The Good The Bad The Guessing

The Good:

Jimmie is not sedated any more.
He’s tolerating touch.
He’s tolerating small feedings.
He’s taking more breaths on his own.
He’s having less desats and bradys.
The Ventilator settings (pressure and oxygen)have been moving “down” not “up“.
Testing confirmed he does not have an anti-clotting disorder.

The Bad:
Jimmie is still bleeding.
The bleeding has not really improved.
He is still aspirating blood. (breathing blood into his lungs)

We are trying really hard to be thankful for the good right now as anything positive is encouraging. So lets thank God for the good.

We are really frustrated and somewhat discouraged that he is still bleeding. The reality of his situation is until he stops bleeding there is not much to be done. His Doctor is concerned and seems to just like to take it one day at a time.

What is most frustrating about this situation is we are stuck chasing Jimmie’s symptoms and unable to identify a cause. There are 3 typically un-invasive ways you might try to find a bleed that is leaking into the trachea and lungs.

1. MRI this cannot be done for 2 reasons. A. Jimmie is unable to hold his body temperature outside his isolette for any length of time. A few minutes maybe, but not much more than that. B. Jimmie is on the ventilator and cannot safely be extubated because he is still bleeding into his lungs.

2. CT Scan- there is significant research showing that preemies who have undergone a CT Scan have a greatly increased risk of brain tumors because of the radiation. This risk outweighs the dangers of his bleed right now.

3. ENT (Ear Nose and Throat Specialist) Their instruments for visualizing are way to big for Jimmie’s little body. They would cause damage that would do more harm then good.

So what we all really want is for the Doctors to find out where Jimmie is bleeding from and why and they have pretty much made it clear that is not possible. If this bleed were to become immediately life threatening I assume they would take more drastic measures to figure it out, but right now all of these measures carry risks that we and the Doctors are unwilling to take.

The Doctors best guess is that the bleed is deep in Jimmie’s nasal passages somewhere. I’m wondering where in the anatomy related to your nose, could you have a bleed that would drip only into your trachea, lungs and sometimes the mouth, but for the most part not go into the stomach? Because that is what is happening. Jimmie’s nose is very red and swollen presumably because of damage from the nasal cannulas and the feeding tube.

They are wondering if when they were messing with the feeding tube in his nose they caused a sore that is bleeding. There is a lot of back and forth going on between the Doctors, Nurses and us- Jimmie’s family. We are now affectionately being called- the “Family Doctors” by Jimmie’s Doctors and Nurses. We have countered that when the “event” happened Jimmie was obviously and suddenly in acute pain and then presented with respiratory distress. The feeding tube was put in his nose on Saturday. Nothing new was happening with his nasal passages on Monday when this happened in fact the feeding tube had been removed that morning and put back into his mouth! So to us a hematoma/vascular rupture of some sort makes more sense. Perhaps a blood vessel was weakened from the feeding tube. His nose was slowly swelling and then he received the blood transfusion which increased his blood volume and cause a rupture in the weakened irritated vessel. Jimmie felt the rupture when it happened and started crying aspirating the blood into his lungs. This scenario makes the most sense to me right now. Although I’d like somebody who is really good with anatomy to tell me where this bleed could be going into his lungs and not his stomach and that would not be at all visible by looking into his nose., but that could have been affected by the feeding tube. Mom keeps suggesting maybe the bleed is lower- like the tracheal area. The only counter to that is that in the crisis moment as they were intubating him- they carefully visualized that area. They saw blood pooling there, but not an obvious source. Perhaps it was too soon and they were working to fast . They were saving Jimmie’s life right then.

The Doctors and Nurses seem very reluctant to take the transfusion into consideration at all. They have not convinced me it’s unrelated though. I definitely would still leave that on the table as a possible contributing factor. And we are always reminding them of Jimmie’s sudden and acute distress. Which they always respond with - yeah, that’s just weird.

Anyway-- this is the kind of conversation that is going on constantly right now. They are doing 3 things right now to try to stop the bleeding.

1. They are keeping his Hematocrit in the upper 30’s (36 today) in the hope that this will help his body- in particular his liver to produce the clotting material for his blood. Preemie’s are underdeveloped in every way. So perhaps his liver is just not functioning quite where it needs to in order to clot this off.

2. They are putting steroids drops in his nose in attempt to reduce swelling. If his nasal passages are swelling and irritating or putting pressure on the place that’s bleeding they hope reduced swelling may help stop the bleed.

3. They are continuing the antibiotics and blood cultures in case some sort of bacteria has caused this.

Rachael said something this morning about them possibly giving him plasma which is rich with clotting materials. To my knowledge that has not been done yet though.

Anybody reading this blog who has any ideas please feel free to join us in trying to figure this out and come up with possible solutions. You just never know what a bunch of brains might come up with. (-: And I have no idea who all is reading this blog from around the world. Of course we have the up most respect for the Doctors who are taking care of Jimmie right now. They are- by far- the most educated and qualified. I think this really goes without saying. However they are honest about this being strange and abnormal. A lung bleed or an infection would be normal. It makes some sort of strange sense that Jimmie - who has been so extraordinary and unusual would have his first big issue be so UNUSUAL. However- we are really hoping this bleed resolves itself. If that’s the case this is much less dangerous than what is normal for micro- preemies- Lung bleeds and infections. His doctor stated yesterday that Jimmie’s journey up to this crisis had been nothing less than a miracle and really unbelievable.

We need a major miracle for Jimmie right now! If this bleeding does not stop. He is going to be in an increasingly serious and scary situation. Lord we ask for your mercy right now for Jimmie. Help this bleeding to stop! Give Jimmie’s caretakers wisdom and guidance to help him. Keep him strong. Protect him from infection and injury. Be with Jimmie and comfort him. And be with Rachael and Justin. Give them grace, wisdom and strength. Pray without ceasing everybody!

Love,
Amber

P.S. Yesterday I made it sound like Jimmie was having to recieve more blood because of his bleed. That is not true as of yet. They gave him more blood yesterday because his hematocrit had improved to a 33.2 after Mondays transfusion and they thought if Jimmie had pneumonia and a bacterial infection he would be able to fight it better if his hematocrit was closer to 40. This morning it was at a 36. They will watch this closely. Pray it keeps rising!