Almost a Yr old..Birthday at the hospital?

Well It has been a busy last few weeks.

After our last post, Madeline went home that Saturday. They taught us how to give her the IV Antibiotic she needs at home so that she would be able to go home and enjoy life there. Saturday and Sunday she did so so but seemed to be puking a lot and having a lot of diarrhea. She ended up being miserable on Monday in a lot of pain, crying , ill, etc so the Dr. did a direct admit into Rainbow 5th floor.

The Doctor's think that Madeline was having a reaction to the antibiotic she went home on (Lanasolin or something like that). So they returned her back to the vancomyacin but pre treated her with benadryl and tylenol to keep that red man's syndrome away. She ended her round of antibiotics on thursday and the plan was to go home after that. In  the meantime Gastroenterology wanted to try her on a new formula with higher caloric value. We tried Pentamen .

Thursday night she was miserable. .more diarrhea again..wretching. etc.. we thought the pentamen was NOT working (she had only been on half strength at that point). It got worse when she started getting fevers. SO ..Friday we started her back on Neocate infant (her original formula) and we kept an eye on her progress. She spiked more fevers and was pulling at her ears- they thought maybe she was having an ear infection or had just caught something randomly.

at 12 am Saturday (today) -They informed us that the precautionary blood cultures they pulled on Friday during a fever tested positive for Gram stain positive staph (But wait weren't we just finishing treating her for that infection?) -They told us that we would have to wait and see what else grew to determine if it is the same infection or a different one, We will also need to draw new blood work from her line and from outside her line (so this means sticking her in the arm .. which has a history of being an issue since she's such a hard stick) to see if the infection is truly in the line or in the blood.

At 5 am she woke up screaming in pain and inconsolable. After 15 min we sat her up and she tried to puke but was unable to so instead she just sat there wretching and crying . Also spiked another fever. She finally settled down then woke up again at 7 am.. same thing.. Fever got up to 101.8..we gave her some tylenol and she calmed down a bit but this is DEFINITELY not how we were not expecting things to go this week.. we thought she would be on her way home saturday.

After more discussion with the infectious disease team they told us that her infection is likely one of 2 types of Staph infection, it could be the orginal one that we had been treating that may just have mutated or dug into her line and has become resistant to antibiotic (coag negative staph), which would need to be treated again..either vancomyacin or linasolid (antibiotics) or it could be Staph aureus which is antibiotic resistant (also known as MRSA) from medicinenet about this type of staph: "one example of a so-called "superbug," an informal term used to describe a strain of bacteria that has become resistant to the antibiotics usually used to treat it. MRSA first appeared in patients in hospitals and other health facilities, especially among the elderly, the very sick, and those with an open wound (such as a bedsore) or catheter in the body. In these settings, MRSA is referred to as health care-associated MRSA (HA-MRSA)." In this case they would need to remove Madeline's medaport line IMMEDIATELY as it could become very serious in terms of damage to her. If she has the other type, we would still give consideration to removing it because we are told that it is very rare that after 14 days of treatment with antibioitcs the Coag negative staph does not go away- which would indicate it too may have become antibiotic resistant.. so our guess is WE ARE REMOVING THE MEDAPORT LINE! ..which means.. .SURGERY!. .AGAIN...

to make matters more complicated she will probably still need treatment with antibiotics but the one she is currently on (Vancomyacin) does have the ability to cause kidney damage. Ideally the levels they are using in her situation would not cause this to happen but we have to be careful. Also- the only other option is the one she already had which we believe she had a reaction to. Then we start looking at ones not yet approved for children which is a whole separate issue.. ..


As you can see things are pretty complicated here.. and the chances of her getting out for her birthday are pretty slim. .4th of July this year is looking almost as depressing as last years 4th of July (the best and worst day of our lives).

However, we know we must trust God and his plan throughout all this and as difficult as things seem it can always get worse. Some of the positives we are thankful for and holding onto:

A very responsive nephrology and Gastroenterology team that is aware of our needs and madeline's needs and takes our thoughts seriously.

Madeline is being assessed for a waiver program and may get in that would allow us to have in home nursing possibly 8 hrs a day (we are really hopeful for this because when she finally gets home that would give a lot of relief).

Her appt with Columbus Motility clinic is set! July 24th! (just pray she is out of the hospital by then). Hoping to get some answers about her motility and feeding intolerance issues that day

Good friends and family. .where would we be without your support?


GOD.  enough said. he is the reason we can get up and keep going everyday- knowing he is holding our daughter in his hands and that he has a plan for our family..


So while it feels like we are continually being sucker punched left and right and feel like being home for more than a week is a far and distant dream from ever happening.. we hold hope that there WILL be a light at the end of the tunnel.. and all the doctors tell us this is true and that there are tons of other kids with similar situations now 10 yrs old having pretty normal lives.

Pray for us to keep a positive outlook and to be strong. I can admit when I am feeling weak and this is one of those times. .


God Bless everyone!