he was able to maintain is blood pressure with that pace so we were going to go with it. This morning I arrived at the hospital around 8 am and his pace was 125 with great blood pressure and oxygen numbers. I told someone today that he hit a grand slam in the bottom on the 9th.
This was further confirmation that no pace maker was needed. The lungs are continuing to clear up and we were able to have the breathing tube removed today!
|Look at that sweet face!|
Though I get terribly frustrated with procrastinators, I'll take it! Improvement is better late than never.
*As if Brinkley's surprise wasn't enough to warm this Mommy's heart today, look what greeted me at lunch time:
Thursday, December 13, 2012
We were greeted with not only the news of lung issues and the need for another chest tube, but we were told that Brinkley would require a pace maker. Another surgery and more time under anesthesia and pain meds was the last thing we wanted to hear. We wanted to hear that the breathing tube was coming out and we were making progress toward moving out of ICU and being able to hold our baby.
There were many questions and reservations going through my mind. We were not able to speak directly with the surgeon or one of the cardiologists at that time. This is when I put the call in to Dr Raunikar. After talking with him we were more at ease with the decision and prepared to move forward. This morning I was able to speak with the surgeon and the plan was to proceed with surgery tomorrow around 2pm. At that time Dr Bradley, the surgeon, turned down the external pace maker to its lowest setting.
With the pending surgery in mind, we rented a car and Bryan headed home around noon to get Reese and bring him back to be with us. Not knowing how things would progress, we were unsure if we would have another chance to get him. The plan was for them to stay at home tonight, gather up some things we need, and head back this way in the morning. I stayed at the hospital most of the day and Jordan joined me later in the afternoon.
Around 5 pm we left and came back here (Cross Bridge house) for dinner. After the shift changed at 7pm I headed back to the hospital to meet the night nurse and get the latest report. Tara was our nurse again tonight and she was pleased to meet me at the bedside with great news! After watching Brinkley for the day, the surgeon feels like he is able to maintain his blood pressure with the heart pacing as it is now. This means that a pace maker is not necessary!
The Fellow on duty tonight talked with me about the decision and said that the next step is to work on removing the breathing tube tomorrow. We will continue to observe him after this and make sure that this does not affect the pacing. If there are no problems, they will dismiss the plan and we will continue with aggressive treatment for the lungs. (There was some improvement today and we started antibiotics to deal with some bacteria that was found.) The lungs can be treated more aggressively without the tube. This means we could potentially be holding our baby this weekend and even possibly moving out of ICU.
Brinkley made it clear today that he is ready to be held! I've told his nurses that he loves to be snuggled and that is what he needs more than anything. While I was away today he got upset and had to be lifted up to adjust his positioning The nurse said as soon as she lifted him up as if she was going to hold him he immediately stopped crying. Later, after I returned, he had to be lifted up again and the same thing happened. My baby needs love! I am more convinced everyday of the importance of love and nurture in his recovery.
With the two steps forward today we just may be inching closer to that snuggling he and Mommy both want. After this I may never put him down!
When we talk to Reese about adoption we tell him that sometimes Mommys and Daddys can't take care of children and keep them safe so another Mommy and Daddy adopt them to make sure they are safe and taken care of. I don't feel like I am doing a very good job of that right now. We are a nine days away from the 4th anniversary of the day Reese joined our family. December 22, 2008 we received the best Christmas gift we could have ever received. Reese is a very special blessing. It brings tears to my eyes just remembering his sweet little voice repeating that back to us, "Reese, what are you?" "A very special blessing".
Our family is doing a wonderful job of taking care of him while we are away, but I miss him desperately!
In August he started 4K and, bless his poor teacher's heart, his home life went crazy within a couple of weeks of that. As if starting school wasn't change enough, he was dealing with parents that were stressed out with a complicated pregnancy. He started school on Tuesday, August 28th and I was admitted to the hospital on Tuesday, September 4th. Needless to say, his world has been a little upside down.
We have been so proud of the progress he has made with his writing and learning to recognize his letters and numbers. He has done well academically. Behavior, on the other hand, has had its ups and downs. We have had quite a few notes sent home about times he has not been able to control himself. It has been so hard to tell if some of this is simply because of our less than normal home life or if he is showing us that there is another problem.
It has been a struggle to know how to handle the issues that we are having with him. The calls to us crying and begging for Mommy and Daddy don't make it easier. His prayers break my heart. "Please make Charleston not so far away." As much as our whole family loves Charleston, I have to agree with his prayer. The seven weeks in NICU were hard, but at least I got to make the 20 minute drive home every night/afternoon and put my arms around my buddy. The thoughts of being here another full week at the least makes this Mommy more than a little blue.
I'm praying for some meaningful time with Reese this weekend and for wisdom and peace about how to handle his behavior issues. I'm also praying for strength to make it through this time. I'm not supermom and I am reminded of that more and more everyday. What I have to remember is that I am not supposed to be supermom. I am supposed to be me and right now me is tired and feeling helpless. Just a reminder that it is not about me and I am not expected to do this on my own.
Wednesday, December 12, 2012
We arrived at the hospital this morning and met our nurse for the day. She told us that the left lung had continued to improve, but things had shifted and the right lung had a large amount of fluid around it. It was going to require an additional chest tube for drainage. Also, the pacing has not made any progress yet. This was hard to hear. I had a hard time holding it together.
Dr Raunikar called us this morning and spent 25 minutes on the phone with us. He was walking us through everything that has happened to this point and talking about future plans and treatment. He was very encouraging and helped us to feel a little more at ease with the slow progress. Thankfully, any and all follow up will be able to happen in his office. That is a blessing that we will not have to come back and forth to Charleston. Before leaving us he prayed with us. This is just one of the many reasons we are in love with him!
Soon after speaking to Dr Raunikar, the chest tube was placed and they were able to immediately drain a little over an ounce of fluid from around the right lung. That is a lot of fluid from my very small baby. The immediate x ray showed some improvement and another one will be done tonight or early tomorrow. Once these look good we can work toward removing the breathing tube.
Bryan and I both were exhausted after an emotionally draining morning. We told the nurse that we were going to go home to rest and she said, "I don't mean to be rude, but you look tired. I think that would be a good idea." We just ate a quick dinner and will be headed back to check on him in the next few minutes.
Please pray for us as this is beginning to be very draining. Pray for the pacing issues and pray that we will be able to enjoy some time with Reese this weekend.
Tuesday, December 11, 2012
Monday, December 10, 2012
God has a funny way of using unexpected things in my life. This morning I opened up my email and found that two of them were perfectly placed a midst all of the Christmas sale reminders. The first was from Jim Burns (a youth ministry guru) and it was about faith. I have heard these verses hundreds of times, I have even taught on them, but today I needed this reminder:
for they wouldn't believe his promise to care for them.
Instead, they grumbled in their tents
and refused to obey the LORD."
encouragement for today
Sunday, December 9, 2012
Saturday, December 8, 2012
Brinkley had a pretty uneventful night. Of course he was heavily monitored all night and had a few echo cardiograms to make sure that things were working properly. There were a few dips in numbers, but nothing unusual or worrisome.
This afternoon there was some concern with his lungs and the way that the fluid was draining. This was examined and dealt with and seems to be moving in the direction that the doctors want now. Down Syndrome causes low muscle tone which may be contributing to this issue as well as some of the other fluctuations that we are seeing in the numbers. He is still heavily sedated but is being weened off the machines and medicines/drips slowly. He was starting to stir around a little this evening and opened his eyes up a tiny bit to peek at Jordan and I. That was certainly a welcomed sight!
We have been told that it will probably be Monday before enough of the tubes are removed and he is stable enough for us to pick him up and hold him. I have been giving him plenty of kisses on his little cheeks.
Reese is headed back home tomorrow. We enjoyed a fun time at the beach with him today. And yes, the wild man stripped himself down and went for a swim in December. He was having such a good time we didn't have the heart to stop him. Oh well, guess I'm not winning a Mommy award for that one.
Friday, December 7, 2012
We were told ahead of time that Dr Kavarana is very meticulous. The Cardiologist told us that after completing the procedure the Dr K would inspect his work with a scope to insure that he was satisfied with the repair. After doing this, he decided that a portion of the valve repair was not to his liking. It was acceptable and could be left as it was, but it may require a touch up at some point in time. Rather than leave it that way he wanted to correct it. This would take an additional 2 to 3 hours.
The surgery was complete around 7pm and Brinkley was sent back to PCICU (Pediatric Cardiovascular Intensive Care Unit). We got to see him around 8:30pm. He was still under anesthesia and on the ventilator. They will keep him somewhat sedated for another day or two and he will be worked off the ventilator sometime tomorrow. He has a little fluid around the heart, which is fairly common with this type of procedure, and they were working to drain that when we saw him. Please pray that they will be able to get this under control quickly.
Thank you for your prayers today and keep them coming. We still have a long road to recovery and hate to see him covered in tubes and cords. Slowly but surely we should start seeing the cords and tubes disappear.
Due to the fact that he was going NPO and we are going to adjust his feedings after surgery, Dr Spencer (the attending Dr in this unit) said to give him as much as he wanted whenever he wanted it yesterday and last night. I did, and boy did he eat. I was quite surprised at how well he did! I believe that I will have one chunky monkey after his heart is repaired and he can catch up on all that he was missing!
He had several Tet spells yesterday, but none through the night. Hopefully, in a few short/long hours that will be a thing of the past. No more Tet spells for him.
Bryan is on his way back here with Reese. Please pray for safe travel for them and that Reese will be good for Jordan and her roomates today. They have graciously offered to take care of him for us. If all goes well, we plan to take him to James Island to see the Christmas lights before he goes back home on Sunday.
Please be in prayer today. Pray for Brinkley to be strong. Pray for Dr. K (I have no idea how to spell his name) who will be performing the surgery. Pray for us as we wait it out and then learn how to care for Brinkley and his fixed heart.
We have asked our families to stay home and pray for us from there. We want to have all of our attention focused on Brinkley and the team caring for him. Don't worry about us though. The wonderful people at Cross Bridge are making sure that we are cared for while we are here.
With that said, if you are looking for deserving places to make year end tax-deductible gifts, please consider giving to either of these organizations in honor of Brinkley:
Thursday, December 6, 2012
|3 months old|