It's been a busy, but great, week with my baby home! There really are no words to describe how wonderful it is to have Bronson home!
It's great being able to begin a normal daily routine. Ours might be a little bit of a different routine that consists of medications, a daily IV infusion, Bronson pulling his NG tube out, normal baby stuff, cleaning and other household things. I'm really thankful for my nursing background because I'm sure everything would have been a lot more overwhelming without it.
Bronson will have to be seen at Sick Kids at least once every two weeks until mid October and then the visits should start to decrease. We had to go up today for blood work, but going up for an hour or two here and there is nothing compared to the time I have spent up there in the last 3.5 months.
Bronson has only been home for three full days but I've already noticed him starting to catch up developmentally. Due to how sick he was and being in a hospital for so long he is a little behind but we're working on it. His neck muscles are getting better and he's starting to be able to hold his head up a little longer everyday. I've really been working on trying to get him to take all of his feeds by bottle, instead of him bottle feeding and then giving the rest by NG tube. So far, yesterday and today, I've only had to top up his feeds by NG tube once! At the beginning of the week I had to give the remaining milk by NG tube after every feed... so it's progress! I'd love for his NG tube to be able to come out but one of his medications has to be given through it because it's such a large volume of fluid (almost a 1/4 of each feed). But, hopefully in a month or so he'll be able to tolerate larger volumes of fluid and it will be able to come out for good!
I really can't express how great of a week this has been! I think all week I've been smiling non-stop! I love our family all being under the same roof!
"Because he loves me," says the Lord, "I will rescue him;
I've waited 15 weeks for this day and finally it's here - Bronson came HOME today!!!!!!!!!!!!!!!!!!!!!!!!
Walking out of the hospital with our little boy in his carseat felt sooo amazing! I couldn't stop smiling! I honestly felt like this day would never come and here we are ready to put Bronson down for the night in his very own crib! Well, I'm still trying to decide if, for peace of mind, a playpen set up beside my bed would be a better option for his first night, but regardless of what I decide the most important thing is that he's home!
Our first stop was at my parents house where Kallie was for the day. Over the last few days whenever she has seen a baby in public she starts yelling "baby, baby, baby". When we brought Bronson into my parents house she ran over and started yelling baby and tried shoving his soother in his mouth! All night she's been bringing over anything that is his (soother, blankets, diaper bag, bottle) and has been piling it up around him. So far, she's a good little mother!
I know I'm going to be busy with two kids 18 months and under, but nothing will compare with the craziness of juggling home life with hospital life for the last 15 weeks. Now that Bronson is home we will be able to settle into a routine and feel "normal" again. I will honestly try to put up pictures this week of Bronson. I've been meaning to do that for a while but I've been preoccupied!
Our life as a family of four officially starts now!
As I was ordering my omelette this morning in the cafeteria at Sick Kids someones stroller caught my eye. As I was checking it out and thinking that I have the same stroller but haven't been able to use it yet, I suddenly realized that the child in it was Kallie! My husband, Jon, and daughter, Kallie, came and surprised me!! It was a GREAT surprise because I've been getting SO bored here and needed a distraction.
We were able to get a day pass for Bronson and we took him out of the hospital for the very first time! I've waited fourteen weeks for this day to come! Taking him home would have been better, but out for a two hour walk is good enough! Both Kallie and Bronson slept the entire time we were out and it gave my husband and I a chance to catch up.
It's been quite the journey to get where we are today but as we were walking outside with both our kids the last fourteen weeks seemed to become a blur. The constant worry of Bronson's health faded away as we walked the streets without an IV pole, O2 monitor, oxygen tank or any other attachments. It's wonderful being able to start experiencing all the firsts of adjusting to a family of four. :)
Well, Bronson's had a great week so far. His liver is working the way it should and his new seizure med seems to be working.
It was only two weeks ago that we really started trying to bottle feed him. In the past we tried to get Bronson to drink from a bottle but his fast breathing always got in the way so, he's used to getting his milk through his NG tube. Over the past week he's worked himself up to getting about half of each feed by bottle and then the remaining amount I run through his NG. He's slowly getting there!
I was told today by the doctors that Bronson should be able to come home next Tuesday or Wednesday! They're changing one of his meds this weekend (it can only be changed 30 days post transplant, which is Sunday) and then they need to monitor him for 2-3 days to watch for side effects but, then he can come home!!
I've been staying at the hospital with Bronson for a week now so I haven't had a chance to post any updates this week. Sorry!
It's been a week of ups and downs. Tuesday we were told by the neurologists that they did not think that Bronson was actually having seizures and that the "episodes" seemed to only occur when his magnesium was low. So, he was taken off the anti seizure meds. On Wednesday, less than 24 hours later, Bronson had 9 seizures in 25 mins and had to be put back on anti seizure meds. Needless to say, the dr's now believe that his "episodes" are actually seizures. We were then given 3-4 different possibilities of what the cause could be but we were also told that sometimes the cause is never found.
Wednesday morning, before the seizures, we were told that Bronson could come home Monday (tomorrow) or Tuesday. But, Thursday morning we were told that probably wouldn't be happening. I was SO disappointed! The new anti seizure med Bronson was put on can take a minimum of 2-3 days for the correct levels to be reached in his blood stream. So, the only thing really keeping him here in the hospital is waiting for this new medication to reach the expected levels. But, it sounds like this week is still a possibility for him to come home!
As I sit here in the hospital room watching Bronson sleep peacefully and Kallie snoring in her stroller I feel blessed. Blessed to have such a wonderful little family and blessed to hopefully have Bronson home this week. We're in the homestretch now!
We got GREAT news yesterday! The MIGB scan from last Friday (bone scan specifically for neuroblastoma) showed absolutely NO evidence of neuroblastoma anywhere in Bronson's body! Even the primary site, the adrenal glands, were free of tumors!! His cancer markers are also both completely normal! So no need for any more chemo or treatment, only monthly check ups! It's amazing how far he's come and how God has been with him, and us, every step of the way!
The results from the biopsy of his old liver came back and there was no evidence of any tumor left, but the entire liver was necrotic. I asked the dr how long Bronson would have lasted with his old liver and he said probably not very long because of how dead it was. Thank God everything worked out when it did!
I previously posted that the doctors had thought that the seizures were from something called PRES, but the MRI from last Thursday ruled that out. So, today he's supposed to start a 24hour EEG with video monitoring, which I'm hoping is normal.
I've been staying at the hospital with Bronson since Sunday now and it's been great to be able to spend 24 hrs a day with him but I miss my bed! From talking with some of Bronson's dr's it sounds like he's going to be able to come home next week!!! I thought this day would never come and now possibly only 1 week left to go!
This past week we've been waiting patiently as Doctors have been running tests and imaging in order to try and figure out the cause of Bronson's seizures.
This is what we have been told by each of the different doctors:
Neurologists - They did an EEG and it was normal. Even though Bronson was started on phenobarbital (anti-seizure med) if he did have epilepsy, or any other neurological disorder, there would have been unusual results. They would like to do a longer EEG this coming week with video recording to try and capture both the brain waves and a visual of what happens when he has a seizure.
Oncologists - From a CT done on Wednesday it showed a change to Bronson's bone density in his skull. Although the CT showed no trace of a brain tumor they were wondering if the neuroblastoma, even though one of his markers are normal and the other almost normal, had spread to his bones. Bronson had a MIBG Scan done on Friday and it showed that there was NO evidence of neuroblastoma in the bones! Thank goodness!
Liver Transplant Dr's - From what the CT scan that was done on Wednesday showed they told us they think he has Posterior Reversible Encephalopathy Syndrome (PRES), which is swelling of the brain. However, it IS reversible...so that's a good thing! Bronson had an MRI done on Thursday to confirm the diagnosis of this, but I still haven't heard from the Doctors if this is what he has for sure or not. It can be caused from different medical treatments from cancer and/or transplant, both of which he has had.
We always get stuck with Bronson getting tests done on a Thursday or Friday and then we have to wait until Monday to get the results. At least they were kind enough to tell us on Friday that the cancer had NOT spread to his bones! I would have been furious if we had to wait all weekend for those test results! So, to me, it sounds like the doctors are leaning more towards PRES as a diagnosis.
On the bright side of things Bronson was moved out of the step down unit and into his own room! That means he's stable and no longer requires one on one care from a nurse. It also means that now I have to be at the hospital a lot more in order to help with care. All of the rooms on the floor are private ones and have a place for a parent to sleep and a private bathroom with a shower. So, tomorrow I will be heading up to stay with him... hopefully, this also means that he will be able to come home soon!! I don't think that 2 weeks would be an unreasonable time frame.... I wonder if the Dr's would agree with me!?
The majority of people like to have a plan. According to Wikipedia a plan is, "typically any diagram or list of steps with timing and resources, used to achieve an objective." Before Bronson was born we had a plan that went something along the lines of paint the baby's room, set up furniture, buy clothes/supplies, time contractions, don't wreck the car with water breaking, get to the hospital on time, have baby, bring baby home and have endless nights of no more sleep. Most new parents have the same agenda. However, in our case our plan changed quite dramatically once Bronson was born and we've been at the mercy of Doctors and the Health Care Team to make a new plan that, in the end, will have Bronson home with us.
A while back I received an email from a lady named Cindy. Cindy had originally heard about Bronson, when he was first born, at church. Weeks later she was googling about liver transplants and found my blog. She is expecting a little boy. They found out a little while ago that her son, due in November, has a urea cycle disorder called Ornithine Transcarbamylase Deficiency (OTC), which is genetic. The only cure for OTC is a liver transplant. Apparently, this is the first case Sick Kids has had where the medical team is planning a liver transplant before the baby is even born.
Once the baby is born he will be placed on the liver waiting list with the Trillium Gift of Life Network (they oversee all transplant waiting lists in Ontario) and then they have to wait for the call that they have a liver. If they are able to find a live liver donor before the baby is born they may potentially be able to have the liver transplant done shortly after he arrives. The problem with OTC is that the body's ammonia isn't properly disposed of, and as the ammonia levels rise it causes permanent brain damage.
The parents have met with numerous Doctors from Sick Kids and were given a Treatment Plan (click to see plan) for when the baby is born. They aren't sure if they are able to find out the baby's blood type before birth and that may hold up the transplant process a little bit until the baby is actually here. The baby, according to the parents blood types, will either have Type O or Type B blood and will hopefully will be able to have a donor in place before the he arrives so the transplant can be done as soon as possible. Once this baby has a liver transplant he will be able to process proteins and ammonia properly and will be able to life a healthy life.
I had the chance to meet Cindy this week while she was in Toronto for appointments. It was nice to be able to chat with someone who is also going through the process of liver transplant. Although, it would be wonderful if our families didn't have to go through this journey with our kids, but we can't change that. For both of our families, planning comes down to doing anything we can do in order to get our boys home from the hospital healthy.
Cindy has a blog, Counterbalanced Coquette, where you can follow their story and get in touch with them if you would like more information about being a live liver donor. Being an organ donor is VERY important to families who are waiting to receive a transplant. In Ontario you can become an organ donor by simply going to Be A Donor.
Bronson moved out of the PICU (paediatric ICU) today and back up to a normal floor! Woohoo!! That means we're one step closer to home!! He was looking great today... probably the best I've seen him yet! He was all smiles for me and I got some super cute pictures on my phone!
Bronson had a CT scan and an EEG done today to try and find some answers as to why he keeps having seizures. We should hear results tomorrow... so hopefully everything is ok... He's come this far so I'm sure there's an explantation for the seizures.
I didn't have my camera and memory card looked at today... I'll try and do that tomorrow and if they can recover any pictures I'll put post some on here! :)
Bronson has been breathing on his own without any extra oxygen since Sunday morning! Well, actually, there's been once or twice where he's gotten himself quite worked up and needed some O2 with nasal prongs but within an hour or less he was back to breathing room air.
Bronson was going to be moved out of the ICU today but, he's had two more seizures throughout the day and they want to observe him in the ICU a little longer. At first I was told it could be the meds he's on but I learned today they've been ruled out because his blood levels were fine. A neurological dr came by to examine him today and had a head ultrasound, CT scan and EEG ordered to be done... Hopefully we'll be able to get results from those tomorrow afternoon. The dr also had Bronson started on an anti-seizure med because he's now had 4 seizures since Friday night.
Bronson's colour is amazing... It just keeps getting better everyday! His abdomen is looker better and his incision is healing quite nicely! All we need now are for these seizures to get sorted out.
I know I said I would post more recent pictures buy my camera decided to short out yesterday and my memory card now says card error and all my pictures are gone! I frantically took it to Future Shop and the guy told me my card was definitely fried and my pictures gone for good. But, tomorrow I'm going to try taking it to Black's and see if they can do anything. I'm SO determined to get it to work because I haven't downloaded any pics to my computer since Bronson was 7 weeks old! I'm so mad that I lost the last 5 weeks of pictures! All the before and after pictures of his liver transplant are gone. I really really really hope Black's can do SOMETHING tomorrow!