Things are changing so fast that we do not comply with the letter
I try to summarize the last 4 days or less chronologically.
Marie-Therese was discharged from the hospital on Wednesday afternoon.
She had terrible pain in the pelvic area, could hardly sit and go.
Even pain pills do not work really.
On Thursday, she had all day and night temperature rose to 38.5 degree fever. This was to come back in the hospital as unusual and worrying, so she had to control. To rule out any infections, the doctors would have liked to have had a drop of blood from her, but she would not even let a finger down. Now she takes
a preventive antibiotics 3 times a day. The pain may be after a very slow, they can already "normal" to go, but climbing stairs is still a painful, like sitting or lying.
One of the two injection sites had yesterday (Saturday) not looked quite as good, but slowly grow the two small holes to.
Meanwhile, I have heard of the assistants in the operating room nurses that visible while in the skin only a puncture, but by moving the skin is repeatedly stabbed in various parts of the pelvic bone to the necessary amount of bone marrow taken from. Therefore, the wound pain is understandable.
When Philip has steadily downhill since Wednesday. This corresponds in principle to the protocol designed to but still spectacular.
The WBC have halved every day since last Saturday, 13,000 on Saturday at 7500 on Sunday, up to 250 on Friday. Yesterday (Saturday) it was 0.1 - that is practically zero. Today is Sunday - the first ray of hope them to grow and increase to 0.19. Every Monday we checked in a special process whether it is his old or his new cells. Because our children have different gender one can see the light of the XY chromosomes.
All other blood values but are confused.
Philip began responding Wednesday to a lot of necessary drugs. First, the immune blocker that is necessary in order to prevent rejection. We then tried the drug but not the veins of the stomach to give, as is usually the allergic reactions are not as strong. Therefore, the probe, because swallowing from Friday / Saturday will probably not be possible. When Philip
it was different, the reaction to the drug in the stomach was much more violent.
red itchy patches all over, heat attacks and while shivering, the circulation mess, headache, and nausea.
an antidote worked relatively quickly, but it was gruesome hours.
Now he gets another immune-blockers which he tolerates well. Just because even the name "Prograf" So for the count. ;-))
But he has an allergic reaction to an antibiotic on Thursday genauo now necessary. Now try it with another agent and an antidote that is administered before, etc. .. The morphine dose was
daily since Wednesday increases, but is not (yet) in the acceptable range, say the sisters. Merhmals day he can give himself a bolus by pushing a button, which is an additional booster thrust. The machine keeps track of how many such bolus but it is limited, and the daily dose and the interval between the additional shares. Nevertheless, responding
Philip several times daily with a violent allergic reaction.
Hot head, red ears, cold fingers and toes, chills, nausea, high temperature, red itchy patches to awful in all parts of the body. We try different creams to relieve the itching. Philip is very brave, but sometimes he is losing patience because the pain too soon to be bad.
Until he notices the nurse or doctor to examine and a cure is complete until the drug works and relieves the reactions in such a process takes around 2-3 hours.
The last few days it was usually in the evening, always go home if I wanted just to clock 20:00.
Phil is very proud of his feeding tube, and sneezing is not many a ghastly thing-tasting drink to sound special. He is also very careful to not break, because he knows that this mithochkommt the probe.
covered with the blood values, the Tromozyten, these are the platelets. Thus it tends to bleed easily. On the skin caused red dots. The mucous membranes
have passed almost completely through Saturday. Flows from the mouth of bloody yellow phlegm.
lie by the few and the food has stopped the bowel to work.
same time pushes the stomach. We try it first with Zäpchen then it is but an inlet. The result is quite bloody. From the mouth of bloody saliva flows. The cheeks are swollen all feeling in the mouth is gone.
In the night from Saturday to Sunday, it happens.
has accumulated blood in the stomach. Blood can not digest the body itself, which collects in the stomach until it passes. At about midnight, then a portion of Ordet and come up with it - clear anyway - the feeding tube.
Thereafter there was an emergency measure a Trombokonzentrat in the veins - they are darurch somewhat increased but still far below normal, is probably still as a yellow blood Ackerman. At dawn, Philipp
has again thrown up some portions of blood.
But you have but the cause of the allergic reaction found. It is probably the morphine. Now he gets a cure but the analgesic effect of morphine is not affected, however, relieve the side effects. This means it is
but only for swallowing, is now stupid without probe with open mouth and throat mucous membranes. Bravely endures but Philipp these torments.
And we hope - get the WBC ;-)) they ensure safety on, and with increasing WBC, it is the body relatively quickly better. There
New gavage it first, because they are not through the open throat mucous membranes can be introduced. So it is now standardized to swallow, which is currently not possible. Even those parents
report on the station, situated a few weeks before us in the schedule that the kids about 2 weeks nothing, absolutely nothing to eat and drink.
This is not serious because the body is supplied with nutrients via the veins, but gefähöich for the intestine. This has nothing to do, and thrives on Bacteria and fungi that want to be busy, and can occur because of the location while silly ideas. This could be potentially hazardous under certain circumstances.
should also Philipp train his lungs. Through the many and are the least physical activity are not supplying the lungs to the recent peaks. This creates the risk of pneumonia. Therefore, the Spiro coach, but in the current state of Philip can not be used. He is much too weak to stand up straight and manages to pee. Now and then he sits up in bed, but that was already with physical training.
difficult situation when you pass neighborhood should do something but physically simply can not. Now we have to wait for the "fresh" WBC, things are more easier again, and hope that in the meantime, nothing bad with the bacteria. Fungi and viruses happens in the body.
You can still talk a long time from a successful transplant. Too many potentially hazardous phases remain to be overcome.
Next comes what is known as GvHD. This is a reaction of the new cells to the new home. Finally, the cells recognize the body of Philip as their own and not attacking him. As a health police they eat everything foreign. This can dissolve the skin, gets confused about the liver and some other organs crazy play. But to do more if the extent is.
Currently we are busy every day to reschedule who is, at what times for which child. Phil can be visited daily from 11:00 clock to go to bed by one of us. Marie-Therese tried it (Monday) morning with the first day of school and needs an afternoon care. In between, many things remain on the track. From shopping budget on food, maybe try to work, an organizational challenge. The communication and coordination is possible largely only through's cell phone, which is virtually impossible to telephone the hospital, due to hygiene measures. (See post from the past Week) In the evening we fall exhausted into bed to sleep but not because the head can not turn off.
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