March 29th 2010

March 29th 2010 (136 days old)

TanaLee is now getting settled in from being transferred from OHSU to Seattle children's Hospital. The Hospital is SO BIG and its all devoted to just children. Seattle Children’s Hospital truly an amazing hospital. Today the liver doctor was sent to SCH (Seattle Childrens's Hospital) to speak with us.

The liver doctor said that TanaLee's situation is worse than he thought it was. Simon (liver- doctor) is planning on doing a liver biopsy within the next couple of days or so. The liver biopsy should tell him if there is anything he can do to save her liver. After assessing her Simon feels that her liver disease might be irreversible. Simon is leaning toward the liver transplant. Simon said that it does not matter how big she is to get a transplant, the only thing that is needed to get a transplant is a liver that is the same specifications as TanaLee's.

The Attending baby doctor Dr. Batra says, that OHSU's goal at the time was to get her ready for release from the hospital; which was at the time best for her. TanaLee was doing well for a short time so things seemed hopeful for a hospital release.

Her liver Damage did not stop after being taken off TPN (a nutrition supplement) and even raised DRAMATICALLY after being taken off of it as well as her billy ruben numbers.( jaundice). The doctors at Children's do not feel that the lipids of TPN are causing the problem. Not only was her liver damage getting worse from her dumping, she also began do develop a disease called Osteoporosis. She now has been so malnourished that she has multiple bone fractures in her ribs. Her ribs have been trying to heal so she has pearl-like structures on her ribs. She also has not grown for about a month. She not only has Osteoporosis but her body has been using its reserves of energy into getting her nutrients from her other organs. The Liver specialist said that TPN is not what caused her liver problems. So he is having her put back on it which should give her proper nutrition, and it will help her grow and develop as a normal as possible. Dr. Batra said that her Osteoporosis is reversible with proper nutrition.

OHSU extibated Tanalee from the ventilator on March 13th 2010. TanaLee has been struggling to breathe since her Girth is so big there has been a lot of pressure on her lungs. By the time Seattle Children's Hospital got TanaLee, her blood gases showed that her CO2 was 90. We found it was because of the plane ride and extra stimulation that probably caused this. Normally her CO2 is a critical stable 70. Dr.Batra does not except anything over 50.

Another reason why TanaLee has not been growing because she is not only getting very little Nutrition, but the small amount she does get is being immediately worked off because of her breathing so hard. So Dr. Batra has made it a goal to Intibate her to the ventilator again within a couple of days. He says that her chronic lung disease won’t get worse... but it will actually improve because of her growing. He feels that growing is the best cure of all.

Dr. Batra's goal is to make her grow as much as possible and make her as well as can be until Simon does the work required to make her liver better. Here are some pictures of our stay so far.

This is the Ronald mackdonald room that we are staying in. This place that we stay in is huge! think of a Embassy Suits hotel... its that plus a bit more.lol Just not the Pool:-(