Rowan had a great day at therapy. Here are a few pictures...
This is the last time I am going backwards.
I watched a video of a physician in Iraq discussing how his blog helped him to remember so much more- even his children's birthdays. Also a friend had mentioned that you can make a book of your blog- pretty neat too.
A friend of ours from Austin has a little son with BA receiving a liver tonight. I spoke with her and it brought back a lot of memories from when we were in that same position.
So here goes--- for the last time. I don't want to forget some of those moments...
Rowan was such a trooper after her Kasai procedure. She stayed in the ICU for only 2 nights. We slept in the Austin Ronald McDonald House those nights, and that was the first time I had ever spent the night away from her. I remember it was so horrible the next few days because Rowan wasn't allowed to eat. For three days she was miserable. They allowed her pedialyte- and she Hated it! Then they allowed her Pregestimil formula- and she Hated that even worse! Rowan was only breastfed at this time, so she wouldn't even think about drinking the above mentioned. Then she kind of developed an oral aversion, but when we got back home, she settled into her regular routine. I remember she had some issues with pain control, so we called and got her a prescription for Tylenol with Codeine. (less Tylenol for her bad liver). After about a week, you couldn't even tell that she had had surgery.
From the middle of August to the middle of October, relatively nothing exciting or traumatic happened. We had many Drs. appointments, labs, and fights with medication all to learn that her Kasai procedure was a failure.
On Oct. 27th Rowan was hospitalized. She had been running a low grade fever and acting somewhat different. When we went in for labs, her white blood cell count was 21. This indicated an infection and we were admitted to Dell Children's Hospital. The following days were spent receiving IV antibiotics. She was discharged home on the 30th with a picc line and home health would assist us with supplies for IV antibiotics. I remember having the hardest time deciding if she should get that picc or broviac. They said she only had one good vein, and if they missed for the picc, she would end up with a broviac anyway. They got it, but she was traumatized. I remember how red and swollen her eyes were from crying and screaming the entire time. At Dell, they do not ever give any pain/sedation medication for those types of procedures ... I HATE that!!!
When we got home, there was a traumatic picc line dressing change by home health, and then she developed ascites very quickly from the amount of extra volume in the IV antibiotics. In the hospital, each antibiotic was 10ml. What we were supplied with were 100ml doses....
For Halloween, she was a little ladybug. She stayed out on the front porch for two trick or treaters, and then was out.
So with our ascites we went back to the hospital on the 1st of November. She was uncomfortable and miserable.
Rowan was admitted and they gave her a medication by mouth, but no IV diuretics.... It never really did anything and they would just increase the dosage of the oral medication. I guess she got a little better, but I remember them telling us that the ascites may never go away and that her stomach would remain very large and swollen until she was to receive a transplant. We weren't even on the list! I felt some comfort in knowing that our appointment at Texas children's was on the 8th of November. We had hope. We were discharged on the 7th and headed to Houston the following day for our evaluation.
When we arrived for our first phase of the evaluation process, an echocardiogram, the nurse escorted us to the emergency room because Rowan's picc line was oozing blood. After lab tests, it was determined that Ro's INR was too high. Her blood was not able to clot efficiently like yours and mine. Her liver was failing her. She received very high doses of vitamin K to help with her coagulopathy. It didn't really help, so she received FFP. (fresh frozen plasma) Unfortunately, this didn't help either. Chance and I were beginning to become distressed knowing the only thing that would fix this problem was a new liver...
One thing that did get much better in Houston was the ascites. They gave her IV lasix and albumin and she responded so well. The first few times after she got those doses, her diapers couldn't hold- way too much fluid for those pampers. Her stomach did get smaller and softer. She was so much more comfortable and happy afterwards.
While we were there, Rowan received her battery of tests to complete the liver evaluation process. This was exhausting for her- so many procedures.
Our Houston team told us that the best predictor for positive post-transplant outcomes was nutrition. They placed a feeding tube, and we attempted to tube feed her at night. Those were some of the worst nights of my life. She did not tolerate the tube feeding and would literally wake up every hour throwing up. We tried different rates, different concentrations and nothing worked! We basically had to give up and move on to TPN (IV nutrition). We started at 12hours per day, then 18, and we were in pretty good shape to go home. Little did we know it wouldn't even be a full week before she was on for 24hours.
She was approved for liver transplant on November 19th and we left the hospital on the 20th.
Short lived stay at home... Rowan's breathing became difficult and her ascites returned. We rushed back to the emergency room in Houston (the very scary ride I have already blogged about) and were re-admitted on the 23rd of November. Rowan could not maintain her bloodsugar when she was off of the TPN, so she was then changed to 24hour TPN. Another sign her liver was failing.
Our Houston team deemed that she was too unstable to be home, so we bought a stay at Texas Children's until we were to receive a liver.
Her picc line was accidentally pulled put during a dressing change, so she had to get yet another one--- but she was sedated this time.
Now, she was getting so ill that she couldn't hold anything down. She would literally throw up anything that would go in her mouth. Her physician discontinued practically all of her medication except for a few very essential drugs. I would give her minuscule amounts around the clock to keep those important meds down. I remember wondering how long would it take for our new liver to arrive.
Unfortunately, because of how small Rowan was at the time, she was not a candidate for a living-donor transplant. And a segment from a deceased adult liver would be too large. Rowan's liver would come from a small child who had passed away. The disturbing truth is that a majority of livers come from children who were victims of child abuse. Upon hearing this, my heart literally broke. I felt like praying for Rowan to have a liver was practically like asking for another child to die or to be abused. Remembering that God has a perfect plan for everything and everyone we pressed on.
Thanksgiving came and went.
Chance worked full time, came to the hospital when he could, and I stayed at the hospital with Rowan.
I distinctly remember the following events. I was reading a hospital magazine discussing the liver transplant of a child who had GSD4. I remember praying and asking God, "Where is our baby's liver?" A few hours later, the nurse handed me the phone and a coordinator on the other end of the line let me know there was an outside chance that Rowan would receive her perfect gift. The famous quote was always, "no news is good news." It was a very cautiously optimistic feeling that I felt. Chance was in Austin, so we were trying to coordinate him coming to Houston, but we didn't want him to miss work in case it was a false alarm. And we continued to hear no news. Rowan had more lab work and tests done to ensure she was healthy for the surgery. We decided to have Chance make the trip. I slept, but not really- I was awake the whole night praying and hoping that we wouldn't receive a call to tell us it was a no go. At 5am we called our parents to come to Houston, my mom was already there at the time. That morning felt so surreal. We proceeded to pre-op and couldn't believe it was actually happening. At 7am on November 29th Rowan received her new liver. Our angel donor was a two year old girl, but she was not a victim of abuse. Words cannot express the flood of emotions we felt. What a faithful and loving God- our prayers were answered. The next few hours flew by so quickly, and before we knew it we were talking with the surgeon discussing how the surgery went.
From the beginning her new liver has never faltered. Her new liver number have always been perfect. Rowan turned from yellow to pale white in less than 24hours and all of her horrid lab numbers were behind her.
And that is just about the time I started this blog.
Talking to Chance, I explained that I really wanted to write this all down, to make sure I didn't let any details escape my memory, to show Rowan a story of how strong she is, and how far she has come. She has been poked and prodded since her birth, and she's not finished with that yet. But the worst is behind us, and there are only sunny skies from now on. We may have a few gray clouds here and there, but I believe that God has delivered us from the thunderstorm.
What an amazing life story she has to tell...
