Yesterday Logan had another procedure to modify his feeding tube also called a G tube. He had been taking some formula by bottle and the rest was being given in the feeding tube. Over the past month he has had a lot of upper airway congestion that was treated as pneumonia. His symptoms didn't resolve with two courses of antibiotics. Unfortunately they worsened. He has had trouble breathing and has been coughing up white/yellow gunk! So now he is on nebulizers (medication that he breathes with the help of a machine).
We have been told that his trachea is a little weak and that he aspirates (food/secretions go into his wind pipe). He also continues to have reflux. The thought is that he may be apsirating his reflux and that may be causing his difficulty breathing. So we decided with the GI doctors to have them place a GJ feeding tube. He was going to have his original feeding tube changed to a Mic-key button. This is a different type of feeding tube that is easier for kids because it is smaller. So when it was time to change his feeding tube to the new one they added the J part. This means that he has one tube in the stomach and another tube in the jejunum (upper part of the intestines). We feed him through the J tube at a slow rate over 18 hours per day. He can't get the feeding quickly because the intestines need time to absorb the food because we have bypassed the stomach. We give his medications through the G tube.
The hope is that his reflux will lessen. We are also planning on holding all bottle feeding for the next month and following up with GI in one month. If symptoms improve then we will have to decide if we can reintroduce the bottle. If they don't improve and it is in fact the reflux causing his difficulty breathing we may have to procede with a surgical option to lessen the reflux.
In the meantime we have a swallow study at Gillette Children's Hospital tomorrow morning. The speech therapist ordered this to evaluate his swallowing after going through a round of therapy called vital stim. We also see a new pediatrician who is specialized to treat special needs kids at Gillette Children's on January 19th. The hope is that this physician will be able to act as the gate keeper for Logan and help us coordinate all of his needs.
We are also in the process of applying for various programs to help Logan with his care including equipment and possibly PCA/nursing care if indicated/needed. We have a social worker that will most likely become his case manager that will help us navigate that end of the system.
When it comes to a diagnosis we are hoping to hear from Mayo Clinic any day. They sent his skin biopsy to Baylor College in Texas to perform more Mitochondrial testing.
All in all, Logan did great with the procedure. He gave the post-op nurse a run for his money. He came back to the room very fussy and upset and was wiggling all over! The nurse was a little overwhelmed with all his movements. I had to laugh and smile because it is always great to see Logan express his feelings even if they are feelings of displeasure. We made it home and the feedings have been going well. I was overwhelmed with all the new changes and just about had a melt down! Joel as always just rolled with it and has had no problem. Thank goodness he is so laid back and patient. He keeps me grounded. Lauren has been great too. She likes to help us take care of Logan. Tonight she was pretending to feed him while he was in his high chair. He just loves to watch her play. They are so good together. Thank you to everyone for the kind thoughts and prayers over the past couple of days.
Go Team Logan!!
Lots of love from the Zacher Clan
Go Gophers!!
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