The doctors have been maintaining McKenzie at the balance they
found at the end of last week, not wanting to change anything in
hopes that she would gain weight. For the previous 10 days she had
either lost weight or remained the same. This morning, however, she
jumped up .2 kg (meaning she still has to gain about 1 pound).
Hopefully, it is not water weight and she continues to gain. She is
beginning to understand her world and interact more and more, which
is great, but also a problem because she is increasingly become
more unhappy with her situation and fussy. I don't blame her (I
would be going stir crazy laying in a hosptial room for five
weeks). We are now doing everything in our power to try to make her
happy.
She did have a couple of complications since our last entry, where I explained that her doctor wanted her off her IVs and to not have to put any more in to save her veins for her later catheterizations and surgeries. First, she lost her arterial line, so they put in the IV in her head. On Saturday morning, McKenzie's central veinous line (PIC line) got pulled out a little and wouldn't work, leaving her with only the IV in her head. They attempted several times to insert a second IV, but were unable to do so. Luckily, they managed to get the PIC line working again, but it was still precarious. Sunday morning, she lost the IV in her head, leaving her with only the PIC line, which was of questionable integrity. This morning, the PIC line broke! She was without her IV heart medicines for over an hour and they were frantically trying to find a solution. Luckily, a nurse from the NICU was able to fix the PIC line and they verified it was still in the correct position. We are now extremely careful about moving her with the PIC line and holding her. We can't lose it because there are not many options left once it is gone since she has started showing signs of clotting where other lines and procedures have been done.
I don't know if it is a result of this morning's failure of the last IV or if it was planned, but McKenzie was switched to an oral version of one of her heart medicines. She only has one IV med left!
Thanks for the thoughts and all of the reaching out to us that you provided last week. We appreciate it and everything all of you do.
Mel
She did have a couple of complications since our last entry, where I explained that her doctor wanted her off her IVs and to not have to put any more in to save her veins for her later catheterizations and surgeries. First, she lost her arterial line, so they put in the IV in her head. On Saturday morning, McKenzie's central veinous line (PIC line) got pulled out a little and wouldn't work, leaving her with only the IV in her head. They attempted several times to insert a second IV, but were unable to do so. Luckily, they managed to get the PIC line working again, but it was still precarious. Sunday morning, she lost the IV in her head, leaving her with only the PIC line, which was of questionable integrity. This morning, the PIC line broke! She was without her IV heart medicines for over an hour and they were frantically trying to find a solution. Luckily, a nurse from the NICU was able to fix the PIC line and they verified it was still in the correct position. We are now extremely careful about moving her with the PIC line and holding her. We can't lose it because there are not many options left once it is gone since she has started showing signs of clotting where other lines and procedures have been done.
I don't know if it is a result of this morning's failure of the last IV or if it was planned, but McKenzie was switched to an oral version of one of her heart medicines. She only has one IV med left!
Thanks for the thoughts and all of the reaching out to us that you provided last week. We appreciate it and everything all of you do.
Mel
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